Shannon And Claires cuts for Shania

After the devastating news that shania had this disease called Neur-o-blast-o-ma a childhood cancer of the nervous system, something that we had never heard of before. The doctors told us that they would have to operate to remove the tumour that was attached to the inside of shania's skull, which was putting pressure on one of the main arteries in her brain. This was going to be a very delicate and dangerous surgery for shania. After Karen and I regrouped ourselves from the "every parents worst nightmare news", the doctor , Karen and I told Shania about the operation that she would have to undertake. The very first question that she asked was will they have to cut my hair? And when we told her yes , this was Shania's most devastating news, they where going to have to shave her head. She was so upset that they would have to cut her long beautiful brown hair! The surgeon realizing what her hair meant to her, said that they would try not to shave her head , but that there was no guarantees. After the operation, which seemed like an eternity for Karen and I. Shania was so happy to wake up and find that they didn't indeed end up having to shave her hair off after all !!!!

Shania after her surgery. She was so happy :)

But this was just the start of Shania's journey with cancer. Next she would have to undergo chemotherapy which would cause her to loose her hair gradually. We didn't know how to break this to her all over again! Julie Constantine, Shania's clinic nurse whom she loved dearly, helped us tell her that we would never lie to her and that her hair was going to fall out from the chemo that she was going to have to take. It was so sad to watch her hair fall out in clumps at a time . The only thing that she had to look forward to was that she could get a wig made from the hair that someone had donated. She was so happy the day that she got her wig., it meant so much to her! We just wish that the person that donated there hair could have seen the joy in shania's eyes when she got her hair/wig. We would have loved to been able to thank them for this selfless gift from heart! Shannon was there though, when Shania picked up her wig and she did see that joy in Shania's eyes, she knew what it meant to the big sister that she loved so dearly. Just this winter Shannon on her own, asked if she could donate her hair so that kids with cancer could have a wig like Shania did. Shannon has beautiful naturally highlighted hair. Karen and I knew that some child would be overjoyed with her special gift!

Shania and Shannon at the Hospital For Sick Children

About two months ago a young lady by the name of Claire Flynn e-mailed us, you might remember Claire from Shania's blog, She is the brave 21 year old woman skydiving in Australia with Shania's T-shirt on. She mentioned that she wanted to donate her hair to a child with cancer also and was wondering if she could do a fund raiser at Shania's fun fair to help with her cause at the same time. We thought that this was a great idea and asked Shannon if she would like to do this also. She said that she really wanted to do it for Shania. So if anyone else is interested in donating there hair also, we have checked it out with Lynn Wilson and Pam-Osorio-Kettle at SickKids Foundation and they said that they could set up a web page on there website and do there fund raising through that. Claire is going to Zambia, Africa in June to help build houses with "Habitat for Humanity" We hope that she can send us some pictures of her there doing this most worthy cause. If you would like to donate to "Shannon and Claires Cuts For Shania" here are there web pages at the SickKids Foundation. Claires is : http://my.e2rm.com/personalpage.aspx?registrationID=618280 and Shannons is : http://my.e2rm.com/personalpage.aspx?registrationID=617829





Thank you Claire and Shannon for believing in Shania's cause and giving such a thoughtful gift to these children.

Love,

Shayne & Karen

Lets make a difference together!

We had our last Committee meeting before Shania's huge annual fun fair, which is in less than two weeks away. There is a huge amount of work behind the scenes to set up this fun filled family day, but this is truly a labour of love for Karen and I. We have an incredible group of kind and caring people on Shania's fun fair committee, they take time out of there busy lives to help in Shania's cause. Karen and I would like to thank Anji Sharp, Janine Brauer, Jodi Folkes, Alison Lyon, Michele Ward, Terry Woods, Sandy Kerr, Nitsa Mangos, Robert Graup, Melissa Shorley, Lina Dinardo, Brenda Taylor, Heather Fornear, Adrienne Long, Sherry Coombs, Dana St Louis, Lynn Gomes, Paula Tobias ( Tim and Deb Fittler for Shania's Golf Tournament) from the bottom of our hearts for believing in shania's dream for a cure, which helps these children suffering from this dreadful disease. You cannot imagine what this hope means to these Children and there families. "Hope" is a powerful thing and without it there would be no chance for a cure. There are people that doubt that there will ever be a cure for cancer, but we have seen how committed the people at SickKids Foundation and The Hospital for Sick Children are in finding a cure for this childhood cancer. Everyone has been effected by cancer in one way or another, a spouse, a family member, a friend. To do nothing shouldn't be an option, this would be like turning your back on them and just waiting for the big C to hit you. They are saying that very soon 1 in 2 people will get cancer, this is fact not fiction. I've heard it being called the silent epidemic. But on the positive side of these facts are that we can turn things back around. Shania taught us a life lesson (: she wanted to be a teacher when she grew up :) that we should never forget and that is that anyone can make a difference, young and young at heart! We hope to see you and your friends at Shania's Sunflower of hope Fun Fair, lets make a difference together!

We will always believe in and love you Shania we will we will!
Love Shayne, Karen & Shannon

Shania's Sunflower of Hope Fun Fair (May 2nd 2009)

Shania's 3Rd Annual Fun Fair is coming up fast! Sorry I haven't updated in awhile, I said that I would continue with the last update, that was two months ago! (My bad) As my sister Danielle would say. This winter seemed like it never wanted to end, but I know that it's almost over because Shania's fabulous spring fun fair is only a month and a half away! We have been busy planning out this years fun fair and it should be better than ever. It will be missing one very special thing though. Shania won't be there!!!! We were so happy that she was able to make it to her incredible labour of love the first year, she had excitedly planned it out! She was in so much pain at that time, but you wouldn't have known it. She was so happy to be there with all of her friends having such a great time. She was all smiles. This is what it's all about, seeing the kids having so much fun, while raising funds for this important cause. This is all made possible by you and our incredible community/Province/Country that we have here. So many special people pulling together Volunteering your time to help these NB families save there cherished children. The pain these kids suffer is seared into my brain, how they are so selfless and try to hide it as not to make you sad!!! They just want to have fun and play, they don't feel sorry for them selves. They are truly the hero's and are so inspirational.
We are changing some things up each year to make Shania's Fun Fair better and better. Hopefully we'll get a sunny day this year and be able to enjoy the outdoor fun also.
Gotta go, Shannon is having a sleepover at my Dad and Sandra's place for two days during the March break, she's very excited!
Happy March break :)
We will always believe and love you Shania we will we will!
Love Shayne, Karen, Shannon & Whiskey

Shania's Sunflower of Hope Float

click on pictures to enlarge

It's a new year and we have so much to look forward to in 2009. Edward Chiu our website specialist has kindly offered to design a fresh website to match up with all of our other graphics for Shania's Sunflower of Hope Fund, so thank you for that Edward, we can't wait to see it. Last year at Shania's Fun Fair a fine man by name of Jim Sandford from the Markham Rotary Club asked us if we would be interested in having a float in the 2008 Santa Claus Parade ( they organize it every year and do an outstanding job of it if I may add ). We had no idea where we would be able to get a flat bed truck for the parade, but Jim mentioned that he might be able to check into it for us. He e-mailed us back that he indeed had someone. A company named Fairgreen Sod Farm owned by the Fairty family, said they would donate a 40 foot flat bed and truck for us to use in the parade and also a driver. We asked them if we could use there building the day before to decorate it in and Cam Fairty kindly said no problem. So now we set to figuring out how to decorate this huge 40 foot flat bed. A co-worker at my work does the Santa Claus float in Bradford and was of great help in giving us some ideas of how to go about designing a float, Wow I had no idea how much goes into designing a float, but it was fun, we knew how much Shania would of loved doing this. The only difference is that we wouldn't have been planning it out, she would of gotten out her home made clip board and have had it all figured out in no time flat, that was Shania, she had such a creative mind. She would have been bouncing around the house all excited about the Santa Claus Parade Float. I've got to go play hockey in our beer league right now, our team is named the Ice Pirates, I know Shania would have loved the teams name because her favorite movies were the pirates of the Caribbean. I will continue tonight or tomorrow about the parade, with pictures and much more!!! Wish us luck, we can use all the help we can get.
Shayne,Karen & Shannon

What a wonderful life

Hope you had a Merry Christmas and we would like to wish you Happy New Years. 2008 just flew by, so many special things happened this year Shania's Sunflower of Hope became an official Fund, her 2nd Annual Fun Fair, 1st Annual Golf Tournament, 1st Shania's Sunflower of Hope Float in the Santa Clause Parade, Shania's Sunflower of Hope fund being honoured in the Donor Hall At The Hospital for Sick Children and so many other incredible moments that take your breath away, thanks to Shania and you Shania's friends. Her spirit lives on, she taught us so many lessons about how wonderful life is and how precious our time here is, to make every moment count. I found a song by Zucchero that reminds me of Shania here it is www.youtube.com/watch?v=teWFnLqjnuY&NR=1 Shania lived a short life but she made it a wonderful life, crammed full of happiness, kindness and love everything that life is meant to be about. We also found that a young man named Sean Pearl did a beautiful tribute for Shania on youtube, we just happened onto it last night. www.youtube.com/watch?v=_I9bzJirboI&feature=related Thank you for this Sean, it's very touching. Please say what you feel to the ones you love because before you know it, they could be gone. I will go into more details tomorrow about all the wonderful things that happened last year and the things to come in 2009. But for now Happy New years and hello baby 2009!!!!!
with love that is true,
Shayne,Karen & Shannon

Shania Johnston Park !!!!!

Shania's 10Th birthday was on November 7Th. Karen, Shannon and I all took that Friday off and went down to the Royal Botanical Gardens again this year. It was a cool foggy day and the Rock Gardens are closed by then, but we are able to pull up beside the rock gardens in our car. We had three purple balloons with sunflowers on them and had attached small letters to Shania from each of us. This is a brutally hard thing to do, standing there on her B-day watching those balloons float off into the mist, over one of her favourite places, with notes that say things that we wish we could say to her, if there was only a cure for this disease. It is on this day that the crack in our hearts feel the widest and most painful. We cant help but wonder about her. What would she look like with those dimples, that beautiful caring smile with her being two years older, what would she have wanted to do on her tenth Birthday, so many what ifs flash through your mind on a day like this. It is so hard to go there on this day, but we wouldn't miss it for the world. It means so much to us. Now on to some much happier Birthday notes, we would like to thank Jessica Kerr on her 8Th Birthday for asking her friends to donate to Shania's cause in lieu of gifts and also Dawson Elliott for doing the very same kind and selfless gift to another child to help find a cure. Another thank you one of Shannons best friends 7 year old Megan Shorley for donated to Shania's cause in lieu of loot bags. Happy belated Birthdays to you all for giving with a gift of your heart. Your acts of kindness are like a song that Shannon just sang to Karen and I this morning. It's a song that she sang with her class on Remembrance Day here's how it goes:

Make A Difference
We can make a difference in our world today
Together we can make our world a better place
When we work together so much can be done
If all the children in the world would sing in unison

We know what's right and we know what to do
The future can be brighter It's up to me and you

Take my hand and join me sing along with me
When all the children join us there'll be a change you'll see
Do you have the courage? Do you have the pride?
Do you have a vision of a world where all is right?

We know what's right and we know what to do
the future can be brighter It's up to me and you

We can make a difference in our world today
Together we can make our world a better place
When we work together so much can be done
If all the children in the world would sing in unison
We know what's right and we know what to do
The future can be brighter It's up to me and you

Beautiful! Maybe they could sing this at Shania's Fun Fair we'll have to ask mrs Wellman, whom so happened to be Shania's teacher when she started to get sick. She is an inspiring teacher, with a kind heart, just like I think Shania would have been. We would like to thank Dawn and Mark Caswell for having a huge "something or another" birthday party for Dawn and having everyone donate to Shania's Fund also in lieu of gifts. Thank you Caswell Family for letting us know that we are not alone in missing our sweet Shania's it is very comforting to know how many hearts Shania touched.
Does anyone want to go on a picnic because the town has informed us that instead of naming a street after Shania they are going to name a park in her honour instead. Holy jumping junipers !!! We were all smiles when we heard this great news!!!! This is so much more special. We can't wait to see it!!!!
We will always believe in you Shania we will we will !
We will always believe in you Shania we will we will!!
We will always believe in you Shania we will we will!!!!
With love that is true,
Shayne, Karen & Shannon

Thankful !!!

A poem to Shania on Thanks giving day:

We are thankful to have a buddy old pal,
her name is Shania and we miss our pal more
than we ever could have foretold.

She is the sunshine on the darkest of days.

Always smiling with those dimples in her cute little ways.

She was a true friend , with a kind heart that
you could always depend.

Shania could make you laugh that was her way,
humour was always her most beautiful forte.

So on this day of thanksgiving we would like
to declare, how much we love you Shania for this
we do swear.

We will be forever thankful to have had you
as our true buddy old pal.


Written by your pals

Shania's Sunflower of Hope Fund :)

It's been a busy summer and we have so many great things to update on, but the biggy is that Shania's Sunflower of Hope is now officially a fund for Sickkids Foundation. I know Shania would have been very excited about this great news. All she wanted to do was help other children who are suffering with this dreadful disease. The money that is raised will still be fast tracked through The James Fund for Neuroblastoma research at Sickkids labs. We are so grateful to a special little boy named James Birrell who also had this horrible disease and the Birrell family for setting up the Neuroblastoma research fund seven years ago, his spirit lives on by helping so many children and there families. James wanted to find a cure just like our Shania did and they still are because of people like you. Together in numbers we are strong and can help move the mountain that blocks better treatments and ultimately a cure for these children. So many people say that what they are doing is only a small thing, but all these small things add up to something huge. I'll update more tomorrow but right now I have to put Shan to bed and read her some bed time stories. Shan says that she wants me to write that she loves Shania's Sunflower of Hope Fun Fair.

With love that is true
Shayne, Karen & Shannon

So Beautiful !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Karen, Shannon and I just got back from the RBG rock gardens. We went down around five and it started pouring rain most of the way down until we got there and then it cleared up. Just like on this day last year when Shania died. I remember her asking us if it was raining out. We took down a little garden fairy figurine that we had in one of our potted plants here at home. This is the second one that we have taken down to Shania's fairy princess falls. We also bought one at a garden centre out there in the spring, this was the first one we got, and its a little one that is sitting down and is kissing a flower in it's hands. When we put it there in the rocks of the falls this spring, we figured that it wouldn't be there the next time we came back. And sure enough it wasn't there when we came back. It was in another spot farther down the falls in a small cave like crevice. So the next one that we brought from our garden, we put it in the fairy cave to keep the other one company. This one we brought today, we put up at the top of the falls so we'll see if it ends up going down with the others. It had a broken wing so it might have a hard time getting down there. But these falls are quite magical so I wouldn't be surprised. Something that we also do is find a plant that has Little flowers on it and pick one for each of us and say a few loving words to Shania and through them in at the top of the stream and watch them float down. This place is so beautiful just like our Shania. We had the place to our selves because it had just finished raining which was even more special. We miss her so much, it just seems like yesterday that we had her with us, flashing that pretty smile, saying those funny and thoughtful things that she would say. She tried to protect us from all the pain that she was suffering from this horrible disease, not wanting us to worry about what she was going through. We think about her everyday, she is with us wherever we go, branded into our hearts forever, with love that is true.
We will always believe in you Shania we will we will !!!
We will always believe in you Shania we will we will !!!!!
We will always believe in you Shania we will we will !!!!!!!!
Love Shayne, Karen & Shannon

Because of you

Wow what a busy spring it was!!! With Shania's 2nd annual fun fair and the 1st annual golf tournament, this spring just flew by. We have great news for Shania's fun fair tallies, we raised just over $41,000.00 total. Last year we raised $27,000.00 the day of, plus we added in the money that was donated into her account after Shania passed away in July, which added up to $40,000.00 . What a tremendous event it was again. Thank you to everyone of you who made this such a great time, for such a great cause. Thank you for believing in Shania's dream to help find a cure. Also Shania's first golf tournament ended up being a great success also. The weather turned out perfect for it, the wild life made a great showing also, from the snapping turtle laying eggs in the 3rd hole sand trap, to the Canada geese and there goslings on the 6Th hole , to the deer on the 2ND hole. We saw some birdies of the golfing kind also. Thank you to our great neighbors Tim and Deb Fittler for setting up this fun filled day for the grown up kids at heart. The day raised $4800.00, which brings the total to $45,800.00 going to Neuroblastoma research at Sick kids. Because of you believing in Shania's dream, we are going to help these children have a better chance of surviving this devastating cancer. Being this busy this spring has been good for us, it has given us something positive and special to focus on in Shania's memory. It is coming up to July 19Th marking one year since our beautiful fairy princess passed away. Because of you Shania, this world is a better place to live in. You have touch so many peoples hearts in special ways that few people can do. Because of you, we have learned how life is meant to be lived to the fullest. You have taught us so many lessons of life that great teachers do. I just finished a cycling challenge in Shania's honour called 'The ride to conquer cancer" for Princess Margret Hospital, a cancer Hospital. With all funds going to Cancer research. It was a 200Km route from Toronto to Niagara falls over last weekend. We called Shania's team, Shania's Sunflower of Hope " Dream catchers" I would like to thank two good Friends for believing in Shania's dream, Robert Graup and Richard Hawkins and joining her team. This was definitely a challenge, two years ago I could never imagined doing something like this. But with Shania's inspiration I now believe anything is possible. I wanted to bring something small of Shania's along with me. When I went into Shania's room I looked around to find something that she would have wanted me to bring. Then I spotted her bravery beads. All eleven feet of them. She was so proud of every single one of them. Each bead representing a different procedure, treatment, operation, Ect... I knew that this is what she would have wanted me to take the most. But there was one problem, my pockets on the back of my Jersey wasn't big enough to hold them all. So I tied the two ends together and glued all the knots of strings together, so I was sure that it wouldn't come apart and have her beads scattered from here to Niagara falls. Then I looped it around my neck at least four times to make a necklace out of it. I was just as proud as a father can be to wear this necklace of my daughters, knowing everything that went into its making. It was quite an emotional experience for me to do. The route that we went was along lake shore from the CNE, then went up north passed HWY#5 and then West toward my home town that I grew up in called Waterdown. To our surprise the route went right down Robson Rd by my dads house. My Dad and Stepmother Sandra were waiting for us out front, So we stopped in to quickly replenish our fluids and hit the road again, we slept over in Hamilton at the grounds of Mohawk College in a huge tent city that was set up there, food was great, beverages compliments of Steam Whistle brewery took some of the pain away. The next day we finnished the route ending up right next to Niagara Falls. This fund raising event was incredible organized from start to finish, not an easy feat considering there was 2850 riders. Shania's team ended raising over $8000.00 and the grand total for the event was $14,000,000.00 If anyone would like to join us on this incredible journey next year, go to http://www.conquercancer.ca/ and look up Shania's Sunflower of hope "Dream catchers" we would love to have you on our team. Karen and Shannon met me in Niagara falls and we stayed over Sunday night at the falls and spent some quality time together.
I will always believe in you Shania I will I will!
I will always believe in you Shania I will I will!!!
I will always believe in you Shania I will I will!!!!!!!
with love that is true
Shayne, Karen & Shannon

The big suprise !!!

What a day Shania's Fun Fair turned out to be, it started out with a beautiful introduction by Lisa Dilworth the new Principle at Reesor Park School, Shania and Shannons School. Then Dr Baruchel ( Shania's Oncologist from the hospital for Sick Children) did a moving Speech about the innovative research being done at the hospital and about the courageous children struggling with Neuroblastoma. Also Dru Soo from Rogers television talked lovingly about Shania and her cause. Then the festivities began. First up were the Sizzling Sunflowers, which is a group made up of Shania's friends (Meredith Ward, Jacklyn Lafontaine, Madeline Graup, Natalia Mangos, Jessica Gomes, Holly and Chloe Dyson) and sister Shannon, singing a fun song about Shania. This was written by Elaine Dubyna along with the next song sung by Amy Pipher. These are very touching songs from the heart. Karen and I had soggy eyes listening to these being performed so beautifuly about our daughter. They have a CD done up, with these and the melody that Shania wrote. This was recorded with Ruth, Shania's music therapist and a Harpist named Jacqueline. The final song on the CD is by Shania, singing the song she wrote about her mommy, "I love you forever". We will be putting this CD in Shania's store, with all proceeds going to music therapy at the Hospital for Sick Children. The day started off outstanding and just kept getting better and better as it went along. Seeing all the kids having so much fun getting there faces painted, having their hair done in the funky hair zone, walking around with Circus Du Sala looking balloon hats, playing all the games, bouncing in all of the bouncy castles. riding the ponies from Lionel's pony farm, climbing the rock wall outside in the rain. playing with the exotic animals from Wimz, getting autographs from Steve Thomas and Jeff Keeping. The list of fun just goes on and on. Micheal Burgess sang an incredible rendition of "you raise me up" one of Shania's favorite songs. Wow what a voice he has! Also the Reesor Park Sunflower Singers sang beautifully. Then the big surprise came. Frank Scarpitti arrived and was supposed to tour the fun fair, but instead he wanted Karen, Shannon and I to come up on stage with him because he wanted to do the 50/50 draw and say some words about Shania and her cause. But to our surprise, after the draw and speech, he handed us a gift to be opened. Inside was a sign and on it said " Shania Johnston St" with a Sunflower beside it. He then announced that the city of Markham is going to name a Street after Shania. We were blown away!!! We didn't see this coming at all. A feeling of pride just flooded over us. What a honour to Shania from this incredibly caring community called Markham. I don't think that there was a dry eye in that building after that. I could picture the smile that would have been on Shania's face, if she was still with us. But she was indeed there smiling in our hearts. On behalf of Shania and our family I would like to thank you Frank and everyone in this great community for bestowing this huge honour on our Shania. And as Diane Birrell of the James Fund said, we'll have to have a great big Street Party!!! I could go on and on about this fun day, it had such a special feel about it. But to sum it all up, it was the smiles on all of the kids and their parents faces. That is what Shania's fun fair is all about " Having fun" life is to short not to!!!! All the while helping children and their families suffering from this dreadful disease. Karen and I are going to do Megans walk tomorrow along with Shannon. This will be a day of mixed emotions for us. Mostly sad ones I feel. Shania wanted to do this walk so badly, along with Karen last year. And now she is gone. After that we are going down to the Royal Botanical rock gardens, to Shania's fairy princess falls as we call them. They have the tulip festival going on there now also. It is a sight to see, all these flowering bulbs and the many colours and scents of spring. Shannon gave Karen a pedicure to make her feel good tonight. I think she knows how sad of a day it's going to be for Karen and wants to cheer her mom up. This is very thoughtful coming from a six year old.

Have a special Mothers Day moms!!!
All the best
Love Shayne,Karen, & Shannon

What a beautiful day

This labour of love called Shania's Sunflower of hope Fun Fair turned out to be another beautiful day. Even though it rained again, this indoor fun fair shinned as bright as any sunflower can. This Fun Fair is what Shania is all about, fun loving, caring, kind, happy, smiling, living for the moment. You can see it in the great people who helped organize this event, the special people and companies who sponsored it, the talented people who entertained at it. And you the people that came out and had a great time for a great cause, to help these children suffering this horrible monster of a disease. On the morning that Shania died it was pouring rain outside, Shania was in and out of a dream like state as her body struggled in exhaustion to breath against this cancer that had spread to her lungs. Her mind was clear when she would wake up, she asked us if it was raining out and we told her yes that it was pouring out. She gave both Karen and I a big hug, at the same time (A hug that I will never forget as long as I have breath in my lungs.)
Shannon had woken up and came into Shania's room and Shania told her that she loved Shannon. And not long after that she was gone. Then the sun came out and shinned bright for the rest of the day. It was similar at the fun fair, after Shania's grampa George and I picked up the last load of stuff and drove out of the Markham Fair grounds gate the sun came out of the clouds and into solid blue skies. To me this was a tribute to Shania, that even on the rainiest of days you can enjoy yourself no matter what. It's what you make of life yourself. While we're on the subject of life, a volunteer Andrea Lack at the fun fair told me that a little boy around five or six was waiting to go on the fun fair park bouncy castle and he told her that "this is the best day of my entire life"!! This is the best compliment that can be said about Shania's Fun Fair and all the people that are part of this labour of love. The volunteer that I just mentioned Andrea Lack has a little boy named Sam whom had Neuroblastoma stage three, he has been in remission for a while now and they have a birthday/fun fair fundraiser party called Sam's day you can check it out at http://www.samsday.org/ they gave us the idea of having passports that the kids can get stamped while playing the games. Shania loved this treasure hunt to win a prize idea. All the best to you, your family and friends at this years event. I will go into more details about shania's Fun Fair and the big surprise!!!! tomorrow or I guess it's today, right now I have to try to get some sleep, Ive been up since three AM yesterday morning and it's now twelve o two AM now.
All the best,
Love Shayne,Karen and Shannon

Shania's Dream catchers

I can't believe It's less than a week til Shania's fun fair. It seems like yesterday that we wheeled Shania into her first fun fair. The look on her face wiped away all the pain that we had in our hearts for that one day. She was in so much pain from the cancer in her spine, but nothing was going to keep her from being there, she was determined to be with her friends at this beautiful event that she had created and lovingly planned out. As soon as she got back to the hospital after that incredible day she got out her clip board and started planning out this years fun fair. She put so much love into this fun fair. How we wish she could be here for this one also, to see that look on her face just once more. She won't be there physically this year, but she will be in our hearts. On behalf of Shania, Karen and I would like to thank everyone that is involved in making Shania's Fun Fair a truly special event in this great community.
Karen, Shannon and I went to Sick Children's hospital Memorial yesterday. This was held at the University of Toronto in one of there older buildings. This Memorial was for families that had lost a child at the hospital in the last year. This building was like an old castle, with it's thick wooden doors and a large court yard in the middle of the building, stained glass everywhere. We followed the signs pointing us to the ceremony through the old corridors. It felt like we would be meeting up with a King or Queen at any moment. The ceremony was in a large cathedral like hall with huge stained glass widows and long steel chandlers hanging down throughout the hall. On the chairs we found paper leaves with pens to write a note to our loved ones, to be hung on small trees up front. Ruth, Shania's Music Therapist started off the ceremony by playing the melody that Shania had wrote while in the hospital. Ruth played the flute along with her friend Jacqueline on the harp. The acoustics of the hall sounded wonderful, with shania's melody wafting through it. It brought Karen and I to tears. Karen later said to me that it had a mystic feel of fog over the still water of a lake. Thank you for that Ruth, very beautiful! Another song that is called "above the clouds", was beautifully sung by Amy and Jen two nurses that Shania was very fond of and had great times with at the hospital. It was great to see some of these great people from the hospital again. We miss them, they had become just like family to us. I don't know how we would have gotten through that year and half without there genuine love, support and kindness. We would like to congratulate Bronwyn and Jes two of Shania's nurses that are expecting new arrivals soon, you deserve all the best that motherhood will bring into your life. It was also great see Julie "Bob" Constantine, Karen Fung, Karen Drysbrough and everyone else there that make this hospital such a special place for our sick children and there families.
While we are on the subject of great Hospitals. Shania had gotten radiation treatment at Princess Margret Hospital to control her excruciating pain from the Neuroblastoma in her spine and legs. We would take the long underground tunnels winding from one hospital to the other for her treatments and back. In honour of what they did to help Shania with her cancer and other children suffering with this horrible disease. I am going to do the Princes Margaret Hospital "Ride to conquer cancer" along with one of Shania's best friends father Robert Graup and our neighbor that used to live across the street from us Richard Hawkins. I would like to thank these good friends for joining us on this 200Km cycling challenge from Toronto to Niagara Falls. Our team is called "Shania's Sunflower of Hope Dream catcher's". It will be held on June 20th-22nd. If you would like to sponsor Shania and her team to help find a cure click here
www.conquercancer.ca
I am going to take a picture of Shania and I riding our bikes together with me, along with one her charms and the training schedule that she wrote up for me to do " The ride for Karen" last year.

I will always believe in Shania I will I will !!
I will always believe in Shania I will I will !!!!
I will always believe in Shania I will I will !!!!!!!!!
With love that is true
Shayne,Karen & Shannon

Holding hands

Yesterday Karen, Shannon and I sadly attended a funeral for a good friend of ours Steve
Farquhar. We had great times with Steve going on ski trips to Vermont and Quebec. White water rafting in Ottawa, going Camping. We would like to pass on our deepest heartfelt condolences to his family. Karen and I hadn't seen him in a number of years, but the most striking thing that I will always remember about this fun loving character nicknamed (Sparky) was his smile, just like Shania he had an incredible smile that could light up the darkest of rooms and make everyone in it feel good. You will be sadly missed by all that know you" Spark". Shannon talked a lot about Shania on the way home. How she misses her big sister. She mentioned about a time when Shania was starting to get pain in her knee just before we found out that she had relapsed. Shannon had helped her down the stairs by holding her hand and when they got down stairs and started playing together, she said that Shania told her " You know that I love you, don't you Shannon". I think that Shania knew that the cancer was back and wanted her little sister to know how much she loved her. What a beautiful gift to give to her little sister, for which I think she will cherish for the rest of her life. It's amazing how the little things done with compassion, caring and kindness can mean so much and make such a difference in peoples lives. Like the time that they asked that I would put a letter in their envelope mail boxes outside there doors which I did quite often. I forgot to put them in there the in the morning, it was totally my fault, but when Shania woke up and noticed that I hadn't put a note in their mail boxes. She wrote one up for Shannon. I have it in front of me right now and it says "I love you Shannon ( with a picture of two hearts) P.S. Keep on smiling. Love Shania". This is another one of those many little things about Shania, Karen and Shannon that mean so much to me. Another little thing that means so much, was when Shania was near the end of her life. We were at home and we had sleep overs with her every night of that last week. She had a oxygen mask full time by then as the cancer spread in her lungs. We had pillows on the floor beside her bed, that Karen and I would take turns sleeping on every other night. Shania wanted to hold hands, talk and joke about stuff, so we would fall asleep and wake up holding hands together. It was just as comforting for me as it was for her, I think. To be able to let her know how much I loved her and was there for her meant everything to me. Holding someones hand is one of those little things that can mean so much, but we take it for granted. I'm sitting hear listening to Shania's favorite CD, Sunday morning Classics "Loves first glow" with it's orchestral soothing melody's, I haven't listened to it in a while so it's comforting to this sad dads heart to hear again. I just wish I could hold my baby girls hand and see that sweet smile again. Don't let those little moments slip by, make sure you have them, because they can last a life time.
Shania loved this saying and used it often "Smile and the world smiles along with you" it's so true, it's contagious, Shania and Sparky knew this all to well !!!

Keep on smiling :)
Love Shayne,Karen & Shannon

Shania believes in Sickkids !!!!!!

Karen, Shannon and I are going to be on Sickkids radioathon on Wednesday march 26Th. First on CFRB at 4:00PM and then EZ Rock at 5:00PM to talk about what Sick Children's Hospital and the incredible people there meant to Shania and our family. It is hard to even try to begin to explain how grateful we are that we have a facility filled with such dedicated and caring individuals, all working for the same goal." To save children's Lives" It must be so hard for them to see these beautiful little children suffering from terrible diseases and conditions. This is where the fund raising comes in. Before Shania got sick with Neuroblastoma I had no idea that Sick Children's Hospital is one of the worlds leading research Hospitals. All working hard to find cures for things like Childhood cancer. They aren't doing this to feed a huge corporate machine. They are just plain and simple trying to save our kids lives and possibly kids all around the world at the same time. Sick Children's Hospital was there for us when we needed them and so where you the people that support Sickkids. And if our family can help in any way possible we will because we know first hand how important it is!!! Shania loved the people of Sick Children's hospital, this I believe is part of the reason why she wanted to help them find cures for other children suffering like she did.
We would like to thank Jennifer Brown and the Toronto Star for doing a lovely article in Shania's memory and her cause. It was in their Sickkids pull out section. Very touching! Thank you.

I will always believe in Shania I will I will !
I will always believe in Shania I will I will !!!
I will always believe in Shania I will I will !!!!!!
With love that is true!
Shayne, Karen and Shannon

Cherishing her memory

Shannon got this from Evergreen hospice where her and one of Shania's good friends Chloe and Holly went to share there love for Shania. Thank you everyone at Evergreen for being there for us.

Here is something that Shannon wanted to write about her big sister: With love from Shannon Shania was nice, she wanted to be a teacher. She was like a teacher, she was a teacher.

Written by Shannon Johnston

P.S. Shannon wanted the colours of this text because pink is her favourite colour and red is Shania's

Shania's Sunflower of Hope Golf Tournament

Karen, Shannon and I have just recently done an interview with the Toronto Star newspaper because they want to put Shania in there Sickkids special section coming up on March 20Th. This was an easy/ hard thing for us to do. Easy because we love Shania so much and want to carry on her cause, but also hard because we miss her so incredible much. It has almost been 8 month (July 19Th 2007) since Shania's passing away, but the pain of losing our beautiful little girl is still so very raw. You would think that time would start to heal that pain, it doesn't, it's still there just under the surface. I don't know about other losses, but I can't imagine anything to much worse than the loss of your child. Karen and I also did an interview for a fine lady named Jacinta Palud, whom is the Godmother to a 3 year old boy named Sebastien. He was born with a disease called Gastroschisis. He has had a liver and small bowel transplant and is waiting for a kidney transplant. Jacinta does a blog for Sebastien and his family on there website. She wanted to interview us about how karen and I stayed together and happy despite the challenges of the last year and half. We are know experts in this field, but were happy/sad to share our experiences. Here is the link if you would like to take a look (stay strong Sebastien and family:) http://placedechoix.wordpress.com/2008/03/03/an-interview-with-shanias-parents/ We have been busy with Shania's Fun Fair which is on May 3Rd at the Markham Fair grounds again this year. We have added on another building this year which will be an interactive sports zone for the older kids and adults, now all we need is a sponsor to put there name in front of this zone. Shania wanted a Ferris wheel for this fun fair but I don't think that we will be able to afford that this year. We are very excited about this and also Shania's Sunflower of Hope Golf Tournament, which will be held on June 6Th which is coincidentally the day that Shania was diagnosed with this horrendous disease in 2006. Our neighbors Tim & Deb Fittler came up with this idea and are graciously organizing this event. We are looking for volunteers and sponsors for this or the Fun Fair, which are such a worthy causes to fund research at Sick Children's Hospital. e-mail us at shania.com@rogers.com . I will try to update more often

Thank you for caring and sharing!
Sincerely with love,
Shayne, Karen & shannon

Our special Valentine

Click on picture for enlarge

Shania's first Valentine's day, she is three months old here Feb 1999. Shania was such a happy baby alway's smiling and inquisitive. She will always be our special Valentine !!!

Happy Valentines day.
With love that is true
Shayne,Karen & Shannon

With love from Peru

One of Shania and Shannon's best friend's stopped by for a visit just before Christmas. Her name is Sarah Legault. She had just recently returned from a vacation she has dreamed about most of her life. She went to see Machu Picchu the lost city of the Incas in the Andes (One of the new Seven wonders of the world.http://en.wikipedia.org/wiki/new_seven_wonders_of_the_world ) We met Sarah at Sick Children's Hospital last year. Sarah works for Sickkids Foundation and was huge in helping us organize Shania's Sunflower of Hope Fun Fair. The girls love her to bits, Shania would be besides herself when she knew Sarah was coming for a visit with her. We are honoured to have such a special friend, you truly are a beautiful person. Also a big Congratulations upon getting engaged on the 28Th of December, we wish you and Jeff all the best.
With love from,
Shayne,Karen,Shania and Shannon ( I had to put Shania in there because she would have been so thrilled to know that you wore one of her shirts at your "Empire in the sky")

P.S. I don't know what your plans for your honeymoon are, but there are six more new wonders of the world left :0) wink wink, nudge nudge, say no more, say no more.

Kids believe in Sickkids

"Proud"is the word that comes to my mind when we were invited to accept Shania's award as top fundraising individual for 2007 at Sickkids. Shania accomplished so much in such a short time. And to do all of this while being so sick herself with this devastating disease, was truly astonishing. She did this fundraising because she was such a caring person. She was always like that, thinking about others before herself. Always a kind word if you were down. Even when she was at her sickest she would be worried about our feelings. Not wanting us to be hurt by what she was going through. This is the Shania that I am so proud and Honoured to be the father of. I went through some of our videos of Shania for a bio that they did for the Sickkids giving gala. This was a very hard thing to do, but at the same time it was nice to see her smiling face with those beautiful dimples and hear her sweet voice again. The bio was very touching to watch. I will see if I can get the link to it. Karen and I did some interviews on the radio stations EZ Rock, CFRB 1010 and the Mix FM about Shania and Sickkids giving gala. This also wasn't easy for us to do either. But we are glad we did because I finally got to meet my girlfriend. I used to kid Shania about who her boy friends were, so one day when she came home from the hospital with Karen, she said that she knew who my girlfriend is. I of coarse asked who this girlfriend could be? She said "daddy and Colleen sitting in a tree K I S S I N G ! So my next question was, where do I know this Colleen from. She said she's on the radio station EZ Rock in the morning on the show called Stu and Colleen, she's your girrrrrrl friend. This was one of our jokes with each other from then on. So it was really interesting how I finally got to meet my girl friend in Shania's honour. After we were off the air, I told Stu and Colleen about what Shania had said about Colleen and I. Colleen asked me if my wife knew about us. I told her that Karen was with Shania when she thought this up. We all had a good laugh about it. This was Shania also, always finding ways to make life fun. I'll write more about the giving Gala and see if I can put some pictures of Shania's friends accepting her award on her behalf. right now I've got to try to get some sleep, it's almost three thirty AM.
I will always believe in Shania I will I will !!!!
I will always believe in Shania I will I will !!!!!!!!!!!
I will always believe in Shania I will I will !!!!!!!!!!!!!!!!!!
Shayne, Karen and Shannon.

Believe in yourself and great things will follow.

Shania wanted to be a teacher when she grew up. But I don't think you have to be grown up to qualify as one. Shania taught us so many lessons in life in her short time here. And one of these lessons was that you have to believe in yourself. Even when things in life seem to be at there worst. You have to find it within yourself, it's there if you look hard enough. This is where your love, strength, courage, passion is. Shania was an example of all these traits even when she was at her sickest moments, she never gave up. Shania taught us that you have to live every day like it is your last and don't hold anything back. She did this and then some from day one when she came into this world this 11lb bundle of joy. Shania's passion was to find a cure for Neuroblastoma so that no other children have to suffer from this horrible disease and this she still is doing through us and the love we have for her. Another one of her passions was hockey, which we both shared together. She loved to play it and she loved to watch her beloved T.M.L . (The. Mighty. Leafs.) Shania's love for hockey has inspired me to start playing hockey again. I haven't played since I was 16 years old (which was 27 years ago) for the Flamborough sabre allstars. I am thoroughly enjoying being back on the ice again, I proudly wear one of Shania's grey Sunflower of Hope t-shirts under my equipment. The name of our team is the Ice Pirates, which I know that Shania would have loved, The Pirates of The Caribbean were some of her favorite movies. It's amazing what we can learn from kids, if we let them teach us how to enjoy life like it's supposed to be lived and just have fun. On Nov 5Th Reesor Park School had a tree planting ceremony in honour of Shania. We brought some sunflowers and roses with us, Shannon and Karen placed them at the tree base of the tree. We also released some balloons. A large engraved garden stone was supposed to be coming on Friday. Thank you to Mr Green thumb landscaping for volunteering to plant Shania's tree at no charge. Also a sincere thank you to Nitsa Mangos and everyone else involved in doing this beautiful tribute to our Shania. Wednesday Nov 7Th was Shania's birthday and we went down to the Royal Botanical Gardens. We brought Shania's favorite meal with us Loblaws chicken and wedgies which we ate in our van when we got there. After that we went for a walk through the trails down to Cootes paradise and along the board walk in the marsh there. It was cool with a few flurries flying, but it was nice because we had the place to ourselves except for all the birds and squirrels. They are used to being feed and came running and flying from every direction. We had lots of bird seed and peanuts with us so we were ready for them this time. hundreds of them, Blue jays, Cardinals, woodpeckers, little black and white chickadees, morning doves, mallard ducks Grey squirrels black ones you name it, they all gave us a warm welcome and chowed down on the goodies right out of our hands . We ran out of peanuts when we were heading out and one Squirrel just kept following us. Shannon had a little bird seed left in her bag and the squirrel climbed up her leg and onto her arm and stuck his head right into her bag of seed looking for another peanut. It was good to see Shannon laughing and having a good time. Next we headed over to the Rock Gardens just up the road. They are closed for the season but the fence is close to where Shania's Fairy Princes Falls are. We had brought some balloons with us. One was a Tinker Bell balloon which Shannon wanted to release so we sang Shania happy birthday, Shan wanted to count are you one, are you two, are you three ......up to nine and then we released the balloons, which we had attached little notes to Shania from each of us. We stood there watching the balloons until we couldn't see them anymore. It was a sad drive home, but we are definitely glad we went. The Kids Believe in Sickkids award ceremony is this Tuesday. Shania is being honoured with "Top individual fundraiser". Karen and I will be on the radio stations "EZ rock" and "The Mix" around 8:30am to talk about what Shania has done for this great Sickkids Hospital. I just wish so much, she was here to except this award herself. Shania believed in herself and others, this is just one of the great things that have followed.
We do believe in Shania and her T.M.L. we do we do!!!!
We do believe in Shania and her T.M.L. we do we do!!!!!!!!
We do believe in Shania and her T.M.L. we do we do!!!!!!!!!!!!!!!
Our hearts are with you J.B. keep strong.
Sincerely,
Shayne,Karen and Shannon

Memorial Tree

Shan went to camp oochigeas the camp for kids with cancer. She went on the weekend, it was just for siblings who have lost a brother or sister to cancer. This is one of the camps that the Ride for Karen sponsors. Shan had a great time there and made lots of new friends. We are so proud to be a part of sending these kids to this incredible camp. The pictures from the ride for Karen are on there website if your interested in checking them out, go to http://www.rideforkaren.com/ Shan, Karen and I went out to camp ooch a couple of weeks earlier for the James funds first annual Neuroblastoma retreat weekend. This was a very hard trip for Karen and I to make, being so close to Shania's passing, but we felt that we had to be there. We arrived Friday night to a very warm welcome by the volunteers who helped everyone unpack there vehicles, get registered and parked. Once we were settled in to our room we walked over to the meeting lodge, which is in front of there lake, this was an incredible sight to see with the full moon reflecting off of the glass still water, and a mist rising over top, it gave it a magical feel to this amazing camp. It was great to see the Neuroblastoma families, Doctors and staff that we had met at Sick Children's Hospital . The Birrell family and all of the volunteers made this weekend a special one for the Neuroblastoma families. Shan had a great time playing the camp games, getting dressed up and doing all the crafts that the councilors had set up for them. We left early Sunday to go down to the Rock Gardens at the Royal Botanical Gardens and placed a stone from Camp Ooch by the Fairy Princes Falls. Shania would have loved to been at the James Fund retreat and we felt that this was a way to bring a bit of Camp Ooch to her. The Rock gardens are closed for the season now until next spring, but we are planning on going to the RBG on Shania's birthday and maybe have a picnic with Shania's favorite meal Loblaws Chicken and wedgies. They have paths through the wooded trails there and you can feed the birds and squirrels right from your hands. Hopefully the weather is good. Reesor Park School is having a memorial tree planting ceremony for Shania on Monday November 5Th, they are going to have a large garden stone with an engraving saying "In honour of Shania Ida Johnston our Sunflower of Hope Nov 07 1998-July 19 2007" It will be at the front entrance of the school. The tree will be a Serviceberry, which has beautiful white spring flowers and is very fragrant. Thank you Reesor Park School/community/family for honouring our Shania in this way. Shania would be very proud of this honour. This school was her home away from home, she loved everything about it, She wanted to be a teacher when she grew up and I think this is a reflection of this School and its beautiful people. Karen,Shannon and I are looking forward to going out to peterborough this weekend to do the Walk/Run for the James Fund. If anyone is interested in sponsoring us for this great cause go to http://www.runningroom.com/
Take care
Love Shayne,Karen and Shannon

Proud to be a big sister

Shania cuddling her little sister on her birthday August 17, 2001. Shania was so excited to be a big sister, she couldn't wait to see Shannon and hold her, it was such a site to see. She had to wait 9 month and she could hardly contain herself.

Kids Believe in Sick Kids award

Another milestone has come and gone. Thanksgiving was yesterday and we had a lovely turkey dinner at Shania and Shannons Nanna And Grampas house (Sherry and George), GG(Great Grandma Marg)was there also. After dinner we went and played soccer at the park and then came back and watched High School Musical 2 on TV. All I could think about was how much Shania would of loved this day. Playing with her Grandparents and Sister, getting out my moms wooden fruits and giving them to everyone. Having fun chasing there dog Dukie around the house. Shania loved the movie High School Musical 1 so she would have been so excited about seeing number 2 over and over again. We also had dinner at Grampa, Grandma and Auntie Dan Dans(Dennis, Sandra and my sister Danielle) house on Sunday and had just as special of a time there also. These milestones are very sad and happy occasions at the same time. We are sad because we miss Shania so much and we are happy to have all of these fond memories of our Shania. It's a mix of emotions. As the days (82 to be exact) have turned into months since Shania passed away. It doesn't feel like the pain has diminished, it only seems like it is more bearable now. Shannon talks about Shania all the time still, as do Karen and I. It comforts us to know that we will never forget our Shania. I am playing Shania's favorite classical CD right now "Loves first glow". It's fitting that this would be the name of her favorite CD because Shania had such a love for life and for everyone. She was like the brightest shooting star that lit up our lives with this intense love and joy, it has left a glow in our heart's that can't be forgotten. She taught us how life is meant to be lived.

This is a letter we received from Michael O'Mahoney at Sick Kids Foundation about there humanitarian awards

Dear Mr and Mrs Johnston

I am so sorry that you recently lost your daughter, Shania. Please accept my sincere condolences. There is no one whose passing hurts as much as one's beloved child -especially when it happens far too soon. I wish that I had an opportunity to meet Shania, the amount of passion and determination she exhibited in her short life is truly inspiring. At SickKids, we are energized by the enthusiasm of our youth who proactively participate in fundraising, and we try to recognize their efforts by hosting an annual "Kids Believe in Sick Kids Awards. At this event, we honour the top fundraisers in three categories. As you well know, despite battling her own cancer, Shania worked very hard to raise money for SickKids and the James Fund. I am so pleased to inform you that Shania will be recognized as the 2007 Top Fundraising Individual. The 2007 Kids Believe in SickKids Awards will take place on November 20TH, And hope that you will both be able to join us to represent Shania and her incredible philanthropic spirit. Before the ceremony, we would like to arrange a convenient time when we could film you, your family, and perhaps one or two of your daughter's friends talking about Shania and her tremendous efforts to support SickKids. I regret that we were unable to recognize Shania as the recipient of this award before her passing, but I do hope that you will both be able to join us so that we can celebrate your little girl's wonderful spirit and hard work.

Sincerely,
Michael O'Mahney
President

Thank you for this lovely letter Michael it will be our honour to represent Shania at this ceremony. She would have been so proud of this award, not only for herself but also for all of her friends that helped and continue to help her with her dream to find a cure so that no other children have to suffer from this horrible disease.

I will always believe in Shania I will I will!!!
I will always believe in Shania I will I will!!!!!!!!
I will always believe in Shania I will I will!!!!!!!!!!!!!
with love that's true,
Shayne,Karen,Shannon and Whiskey

Claire flying high down under with Shania on her mind and in her heart

A friend of mine John Flynn from my work said that his daughter Claire was doing a working visa for a year in Australia and she wanted one of Shania's shirts to wear out there. She sent these pictures from Cairns, Australia back not long before Shania passed away. They really hit home because Shania loved Peter Pan and I remembered Shania being asked if she had a wish for herself what would it be, she said that she would like to fly like Peter Pan. I think that this is the next best thing. This was the first time that Claire has gone sky diving and said that she thought about Shania and this gave her the strength to let go of the plane and make the jump. Good one on ya mate. Thank you for these beautiful pictures Claire. If anyone else would like to post pictures of them wearing Shania's shirts from somewhere in the world when they are on a trip or in any other fun way just send the pictures to shania.com@rogers.com we will gladly put them in the blog.

pictures continue below :)

Dogged determination!!!

These two words describe Shania to a tee. When she set her mind to do something she would do it whole heartily and wouldn't give up until she accomplished her goal. So with Shania as my trainer for the ride for Karen, it was with this mind set that we did this 160KM challenge. It did turn out to be a rainy morning. I hadn't ridden in the rain before and didn't know how the bike would handle with these slick narrow tires. We started out at nine in the morning with Kirk Tobias doing a speech were he mentioned that I was a hero for doing this ride. This was very kind of him to say this, but every single person riding/volunteering/sponsoring this event are hero's. They put everyone into three groups the 35/30 and 25 KM/HR teams. I was in the 25/KM/HR group at the back. They separated them out by five minutes each. I was ready to go, I had a picture of Shania and I on our bikes in a zip lock bag along with her favorite bravery bead and a couple of her bracelets in my shirt pocket. So with a big hug and kiss from Karen and Shannon we were off. It wasn't raining at first but after about a half hour it began and didn't stop for about three hours. let me tell you, you don't realize how many hills there are going up north on the back roads until you go on a bike. Along the way I over heard some one in our group mentioning how hard this was and the person that he was talking to said that this is nothing in comparison to what these children with cancer have to go through. This is so true, these kids have true grit, to go through what they have to endure and still be able smile and have fun at the end of the day is truly inspirational. We stopped for a break at 50K to refuel with delicious muffins and cookies that Paula Tobias and friends made. I filled up my bottles and was off on the road again. This route I'm sure must be very scenic but it was raining to hard to do see very far. The group started to spread out a bit because of the water spray off the bikes, we were hitting 55 clicks/HR going down some of the hills, which we needed to get a head start on the next hill going back up. The rain started to subside once we got up to the Holland marsh, at this point it flattened out completely, so it felt like a double bonus no rain and no hills ya hoo!!! this lasted for about 30KMS until we came out of the Holland marsh at this point we weren't to far from the lunch break which is at 120KMS but we still had a few long huge hills or what seemed like huge long hills before we got there. I was really hoping that this lunch break would recharge the batteries, because I was a hurting unit at this point. Once I got there I got a heart lifting surprise. Vernon Ward a friend that helped me get set up for this challenge and was in the 35KM/HR group, was waiting with a necklace made from the metal plate that was used to cut out a gold pendent for the necklace that Shania wore at her funeral. It looks similar to a dog tag they use in the army but with a sunflower cut out of it. Thank you to Roger Kanda a friend of Kirk Tobias who is a jeweler, he made this and the sunflower charms for all 500 bracelets. I grabbed something to eat and was talking to one of the Marshals for the ride, his name is Chris, he mentioned a riders tip. He said to fill up one of my bottles up with a can of Pepsi and water. This would give me a sugar and caffeine boost for the last 40 KMS and true to his word it did give me that bit of extra energy to make it back to the Start/Finish line. I had brought along some energy bars with me and had them in my shirt pocket at the back of my riding shirt, this is also were I had Shania's picture and charms. So every time I went for the energy bars I would feel Shania's picture. This gave me a reminder of Shania all along this ride, it was like she was with me encouraging me all the way. She is my inspiration to do this challenge, I would never even have imaged of doing something like this if it wasn't for Shania. It was an emotional finish. The people that I finished with asked if I would like to lead them in to the finish, which I was greatly honoured to do and would like to thank them for this kind gesture. This ride took me seven hours to finish. Karen,Shannon and some of our friends welcomed us back with lots of hugs. They had come earlier and set up a booth to sell Shania's shirts and jewelery, They raised $350.00 which they donated to The Ride for Karen. Kirk said that it should go to Shania's cause, but we told him that this is what Shania would have wanted. We raised over $1900.00 dollars to send kids with cancer to camp. The ride in total raised over $240,000.00 WOW!!!! What a feeling it was to be a part of this great cause. I look forward to doing this again next year! Once again I would like thank Shania for being my inspiration and trainer.

I will always believe in Shania I will I will!!!
I will always believe in Shania I will I will!!!!!!!
I will always believe in Shania I will I will!!!!!!!!!!!!
With love that is true.
Shayne,Karen,Shannon & Whiskey.

Shania and her little pink bike

Shania and I going for a bike ride in the summer of 2001 she was 3 years old. Shania loved to ride her bike. And I loved to go with her, we would race around Oak Lea circle and she always managed to beat me every time :)

Fairy Princess Falls

Shan made it through the first week of school just fine. She was a little upset the night before the first day of school, so Karen and Shan put a picture of Shania in her back pack along with a couple of plush toys, one that principal Janet porter had given her and Shans cuddly cat. Shanias class last year was moved down the hall, so Shans class ended up with the grade threes coat rack and guess which hook Shan picked. Shans teacher Miss Folkes said that she would put her name beside Shania's. This touched Karen and I deeply when Shannon told us after school. It's like they are together still in a way, with Shania watching over her little sister still. I'm sure it's comforting to Shannon. Karen and I went down to the Royal Botanical Gardens yesterday we went to the rock gardens there. This was such a special place for Shania and Shannon, they loved going up and down through all of the paths, it is so beautiful with all it gardens of different colours and fragrances. They especially liked the water falls there, which starts at the top of the rock garden and meanders down to ponds below. We call these falls"Fairy Princess Falls" which have an almost magical feel about them. We feel that this would be a most fitting place to go if anyone would like to reflect and remember our Fairy Princess Shania. Karen and I sat at the top falls thinking about Shania and watched a butterfly land right beside us, a bumble bee collecting nectar in front of us on a flower, chipmunks and squirrels scurrying around our feet, the sound of water cascading down, birds all around, its beautiful just like our Shania. It feels like if you watch very closely you just might spot a fairy. But I think that this only happens if you "believe in fairies" If anyone would like to go to the RBG to reflect and remember Shania especially at Fairy Princess Falls the directions are at http://www.rbg.ca/pages/visit_directions.html and the website is http://www.rbg.ca/ ,The gardens are at their best right now and in the spring on mother's day when they have the Tulip Festival. A while back before Shania past away a fine lady named Harpa Valdimarsdottir from the beautiful country of Iceland e-mailed us to wish us the best and to say that she had been looking for a survivor of Stage Four Neuroblastoma after relapse and hadn't been successful. Her sisters three year old son Tjorvi has this terrible disease also and was at this same stage. Unfortunately shortly after Shania past away, so did little Tjorvi. Karen and I would like to send Harpa and her sister's family our deepest condolences, we are thinking about you. We have to find a cure or prevention to this disease so these children won't have to suffer like this anymore.
A big thank you goes to Siobhan 8 and Ylenia 3 Wilson for raising $135.00 by making beaded jewellery and selling it out front of their house. Siobhan has known Shania since daycare when they were two. Also thank you to Kerri Zamzow from Wisconsin for buying fifteen of Shania's necklaces and a shirt. Thank you to everyone that continues to support Shania's dream to find a cure. Tomorrow is the RideforKaren and I just found out that the forecast is calling for an eighty percent chance of rain. oh well we won't let a little rain stop us. The harder it is, the more special it will be to accomplish this challenge for a great cause. I think I will take a picture of Shania and a trinket of hers with me for the ride.

I will always believe in Shania I will I will!!!!
I will always believe in Shania I will I will!!!!!!!!
I will always believe in Shania I will I will!!!!!!!!!!!!!
With love that is true,
Shayne,Karen,Shannon&Whiskey

Fairy Princess Falls

Shania and Shannon at "Fairy Princess Falls " this is a special place in the "rock gardens" at the Royal Botanical Gardens, they loved it here. This picture was taken on mothers day 2006 just before Shania started getting sick from Neuroblastoma.

Beautiful Sunflowers everywhere

The sunflower that Shania loved so much, seems to be everywhere I go. I have been out and about on the bike called "True North" that I am borrowing for the "Ride for Karen". Every time I see a batch of sunflowers it gives me a boost in my legs to do this fundraiser challenge of 160KM. I rode out to my dads on Sunday and didn't even realize that the route that I was going went right passed the Cemetery/Funeral home on Elgin Mills where we had Shania's celebration of life. It was like Shania gave me a big push to make it out to my dad's. Shania and I decided to do this great fundraiser just before we found out that the cancer had spread to her lungs. She got out her home made clip board at the hospital and wrote me up a training schedule. She is still my trainer and motivator for this ride, she is in my heart and on my mind every time I go out for a ride. I have only been able to get out five times since we found out that Shania had the cancer in her lungs and past away two weeks later. But hopefully I can get out a bit more before the big day. If anyone is interested in sponsoring Shania and I for this incredible cause. Go to www.rideforkaren.com and look us up, or E-mail me at Shania.com@rogers.com all the money raised goes to sending cancer kids to camp. We also have been trying to get the five hundred bracelets all done for this ride. Thank you to everyone that is helping us make all of these bracelets, I know we wouldn't have been able to do it without you. Shania's second annual Sunflower of Hope Fun Fair will be on May 3RD 2008 this year coming up. Our good friend Anji Sharp said that she is looking forward to doing it again this year. We want to add another building to it this year. And hopefully we will be able to get the fair us wheel that Shania wanted for this year. School starts next week and this is going to be another big milestone that will be tough to do without Shania with us. Shannon isn't looking forward to it without her big sister with her. It's going to be hard on all of us. Shania loved school so much, she loved everything about Reesor Park School/Family/Community, her friends,teachers, the challenges of learning new things, everything.
I will always believe in Shania I will I will !!!!!!
I will always believe in Shania I will I will!!!!!!!!!!!
I will always believe in Shania I will I will!!!!!!!!!!!!!!!!
With love that is true,
Shayne,Karen,Shannon&Whiskey

The best sister ever !!!!!!!!!!!!!!!!!!!!!!!!!!!

Shannon had her sixth birthday on Friday and what a fun day it was. Shannon woke up early and was floating on a cloud. She had an appointment to get her ears pierced with her best friend Megan. Shannon asked us a while ago if she could get her ears pierced like Shania. Shania had her ears done when she turned six also. I remember Shania asking to get hers pierced when she was five and we said that she could when she turned six, hoping that she would forget about it. She didn't forget and greatly anticipated that big day. Shannon had a Barbie cake, the one with the doll and the cake is the dress. A bunch of her friends came over to play birthday games and go swimming. A big thank you to Melissa Hawkins for donating her life guarding fee to Shania's Sunflower of Hope. We were so happy to see Shannon having so much fun with her friends on her special day. Yesterday was a different story. It really hit us hard that we missed Shania on Shannons special day. We all were thinking about how much fun she would of had setting up all the games,playing in the pool and helping shannons day be a beautiful one. Shannon was very upset and said that Shania was "the best sister ever" and that she missed her so much. We all missed her, we think about her all of the time.

We added in Shania's beautiful DVD tribute from the funeral onto the home page yesterday, thanks to Edward our website specialist. So if you want to view it go to Shania's home page, just click on the small boxed in picture of her. This was very heart breaking for us to watch. We hadn't watched it since Shania's funeral. At the part near the end of her tribute it shows Shania playing the xylophone, this peace Shania wrote by her self along with the song that she wrote and sings for her mother, it is very touching to see Shania do these two beautiful peaces. The back ground music through out this DVD is a song called " You lift me up" by Josh Grobin. Shania loved this song the first time she heard Micheal Burgess sing it at a NHL Old timers game. Karen got it burned onto a CD and Shania would always ask to listen to it every time we were in our van.

Shannon asked after we watched the DVD if she could watch a movie that Shania and her had made just before Shania relapsed. I video taped their movie which was about their barbies fighting against the evil Super Seema. It is very funny and we had a great laugh with misty eyes at the same time. Shania had such an incredible creative ability to do these kinds of things. It was the sad day after the happy one. Karen and I would like to thank Syd Birrell for stopping by last night, your timing was perfect, we needed someone to talk to, who can empathize with what we were feeling. Syd knows all to well what it's like to lose a child to this terrible disease. He lost his incredible son James who created the James Fund For Neuroblastoma research at Sick Children's Hospital. Thanks again Syd for being there for us.

The week before Shania died she picked out the colours for the five hundred bracelets that will be worn by the cyclists of the "Ride For Karen". This being a cycling challenge to raise money to send children with cancer to camp. All in honour of Karen Tobias who past away from breast cancer, she is the mother of Kirk and Chris who have set up this amazing challenge. I was able to match up the beads that she picked out and we have started to fill there huge order of bracelets. I would like to thank Vern Chant a friend of Kirk and Chris for lending me an excellent race bike called True North for this challenge of 160KM. Also thank you Kirk, Chris and family for letting Shania and us be a part of this great cause. Kirk is dedicating his ride in honour of our Shania, as you can guess I am also. She will be in my heart and on my mind all the way in this fundraising challenge.

I will always believe in Shania I will I will!!!!!!!!
I will always believe in Shania I will I will!!!!!!!!!!!!
I will always believe in Shania I will I will!!!!!!!!!!!!!!!!!!!
With love that is true,
Shayne,Karen,Shannon&Whiskey.

We miss you Shania

This picture of Shania with her bravery beads, just brings back a flood of pride, sadness, love and hope. We are so proud of Shania and everything that she has accomplished and still is with the legacy that she has left behind. To me she represented everything that is good and right in this world. We are filled with sadness every time we think about Shania still, we miss you Shania with a feeling of a void that cannot be measured or compared. You filled our lives full, with your love that overflowed from you, your cup was always half full, never half empty. Your beautiful smile that could light up a room on the darkest of days. Your grace and compassion for others before yourself was a thing that never ceased to astound me. I can't help but wonder what the rest of your life could have been like if it hadn't have been taken away by this horrible disease called Neuroblastoma. The things that you could have accomplished, the people that would have been positively affected by your kindness, the lovely children you could of had, the students that you would have helped to see life as a fun and exciting adventure just as you did. You have given us the feeling of hope. Hope can take on so many forms and is so vital in the pursuit of a cure for this disease. Your "Shania's sunflower of hope" is like a bright beacon in our hearts that we will not let dim for the sake of the children that suffer in pain that is indescribable. Your dream and hope to help them will not be forgotten. Shania has four hundred and eleven bravery beads. Each bead represents an operation,x-ray,transfusion,blood work, ect... all of the scary procedures that these kids have to endure. She kept track of everyone that she needed, she was proud of this chain of beads because it represented the courage that it takes to try and survive through the pain that these children suffer.

We would like to thank Justine Mohan from http://www.childslife.ca/ for setting up a Shania's Sunflower of Hope donation box and shirt order form on her booth at the Cornell Picnic tomorrow http://www.mycornell.ca/ also a thanks to Gayle for putting together a very touching tribute DVD to our Shania last week.

I will always believe in Shania I will I will!!!!!!!
I will always believe in Shania I will I will!!!!!!!!!!!!!
I will always believe in Shania I will I will!!!!!!!!!!!!!!!!!!!
With love that is true,
Shayne,Karen,Shannon&Whiskey.

So proud, so brave.

Shania with her bravery beads. She was so proud of her bravery beads, they grew to be eleven feet ten inches long. She was so brave. June 13 2007.

Cheek to cheek

Shania and Shannon at Sick Children's Hospital showing there love for each other
cheek to cheek. June 03 2007

My buddy old pal

I found a CD that has the classic movie Doctor Zhivago's theme song, it's called Lora's Theme. I'm listening to it right now on repeat. It is such a soothing melody. I woke up a little while ago and just started to think about our Shania right away. It's so hard not to, we miss her so much. All of the great memories that we have of her, but it hurts so much just remembering them right now. I want to watch all of the home videos of our family but we can't do that yet. Hopefully we will soon because we miss her so... Years ago when Shania was younger she came up to me, I can't remember what I was doing at the time, but I guess Shania thought I needed cheering up or she just wanted to kid around, But she put her cheek to mine and said " how are you doing buddy old pal, pal old buddy, old buddy pal, pal old buddy,buddy old pal". And I started to laugh, and do you know when you get one of those laughs when you can't stop laughing, and the more you try to stop laughing, the more it makes you laugh, until your stomach starts to hurt from laughing so hard, well that was one of those ones. So this kind of became our little joke. Anytime one of us needed cheering up or we just wanted to kid around we would put or cheeks together and say how are you doing buddy old pal , pal old buddy, buddy old pal. Well the last night that I had a sleep over with Shania which was the second night before she passed away. She was labouring with her breathing, so she was having to use her stomach muscles more and more to breath, from either the cancer in her lungs or the fluid around her lungs. Anyways Shania asked me if I could rub her tummy, so I said sure and asked if I could snuggle beside her and rub her tummy. Shania thought that this was a good idea and slide over to make room on her little pooh bear covered bed. She put her frail arm around my neck and I put my cheek to her cheek, I said "I love you buddy old pal" and " She replied " I love you too buddy old pal" and the tears started to flow. We just lay there me rubbing her tummy, her with her arm around my neck, cheek to cheek for the longest time. It was one of those special moments that take your breath away. I wish it didn't have to ever end. I miss my sweet little Shania so much, it just hurts so bad and seems to come in waves. I miss my buddy old pal more than words can say. I hope that time will fade the pain, so we can remember all of those "beautiful moments that take your breath away" without the feelings of dis pare.

I would like to thank everyone for all of your support of our family during this very difficult time right now. Thank you for the beautiful cards, flowers and the continued financial support of Shania's cause. Also a big thanks to Nicole Lightfoot and her mom and dad, Becky and Dean for having a bake sale at the corner of there street in Waterdown Ontario. They raised over one hundred dollars for Shania's Sunflower of hope. Last night we went over to the Markham Veterinarian Clinic and Shannon picked the winner for the draw on a beautiful Sunflower picture. They also had a sunflower garden in the window, so when someone made a donation they would post a sunflower on there window. Some one there made pet treats and sold those along with Shania's shirts and jewelry. A percentage of the pet procedures went to Shania's cause also. They extended the Shania week into two weeks and made a grand total of "one thousand eight hundred and sixty three dollars and twenty six cents. If anyone is looking to take there pet to get loving care. This is the place, these people are amazing, thanks again from the bottom of our hearts. Have a great weekend and give a hug to your loved ones, because a hug can mean so much especially if it's cheek to cheek
:)

I will always believe in Shania I will I will!!!!!
I will always believe in Shania I will I will!!!!!!!!!!!
I will always believe in Shania I will I will!!!!!!!!!!!!!!!!!!!
With love that is true,
Shayne,Karen,Shannon&Whiskey.

Shania and Mickey :)

Shania didn't get well enough to have her first wish, which was to go on the Disney Cruise. But she never let that get her down. Here she is with Mickey June 09 2007

We miss that smile, but we will never forget it. With love that is true Shayne,Karen,Shannon&Whiskey.

P.S. When life gives you a lemon, just make lemonade and sell it to raise money for Neuroblastoma Research. But most important of all, just like Shania would say, turn that frown upside down and keep on smiling. she sure did :)

So Happy !!!!!!!!

Shania making her first phone call on her own phone and phone line :)
July 10 2007

So many special moments

Shania is gone but will never be forgotten. She will live on with her dream, which is to find a cure so no other child will ever have to go through what she did and suffer from this disease. She will live on in our hearts, with the so many special moments that we got to share with her. We miss her so much! It hurts so bad not to be able to see her big beautiful dimples, vibrant green eyes, sweet smile, that voice that said so many nice things to and about so many people. Everywhere we look we remember those special moments and it makes us wish that we could have her back so much. We would like to thank everyone for coming out and saying fond good byes to our Shania. Also we would like to thank Monica Valitalo(Funeral Director) for helping us make shania's funeral a special goodbye and celebration of her life. And Thanks for the moving tributes by Rev. Dr. Vernon F. Gunckel, John King (honorary Grampa and our Neighbor),Mr Mayor(as Shania called him) Mayor Frank Scarpitti, Uncle (Billy) Bill Francis, Aunt (Dan Dan) Danielle Johnston, Grandma Sandra Johnston, Kari Kangas (Family Friend). We hung up Shania's beautiful quilt behind her, which was made with love by Shania's friends from Reesor Park School. We also had Shania's Leafs hockey shirt from when she was a baby, which was signed by Ken Dryden. Thank you Tanya Dallaire for coming and having a "stamp it up station", so people could make there own personal cards to say good bye to Shania. We put all of her favorite cuddles in the coffin with her along with some picture of us as a family. The coffin was called Canadiana which could be signed with colour markers by her friends that wanted to. Shania would have loved this idea because she loved to doodle and write sweet notes all of the time. We spent a couple of days going through all of our pictures to put up on the beautiful sunflower boards that my Dad,Sandra and Danielle made. Shania's Aunt Sandy, Aunt Bonnie, Grandma Coombs and Carol helped put all of these great memories into small photo albums from Shania as a baby up until now. Thanks for that I don't think we could have done it without you. Ruth Roberts and Syd Birrell did a beautiful rendition of the song that Shania wrote at the hospital. Ruth also played a song called "Skye boat song" which Shania used to ask her to play over and over again. It was very uplifting, thank you for doing this as a tribute for Shania. Our family would like to thank everyone for coming out for to the celebration of Shania's life. Monday I picked up the rest of the flowers from the chapel. We went over to Markhaven retirement home and asked if they wanted some as a gift from Shania and they gladly excepted them. Next we dropped off the sunflower balloons and a bouquet of flowers off at Markham Veterinarian Clinic whom is having a Shania's week to raise awareness and funds for Shania's dream. They had planned this week out awhile ago and asked if they should still have it. We would really like to carry on Shania's dream to find a cure and thought that it would be great. They are selling Shania's shirts and jewelry also they are raffling a lovely sunflower picture. As whiskey would say "you guy's are purrrrrrrrrrrrrrrrdy special". Thank you for honoring our Shania with this week. The balloons were donated by Balloon Experts, when Monica from the funeral home called to purchase them and they found out that they were for Shania, they said no charge. These are examples of what life truly is all about. People uniting together to help others. Everyone can be a piece of the puzzle. It feels so good to help others, I think that helping others is what will help our family cope with the loss of our sweet Shania.
We had one last stop for the day and that was in Waterdown, where I grew up. We placed the two reefs that we had gotten for Shania's Celebration of life on a Friend Cam Murray's resting place. Along with his parents whom are beside him. They all were taken to early by cancer also. It felt good to continue helping Shania to spread her love. We had called my dad to tell him that we were coming down and he met us there. His best friend John Kane is resting about six rows
up from them. We asked him if he would like to place one of Shania's reefs there. He did and had a moment with him. This morning when Shannon got up she asked if we could make a breakfast in bed for Karen. So that's what we did. Shannon wanted to make a smilie face out of the bacon, cut up apples for the head and ketchup for the nose. I said to keep an eye out that Karen didn't come out when we were making it. And Shannon said that Shania would have liked to make a sign to slide under the door to tell her not to come out, which she had done before. I will miss these special little notes that she used to make up. Shannon asked us if we could have a Shania special night tonight. We used to have mommy or daddy special nights as a surprise all the time, they loved to do this. Shania and Shannon would make up signs, rehearse a dance show, help prepare a special meal and get all dressed up for the big surprise. It was so exciting to do this, it made you feel so good. Shania would even make up best Sister,Mother,Father awards for us. We would hide and jump out when one of us got home. We had all the fine cutlery out and all of the candles lit. They were so fun. So to answer Shannons question yes oh yes, yes, yes yes !!!!!!!
We will always believe in Shania we will we will !!!!!!
We will always believe in Shania we will we will !!!!!!!!!!!!!
We will always believe in Shania we will we will !!!!!!!!!!!!!!!!!!!!
With love that is true,
Shayne,Karen,____ &Shannon

Sunflower Shania

Sunflower Shania
So beautiful and bright.
Cancer has come to take you,
but will never take your light.

Your strength and determination.
Your dignity and grace.
Your beauty and your smile
upon your sweet little face.

You have taught us all
so very much.
Our lives, our hearts,
you will continue to touch.

You have showed us all
how much one can do.
And now your community
will carry on this fight for you.

You will continue to lead us
from up above.
A sunflower will forever be
a symbol of love.

Sunflower Shania,
so beautiful and bright.
Cancer has come to take you,
but it will never take your light.



By Anji Sharp and family.

Shania and Whiskey on her bed sharing a special moment. July 09 2007.

She loved her whiskey :0)

So Beautiful !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Shania got her fairy wings today. She passed away peacefully this morning around eight o'clock AM. But not before she gave Karen and I a big hug at the same time, like a caring mother would to make them feel better and not to worry. She was up since one in the morning. Karen had the sleep over night last night, and she said to Karen " mommy you go and lay down and try to get some sleep". This is what made Shania so special, even when she was dying she was thinking about other people. She had her favorite meal last night Loblaws chicken and potato wedges. And made a joke about getting them. She said not to tell them that you want chicken and wedgies because they might ask you to turn around and give you a wedgie. This is another thing that we loved about Shania, was her incredible sense of humour. She was really struggling to breath this morning when I woke up at five. Shannon woke up around seven and came in. I asked Shania if there is anything that she wanted to say to Shannon. She said "I love you" and Shannon said "I love you too". We kept telling her that we are with you, and that we will never forget you. You will always be in our hearts forever and ever with love that is true. Shania asked if we could turn up the oxygen and I checked but it was at the maximum that it could go. She began to fall into a dream like state. She was talking with her eyes closed and said " I want to stay here because it is nice." And Karen asked "where are you" for which she replied "I am at Sick Kids" so Karen said "yes it is nice". We are so glad that she was having nice thoughts at this time. It is her tribute to all of the fine people that dedicate so much to these kids and this incredible hospital they call The Hospital for Sick Children, it was her home away from home for the last year and she loved everyone there. I phoned her grandparents, and they said there good byes to Shania also. She couldn't respond but I'm sure that she could hear them loud and clear. This is so heart breaking to go through, and I don't want to begin to explain how I feel right now. But I can say that she looked so beautiful and at peace once she had left us. With what looked like a faint smile on her face and we could still see those pretty dimples. This cancer couldn't take those away. Karen, my sister Danielle, and my mom did her nails up and my mom put some lip gloss on her. We left her frilled tinker bell pyjamas on her, and we think that she will have them for the funeral because she loved them so. She listened to her "loves first glow CD till the end. My love for her will never dim as long as I live. I am as proud as a father can be, to be given this privilege of having Shania and Shannon as my daughters. If anyone would like to call Shania and leave a message on her answering machine 905-201- 8998. I think she would like that. You can here her voice on the recording. Please just don't call to late at night thanks. The funeral viewing will be at Elgin Mills Chapel and visitation centre at 1591 Elgin Mills RD East, Richmond Hill on the South east corner of Elgin Mills and Leslie St. Viewing will be on Saturday July 21 at 6-9 PM, and a second viewing will be on Sunday July 22 from 12-2PM with service to follow to get a map go to www.etouch.ca . If anyone would like to make a donation to Shania's Sunflower of Hope cause, you can do so at any Canada Trust, account # 5212832 all proceeds going to the James fund for Neuroblastoma Research at Sick Children's Hospital.
I will always believe in Shania I will I will!!!!!!!!!
I will always believe in Shania I will I will!!!!!!!!!!!!!!!!!!!!!!!
I will always believe in Shania I will I will!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Her dream will live on,
With love that is true,
Sincerely,
Shayne,Karen,Shania&Shannon
P.S. Shannon wants to say something about her big sister: I love you and I like you. You are sweet and you are nice. I miss you Shania.
Love Shannon.

Thanks for the invitation.

Shania just isn't feeling up to going to the live show of Canadian Idol tonight. She really wanted to go but as I said before her body isn't as strong as her spirit. We would to like say a thanks for the invitation from Zack and CTV Canadian Idol. Last Tuesday Shania went to the previewing of Harry Potter, we went down to Warner Bros. Toronto head office. We were to meet her friend Meredith there to watch the movie with us. We didn't bring Shannon because we felt that it would be to scary for her, she had a play date with Shania's last year teacher Mrs Wellman and Shannons S.K. teacher Ms Long. We headed out with time to spare so we could pick up some snacks for this special night out. By the time that we had gotten the snacks we were right on schedule to be there on time, only to pull up to the blue stained glass building at younge and Hwy 401 to find out that they had moved two blocks north on younge st. So we rushed over to there new building and met up with Meredith and her mom Michelle. When we went in Catherine Mortimor of Warner Bros. took us into the theatre they have. She had gifts for Shania and Meridith Shirts, hats, posters, a wand for Shania. They had popcorn and pop already for us. We asked Catherine if Michelle, Meridiths mom (whom was just dropping her off) could stay also, because we were only supposed to have four people for the show, but she said no problem. It is about a fifty seat theater and we had it all to our selves. It was great, we took some pictures and then it was show time. I couldn't believe how fast the movie went by it's very action packed. Shania got a little scared at the end because she thought that Harry had died. We would like to thank Catherine for being such a great host, Holly Neilson from Warner bros. Sarah Fobert and Karen Fung from Sick Children's Hospital, Warner Bros. and everyone else that helped make this such a special night for Shania and her friend. On one last note when we were leaving the Warner Bros. parking lot and pulled out onto Younge St. Karen spotted a lone sunflower growing in the centre medium of the road through a small crack. We both smiled and I have admit I got a few goose bumps. Shania's breathing just seems to be getting more and more laboured she is using her stomach muscles to breath now. She is wearing Tinker Bell pajamas right now, which she got from one of friends at her party.
I do believe in Shania I do I do!!!!
I do believe in Shania I do I do !!!!!!!!!!
I do believe in Shania I do I do !!!!!!!!!!!!!!!!!!
With love that is true
Shayne,Karen,Shania&Shannon.

Another one of those moments

Shania has a nurse coming in to stay at night last night it was Yvonne and tonight it's Millicent, but she still wants us to have sleep overs with her, and that's just what we did. I just moved over to the other side of the bed. Around 3:ooAm she had to go to the washroom, and I got up out of habit. and when she got into bed she put her frail arms out to me, and we gave each other a great big hug and she said those beautiful words that melted my heart "I love you daddy". As George Carlin say's in one of his poems: "life is not measured by the number of breaths we take, but by the moments that take our breath away". and this was one of those moments. We were down at Sick Children's Hospital again today for Plat lets. She didn't need haemoglobin this time. Shania had a party at our house on Sunday with her friends from school. Shania wanted this party to celebrate all of the things that she missed with them at school, like Halloween, Christmas, Easter and Valentines day. So we decorated our house up with all of our seasonal decorations. This is Shania, with all the things that she is going threw. She wanted to celebrate all the fun things in life, with her friends. She got quit dizzy half way threw the party, because she was sitting up in the wheel chair for so long. And probably because she was so excited to see her friends again. We had a special orthopedic mattress for her and she enjoyed the second half of the party watching the magician do his show, which was excellent. They also did mask painting, picture frame decorating, karaoke and all kinds of treats. It's all about living life to it's fullest everyday. Not waiting until tomorrow or the weekend or retirement. Shania wants to be a teacher, and I know that I have learned more than I could ever have imagined from her, what life is truly meant to be about. And I will carry these lesson close to my heart for the rest of my life. Shania said to thank her friends for coming to her party. It meant so much to her to have it. Shania has been invited out to the live show of Canadian Idol by Zack tomorrow night at 7:00PM. We asked Shania if she wants to go, and she said that she does. But we will wait and see how she is feeling.
I do believe in Shania I do I do !!!!
I do believe in Shania I do I do !!!!!!!!!!
I do believe in Shania I do I do !!!!!!!!!!!!!!!!
With love that is true,
Shayne,Karen,Shania&Shannon.

Hello everyone from Shania :)

"I got my phone and T.V. and they are very pretty. My T.V. can play music. I'm excited to see my friends at my party".
Love Shania :)



We are going down to Sick Children's Hospital now to get a transfusion. Shania had something to eat at four this morning(this being the first bit of food she has been able to eat in a while) and I asked her if there was anything she wanted to say on the blog. She loves playing " loves first glow" on her DVD/CD player it sounds amazing, she plays it night and day. I will try to update later today.
With love that is true,
Sincerely,
Shayne,Karen,Shania&Shannon.

Shania's letting here fingers do the walking:)

Shania got her phone and it's all hooked up. We had to go back out on Tuesday because they discontinued the model that Shania wanted, and were all sold out when Children's wish foundation went to get it for her. But I tell you what a smile when she got her first phone call. They got her eights and nines in her phone number because those are her favorite numbers. This phone has all the same features, but is grey and silver instead of just silver. She's been getting phone numbers and calling friends. This is a big thing for an eight year old girl and she is really enjoying it. The only thing is that her body isn't keeping up with her spirit. She is on the oxygen most of the time now. Monday night after her blood transfusion she was feeling really well and asked me if I would have a sleep over. I thought that this was a great idea and I got Shania's foam mattress and pillows from the living room and set them up beside her bed. Next was the popcorn and then we started reading a book called "stupid kids jokes" and Karen said that she had a hard time falling asleep because we were laughing so loud. It was late, but we were just having to good of a time to go to sleep, and besides it was a sleep over. And a great one at that. Karen had one last night and they painted there nails and had just as much fun. Shania calls out for us, just to make sure we are still there, because she is getting frightened. We hold hands a lot and I can feel the pulse of her heart beating so fast. And it scares me to! Shania got another blood transfusion today. The lack of sleep is catching up to me. I will try to update about Shania going to see the Harry Potter movie and about a party that Sick Children's Hospital is having for Shania on Sunday. As long as she is well enough. Thank you everyone for your support I can not put into words what it means to us.
With love,
Sincerely,
Shayne,Karen,Shania&Shannon.

I do believe in Shania I do I do !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Our Fairy Princess is still spreading her love. Shania was so happy to be able to go to the Toronto Zoo on Sunday. It was supposed to be very hot out, but it rained in the morning and then stopped around noon. It was about twenty six degrees out with a nice breeze. We were concerned that the humidity would be to much for her breathing. But the weather worked out just right. We went to the kids zone and checked out all the fun stuff they have there and then Shania started to get a head ache so we started to head out after about an hour of being there. Heidi, Shannon and Danielle walked us to the front gate and we said our good bye's as they carried on there Zoo adventure. Shania asked if she could have a Popsicle before we left so we stopped at the partridge cafe at the entrance. And while we were there we met up with Shania and Shannon's Grandma and Grampa Coombs. They had bought passes for the Zoo mobile and asked Shania if she wanted come along. Shania thought that this was a great idea, seeing that she had never been on it before. So after Shania had her Popsicle and taken a picture of the partridge that was walking around our table. It was off on the Zoomobile, luckily it is wheel chair accessible. We enjoyed being able to see the whole park and all the animals in a short period of time. Near the end of the ride the train stopped to drop off and pick up more passengers. It so happened to be right in front of the Giraffe enclosure, which is Shania's favourite animal. A big beautiful giraffe came right over close to the fence and Shania was waiving to it as we went passed it. After the Zoo mobile Shania was getting tired so Grandma and Grampa coombs walked us out to the van and we said our good byes. Monday it was back down to Sick Children's Hospital for another transfusion, which they figured that she would need seeing that Shania's bone marrow hasn't fully en grafted and they don't think will because she has the Neuroblastoma cells there again.
I've got to go, Shania just woke up and had to go to the washroom, she is having a hard time breathing even with the oxygen, and she wants me to stay with her. I will try to update more when I get a chance.

"I love you Daddy"

I have a Tim Mcgraw CD called "Set this Circus Down". My favorite song off this CD is "grown men don't cry" and this is how the song ends:
"I don't know why they
say grown men don't cry"
I'm sitting here with
my kids and my wife.
And everything that I
hold dear in my life.
Got so much to be
thankful for.
Then it's up the
stairs and off to bed
and my little girl
says I haven't had
my story yet
and everything
weighing on
my mind disappears
just like that.
When she lifts her head
off her pillow and says
"I love you dad."
I don't know why they
say grown men don't cry.
I don't know why they
say grown men don't cry".
I have to carry Shania to bed now and she cuddles her head under my chin. The other night she said those same words to me when I tucked her in, "I love you daddy" and as the song say's I don't know why they say grown men don't cry. Shania is still at home, but she still has to go in for blood work. We went down to Sick Children's Hospital on Friday to get Plat lets and Red blood cells. They hooked her up for plat lets first and then put her on oxygen. Doctor Baruchel said that he wanted to have a meeting with Karen and I. So Jes who is Shania's child life specialist, came over to stay with Shania while we went to this meeting. Shania really loves Jes and was happy to see her again. We went for the meeting with Doctor Baruchel, and had a feeling it wasn't going to be good news. Doctor Baruchel is an outstanding Doctor in his field and also has a great bedside manner which is not learned it is something that comes naturally. Shania loves him also, you can tell he truly cares about trying to find a cure for these children. He told us that he feels that Shania only has days left to live, because the cancer in her lungs is spreading so fast and is in her liver now. He thinks that Shania is bleeding in her skull , chest and liver from the cancer lesions. They want to make sure that the palliative care team is in place. They weren't sure if she would make it through the weekend. These are not the things that any parent wants to hear about their children, and I find it very hard even to write about it. That night I couldn't fall back to sleep after I took Shania to the washroom at 12:30, I started watching the movie Dr Zhivago on TV, a classic movie that follows the character Yari a doctor in Russia during WW1 and the Russian revolution. Around 1:30 Shania called to go to the washroom again. She asked me in a kind motherly way, if I was still up and said that I should try to get some sleep. I gave her some privacy while she was going to the washroom, and went back to watching the movie. It was at the point when the war is over and he was saying goodbye to everyone at the make shift Hospital as they left. and the scene started by looking on a bouquet of sunflowers. They were wilting and the pedals were falling off them but they still looked beautiful even though they were wilting. They play the stunning melody that is played through out the whole movie. This movie is so true to life in the manner of how life can be so full of beauty but also tragedy, and how you have to make the most of the time that you have. I am going to see if I can find a CD with this melody on it for Shania. She is getting a massage right now by Heidi our friend and massage therapist, after that we are all going to the Zoo. Along with Heidi's niece Danielle(Dan Dan). Hopefully it doesn't get to hot for Shania, she really wants to go. Shania has been invited for a personal screening of the Harry Potter movie "The order of the Phoenix" at Warner Bros. Toronto head office on Tuesday, Shania is very excited about this also.
I do believe in Shania I do I do!!!!!
I do believe in Shania I do I do!!!!!!!!!!!!
I do believe in Shania I do I do!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
With love that is true,
Shayne,Karen,Shania&Shannon.

Home sweet Home

Shania had a CTscan last Thursday before she was to have this fluid removed from around her left lung and the Doctors saw something and wanted her to have x-rays done on her left leg. On Friday we found out that Shania has a fractured left femur, we were floored, how could this be. They said that her bones are very brittle from the Radiation and chemo, this could of happened anywhere. Shania asked the doctor if she could see the x-ray, so the Doctor cleared the tables in the office out of the way and we wheeled Shania in to see her x-ray. Some how I don't think he gets to many kids ask to see there x-rays, but he happily obliged. Shania has an appointment with the orthopedic surgeons at the fracture clinic on Monday. They said that they don't think that they will operate on Shania right now, and want to see how it heals up on it's own. We brought Shania home Saturday morning, She was hoping to come home on Friday, but she didn't finish her CTscan until later in the afternoon. We felt better keeping her in one more night, seeing that she had the fluid removed from around her left lung and also a bone marrow aspirate earlier in the day. She was very excited to pick out a phone for her room :) Once we got everything settled in at home, it was off to pick out that phone for her wish. We looked over all of the phones twice and then she had her phone picked out. It's a Panasonic CID Dual Keypad with: Built-in digital answering machine, 4-way conference calling, talking caller ID, 1.6" colour LCD, dual speakerphones and keypads, intercom/conference/transfer, voice paging, USB port and real music ringer, it's a nice phone and my goodness she deserves it, after everything that she has gone through in the last year. She can't wait to call all of her friends on her own phone. It is so nice to have this time to spend together at home sweet home. We have been focusing on all the fun special things that we can do together and not the things that we can't. Yesterday we went down to the hospital to find out the results from the bone marrow aspirate and to get her blood levels checked. Doctor Baruchel didn't have good news. He told us that this drug Sirolimus isn't working on Shania, and that the cancer is still growing and spreading in her lungs and is starting to show up in her bone marrow now. He also told us that her bone marrow hasn't matured yet nor en grafted. So he wants to take Shania off this drug and wait a week to see how her blood counts do. He feels that they won't be able to do any kind of treatments until her bone marrow recovers enough to handle further treatments of possible low dose chemo.
We would like to thank Amy Bursey who turned a big eight years old last week. She asked her friends to help the doctors find a cure by giving from her birthday gift as donations for Shania's cause. And there card said "Think of this little card as a GREAT BIG hug! " Love Amy, Ryan, Jeremy, Catherine, Miranda, Alysha, Danielle, Eliza, Krystin, Caroline, Antonio, Hannah, Julia, Jamie, Sandra And Lewis Bursey.
This is a beautiful birthday gift of the heart. Thank you again Amy, Friends and Family. Happy Birthday Amy :)

I do believe in Shania I do I do !
I do believe in Shania I do I do !!
I do believe in Shania I do I do !!!
with love that is true,
sincerely,
Shayne,Karen,Shania&Shannon.

"above all, never give up hope"

Shania got a call at the hospital from Karen this week and got very excited while on the phone. When she got off the phone she told me with big smiles that Zack from Canadian Idol said that he would like to wear one of Shania's Sunflower of Hope t-shirts on the show. And true to his word, last night he wore a grey shirt, that was beautifully decorated by his son and daughter. He even stood up and showed everyone Shania's shirt and wished Shania well. This was an incredible thoughtful, kind and generous thing to do. Thank you again Zack, Lisa,Maddie(Lisa's daughter and Shania's friend) and CTV's Canadian Idol for putting a huge smile on Shania's face. You guy's Rock!!! Shania is feeling much less pain now that she has had her five sessions of radiation. The palliative care team also seems to have a good mix of pain medication for Shania now and Shania was hoping to come home last night. But she didn't get her CTscan until yesterday afternoon, and the Doctor on call yesterday said that Shania has some water in her left chest putting pressure on her lung. They want to use a needle to extract this fluid before it starts to restrict her breathing. This fluid is most likely from the cancer in Shania's lungs. We didn't here anything from Doctor Baruchel as to the status of this cancer in her lungs yet, but will today. Karen Fung is Shania's Haematology/oncology Social worker. And she asked Shania what she would like for a wish from the Children's wish foundation. Shania said that she wants to go on a Disney Cruise, so she talked to the Doctors and they said that they are worried about Shania's pain right now, and that the medical staff on a cruise wouldn't be able to take care of this safely. So Karen Fung asked Shania if their was anything else that she would like for a wish. Shania said that she wants her own phone line and grey/black phone in her bedroom and a pair of Heallies( The shoes with the wheels at the back). I offered Shania that I would get the phone and heallies right now at a store if she wants to pick something else for a wish. But she told Karen Fung and I that we both aren't working right now and that she doesn't think that we can afford it. This is the Shania that I am so proud to be the father of !!! She is always thinking about others before herself. She never ceases to amaze me. I am having a hard time typing this because of the tears in my eyes right now, as often happens when I write about this gracious family that I'm so privileged to be a part of. The other day I was down stairs in the Hospital getting Shania pistachios and I stopped into the library that they have. The first book I looked at was a thick book called "Choices in healing", And this is the page that I opened it to "Never giving up hope" . This is a bit of what it said: This chapter is about the use of hope in cancer. A wise man once said to a group of cancer patients in the Commonweal Cancer Help Program: " Above all, never give up hope. You can fight for your life, even in the face of tremendous odds. Give yourself permission to hope, even in the face of all the statistics that physicians may present to you. Statistics are only statistics. They are not you. There is no such thing as false hope. I saw the truth of this in my father's experience, and in the experience of many other people with cancer who have far outlived their prognosis". As you can guess I signed this book out and brought it up to Shania's room. When I went to open this thick book on healing(conventional and non conventionally) I opened it to the same page again without even trying. There are six hundred pages in this book, oh my, this gave me goose bumps. What are the odds of doing that twice. Karen was at the school the other day and noticed that their was a poem posted on the bulletin board by the front office for Shania. We asked Mrs Porter if she could find out if the young man who wrote this minds if we put it on Shania's blog and here it is:
God gave you the strength,
he gave you the power.
Then with that, you made a sunflower.
You have given hope to thousands of others,
you made it easier for children and there mothers.
We can't feel your pain,
we can't feel your sorrows.
We can only hope for a better tomorrow.
We will face this together, you won't be alone.
We will fight this forever, until you get home.

By Eric Poulos


Thank you Eric for this heart felt poem.
Sincerely, with love,
Shayne,Karen,Shania&Sannon.

All happiness starts from a smile:)

About three or four weeks ago I came home from the hospital to find two boxes on our front step. One to Shania, One to Shannon and a huge smiley face flower wrapped through our door handle. They were from the grade eights at Reesor park school. The boxes where full of toys, games and all kinds of other fun stuff. Also there was a beautiful photo album with pictures from the fun fair and lots of thoughtful letters to Shania inside this album. Inside of Shania's box there was a stuffed animal giraffe with a piece of paper attached to it. And on this paper was a picture of sunflowers with a blue sky as a back ground and a poem. This is what it said: Shania's Sunflower of Hope.
Smile ALWAYS smile!
Because a smile can last a long while!
Never! NEVER frown!
A frown will only bring you down!
A smile is always in style.
All happiness starts from a smile!
So smile! ALWAYS smile!
Hello Shania! A smile can always cheer you up, so just remember to keep smiling! I hope you like my poem, and the little stuffed animal Giraffe! Every time you look at the Giraffe, remember to always smile! Because a smile can last more than a while, it can last forever! We are all hoping the best for you! Keep smiling! Lindsay Jones.
Thank you grade eights you sure did put a smile on our faces. Shania has been receiving radiation again in the same spot that she had gotten it before, lower right spine/pelvis area. This time instead of one treatment of 800, she is getting five treatments of 400. So hopefully this will be enough to knock this tumor out of her spine and alleviate the pain that is plaguing her so. All of Shania's blood counts are holding up except for her platelets, which are low but steady. We will find out next week if this drug Sirolimus is working or not, and if they can go ahead with the Vinblastine. Shania is starting to move around a little bit now that the pain has started to subside a bit again. She has been laying on her one side in the same position for the last week. Karen said that Shania rolled onto her back last night so hopefully it keeps moving in this direction and she can start getting out of bed soon. I was supposed to go switch with Karen yesterday but I've got the flu right now and don't want Shania to catch it. Hope it's just a twenty four hour bug. She has one more treatment of radiation tomorrow. Our family got a kind letter this week from the James Funds Patron Tom Hanks( definition of patron: an influential supporter or donor, a guardian saint) in care of Syd Birrell of the James Fund, here is what it said: 12 June 2007 To the Johnston family Shayne, Karen, Shania, And Shannon. Hello, Johnston family! Word has spread to the West Coast (aka Hollywood) of the tremendous support you have given to the James Fund. Many, many thanks. Knowing that folks like you all are pitching in warms the heart, and keeps us thinking of each other. Which is a very good thing . More good things to you... signed Tom Hanks. Wow! Thank you Tom, Syd and The James Fund for these kind words they definitely have lifted our spirits. You are absolutely right, there are many people like you that deserve credit for this cause. And it does warm the heart to see that there are so many people with good hearts, uniting together to help these children and there families with this terrible disease. United we can find a cure and stop the suffering!!!
Keep smiling :)
Sincerely,
Shayne,Karen,Shania&Shannon.

All things grow with love

Shania was discharged from the hospital on Wednesday night, her blood counts were coming up, pain was coming down from the radiation. So we were very excited about all of this. Karen and I had to talk to Shania about letting us help her. She was in so much pain for the last five weeks that she didn't want us to help physically like: lifting or supporting her. But we said that if she is coming home that she would have to let us help her because if she wants to go swimming and to sleep in her bed she would need some help. She agreed and was just so happy to be able to be coming home. Once Shania let me carry her and realized that the pain wasn't to bad she was more relaxed about us helping her. Shania still cannot walk because it is still to painful for this, but she didn't let this stop her from doing things that she likes, like playing with her dolls,toys, ect... Thursday was a beautiful day out and Shania said she wanted to go outside for a walk. We had a new wheel chair for Shania to use(smaller and more her size plus it can be folded). So around the block we went, what a feeling it was to do this even though Shania was in a wheel chair, it was great to just be able to do this with her again. Watch and hear the birds, feel the breeze blowing all the sweet smells of spring blooms, feel the suns warmth, all of the things that we take for granted in our day to day life's. Shania was enjoying this so much she asked if we could go to the store and buy a Popsicle. Which sounded great to us so we popped back to the house and got some money and off we went to the store for a Popsicle. Shania got a orange creamsicle which is her favorite. On the way home She said that she wanted to see the new kindergarten playground at the school, which Shannon had been telling her about. Once there she asked if she could go in and see all of her friends at school. When we went in the school the Principal Mrs Porter gave Shania a beautiful glass plak with Shania's picture on it, this is what it Say's. Celebrating Student Success 2007 Certificate of Achievement presented to Shania Johnston who personifies student excellence and exemplifies student success in York Region from Bill Crothers (Chair of the board) and Bill Hogart( Director of Education) Also she showed us a mail box for Shania that is at the front entrance of the school, it was full of letters to her so we emptied that out and then found out that all of the primary grades had gone to a play downtown and weren't coming back for another hour. So we went looking for Shannon who was with Ms Long Shannons teacher, we met them in the hall along with Mrs O'niel Shania's grade one Teacher and now Librarian, she took us in to show us all the books that they had for the book swap that they were going to have that day after school. She loaded Shania and Shan up with some books and by that time the kids had come back from the play and it was off to see her classmates, everyone was so happy and surprised to see her because we hadn't planned this visit. Shania was getting tired by now and we headed off home. The School board had invited Shania to a "Applause ceremony" that the school board has for students whom receive the York Regions Citizen of Character Award. We asked Shania if she still wanted to go to this ceremony because we knew she was tired from everything that she had done that day, and she said that she still wanted to go to it that night. Later Mrs Porter came over and up to Aurora we went, this being where York Regions School Board's Headquarters are. We went into the board room where they have the board meetings and were called up where they read out the students achievements and then give them an applause in recognition of there achievements and take there pictures. Karen and I would like thank everyone that has supported Shania and her cause and helped her with this dream to find a cure. Shania woke up in pain Friday morning around three and couldn't fall back to sleep. Friday night she couldn't fall to sleep still, so we called the hospital and they doubled her dose of morphine, which didn't seem to help. By Saturday morning we called the hospital because her pain just seemed to be getting worse. They said that they would try to get her a bed for her instead of having to go through emerg again. But the room wouldn't be ready until three o'clock in the afternoon, Shania was in so much pain that I called back and said that we would bring her right away and by the time we got there they had managed to get a room for her. The pain team doctor came straight away and got her set up on a stronger dosage of pain medication and said that he would come back at dinner time and see how she was doing. Shania was still in huge pain, so he upped her dosage again and said to call if she wasn't able to sleep. He felt that the combination of the pain and lack of sleep were making everything worse and that she was having neuropathic pain, which is what she had before. She has the same symptoms as before,pain from the top of her right leg all the way down to her toes, so we are thinking that it's this tumour that has come back in her pelvis/ spine and pinching a nerve again. I asked the nurse to call the pain team back at four in the morning because Shania still couldn't sleep because of the pain. He came by and upped to the maximum dosage that he could safely give her. And this seemed to finally allow her to fall asleep. Around ten o'clock Sunday morning she woke up and seemed much better. I asked her if she would like to say anything in the blog, which I have done many times before but that she hasn't wanted to do because she is busy playing, which is what eight year old should be busy doing in there free time. But this time she asked me if it was fathers day tomorrow, and I replied that it was today. So she promptly said "yes I do want to right something dad". I got her a pen and paper to write what she wanted in the blog, she started writing and stopped again, then asked if could write down what she say's. So here what she said:

Hello Everyone, how are you:)
On Thursday Tanya the stamp it up lady from my Fun Fair came to my house. Me and Shannon made cards for Fathers Day. We couldn't wait to give them to him, so we gave it to him when we were finished. and mine said " You are the best Dad" and "Happy Fathers Day"
with pictures of flowers stamped on it, and it said on the outside of it "All things grow with love" , all in stamps. At this point Shania started to doze off so I asked her if there was anything else she would like to say and this is what she wanted me to ad: I'm going to sleep right now and I'm dreaming that I am at Great Wolf lodge resort and I'm surfing, Splish splash I'm having a blast at the surfing party in the water. Surfing away. Love Shania. and then she fell back to sleep wow sounds like she is having happy dreams, instead of the nightmare that she is going through with all of this pain. Last week we got some more bad news before she came home. The Neuroblastoma spots on Shania's lungs had more than doubled in the two weeks since the last CTscan. Hopefully this drug can slow it's progress down, I've got to get back to the hospital
I do believe in Shania I do I do!
I do believe in Shania I do I do!!
I do believe in Shania I do I do!!!
Sincerely with love,
Shayne,Karen,Shania&Shannon.

Peter Pan II

We had a meeting with Doctor Baruchel on Friday to discuss what they have planned from here with Shania. Now that Shania's bone marrow is very compromised because of the chemo wiping it out last cycle, and her having to get a transplant again. The plan that they could come up with is to use a drug called Rapamycin (Sirolimus), this has traditionally been used to prevent rejection of kidney transplants and also used sometimes to treat psoriasis. It is in a class of medications called immunosuppressants. It works by suppressing the body's immune system. It comes in liquid form which is good because Shania doesn't like to take pills. Shania's blood work has bottomed out and started to come back up, after she stopped taking the GCF(blood booster). This drug has never been used on Neuroblastoma before, and in the lab it has shown to kill off Neuroblastoma cells. So Shania will be the first person to ever have used this drug for this purpose. Doctor Baruchel wants to start her on this drug either today or tomorrow. The other drug he wants to put her on once her blood work has recovered more is called Vinblastine, this drug has never been used on a Neuroblastoma patient before either. So it will be charting unnone territory from here on out for us as a team. This drug has been used for Hodgkin's disease, testicular cancer, AIDS, non-small cell lung cancer, bladder cancer, head and neck cancer, cervical cancer ect... it will be given intravenously. This drug slows the growth of cancer cells in your body. We are hoping that these drugs will slow or stop the spread of this disease which will buy us some precious time. This cancer is spreading so fast!!! Shania got radiation on her upper left femur on Friday to ease the pain there. We were hoping that she would feel well enough that she could go to Sam's Day Fun Fair For Neuroblastoma Research, but the inflamation from the radiation was causing her to much pain. Shan and I went to support this great cause, Shan had a blast playing all the games and watching the shows they had. Shannon made a wooden box with a sliding top on it for Shania. She also bid on some TY Beanie Babies in the silent auction. She won one bid for Three beanie baby bunnies and gave Shania one of them. It was really uplifting to see so many caring people come out to support this great cause and a special boy named Sam on his birthday. Shania was feeling well enough to come home on a day pass Sunday, she was still in quite a bit of pain and had to go straight from the bed into a wheel chair as she is not able to walk at this point. She finds it painful sitting up right also because she has been in bed for so long. When we got home she just wanted to go on the floor and play with her Polly pocket dolls and after that she crawled across the floor to the computer to play a game called Roller Coaster Tycoon, and with great effort and with no assistance she got up into the chair. She will not let us help her by lifting or supporting her at all. She wants to do it all by herself. Its hard because we want to help her so much, but I guess it's a good thing because it will help build up her strength again. It was to painful for her to sit so I took everything down on the floor and she played it there. This game lets you design your own amusement park and she loves to spend hours doing this, it is quite in detail right down to kids throwing up on the side walks blahhh iggg yuccc. Shania came home Monday afternoon also on a overnight pass because she had a CTscan at 2:30PM and pulmonary function test at 3:30PM, to make sure everything is OK to start her on the Rapamycin today or tomorrow. Before we went for the tests yesterday Shania mentioned that she wants to write a Peter Pan sequel, She had mentioned this before we went into the hospital five or so weeks ago, and we never got a chance to start doing it. So she watched it again, and was writing down all of the characters names to start Peter Pan II. I will ask her if she minds if I put it on the blog as the story goes along. When Shania came home yesterday there was a beautiful gift waiting for her, it is a Lamp with Tinkerbell and Sunflowers up the base of it and a flower petal as the shade. Shania would like to thank the Teachers at Reesor Park for this very thoughtful gift, She is using it right now. Shania didn't want to sleep in her bed because she says it's to painful to climb up on her bed, so she is sleeping in the living room. Shannon asked if she could sleep with her, so how could we say no. Also whiskey had to get in on this to, and is sleeping on Shannon's mattress with them. They are all listening to classical music on the radio as they sleep. It is really a nice sight to see after the last five weeks in the hospital.

I do believe in Shania I do I do!
I do believe in Shania I do I do!!
I do Believe in Shania I do I Do!!!
Sincerely with love.
Shayne,Karen,Shania&Shannon.

Sam's special day

Zack from Canadian Idol stopped by for a visit with Shania. She was very bored before he came by. It must be very frustrating just laying in bed, especially for kids, not being able to get up and expel all that energy that kids naturally have. So when Zack stopped by she was kind of shy, and didn't say to much. He said that he has a daughter and son that are around her age and they love to play hockey just like Shania does. And he invited her out to there ranch style farm to see there horses, which is another love of Shania's. Zack and a friend of ours Lisa short gave Shania a gift package that Lisa had kindly gotten from the show. She is friends with Zack and set up this visit which really cheered Shania up. After he left, Shania set about tattooing herself and everyone that came into her room with Canadian Idol stick on tattoo's, she played the CD's and is really excited about going to the live show when she gets out of the hospital. Thanks Zack,Lisa and Canadian Idol for brightening up Shania's day, and giving her something to look forward to when she gets out of the hospital. Shania is going to get radiation again today. This will be the fourth time that she will have had this done. They will radiate her upper left femur and lower pelvis. This being the latest location of her cancer pain. It breaks our hearts to have this done because there is permanent damage done every time they do this procedure. But we know that it is the only way to rid her of the pain that she is in right now. Hopefully they can start her on this new research study drug. We are having a meeting today with Doctor Baruchel to go over all the details. They still can't start her on this drug until her counts come up. She got hemoglobin and plat lets because they were going down to low for radiation treatment. Her white blood cells are coming up ever so slowly, which is what we want to see. Shannon and I are going to Burlington on Saturday to celebrate a special little boys birthday. His name is Sam Lack and he had this terrible cancer called Neuroblastoma himself. Every year they celebrate his birthday by having a Fun Fair called Sam's day. Everyone is invited to this Fun Fair birthday party with all the money raised going to the James Fund for Neuroblastoma Reasearch at Sick Children's Hospital. Karen and I would like to thank the Lacks for helping us make Shania's Fun Fair such a great day. And Shannon is really looking forward to going to Sam's Day. Shania really wishes she could go too, but she is just in to much pain right now. If you are interested in going out and having a great time for a great cause, this is there website: http://www.samsday.org/ . Its from 1:00PM-4:30PM June 9TH at Brant Hills Community Centre, Burlington. HAPPY BIRTHDAY SAM!!!!
With love sincerely
Shayne,Karen,Shania&Shannon

You are my Sunflower

This poem reminds me of Karen,Shania and Shannon:

Just like a sunflower you started from a seed,
which sprouted from this mothers need.
You were planted in a warm loving place,
where for nine months you took up space.
and like a sunflower I nourished you, with
a mothers love that grew and grew.
I shared with you all that I could,
I always loved you as a mother should.
A sunflower's beauty is beyond compare,
something I think only you could share.
You've grown into such a lovely sight,
as a sunflower would if all was right.
A sunflower can grow as bad as a weed,
when it's not given all it needs.
It can become unruly and not so nice,
just proves neglect has a very high price.
So my sunflower please grow and grow,
share with the world all you know.
But most of all let your beauty show,
for you are the prettiest sunflower that I know.

By P. Kim Rempel

This is a beautiful bit of poetry that rings so true of Karen and our girls. Shania had radiation on her knee yesterday morning to diminish her cancer pain, that was getting worse by the day.
The Doctors can't get Shania onto any cancer treatments until her blood work fully recovers from the transplant of bone marrow, so the cancer just keeps on spreading at this point. They have started to taper her off of the TPN, and she has been eating on her own more and more. The GI specialists had Shania do a CTscan and drink a chalk like substance to see if there is some kind of blockage along her esophagus, but she couldn't drink enough at a time for them to get a good look. But they do feel that there is a spot that has narrowed. The only thing with this is that they can't do anything here either until the blood counts come back too. The Doctors are hoping that by the end of the week her counts will be up enough to start doing treatments again.
I do believe in Shania I do Ido!
I do believe in Shania I do I do!!
I do believe in Shania I do I do!!!
Sincerely with love,
Shayne,Karen,Shania&Shannon.

Ride for Karen

We found out what the spots are on Shania's lungs. The Neuroblastoma has spread to her lungs and also the pain in Shania's knee is back also. Dr baruchel say's that he has only seen one other child get Neuroblastoma in there lungs, it very rarely crosses over to there lungs. Shania went to have xrays of her esophagus to find out why her food is still getting stuck. The GI specialists are going to look at them today, and let us know what there recommendations are. Shania and I have decided that we would like to do the Ride for Karen. The Ride for Karen is a 160KM and 25KM bike-athon to raise money to send kids with cancer to camp. Shania is my trainer and boy do I need one, she has got her clip board and chart all made up. I am not a cyclist and had to clean the dust off of my rusty old bike. It was quite a task just to make it to Canadian Tire and back and that was only 4KMS so to do 160KMS is going to be a big jump, but with a trainer like Shania to get me into shape I can't go wrong. www.rideforkaren.com . June 3RD was the day we went into Sick Children's Hospital and found out that Shania had this cancer last year. I will go into more detail about what the Doctors want to do later, right now I have to go down to the hospital.
I do believe in Shania I do I do!
I do believe in Shania I do I do!!
I do believe in Shania I do I do!!!
with love sincerely,
Shayne,Karen,Shania&Shannon.

Big Beautiful dimples :)

Shania got a MIBG scan done yesterday morning and Dr Baruchel stopped by and said that he can't see any cancer spots on Shania's lungs but we will have to wait until the biopsy comes back to be sure. He does see a hot spot as he puts it, which is showing cancer on her hip/lower back which we already know about. A physio therapist also stopped by in the morning to help Shania with her stretching and exercising, because she has been bed ridden for a while now and can barely walk from all her tendons tightening up. At two thirty Shania went down to the second floor to have a biopsy taken from the spots on her lungs. As the Doctors explained this procedure can be somewhat dangerous because her platlets are so low that she could bleed excessively. Shania was quite fine up until they had to explain all of the dangers involved in this procedure before we signed the consent forms. Our hearts were heavy watching her going off to the O.R. again. As of last night Shania was doing very well from the procedure, no bleeding from the four samples that they took as far as they could tell on the xrays. So we just wait until Friday for the results of what these spots are. We have been seeing those big beautiful dimples again since she had the radiation treatment. Its definitely a sight that we have been hoping for. That long trip down through the tunnel under University st. that links Princess Margret Hospital to Sick Children's Hospital was well worth it. Even though the radiation doses do permanent damage by stunting the growth of the bones in that area. I just wish with all of my heart that Shania's dream will come true, so that no other children have to suffer like this!Dr Ruth stopped by again yesterday and I got to hear The song that Shania had written. Shania sang it and played the xylophone And Dr Ruth played the guitar. I asked Shania if we could put it on the blog and she thought that it was a good idea so here it is:

I love you Forever
You and me, me and you together forever.
With love that is true I love you forever
and ever. You are my mommy, my
mommy forever. You and me , me
and you together forever, with
love that is true me and
you together
forever.

Wow ! talk about having a knot in my throat and tears in my eyes. After all that she has been through, and to listen to our beautiful little girl sing this song to her mommy WOW!!!!!!!!!
With love that is true,
Sincerely,
Shayne,Karen,Shania&Shannon.

I will love you forever

Shania had radiation on Friday to slow the progress of a tumour and alleviate the severe pain that she is getting from it. This tumour is on her spine right at the pelvis area and is squashed up against a bundle of nerves. She has been bed ridden for two weeks up until this point on her one side, not being able to move without excruciating pain even with the three different types of strong pain medication that she was on. The Doctors and nurses say that she is a very strong spirited little girl and she definitely needed it to get through all of the tests and scans that she had in the last two weeks, on top of everything else that is going on with her leading up to this radiation. After Shania got the radiation it seemed that she slept much better that night, and on Saturday she was able to move around and even was able to lie on her other side, which was in so much pain before that. Karen, Shannon and I were so glad that the radiation worked because it is so heartbreaking to seeing her in so much pain and you can't do anything to make it better. Sunday Shania was up to having visitors, and her Aunt Bonnie and Uncle Billy (as she calls him) stopped by with her Nanna and Grampa coombs. Her Aunt and Uncle are out from Newbrunswick visiting and it was great timing for Shania that they stopped by. Also Grandma, Grandpa Johnston and Auntie Dan Dan(My sister) popped in for a visit. Shania was very happy to see them all. Shania and Shannon got lots of pictures of everyone thanks to a very thoughtful gift of a camera from Syd Birrell and the Londons, a family from New York City, whose Four year old daughter Penelope has Neuroblastoma also. Thanks again this definitely lifted our spirits when we needed it most. Shania slept very soundly Sunday night which is what she needs after all that she has been through. Dr Baruchel talked to us yesterday, and said that the CTscan showed that the spots on her lungs have gotten larger, so they want to do a Bi-opsy on Wednesday to find out what these spots are. They did a ultra sound and say that there are a couple of spots that they should be able to get at with a needle. Shania's blood work started to en-graft on Sunday with her White blood cells, Polies and Hemoglobin counts all coming up. Only her Platelets went down but they always seem to be the last ones to come up. The Pain Team as they call them, took her off of the Morphine and ketamine pain medications yesterday, so they were able to remove most of the probes and monitors also. which is another positive for Shania. Karen and Shania went for a walk yesterday, albeit that Shania was in a wheel chair, it is great to see that she is out of bed again.
Dr Ruth (music therapist) stopped by Thursday. Earlier in the week she had asked Shania if she would like to write a song. Shania thought that this was a great idea and wanted to write it for Karen as a surprise. So when Dr Ruth came back on Thursday, Shania had already written her song and they did a rehearsal. Then they called Karen in and played it for her. And this is the title "I will love you forever". Dr Ruth says that she can record Shania and her, and put it on a CD for us. Karen said that she was very touched by this song. I will ask Shania if she minds if we put the rest of the song on the blog.
I do believe in Shania I do I do!
I do believe in Shania I do I do!!
I do believe in Shania I do I do!!!
Sincerely,
Shayne,Karen,Shania&Shannon.

Special helper

Shania is going for radiation today to help reduce some of her pain in the tail bone. She went for a bone scan yesterday and Dr Baruchel said that they found that she has a lesion or tumour where your nerves bundle together at the base of your spine, and this is why she is in excruciating pain most of the time, it 's called Neuropathic pain. Which is as he explains is like having a tooth ache and multiplying that by one thousand!! And no matter how much pain medication they could give, it would never be able to rid her of this pain. She hasn't had a fever for six day's now, so they are hoping that this fungal infection is gone or under control, they will be able to tell more after her CTscan that they are going to give Shania before the radiation treatment. Also her central line came back negative for infection, so this is more good news. They have taken her off of a couple of anti- biotics. The bone marrow aspirate shows no sign of Neuroblastoma in her bone marrow and we will find out about the bone bi-opsy today. this is significant because if it's not in her bone marrow it's not the cancer that is knocking out her marrow and is the dosage of the chemo that did. Which is huge because they would have been very limited as to how they would be able to treat her cancer i.e. no more chemo. The bone marrow aspirate also showed signs of her bone marrow starting to re-generate. Karen said that her white blood cells are up slightly today but her hemoglobin is down and they will have to give a transfusion for that. but in general we are finally seeing something positive coming about with her health. Dr Ruth came by the other day, she does music therapy with the children here at sick children's hospital and it seemed to give Shania a reprieve from the onslaught of the pain, she had all kinds of instruments that Shania enjoyed playing and boy can Dr Ruth play guitar and sing. Shania missed her on Wednesday because she was getting a scan done and she was disappointed about that, music can be a very relaxing and therapeutic way to control pain and stress. Shannon has been very worried about her big sister, she comes to the hospital every couple of days and has seen what Shania is going through. The one day this week she told Shania that she had said to Ms Long(Shannon's teacher) that she wanted Shania's name on the board instead of hers for "teachers special helper". I remember back to when Shania was in kindergarten and how much it meant to be the special helper for the day, this was a very touching thing that Shannon did for Shania, it just shows the love and bond that they have together.
Sincerely
Shayne,Karen,Shania and Shannon.

This time last year

Last Wednesday it was one year ago that Shania first started showing signs that she had Neuroblastoma. At first we thought that she was getting the flu because she had head aches and threw up, but she didn't have a fever. So we took her to the doctors and at the time they thought that she was getting migraines, but they weren't going away. and by the time this long weekend came around we were getting very worried what was going on. When we had the fire works the noise and bright lights were frightening her. which was unusual because she loves watching fireworks every year. They had her get a CTscan but this showed nothing unusual, so our family Doctor set up an appointment to see a migraine specialist but this was not to be, because Shania ended up at Sick Children's Hospital with these severe headaches that weren't going away. They did more tests on her and another CTscan, but still couldn't find anything wrong with her.They said that if we noticed any other symptoms to bring her back. This was very concerning to us because she was having these headaches at night also and would wake up in severe pain. We just had this parents gut feeling that something wasn't right. We ended up back at Sick Children's Hospital again when Shania ended up having stoke like symptoms. This time they did the CTscan with the dye and found Three tumours on the inside of her scull, which were putting pressure on a major artery in her brain. And not long after that we got the news that Shania had this cancer that we had never heard of before. This week and Weekend has brought back a lot of memories of those first heart wrenching days of finding out that our Shania had this devastating disease.
Shania got her bone marrow back up from her Bone Marrow Transplant on Wednesday night to hopefully reboot her body into producing blood again. This can take up to Twelve days to en graft again. It is like her getting a bone marrow transplant minus the massive dose of chemo. Dr Baruchel thinks that the combination of her relapsing so soon after the transplant and having the shingles, that this could be why this last chemo wiped out her bone marrow. Friday night Shania's pain gradually got worse so they decided to switch her over to a self administered pump for morphine, which she can push a button when she feels she needs more pain relief. The highest Shania had gotten on the pain scale from one to ten was eleven up until this point. But by the time it was hooked up Shania had reached a twenty five on this scale. It is not easy to see your child going threw this much pain and you can't take the hurt away. The Doctors are trying to figure out why she is still getting pain surges that are still coming back even with this new type of pump. She hasn't had a fever since Saturday night so hopefully this is a sign that the anti-Fungal and anti -Biotics are working. they are going to do more tests and scans this week to find out how things are going. Karen said that last night Shania asked if she is going to die???? (Oh my!!!!!!!)Karen told Shania the truth, that everyone is doing everything possible to make sure that this does not happen. We are all working as a team to make her get better. We think that this Question has been weighing heavily on her mind since the re laps, and are glad that she wants to talk about what is on her mind. I remember back to when Shania was around two-three years old and she found out that people die, she was so upset, she asked if Karen and I would die, we said that we weren't going to die for a long time and that this was part life. But just seeing that innocent sorrow that people have to die someday, I won't ever forget it. This is the caring, loving, and compassionate girl Shania's has always been.
I do believe in Shania I do I do!!!!
Sincerely,
Shayne,Karen,Shania&Shannon.

Loves first glow

Shania likes to fall asleep at night to this CD called Sunday Morning Classics "Loves first glow"it is a classical mix of Chopin,Mozart,Bach,Tchaikovsky,Brahms,Beethoven ect... Shania has been listening to this to fall asleep since she came home from the hospital for the first time last year. She was having a hard time falling to sleep and asked if she could listen to some ballerina music and this is the one that she liked from our collection of CD's. I couldn't sleep(bad dreams) and am listening to this CD right now, it has very soft soothing melodies and I can understand why she would want to fall asleep to it. On the cover it says "a quiet time to reflect on the preciousness and joy of your life". And that is just what I have been doing. I have so much to be thankful for, a Beautiful wife that I am so blessed to have in my life. I can't imagine my life without her, I have loved Karen from the first time that I met her and always will, no matter what happens in our lives, she is my soul mate for life. Also I am so thankful that Karen and I were able to have these two wonderful daughters together. I used to say that I never wanted to have kids and now I could not even fathom my life without them. They have taught me so much about life and how it is meant to be lived. Shania was our first daughter to open up this new and incredible world of parenthood to me, and I haven't regretted one moment of it. Shannon just added to this joy when she was born. I am as proud as a father can be to have them in my life.
Tuesday night we found out that Shania has spots on her lungs, which they suspect is a fungal infection. To treat this they have added another Anti-fungal drug to the growing number of meds shes on right now. They can't take a biopsy because of the position it is in her lungs. Yesterday we got some more bad news that she also has a infection in her central line(which is the line they give her all of the IV drugs,this goes into a major artery in her neck) she is on three strong anti-biotics for this and any other possible infections. Dr Baruchel talked to us about possible using Shania's back up stem cells that they have banked from her bone marrow transplant, to reboot her blood system. They want to do this because her blood work is not coming back from her chemo treatment, and they are worried that her body will not be able to fight off these infections. Shania's pain seemed to have moved to her tail bone also yesterday. Dr Barrera the clinical/health Psychologist came Tuesday afternoon and talked with Shania. She let Shania know that it is normal to have all of these feelings, and that it's good to talk about what she is going through. Dr Barrera has a very kind and soothing manner about herself, and we are glad that she came by to help Shania cope with what she is going through, she said she would come back on Friday to talk some more. Shania asked me Tuesday if we could go to see the play The Phantom of the Opera when she gets out of the hospital. I will goe to see if I can find a DVD of it for her to watch in the hospital for now. Some people have been asking if there is a bank account somewhere where they can donate to Shania's fundraising efforts, which go to The James Fund for Neuroblastoma Research at Sick Children's Hospital. We opened an account for Shania's Fun Fair at TD Canada trust under the name "Shania's Sunflower of Hope" and if wished we can get tax receipts issued just E-mail us at Shania.com@rogers.com
Thank you everyone for your continued support of our family.
Sincerely,
Shayne,Karen,Shania&Shannon.

Meagan's wonderful walk on Mothers day

Shania got a room Thursday night and her health has gradually declined since then she was having extreme pain in her left leg and the doctors are going to do a Bone Scan to see if they can find a reason why. Karen and I don't want to jump to any conclusions but we suspect that it is the cancer that is causing all of this pain. She has lost more weight and and is now on TPN(Total Parenteral Nutrition ) which is feeding her by IV. A GI specialist is coming today(digestive track specialist) to consult with the Doctors to see if she has some kind of infection in her esophagus or stomach, they are giving her Zantac for a possible stomach problem and hopefully we will get some answers as to why she still is having trouble with this mucositis and can't eat without her food getting stuck every time she tries to eat food. Dr Baruchel is personally calling a child Psychologist to come and help Shania cope with everything that is going on, she is feeling very frustrated and angry with everything that is happening with her write now. One of the things that she was frustrated about was that she didn't get to do the Meagan's walk which was on Mother's Day. Karen and her had watched a show on Meagan's walk while Shania was in isolation having her Bone Marrow transplant. They were both very touched by her story and the walk that they have in her honour to raise awareness and funds for pediatric brain tumour research at Sick Children's Hospital. Unfortunately Shania right now can't even get out of bed and Karen has a pinched nerve in her Shoulder since last week, which is giving her severe pain right down her whole arm. Shania said that she wished she could have gone even in a wheel chair but unfortunately she isn't well enough for that. I asked Karen and Shania if Shannon and I could go in there place and if they could sponsor us for it. Which was the next best thing to them actually going. So Saturday night my sister Danielle came down to Sick Children's Hospital and had a sleep over with Shania, so that Karen could drop Shannon and I off at Ontario Place where Meagan's Walk begins. Shannon Brought her little pink Barbie Scooter with her. With big hugs and kisses off Shan and I went. They have the registration under the big orange tent there and it was a busy place lots of music, food and drinks. They gave us a t-shirt once we got registered and as we were walking around enjoying the atmosphere of all these happy people here for a great cause, we met up with a friend LeeAnne Curtis whose five year old son Cyle also has Neuroblastoma Stage four, next we met up with friends Mark and Julia Wickwire and there two wonderful children Laura and Michael. They asked Shannon and I if we would like to join there group, which was representing Denlow Public School . Julia is Friends with and also went to school with Denise whom is Meagans mother. So it was with great honour that Shannon and I joined this group of fine people. What a beautiful day it turned out to be for this great event, Shan scootered and walked the whole five K route only stopping once for some sunchips to refuel herself. At one point along the route we past a group of people that were all hugging each other and crying in fond memory of someone who had past away from cancer. It was hard not to think of our Shania at this point and I must say that I shed some tears also, I tried not to get to upset for fear of upsetting Shannon on this most Worthy walk. Once we got to the Hospital we went to the side that Shania's room is on. We called up to Karen and Shania so we could waive to them from the street, Karen and Our friend Hiedi waived down to us, Shania wasn't able to get out of bed unfortunately. Next Shannon and I were joined by my Father and stepmother sandra whom were also there visiting Shania, we joined hands with everyone to form a circle around the hospital and give it the biggest hug imaginable, after that we said our good bye's to my Dad and Sandra and took a walk around in all of the festivities going on, and met up with Sarah Legault from Sickkids Foundation, she was helping in the running of this great cause meagans walk, she also helps run the James fund where we first met her and she helped us with Shania's fun fair. Sarah has been a great support to our family, Shania and Shannon are quite fond of her and once Shannon spotted her she ran up and gave her a big hug and kiss. Sickkids is lucky to have such fine individuals as Sarah working for them. She walked with us around the hospital and we happened upon a bucket of chalk, Shans eyes just lit up and she wanted to write something on the sidewalk along with the hundreds of other things that other people had written and the first thing she wrote was Shania, Oh boy ! my eyes started to well up once again. Then she wrote Mommy, Daddy and finally Shannon. After that Sarah walked us to the elevators and we went up to see Shania and Karen. I would have to say that Megagan's walk is an truly uplifting experience and we look forward to doing it as a whole family together. this is there web site if you are interested in joining us next year. http://www.meaganswalk.com/ Shania and Shannon's Aunt Sandy is down visiting from Nova Scotia. She stopped by to see Shania at the hospital on Sunday along with my cousin Doug, she has just recently found out that the cancer in her liver has spread to her bone and bone marrow and she wanted to visit family and friends out here before she starts her next round of chemo treatments. My Aunt, her friend Carol and my cousin Robs girl friend Cathy drove from out east for this visit. I can only try to guess how much pain she must be in, and then to drive that distance to see friends and family, talk about true grit, now I can see were Shania gets it from it's in her blood. Thank you Aunt Sandy for stopping by you are truly inspirational and we love you deeply. I just talked to Karen and she Say's that Shania is in a little better spirits today, she was just about to go down for a Cat scan. I am going to pick up her Friend Jacklyn up from School to take her for a visit and Karen will bring her back, we hope that this will cheer her up a bit more.
With love sincerely,
Shayne,Karen,Shania&Shannon.

$35,000.00 and still counting :)

Shania's Sunflower of Hope Fun Fair has raised $35,000.00 so far and we still are adding on more because of Schools like Edward T. Crowle P.S. and William Armstong P.S. whom still want to add to this total for the Fun Fair. It is very heart warming to see that there are so many kind hearted people that want to support Shania and her cause to find a cure. Shania got a fever Tuesday and went to Sick Children's Hospital to get her blood work checked, they found that she has low white blood cell counts and that her platelets are getting low also. So they put her on Antibiotic by IV just in case she has an infection. One of the problems is that they don't have any rooms available on the eighth floor, so we have been in Emerg since Tuesday and don't know when she'll get a room. Shania is getting the mouth lesions again and the mucositis is also worsening, so she can't swallow solid foods right now. Michelle a child life volunteer ask Shania if she would like to make a wish to go into space. An Astronaut whom happens to be a Doctor is asking kids at Sick Children's hospital to make a wish and he is going to take there wishes into space with him. And Shania's wish was to fly like Peter Pan :)
I do believe I do I do
With love sincerely
Shayne,Karen,Shania&Shannon.

So excited!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Shania was so excited about the Fun Fair and had such a great time, that she has already started drawing up the plans for the second Fun Fair. This time she would like to have a Ferris Wheel ride, which is what seems to be what most people think of a Fun Fair as having, considering that almost all of the colouring contest pictures had one on them. It is great for us to see that Shania is setting a goal to be there for next years Fun Fair. Shania started her chemo on Tuesday and almost immediately started to feel less pain from the Neuroblastoma right away. We are hoping that this is a good sign, and it just keeps going this way. She is up and walking around with little pain and is eating much better now, which we hope will give her some of her strength back. Shania was well enough to go to the York Regions School Boards Celebrating Students Success Awards dinner. Karen and I were her guests and Shannon was Principal Janet Porters guest. We didn't even know anything about this award until we found out that Shania had won it, and that Janet had nominated Shania for this award. They video taped an interview of Janet and Shania for this award ceremony, and Karen and I got to watch it for the first time. It was very touching to here Mrs porters kind words about our daughter and to here Shania talking about helping find a cure for this cancer, so that no other children will have to go through what she is going through ever again. They showed Shania playing with Shannon in her room, and then Shania gave Shannon the biggest hug cheek to cheek, very touching!!! Thank you Janet again, you are an incredible Principal. Shania started to get a severe stomach pains from the chemo near the end of the night and we had to leave before it was over but we were glad that Shania was able to make it out for this Award ceremony. I have to go now, Shania has to go down for her Final day of this round of chemo.
with love Sincerely,
Shayne,Karen,Shania&Shannon.

Hope

(Hope: to expect or look forward to, with desire and confidence.) This word is such a huge part of this horrible disease called Neuroblastoma. Hope for a cure or even to improve the odds for these children. Thank you for supporting Shania's Sunflower of Hope Fun Fair and raising money for the James Fund for Neuroblastoma Research at Sick Children's Hospital. We got the devastating news Thursday afternoon about Shania's re laps. I cannot even begin to explain what it feels like to find out that your child's cancer has come back, especially when the odds are so against them before a re laps. So it was with heavy hearts that Karen and I were going to Shania's Fun Fair. We weren't even sure if she was going to be able to make it, she had a fever Friday night but it went back down after that. Shania has been in an considerable amount of pain since Wednesday and has been getting morphine for it. But we told Dr Baruchel how important this Fun Fair was to Shania and how determined she is to go. He said he would do everything he could to make sure she wouldn't miss it. Karen and Shania got a day pass Saturday morning at 10:30 AM and when they were pulling into the parking lot Shania said "Mommy look at all the cars". What a feeling it was for me to see them pulling up at the Fair Grounds. Our hearts were lifted to see her having so much fun and to see the outpouring of love and support for this incredible girl and her cause. This Fun Fair and it's timing was the best thing possible for our family, because it gave us hope. Hope for our Shania and other children with this deadly disease. Shania started her chemo tonight and seems to be having no adverse reactions so far, hopefully it will do what it is supposed to do and give her a reprieve from the pain and the onslaught of this cancer. On Monday when I got to the hospital she told me that she had a dream while she was sleeping Sunday night it was that she was flying like a fairy from the movie Peter Pan, and all of her friends from School were with her. Wow! I started to well up when she told me about this dream. Shania has won a York Region Board of Education Student Achievement Award and the ceremony is tomorrow night, but we are not sure if she will be able to attend. But if I know Shania she will do her darnedest to get there.
I do believe in Shania I do I do!
I do believe in Shania I do I do!!
I do believe in Shania I do I do!!!
Sincerely,
Shayne,Karen,Shania&Shannon.

What a wonderful day !!!!!!!!!!!!!!!!!!!!

Shania's pain in here knee has moved to her lower back also, and on Thursday we found out why. Our sweet Shania has this dreadful disease back! It has relapsed. Dr Baruchel told us that they will start her on a five day cycle of chemo every three weeks as soon as they feel that they have the shingles under control. Shania wrote a letter about half way through her chemo last year and in that letter she wrote" MY DREAM IS TO FIND A CURE" this is her dream, and dreams can be powerful things. Karen and I are hoping with all of our heart that Shania's dream will come true, sooner than later. Another dream of Shania's was to have a Fun Fair to raise money to help find a cure for this terrible disease, so that no other children will have to go through this again. And that dream came true on Saturday. That dream came true because of YOU, everyone of you that organized this Fun Fair, everyone that sponsored it, everyone that came out and had fun, everyone that supported it. Thank you for making Shania's dream come true :)
I Have to get Shan to School write now, and then go to the Hospital to stay tonight with Shania, I will go into more detail about whats going on with Shania and about the Fun Fair on Tuesday. Again thank you for making our daughters dream come true, you are everyday hero's . What a wonderful day it was !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Sincerely with love from
Shayne,Karen,Shania&Shannon.

Shania just keeps on smiling :)

Shannon and I just got home from emerg at Sick Children's Hospital, Shania was admitted tonight to start on a anti-viral IV drug for the Shingles. This all started last night when Shania came to us when she was going to bed, and said that she had a bump behind her left ear. We took a look, and it looked like small blisters similar to poison ivy. So Karen called Dr Baruchel and he said to take her to our family Doctor to be checked out there just in case she had something contagious and might spread it to other immune compromised children at Sick Children's Clinic. Our family Physician Doctor Mingi said that she thought that it looked like Shingles to her and she relayed this to Dr Baruchel. Which he then in turn said to bring Shania down there to be admitted for this anti-viral drug. Emerg is the only way that they will admit you into a room and they said that she would be admitted to floor 7B. But while we were waiting for her to go from a emerg room to 7B, Shania decided to read us her Hillary Duff book and as she read the book, she was acting out the story as she went. At one part in the book she stopped reading and started to make a funny face and moving her lips all around at us. We asked her what this part meant, and she said that this was sucking face(:kissing:) oh man we started laughing and just couldn't stop giggling after that. We are hoping that the Shingles might be what are causing her to have these knee pains, but we will find out from the PET scan tomorrow and MIBG on Thursday if it is the cancer that has returned or not. Karen is staying at the Hospital tonight and we should know more tomorrow about what is going on.
I do believe in Shania I do I do !!!
Shayne,Karen,Shania&Shannon.

Do you believe in Fairies?

We watched the PeterPan DVD tonight which is the latest version of this fun tale, the girls have seen it a few times and love to sing to the part when Tinkerbell dies and everyone sings "I do believe in fairies I do I do! I Do believe in fairies I do I do!! I Do believe in fairies I do I do!!! And then she comes back to life. It's hard not to believe, when you see your children sing this song. Whiskey is getting better by the day, he is walking around the house and seems to be in less pain every day, but we still have to give him his pain medication and he can't go down stairs for now.
Shania started to get pain in her left knee on Monday, and it has gradually gotten worse every day. Karen and Shania went down to Sick Children's Hospital today to get a full check up and to start to get all the tests done to see what is going on with this and her viral, bacterial, fungal infection? Shania said to Karen as they where going to her Bone scan, " I'm not sure mommy but I don't think that the cancer has come back". Shania is a smart girl and you cannot imagine how much we hope she is right!!! We are going back down to the Hospital tomorrow to get a Ct scan for the possible infection, and she will get a MIBG scan next week. It's going to be a long wait to find out again.
Do you believe in Shania I do I do!!!!!!

Shayne,Karen,Shania&Shannon.

Two weeks today!!!

Shania's been getting progressively worse with Mucositis( Chemo caused this when she got sores on the inside of her mouth and esophagus, and was constantly spitting up thick phlem through out her Bone Marrow Transplant.) It started to gradually go away after she was discharged from the hospital, the only time it would bother her was when she would eat certain foods. But now it seems to be getting worse , we don't know if it is because she has a cold/sore throat or if she has this fungal infection coming back. She has lost some weight, from 63LBS to 57LBS which is less than her sister now. This is a concern to Karen and I because she has zero percent body fat on her to start with. Karen and Shania went down to Sick Children's Hospital on Thursday, and right away Dr Baruchel was concerned about Shania's weight loss. So he ordered x-rays to see if they could see if she has an infection in her sinuses again. They gave Karen a prescription of antibiotics just in case it did turn out to be an infection. Also Shania got a hearing test done, while she was there, and we got some great news from that, they said that some of her hearing has come back, ever so slightly. Which is huge to us because they were saying that she would most likely have to get hearing aids.(The chemo not only makes you loose the hair on your head but also the hair follicles on the inside of the inner ears, thus the hearing loss). "Another one of those moments again", but that was short because we are still concerned about this possible infection. Later that day Julie (nurse coordinator) called and said that Shania should start her antibiotics because they are seeing something there. They will let us know when she can get in for a Ct scan to look into it further. She has gained back a pound since then and seems to be able to eat her food a little better.
We are all very excited about Shania's Sunflower of Hope Fun Fair which is two weeks today!!! We just came in from the garage, where we were working on Shannon's lemonade stand. Wednesday we met the bouncy castle people at the Markham Fair grounds so we could verify the set up. One is called the Fun Fair Park and is 68 FT long, we will have six in total . Also tons of games to be played in the Chucky Cheese style, where you win tickets to be redeemed for prizes at the prize booth. I will try to do more updates on Shania's condition and the Fun Fair, for the next couple of weeks.
Sincerely,
Shayne, Karen, Shania & Shannon.

Good Friday and good friends

We went down to Waterdown(where I grew up) for the annual get together in honour of a good friend Cam Murray Whom passed away from cancer about 18 years ago. This year it was held at the hall were they had his wake so many years ago. "To know Cam was to love him" he was just that type of character. If it wasn't for Cam I would not have met Karen, and for that I will forever owe him a dept of gratitude. Also I would not have had these two beautiful girls, its incredible how sometimes the things you do can have such an impact on other peoples lives, either for good or not so good. Cam fell into the good bracket, his whole family does. His mother and father, Judy and Stew have also passed away from Cancer . Going to there house you always felt welcome and at home. They are all truly missed! This poem was out of Shania's Character Award pamphlet "What we have done for ourselves alone dies with us; what we have done for others and the world remains and is immortal." By Albert Pike, Scottish Rite Freemason (1801-1891). We all had a good time, good food with good friends on good Friday. Whiskey came home Thursday and was very excited to see us when we picked him up. He is having a hard time getting up and walking right now, but that will come along when he heals up a bit. Shania and I have our Leaf shirts on, they are winning 2-1 right now, and we are hoping for them to break this 40 year drought and win the Lord Stanley. We are big on hope around here:)
Go Leafs Go
Shayne, Karen,Shania&Shannon.

Character Community Award

We are so proud of Shania!!! She won the York Regions Character Community Award. The attributes of this award are Optimism, Initiative, Perseverance, Respect, Responsibility, Honesty, Integrity, Compassion, Courage, Inclusiveness, Fairness. We went to the Markham Theatre to receive her award and had a great night out. As a parent it blows me away how Shania and her sister Shannon have come through this last year with all of these attributes.I don't want to sound like I am bragging, but we are so proud of these two sisters. They never cease to amaze us. There was 13 other winners in the other categories and it was very touching to hear their stories. We would like to thank Janet Porter (Shania's principal) for nominating her for this award. We did not know that she had done this until Shania had won. If it was up to us Janet would win the Principal of the Year Award. Thank you for supporting us through all of this. Whiskey had his surgery today and is recovering at the Vet's office tonight. They are going to keep him there for a day or so to make sure he is OK. The doctor did a Femoral Head Excision on his left hind leg and everything went well. He has to take it easy for awhile when he gets home. This will be hard for him as he likes to get into everything around the house. Luckily he is an indoor cat. And no Shania he didn't have to get a cat scan :)
Chow Chow for now,
Shayne,Karen,Shania&Shannon.

Radioathon

We had a great time down at Sick Children's Hospital. They had their annual Radioathon with 1010CFRB, 99.9The Mix and EZ Rock. We where on 1010 and 99.9 which was great, it is nerve racking to be on the radio for the first time but I think we did pretty good. Except on "The Mix" when I did the plug for Shania's Fun Fair and gave March 28TH instead of April 28TH ooops my mistake. Some bad news about our cat Whiskey, he has been acting funny lately and not jumping up on things which is very strange for him, because he is a curious cat by nature and is always checking things out. We took him over to the vets yesterday to be checked out. They found a tender spot on his lower back when he gave them a very nasty hssss. The Doctor recommended xrays and Shania asked the Doctor if he is going to get a cat scan :) We dropped him off early this morning and headed down for the radioathon. When we got back home the Doctor called and told us that Whiskey has a broken Femur at the ball Joint. She said that the surgeon said that this particular type of cat can have a predisposition to this kind of problem, and that he will have to have surgery to either pin the Femur head or do a Femoral head Excision which is the removal of the head of the Femur. We asked for 3RD and 4TH opinions from other surgeons and they are recommending that he has the Excision done, just because it will most likely happen again. They say that he will be able to walk normally and not have any problems. My concern is what if he breaks the other hip? We have until Friday to decide what we want to do, this being the first opening he has for surgery. On a better note the tickets for Shania's Fun Fair are in now hot off the press! We are trying to get a rough estimate as to how many people are coming so we can gauge how much supplies we'll need. So get your tickets early if you can please.
Thanks,
Shayne,Karen,Shania&Shannon.

Spring has sprung!!!

Boy we sure are looking forward to this spring and summer. We have so many things we want to do! Camp Quality had it's Puppet show launch today at Reesor park school. Ronald McDonald house is sponsoring this great children's cancer educational show. It was truly an honour for us to be a small part of this. Also a thanks to Mrs Porter(principal) and Reesor park School for agreeing to host this great cause. Shania started her six month treatment of Cis Retinoic acid which is a vitamin A derivative. This has been found to help cells mature which hopefully prevents the cancer from returning. The main side effect is dryness of the skin. She did a fairly good cut on her middle toe on the weekend, So I called Julie Constantine (Nurse coordinator)to see if she needed to get her tetanus shot again, seeing that the bone marrow transplant knocked out all of her immunizations and she can catch the Chicken Pox again. She said that Shania would have to get that and a Immune Globulin shot also(to help build her immune system). I'm glad I called because we don't need any surprises like lock jaw right now. We found out when our family will be on the radiothon for Sick Children's Hospital, it's next Wednesday March 28TH at 1:00PM for 1010CFRB and 1:30PM for 99.9MIX FM. We are all very excited to be in this fund raiser for these children :)
Chow for now,
Shayne,Karen,Shania&Shannon.

Shania, Shannon and Shayne at Mount Nemo September 2006.
What a beautiful fall day it was.

Princesses

We feasted at the mighty and mystical kingdom of Medieval times. Our Princesses Shania and Shannon thoroughly enjoyed this realm of magnificent horses, brave knights, the match to find a champion of the kingdom and the heart of the Princess Esperanza. We were in the red knights realm and cheered him on. but it was not to be for the red night, as he was fallen by the evil Lord Marshall at the end of the match. After the show we got to meet the brave knights of the realm. Our red knight came right over to Shania and Shannon to say hi and we got some pictures. On our way out I went to the washroom, and while they were waiting for me, the evil knight Lord Marshall chanced upon them. But fear not because our strong and brave little Princess Shannon stared him down for the scoundrel that he is. My Queen Karen said it was quite cute to see.

Shania is so excited to be going back to school tomorrow, and can't wait to see all of her friends. Also whiskey is back home now and seems to have settled right in to his routine again. But I think that he will miss his home away from home, our kind neighbor's John and Marilyn's place. We are blessed to have such great neighbor's. A huge thank you goes out to you, and everyone else who has supported us through this last year. you are every day heros to us. xoxoxoxox :)
Sincerely,
Shayne,Karen,Shania&Shannon.

Is March Break over yet?

On Thursday we had another meeting with Dr Baruchel and he says that everything is going well with Shania's treatment. Shania had two big questions for him. First was if she could have her cat Whiskey come back home and second could she go back to School . His answer was yes to Whiskey, and yes she can go back to School after March Break. And as you can guess her next question was "Is March Break over yet?" Three more radiation treatments left and then we'll see if this spot still shows up on the MIBG scan. We hope it is gone and then they can officially say she is in remission. We are booked in to go to Medieval Times Theatre for Tuesday we where supposed to go with Karen's Mom and Dad Bob and Ida during Shania's chemo treatments but Shania ended up in the Hospital on that day, so we had to get a rain check. I remember the first time we went there it was a blast. Shania and Shannon loved it, especially Shania when one of the knights kissed a white carnation and gave it to her. The look on her face was priceless. So I think it's safe to say that they are looking forward to going again! While we're on the subject of kind gestures, Thursday night we got home from Shannon's skating lesson, and met Danny Shields from Shania's class and his mom Pam in our driveway. Danny was holding a decorated box with money inside. He and his family asked all the people coming to his skating Birthday party to donate money to Shania's fund raising efforts instead of giving presents. Wow!!! another one of those moments that takes your breath away. Thank you to the Shields Family.
Sincerely,
Shayne,Karen,Shania&Shannon.

Shania's Helping Hands

A big thank you to Beth Dawson, Brittany Allison, Sarah Chlan, Doug Mitchell and Elijah Sherk for raising $465.31 for Shania's Sunflower of Hope and the James Fund for Neuroblastoma research. These five incredible students of Reesor Park School (Shania's School) chose Shania for their charity project and had a bake sale last week. They called their fundraiser" Shania's Helping Hands ". Everyone can make a difference in this world and you are fine examples of that.
We would also like to thank Vikki Pappas for ordering 20 necklaces for her daughters Birthday, to be given out instead of loot bags, great idea! Hope you have the best Birthday ever Georgia!!

Shania has finished day six of radiation and is still not showing any side effects yet, which is just fine by us.
Sincerely,
Shayne,Karen,Shania&Shannon.

So far so good

Shania has finished four days of radiation and hasn't had any side effects as of yet, which is a great relief to us. She could get an accumulative effect of fatigue from the radiation still, but so far so good. We all went to a play at Shania and Shannon's School and really enjoyed ourselves. It was great for Shania to see all of her friends from Reesor Park. Hopefully she will be back soon. We all have been invited to be in the radio-a-thon for the Hospital for Sick Children at the end of March. We don't know all the details yet but it sounds like it will be fun. I think EZ Rock is one of the stations but don't know the rest yet. They have you tell your experiences of what the Hospital means to us and how things are working out. Also Camp Quality is launching their puppet show at Reesor Park with Ronald McDonald house as the sponsor. It is a great honour to be a part of this function. This will be on March 22nd at 11:00 AM.
Chow for Now,
Shayne,Karen, Shania&Shannon.

Good luck bears

Shania had her first radiation treatment today at Princess Margaret Hospital just across the street from Sick Children's Hospital. Dr Hodgson Shania's radiation Oncologist has narrowed down the spot to her lower left pelvis at the back. They treated this and her primary location, being where her Adrenal gland was. Shania and Karen were at the Hospital for Sick Children getting a drink in Shoppers Drug Mart before her treatment, Karen had a Toonie out, and Shania noticed that the Toonie had three bears on it, she said that it is good luck. So karen most definitely kept that one and Shania can put this one in her coin collection, we will take all the good luck we can get right now! Everything went quite well for her first treatment, with it being on the pelvis instead of her upper leg, this won't effect the growth in the leg which was great news to find out! We would like to thank Camp Quality, the camp for cancer kids for inviting us out to there reunion in Niagara Falls this last weekend. We sure did need that time away, The girls had a great time as did Karen and I, it definitely recharged our batteries. And thank you to Dr Baruchel for saying yes to this weekend away.
Sincerely,
Shanye,Karen,Shania&Shannon.

For the greater good

We went down to Sickkids today to have a meeting with Dr Baruchel and Dr Hodgson the radiation oncologist. We had lots of questions to ask about what is going on with Shania and her situation with this spot. They answered all of our questions, the main answer was that we can't afford to do nothing and find out later that we missed this window of opportunity to stop it before a relapse. Shania goes tomorrow to be fitted with a form that is similar to a bean bag so that she won't move during this radiation treatment. She starts her treatment next week, she will get a fifteen minute session, twelve days in a row. They want to do her primary site which is where they took out her adrenal gland, this has a low chance of side effects and they also want the spot on her upper leg to be done, this will have a higher chance of side effects. We must follow Protocol with this cancer, because it doesn't give you second chances. This has not been a easy call for Karen and I, we just hope it is for the greater good. Shania wants me to go read her Harry Potter and she wants to say good night.
love Shayne,Karen,shania and Shannon

Clear as mud

Dr Baruchel is still concerned about this spot on Shania's upper leg which shows up on the MIBG scan, There was a flurry of e-mails between Neuroblastoma Doctors all over North America last week as to what this spot could be. Monday Sickkids got a new scanner called a PET scan Positron Emission Tomography. This scan is a very good tool for the Doctors to have along with the other scans to make a complete picture as to what is going on inside of people with cancer. Shania was the third person to use this new machine at Sickkids. They injected her with FDR a glucose compound with radioactive material in it, this emits x-rays which are picked up on the scan. Then on a scale from 0-6 they can to a degree tell if she has cancer cells in her body. 0 being none 3 being possible 6 being definite signs of cancer. Shania came up as a 0. Which is great for Shania, but not for the doctors, this doesn't give them an answer as to what this oval shaped spot is. Dr Baruchel wants to follow protocol and give Shania Radiation Therapy there and at the spot were Shania had her Adrenal gland removed. This can have some nasty side effects, stunted growth in that leg, infertility,ect.. This is all discouraging to Karen and I, because we thought that she was all clear and not going to need radiation therapy. We know that this Neuroblastoma is very hard to keep in remission. Shania is in partial remission because of the spot on the MIBG scan. Until they can explain what this spot is or it's completely gone, she will aways be in partial remission. On a lighter note , when Shania found out that she had to get this PET scan done, she asked if she could bring Whiskey our cat and have him do it. (by the way his name is Whiskey because he has long whiskers, not because he is a heavy drinker:)
Sincerely,
Shayne,Karen,Shania&Shannon.

Shania,Madeline(friend),Shannon(sister/friend) holding Cathlene,Meredith(friend)Sept 2006

Shania having a fundraiser with her friends, September 2006.

One of those moments

This is the letter from a kind man from my work: Monday April 24Th 2006

To Mr Scott Mcilmoyle(benefits union rep)

I am Phuc Chau

I work in bay 9. I just got recalled back to work in Oct 2005. No luck I got sick and they found out that I have terminal neck cancer. I have some friends with good hearts, they have collected and sent some money to me . I found this a very kind gesture. I have added some more money in and want to continue this on to help someone else. This is five hundred dollars. I have sent to you. Could you please help me send this money to the right one in De-havilland who is in need of it .

Thank you very much.
God Bless you all,
Phuc Chau and family

When I read this letter it was another one of those moments that takes your breath away.
Bless you Phuc Chau. He past away two months after Shania was diagnosed. Our local had a vote and decided to sponsor Shania's Sunflower of Hope Fun Fair in the tune of One Thousand dollars. Its amazing what people can do when they unite for a cause Thank you to the members of local 112. Also the Great Lions club of Markham have kindly volunteered to supply and cook all the hamburgers and hot dogs, do the parking, ect... you guys rock! Shania and her friend Jacklyn want to write something. "hi our names are Shania and Jacklyn, we're good friends we are excited about the fun fair!!! It sounds like it is going to be very fun!!! love shania and Jacklyn
Take care.
Sincerely,
Shayne,Karen,Shania& Shannon.

Looks good

We talked to Dr Hodgson the radiation Oncologist today, and he didn't think that Shania needs radiation treatment. He also mentioned that the doctors still needed to have their meeting to decide about what if any treatment is needed. They said that they would call tomorrow night to let us know what is going to happen. But Eleanor the Nurse practitioner called and told us that they don't feel that it is anything that needs treatment, but that they will keep an eye on it. We have an appointment with Doctor Baruchel on Tuesday to fill us in on the details. But they think she is clear. This is one of those moments that takes your breath away!
Take care.
Sincerely
Shayne,Karen,Shania&Shannon.

Bright and Beautiful

We find out about the spot on Shania's groin on Thursday, hopefully it is nothing. Shania and Shannon made up mail boxes (folded coloured paper) and hung them outside their rooms, last week. Every morning Karen or I leave a letter for them when they wake up. On Friday I Forgot to put a letter in their mail boxes, so when Shania woke up she checked her mail box and found nothing, she went and made up one for Shannon and this is what it said "Shannon you are bright and beautiful, love Shania. They asked Karen and I if they can share a room together . We said that they would have to wait until Shania is fully recovered. A friend at work gave me this poem, written by George Carlin post 9-11 just after his wife had past away " The paradox of our time in history is that we have taller buildings but shorter tempers, wider freeways, but narrower viewpoints. We spend more, but have less, we buy more, enjoy less. We have bigger houses and smaller families, more conveniences, but less time. We have more degrees but less sense, more knowledge, but less judgement, more experts, yet more problems, more medicine, but less wellness. We drink too much, smoke too much, spend to recklessly, laugh too little, drive too fast, get too angry, stay up too late, get up too tired, read too little, watch TV too much, we have multiplied our possessions, but reduced our values.We talk too much, love too seldom, and hate too often, we've learned how to make a living, but not a life, we've added years to life not life to years, we've been all the way to the moon and back, but have trouble crossing the street to meet a neighbor, we conquered outer space but not inner space, we've done larger things, but not better things. These are the times of fast foods and slow digestion, big men and small character, steep profits and shallow relationships, these are the days of two incomes but more divorce, fancier houses, but broken homes, These are days of quick trips, disposable diapers, throwaway morality, one-night stands, over-weight bodies, and pills that do everything from cheer, to quiet, to kill. It is a time when there is much in the showroom window and nothing in the stockroom. A time when technology can bring this letter to you, and a time when you can choose either to share this insight, or to just delete.
Remember: spend some time with your loved ones, because they are not going to be around forever. Remember, say a kind word to someone who looks up to you in awe, because that little person soon will grow up and leave your side. Remember to give a warm hug to the one next to you, because that is the only treasure you can give with your heart and it doesn't cost a cent. Remember to say, "I love you" to your partner and your loved ones, but most of all mean it. A kiss and an embrace will mend hurt when it comes from deep inside of you. Remember to hold hands and cherish the moment for someday that person will not be there again. Give time to love, give time to speak, and give time to share the precious thoughts in your mind.
AND ALWAYS REMEMBER: life is not measured by the number of breaths we take, but by the moments that take our breath away.
A wonderful message by George Carlin.
Take care.
Sincerely,
Shayne,Karen,Shania&Shannon.

Something or nothing ?

Shania had her Bone Marrow Aspirate and Bone Biopsy today . We got there early and got her blood work done and that was fine. Then Dr Baruchel came to talk to us about shania's tests. He said that Shania's Mibg scan shows a spot by her groan, which was actually there before her Bone Marrow Transplant and is still there now. They cant figure out what it is. So they had her have a add on test which was to ultra sound the spot, and they couldn't find anything. Which makes it hard to biopsy it if they cant see it, so the doctors are going to have a meeting and decide their next move. Dr Baruchel had mentioned that there may be a possibility that they have to radiate it, but if they don't know where it is then it would be difficult to do this. So we wait until next Thursday to find out what the plan is.
Thank you to everyone for your continued support.
Sincerely,
Shayne,Karen,Shania&Shannon.

Test results Tomorrow?

We hope to find out Shania's test results tomorrow. She will get her Bone Marrow Aspirate and Bone Biopsy done tomorrow also. I am taking the day off work to be there, Shania wants to show me cujo's corner(cujo is Curtis Joseph who played goalie for the Toronto maple Leafs)which is where she will get this procedure done. These test weeks seems to take forever and and it doesn't help when they are delayed either. Shania has peach fuzz coming in on her head and has eye lashes again, which she is very happy about. We've gotten so used to seeing her without hair that when we see pictures of her with hair it seems funny. I will update tomorrow about her results.
Shayne,Karen,Shania&Shannon.

Kindness past along

Shania's Thursday and Friday tests were changed do to schedule mix ups, so Tuesday and Wednesday are her next test days. Shania,Shannon and I were up early this morning so Shania suggested a breakfast in bed morning for mom, so I cooked up some back bacon while the girls cut up some fruit and did an arrangement with them. Shania made up a sign "dont come out if you wake up" and slide it under the door. Once everything was ready , Shania got a scented candle and they all had breakfast in bed watching Max & Ruby on the TV in our room. I went back to work a couple weeks ago seeing that Shania had greatly improved and was off the IV all together. Karen is going to remain home until Shania goes back to school, sometime near the end of March. Hopefully she doesn't get sick between now and then. Karen and I would like to thank the people at my work(Bombardier Aerospace, De-havilland Division, Union 112&673) for there generosity while I was off work. I left early on Friday to go skating with the Karen and the girls, on my way out I saw my union rep and he told me about someone at my work, who had terminal Cancer. And how when they had collected money and presented it to him, that he thanked them very kindly and requested that the Union give the money to someone at work who could use it more than himself. So when they found out about Shania and our families struggle with cancer, they included this kind mans donation with what had already been collected by my friends at work. He passed away two months after Shania was diagnosed. It's people like this that make the world a better place to live in. Kindness like this passed along does makes a difference. lt definitely did for us and we will not forget this!
Thank you, sincerely.
Shayne,Karen,Shania&Shannon.

Test time again

Shania goes back to Sickkids for lots of post Bone Marrow Transplant tests this week. Monday she will get a GFR(Kidney test), Echo(Heart test). Tuesday CT(cat scan for cancer), Bone Scan(for cancer lesions), and blood work to see where her counts are. Wednesday Physio. Thursday Audio(to see if she has lost any hearing from the chemo), MIBG injection(Radioactive fluid to illuminate any cancer during the MIBG scan) this is the test that lets us know that Shania was cancer free before her Bone Marrow transplant! Friday MIBG Scan(Please be clear!!!!), and finally her Pulmonary(lung capacity)test. And also a Bone Marrow Aspirate and Bone Biopsy on Febuary first. So Shania will have a busy week coming up, she will get these test every three months after that. Shania won't be declared cured of this cancer until after five years. Stage 4 Neuroblastoma is a hard cancer to keep gone, so every three months we'll be on the edge of our seats. This life lesson for us is to live each day to the fullest and don't hold anything for later! We brought all our camping gear in from the garage and cleaned it up. Shania and Shannon wanted to set up the tent down stairs, so thats just what we did. You don't realize how big a tent is until you set it up in your house, but we had fun doing it. We hope to camp our way out east, and visit Shania and shans Great Aunt Sandy in Nova Scotia. She was diagnosed with liver cancer just recently and it seems to have Metastisized to her Bile ducts. This was after surviving Breast cancer a couple years ago and skin cancer just last year. She does a family news letter to keep everyone in touch with each other. Almost every week she would send us a card of support and love to help us get through these last eight months of treatment. Words can not say how much we appreciated your kindness and support. We love you Aunt Sandy and our hearts are with you, we hope that you and Shania are well Enough for a visit this summer.
sincerely
Shayne,Karen,Shania&Shannon.

The giggles

Shania and Shannon are full of the giggles today, it's nice to see these two sisters being silly and just having fun together. We got some snow today and they can't wait to get out and go tobogganing, but we'll have to wait until it's a little less slushy out there. We all went skating on friday afternoon when it's not to busy at the rink. We were a little concerned about her getting hurt, but she wanted to go, so skating it was. Shania Brought her friend Meridith and Shan met her friend Liberty there. We had a great time chasing each other around for a while but Shania got tired and took it easy after that. She was exhausted that night and slept very soundly, and the exercise did her good. Kim Shania's physiotherapist is coming tomorrow to help her with the stretching and check on her progress since she got out of the hospital. We're hopeing that nobody gets sick now that we are into cold and flu season, Shania's immune system is still very compromised, and if one of us does get sick we will have to wear a mask. But right now we are happy to have giggles and dimples.
Sincerely
Shayne,Karen,Shania&Shannon.

No more IV

Shania was down at Sickkids today and her platlets,white blood cells,polys were up. Her hemoglobin and red blood cells stayed the same. Which means she can come off the IV at night now and get a better sleep. This being one thing you don't get at the hospital. We got some sad news the other day, that little Jerry past away on Friday last week. I got to play a game of trouble with his big brother while Jerry and his Mother went down to ICU. He was worried about his little brother, just like how Shan worried about her sister. Jerry's mother is a very kind and caring person, always smiling even under such a trying situation as having your child go through a bone marrow transplant. Our hearts go out to you and your family at a time like this.
Sincerely
Shayne,Karen,Shania&Shannon.

I'm happy to be home

hi everybody
it's Shania, i'm so happy to be home because at the hospotil the bed is not very soft, and you don't get alot of sleep there. i bet that my mom and dad are very happy to be home to, because at the hospotil they have to sleep on a couch and i just don't like it there at the hospotil .i am getting i.v. hideration over night so the pump has gone off 3 or 4 times, i'v got to go now bye.
sincerly Shania

Markham fair grounds

Shania just keeps getting stonger every day, she's eating and drinking more all the time. We are going back to sickkids tomorrow for more blood tests and hopefully her counts are good enough to take her off the IV hydration that she is on at night right now. Shania has two out patient nurses right now, Chris comes at night and hooks her up to the IV for the night, Christine comes in the morning to unhook her and do vitals on her, so far so good. We've been planning out Shania's Sunflower of hope Fun Fair, and are signed up for the Markham Fair grounds on April 28th. A friend of ours from down the street Anji Sharp, has graciuosly volunteered to help run Shania's Fun Fair. Anji ran the Reesor park school Fun fair and her Father was the president for the Markham Fair. We are very fortunate to have Anji helping us to organize this Fun Fair. If anyone has suggestions for the fair or items for the silent auction, it would be greatly appreciated. We want to make this a special day for everyone.
Thanks.
Shayne,Karen,Shania&Shannon.

WOW!

Happy New Year
WOW what a year 2006 was, we had quite a roller coaster ride of every emotion you can imagine:fear, sadness, happiness, love, anger, joy, but most of all hope. The lowest of lows and the highest of highs, its been a journey along a path that we have never travelled before, and do not know were will end. We have learned so much in this year past, like how kind people can be, how precious the here and now is, to make every moment count because we only travel this planet but once. I know I'm getting kind of mushy here but it's all the truth, you don't know what you really have until it's almost taken away from you. This lesson I will never forget as long as I live. I have been blessed with an incredible wife and two amazing daughters that have made my life a true dream come true, I love them with all my heart and soul.
Now for 2007, we are already planning some of the fun stuff we want to do together especially lots of camping. Shania can't wait till her central line comes out so she can go swimming again and both her and Shannon love to go fishing, then finnish the day off enjoying each others company around the camp fire making schmors and burning marsh mellows. Also lots of day trips like Niagra Falls(were we got engaged),Wonderland,the Zoo,Mount Nemo, ect...
Hopfully Shania's home to stay, she came home Friday and had to go back for blood tests sunday and today. Her blood counts are still hanging in there, so now she is in isolation at home, but can go outside which she made the most of by going to the park and having a swing ride. It's funny how the littlest of things can mean so much when you go through something like this, I enjoyed pushing her and Shan on the swing, it was nice to do this together again, just simple stuff but it means so much. Shania is eating better everyday, but is still quite weak from the muscle loss. She will start taking vitamin A in a couple of months for three months, this helps her cells mature and die off. We also look forward to putting our full effort into Shania's Sunflower of Hope now that she is getting better by the day. We have 300-500 bracelets to make for the www.rideforkaren.com which is run by the Tobias family in honour of there mother who had breast cancer(another incredible Karen from what I understand) she was a great believer in hope as does Shania also. They sponsor hundreds of kids with cancer to go to camp each year. Karen and I would like to thank the Tobias family and freinds for the support they have given our family it means so much to us. As I said in the last blog Shania has been busy planning out the Fun Fair in April and also we are going to have a plant and perrenial sale in June. Next up is to get her bracelets onto her website so that everyone can order them through there, so we have lots of fun things coming up and look forward to the year ahead.
Again we can't thank all of you enough for the kindness you have shown our family, it definitely has helped us to get us through this and made it into something positive.
Sincerely
Shayne,Karen,Shania&Shannon.

The plan stan

Shania got out her home made clip board yesterday and started planning out her fun fair for the spring. So were taking this as another sign that she's feeling a bit better. Shania has her voice all the way back and the pain from swallowing is getting better also. Her blood counts are hanging in there, and they have had her off the IV during the daytime, so she has been gently walking around the hospital here and there. We have had some serious dimple sightings since Shania was allowed home for Christmas, which is what we have missed for a while now. Christmas was great having all four of us home together on such a special day, it was a great sight for a father to see after all we have been through. She was very tired when it was time to go back to the hospital at 1:00pm. Shania has been out on day passes since Christmas and most likely will be out all together by tomorrow as long as her blood counts hang in there. Jerry the little boy in the room next to Shania is still hanging in there in the ICU with a little improvement. I just asked Shania if there was anything that she wanted me to put in the blog and she said "Were does Santa go after Christmas? -- to a hoo hoo hotel". On that note with things looking up here.
Chow for now.
Shayne,Karen,Shania&Shannon.

Shania's home for Christmas!

We just brought her home. What a great feeling to be bringing her home on Christmas eve, even though it's on a 20 hour pass only. It's another step forward for her. The doctors are thinking she will be home permanent by the end of the week. Shannon just asked me to put in that Shania is feeling a little better and also that santa is coming tonight yeeeeeeeeeeeeeeeeeeh! It's been a tough go for everyone here but we are seeing the light at the end of the tunnel, we hope. One of the first things Shania wanted to do was to see Whiskey(our cat).He's at our neighbors John and Marlyns. They gave him his Christmas gift, a new bed. I've got to go Shania and Shannon want to check Norad and see were Santa is. Have a very merry Christmas and a cup of cheer.
Thank you to everyone for helping to make our Christmas a bright one.
Sincerely
Shayne,Karen,Shania&Shannon

Home for Christmas day?

We are hoping with all our might that she will be. Shania is doing well,she was off the intervenous for four hours yesterday and was free to walk around the isolation floor. The doctors have taken her off the antibiotics and also the morphine which is great. She still isn't eating much, but has a real craving for those mini donuts with the white powder frosting, so Karen brought some last night and we all had dinner together in the parents room, Karen, Shannon and I eating my moms Stew and Shania eating Mini donuts. Shania has a new room today which is bigger and has a washroom in it. Her new neighbour, a four and a half year old boy named Jerry is very sick right now. He has a fungil infection like Shania did, but it blocked part of one of his lungs, so they had to remove 2/5 th of it. Now he has pnemonia and had to go down to(the three letters every parent here doesn,t want here) I.C.U. The doctors had mentioned these letters for Shania at one time but luckily she didn't end up needing to go. Everyone here is pulling for Jerry and his family to get through this. Also another sad note Shania and Shannon's great Uncle William(bill)Coombs passed away on the 19th. We would like to send our heart felt condolences to his wife Lil, son Glen and all the Coombs family. He will be missed by all and remembered for the kind hearted person that he was. Shannon and I attended the viewing last night but unfortunately with Shania still in the hospital we will not be able to attend the funeral today, but our thoughts are with you.
Sincerely,
Shayne,Karen,Shania&Shannon.

Out and about

Shania got to see her sister for the first time in three weeks,we asked if shan could come in but they have strict rules against siblings coming in isolation. Shania's stomach wasn't good, but she wanted to see Shannon. So we got a wheelchair and brought her out to the parent room and they gave each other a big loving hug, it was nice to see. Then I went and got this huge basket of gifts and goodies that Cindy from Camp Quality(camp for cancer kids and siblings)had dropped off earlier in the day(great timing),thank you for these lovely gifts for the girls, it topped off there day. Also Wendy from Karen's work stopped by with her daughter Tiffany who has scholiosis and was getting a test done(glad to here everything is well with her). They brought Shania a little Christmas decoration which we put under her Grandma's miniture Christmas tree. We would like to thank Wendy and all of Karen's freinds at ST John's rehab for the kindness and support they have given our family. Karen just told me Shania had seven spoon fulls of soup, which is great considering she hasn't had anything to eat in two weeks. We have heard that there is a possibility that if everything goes well this week, Shania might be able to come home for Chritmas on a day pass. How great would that be eh! She was getting upset today because she wasn't going to be home for Christmas. So lets Hope things go well.

Shayne,Karen,Shania&Shannon.

P.s. From: the Johnstons To: you
Type this into your browser address http://www.chritmas.marc.bg/images/xmas06.swf

On the rise

Shania's blood counts keep going up ,her wbc counts saturday were 0.8 and yesterday were 1.3. She slept almost all day yesterday, which is good because that is when most of the healing goes on. Shania is still in a considerable amount of pain, but is looking much better day by day. Also the doctors put her into stepdown which means she isn't in full isolation anymore. They don't have a room for her yet, but this is a big step in the right direction. Now Shannon can see her big sister again, she has been missing her dearly. Shan and I slept in late this morning, I went to bed early last night and figured I would wake up early, wrong! We were late getting to school but it was good to get the extra sleep. Mrs Porter the schools principal was asking how Shania was doing. Karen and I would like to thank Mrs porter and all of the staff at Reesor Park School for there kindness ,caring and support during this very challenging time, we are very proud to be part of the Reesor Park family/school/community , and will never forget this outpouring of love for our daughters, it has truly been uplifting.
Sincerly.
Shayne,Karen,Shania&Shannon.

What a difference two days can make!

Shania's white blood cell count went up again today to 0.3 from 0.1 This is huge news because this is a sure sign that her stem cells are starting to engraft. She has lost some of her excess fluids and was able to do some physio today. Last night she wanted to sit in a chair and play with some Polly Pockets that were kindly donated by a former bonemarrow transplant family. Today we watched Iceage(the melt down) and I saw her crack a smile(but no dimples yet). Shania also asked me to read Harry Potter to her today, we read for a couple of hours. Her blood pressure is great now too, but she did have to get a transfusion. The mouth and throat sores seemed a little better but she is still in a considerable amount of pain . Overall what a difference from two days ago! We just hope it keeps going this way. Were having a Shania sunflower of hope fundraiser at Shannon's figure skating club tomorrow ,they are having a Christmas party and are graciuosly allowing us to sell Shania's jewelry. Didn't get much sleep last night so I gotta crash. I hope Shania and Karen have good night.

Shayne,Karen,Shania&Shannon

These kids need a lot of blood

The Canadian blood services just called to book our appointments to donate, and we were talking about how Karen and I didn't realize before Shania got sick, just how many blood products these cancer patients need. Shania got platlets today and haemogloban yesterday, she has constantly gotten transfusions all the way through her chemo treatments. The chemo lowers there blood counts every cycle they go through. It's nice to know that she is getting quality blood products from the Canadian blood services. Just when you hope she's through the worst of it,it gets worse. Shania has gotten dangerously low blood pressures since Monday night. They have been trying to get rid of some of the fluids she has been retaining by useing a drug called lacex which made her blood pressure drop off the map. So they had to give Shania fluids back to stabilize her blood pressure again. This afternoon it finally came back to normal, to our relief. We got some good news this morning when Shania's blood counts came in. Her haemogloban came up from 79 to 113 and her white blood cells came up from less than 0.1 to more than 0.1 which means that something is happening there. We hope this is the start of her engraft. The barenaked ladies(The band) were here yesterday singing Christmas carols in the atrium, it's to bad Shania is so sick she would have loved to see them. I think her and Shan like there name because every time they here them on the radio they say "are these the barenaked ladies, giggle giggle". Santa landed on the helicopter pad today for a visit to the kids today. Julie one of Shania's nurses brought in some stickers from Santa which Karen said perked Shania up a little, so that was good to here. Karen and I are exhausted, we can't imagine how Shania feels. by for now, must try to sleep.
sincerly
Shayne,Karen,Shania&Shannon

This negative is a positive

We had some positive news today Shania's cultures are coming back negative ,so this means that her heavy duty anibiotics are working so far. She isn't feeling any better though, The sores in her mouth and throat have gotten worse so the Doctors notched the morphine infusion up again to 3.5 from 3 and her fever remains high. This morning there was a code blue two rooms down from us(this is an emergency situation). This is not the thing a parent ever wants to here and believe me it's hard to fall asleep after you here one called. Shania and I finished off her Harry Potter book "Prisoners of Azkaban" and started "The goblet of fire". It was good for Shania because at least it's a distraction for her, and she's a big Harry Potter fan. Doctor Doyle (Another excellent Dr at sickkids) who heads up the bone marrow transplant unit came by today and said that he hopes to see Shania start to engraft mid week(this is were the stem cells start to produce blood from within the bones again). And we hope he is right.
Thanks again to everyone for the very positive support it means so much to us.
Sincerly
Shayne,Karen,Shania&Shannon.

Babies first Christmas

Earlier in the week Karen asked Shania if she wanted to decorate her room for Christmas. Shania said yes, and one of the decorations she wanted most was her babies first Christmas tree decoration ,which is a baby in a stroller (Shania's grandparents gave this to her). Karen brought it in today and showed me, this little decoration brought back a flood great memories for me, like Shania's first moments when I got to hold this beautiful strong eleven pound two ounce bundle of joy. Karen had a slight fever after the C-section so they put Shania in an incubator, when I walked into the nursery I spotted her from the other side of the room, she made the other babies look like miney mee's. Shania opened up a whole new world to me and I loved ever minute of it.The first time she smiled with those big dimples of hers, The first time she crawled I was sitting on the floor with her, I had a bowl of m&m's and she was wacthing me eat them as we played, she decided she was getting some too, so she pulled herself across the floor a bit and I moved the bowl away, so she just got up and started crawling around after this bowl of M&M's. Karen was so excited about her first steps. I remeber the first swing ride, bike ride without training wheels, building a snowman, the first time she got to hold her baby sister at the hospital it looked like those dimples were going to jump off those cute little cheeks , so many fun filled firsts for us as a family that are just precious.
I can't wait to see dimples on those cute cheeks again, hopefully sooner than later.
Shania is very sick right now her cultures show she has a virus called HHV(Human Herpesvirus), a virus that is in most children by the age of two ,but lies dormant after that. It's now reactivated itself because she has no immune system right now and is being treated by very strong antibiotics, she also has a fungal infection in the sinus area which is treated by antifungal drugs, and to top it off they have found positive cultures in her central line (central line being a intravenous line that is in her chest that goes up and into a major artery in her neck).The doctors are going to wait to see if the virus goes away with the antibiotics first before they have to take it out. Yesterday Shania had a rough go of it, she had to go on oxygen in the morning because of low O2 counts, lots of doctors visiting, blood tests, ultrasound, x-rays, echo gram, catscan ect... So it was good to see her just sleep today. Her mouth and throat sores have worsened and is giving Shania ear aches, also She hasn't drank or had food since wednesday and is very weak. From what other parents are telling us, most of the kids go through this. We just keep hoping that this is the worst of it. She's on day five and won't engraft until at the minimum of day twelve. I truly hope that this is the first and last BMT.

Shayne,Karen,Shania&Shannon

True grit!!!

These kids have truck loads of it . What they go through and still keep a positive outlook is inspiring. Shania's blood counts are dropping off the map and she has a low grade fever. They put her on antibiotics just in case she has an infection somewhere. Shania is getting mouth and throat sores as the chemo burns some soft tissue at this point. She is starting to use sign language now because it hurts to much to talk. Also she has severe back pain which is being controlled by an infusion of morphine ,they think the back pain is from being bed ridden for so long . Physio is coming in tomorrow to help her stretch. A good sign to Karen and I is that she wants to eat again, even though it's painful. Sickkids lent us a couple of video phones today, so Shania got to see and talk to Shannon and Whiskey(her cat), Which was a great thing to see. Thank you everyone for your continued support it truly means so much to us.
Sincerly
Shayne,Karen,Shania&Shannon.

One week down !

The big chemo finished Friday afternoon and it's been a tough one. Shania was sick all week and kept the covers up to her chin and felt very drained most of the time. She hasn't eatin much and has lost some weight. So they have her on TPN(total parenteral nutrition),which is giving her fats, amino acids and electrolytes interveniously. We are so proud of this little dinamo who can take all of this and not even complain. Shania goes into full isolation monday, this is when she gets her stem cell transplant. Earlier in the week Shania made a couple of huge 3-D snowflakes which we hung on her door and wall. The nurses have been complimenting her on them. While were on the subject of nurses, Karen and I would like to take this opportunity to thank all of the nurses at sickkids who do such an incredible job in a caring and loving manner. You are a big part of what makes Sickkids a world class childrens hospital. Also many thanks to everyone in Sickkids satellite unit at Rougevalley hospital you guy's are amazing !!!

Shayne,Karen,Shania&Shannon.

Shania's final chemo?

We hope this will be Shania's last chemo treatment ever. But we also know that this type of cancer does come back in a large percentage of stage 4 neuroblastoma patients. We won't be sure until after five years without relaps. Shania had her surgery on friday morning at 8:30AM to remove some bonemarrow as a back up for her transplant, and was up joking around and playing by 1:00PM. To our suprise she was allowed to come home on a weekend pass. Saturday the weather was great, so we went to the Markham Santa Clause Parade and had a great time. The girls came home with a hat full of candy canes.We were back at Sickkids on Sunday and they started hydrating Shania to prepare her for chemo. Today we made the most of her freedom visiting around the hospital .We got a "let it snow " globe at the gift shop , this being her first Christmas decoration for her room. Then next was back to her room for a "Shania's spa " nail filing and foot sanding down to the bone (oooch!). But all in the name of fun . At 1:00 PM she started the big bag of chemo! about triple the size of her other treatments. Karen came around 2PM and they were allowed to go up to the starlight room on the 9TH floor (This playroom is for cancer kids only). They made some ornaments and stockings. Then Shania started feeling sick so they came back to her room . Hopefully it's not to rough of a night for them. Shania's "Sunflower of Hope" just finished up it's order for 60 bracelets going out to the great Province of British Columbia, thanks to our neighbors (John and Marilyn)and there sons girlfreind Karen who works at the Yellowpages(let your fingers do the walking and your wrists do the talking). Thanks again and have a Merry Christmas.

Shayne,Karen,Shania & Shannon.

Cheque presentation

Today Shania and her friends at Reesor Park school presented a big yellow sunflower of hope cheque to the "Jamesfund" for Neuroblastoma research in the sum of ten thousand dollars. We also had the privilege of being entertained by the puppeteers from Camp Quality. (This is an incredible camp for kids with cancer)These people who volunteer there time to educate kids about cancer through the art of puppetry, put on a great show . Thank you for coming to Reesor Parks School/family/community and Shania's cheque presentation.(If anyone would like to book this show for there school contact angie@campQuality.com )Here is Shania's speech that she wrote this morning :" Thank you all for helping me raise money for the Jamesfund so we can find a cure for Neuroblastoma, and so people don't have to go threw such an awful thing and suffer from Neuroblastoma again. Although people will still get Neuroblastoma they will Know more about it so the people with Neuroblastoma don't have go through what people have to go through right now . So thank you all again for supporting Shania's Sunflower of hope . I want to present this check to the Jamesfund in the amont of 10,000$". Karen and I would also like to thank Diana Birrell (James Aunt) of the Jamesfund for coming and excepting this donation .
Shania had to go straight down to sickkids after this and get admitted for her Bonemarrow transplant . First up was the hospitals dentist to remove a baby toothe (a source of infection). Friday they will take some bonemarrow from her hip to use as a back up if there is any problems with her first transplant.Monday they start the seventh chemo which is a large dose to kill all of her bonemarrow.After a week Shania will then go into a isolation room for three to six weeks.On a happier note,Wednesday we met up with Syd Birrell(James Father) at Rogers TV to do an interview on a show called Daytime . Everything went really well in the interview with the hosts George and jacline. After the show we went out to lunch with Syd to Licks Restaurant (Shania and Shannons favourite restaurant)and really enjoyed his company . It's nice to talk to someone who can relate to what your going through.
Well it's 12:30AM and I've got to get Shan to School Tomorrow , then I'm off to the hospital for Shania's surgery and to spend the night.
Aloha for now.
Shayne,Karen,Shania & Shannon

What a week

Boy what a week that was! It started on Monday with a flurry of tests which were very hard on Shania because she had no energy at all. Her blood counts where falling and she had a slightly high temperature. So after every test she would lay down and go to sleep. Tuesday she was very lethargic, so Karen called Julie (clinic nurse) to see what she thought. She came down to the pulmunary function waiting room on the fourth floor and took her temperature right there and said that she was going to be admitted. They also thought Shania was slightly dehydrated. Shania didn't like that news to much but it was for the best. You don't take any chances when your blood counts are that low. They hydrated her interveniously, gave her some tylenol and also a transfusion. Karen stayed Tuesday night. Wednesday Shania had a Bone Scan, by now she was starting to feel much better, although she still had a fever. I stayed that night as we switch every night at the hospital. Shania and I were having fun joking around and doing some beading when she asked me a very serious question, as sometimes eight year olds do "If I drink while I am peeing will I ever stop peeing". She has a great sense of humour and cracks me up. Thursday it was time for her MIBG scan. This is a scan that they inject her with a radiated solution that makes the cancer glow under there scanner. The MIBG is a very good test for Neuroblastoma. Although this test is good, they still like to do a Bone Scan and CT Scan to give them a total picture. Shania did very well considering that she had to stay still for two and a half hours. Everyone there makes it fun so the time goes fast. The staff in Nuclear Medicine are just excellent and they all know Shania quite well. While Karen was coming up the elevator in the hospital, she ran into Dr Baruchel. He told Karen that he got the results of the Bone Scan and it still showed the two tumours in the skull and a very small one on her pelvis bone. If these tumours were still there after round 7 and BMT, they would radiate those spots. On Friday Karen got her socks knocked off when Dr. Baruchel came into Shania's room and happily explained that they couldn't see any cancer anywhere on the MIBG scan. "Her bones are clear" said Dr. Baruchel. Karen and Shania gave each other a huge hug of joy, as tears rolled down their faces. Karen called me right away and knocked my socks off. This is the best it could every be going into Bonemarrow Transplant. We got home from the hospital Saturday night after her last transfusion. Next up on Monday, Shania gets a bonemarrow aspirate to test her bonemarrow and then Thursday she may get admitted, if her blood work is good. On Friday they want to Harvest Shania's bone marrow. They will use this as a back up if needed. On Sunday, her chemo will start. The chemo runs for about 5 days. After that Shania will go into isolation and get her stem cells infused in. Then we wait for her body to start to respond. So we're not out of the woods yet, we still have a long way to go. But it was great to get such positive news.
Shayne,Karen,Shania & Shannon.

No cancer visible

Great news Shania's MIBG scan shows no visible signs of cancer anywhere . The tumours in her skull are gone ,in the bonemarrow gone,on the pelvis and thighbones gone !!!!! Shania is in the hospital until tomorrow because of low blood counts and will still have to undergo a bonemarrow transplant starting on thursday november 23rd. But this is the news we have been hopeing for. I will go into more detail tomorrow, right now I have to go to the hospital and celebrate this very positive news.
Shayne,Karen,Shania & Shannon.

Sisters

Shannon was at the school library last week with her kindergarden class and she started to jump up and down excitedly. Her teacher Ms Long, asked why she was so excited and Shan replied "because I love Shania so much"! Ms Long looked over and realized that Shania had just come into the library. Shania came over to Shannon and asked her where the Robert Munsch books are ,and Shan took her off to the Munsch books.

At Thanksgiving Shannons class was asked to draw something that they were thankful for. Shannon drew a picture of her big sister.

On Friday Shania was to read her Remberance day poem to the primary grades but that morning Shannon mentioned that she didn't have a poppy so Shania went into her piggy bank and got a loonie to buy one at school. Once at school, Shania went right to the office and bought Shannon's poppy and took it to her classroom.
These are just a few examples of the relationship that these two sisters have. Shania had her Hawiian style birthday party on Saturday. All her friends got grass skirts as they came in and started to the games right away. There was limbo, hot coconut, over and under,Hawiian freeze dance etc... My ears are still ringing from the octaves reached at this eight year olds party. Shania went to another party today and seems to be very tired now. I think her blood counts must be starting to come done as they always seem to do at this time after her chemo. She always needs a blood transfusion or two after her chemo when the counts come done to low. Also her temperature is starting to rise. Hopefully she doen't have a virus or infection. Tommorrow is a full day of tests, so now we cross our fingers.
Aloha for now.
Shayne,Karen,Shania & Shannon.

Test time

Shania got out of the hospital Monday night 11PM after four days of chemo. She was throwing up through most of it and not able to eat any food but didn't complain once(incredible girl eh). It was great timing because she was home for her birthday yesterday and she was in great spirits. Shania had mentioned on Sunday,if she could have a birthday card read on TVO Kids birthday show. So Shannon,Karen & I made one up ,we made some phone calls to see if we could drop it off on short notice. I dropped it off Tuesday morning. She didn't know we did it so the look on her face when she watched the show was priceless. Thanks Daniel at TVO Kids for allowing us to do that on such short notice it meant a lot to us. Also thank you to everyone for the gifts and balloons, Shania had a great day. Her Hawiian party is on Saturday so were busy getting ready for that. She's back to school today(Wednesday). She loves her school and friends. Next week it's test time. First thing 9AM Monday morning is the hospital dentist to see how her teeth are holding up ,10:45 Hearing test(The one chemo affects the hearing),11:00am GFR nuclear Med(kidney test),12:30 CT scan. Tuesday 1PM Bone scan and 2PM Pulminary function test. Then she gets Lugols solution to protect her from the radioactive injections that she gets for her MIBG scan(illuminates the cancer) on Thursday 8AM , then 9:30am Echo test (for heart damage),and at 11AM we meet with DR Buruchel for a full assesment of Shania's condition and how she has progressed through all of this. The waiting to find out is the hardest part for Karen and I. We'll be on the edge of our seats for that news. We are planning to have a cheque presentation at Shania's school on November 23rd. To celebrate the 10,000.00 dollar mark that Shania and the Reesor Park school/family/community have achieved. We want to thank everyone for the support you have given us, it gives us the strength to get through this. We are trying to focus on the positive and you have been a big part of that.
Shayne,Karen,Shania & Shannon.

I Have A Dream

This is Shania's Remberance Day poem she wrote at school by herself.


I have a dream that there are no more world wars , that people do not have to be forced out of there homes , that people are all safe and they all have a home .

I have a dream that everyone has enough food to eat, that everyone is safe, that the world has peace.

I have a dream that there is no fighting between anyone, that everybody feels safe.

By Shania Johnston

Shania started her chemo last night we got settled in to her room and went down to the main cafiteria for dinner (great food for a hospital). The girls had fun playing on the Disney space mouse and chasing each other i v pole and all. They are so close as sisters. They finished hydrating her then the chemo began,she was sick most of the night . It is hard to sit and watch your child being poisoned, I have a hard time putting into words how it feels. This video reminds me of Shannon.

http://ca.geocities.com/shaniasunflowers/gestodeamor.wmv (copy this link and paste into your browser)

Shayne,Karen, Shania &Shannon.

Birthday girl

On Nov 7th Shania turns eight and everyone here is very excited. She wants to have a Hawian style birthday party and is having fun planning it out.Shania has been healing up nicely from her surgery and seems to be fully mobile again .Shania and Shannon have been bouncing around the house on an exercise ball, since Kim Shania's physiotherapist came yesterday to start Shania on a program to build up some of the muscle she has lost during her bed ridden times with chemo ,dialysis & surgery. As well as,to prepare her for Bone Marrow Transplant which follows the 7th cycle of massive chemo.Karen and I are so pleased that the surgery went well and recovery time was minimal.Shania and Shannon had a great time at the Markville Mall fundraising,with their friends.We would like to thank everyone who came out to support Shania and her cause.Halloween was great,Shania and I went down to Sickkids for blood work to see if she was ready for her 6th round of chemo the following day.It was like a Halloween wonderland there,everyone was dressed up in costumes.They had a treasure map to find treats all over the hospital,one area was done up as Hogsmede from Harry Potter(her favorite books&Movies).After that,we went home and carved up Grampa Johnstons home grown 85 pound pumpkin(we weighed it on our scale).The girls drew the face and I carved it with my sawzaw because its so thick. Then they got on there costumes Shania as a cheerleader and Shan as a rosebud princess and off they went.Julie our clinic nurse from Sickkids,(whom Shania thinks the world of)just called and says Shania's blood is good to go she will start her 6th round of chemo today or some time on the weekend.On a final note,Edward(who is the father of one of Shania's school friends,Tatra)is a computer graphics designer and he donated his expertise to set up the web sight for Shania,so we can do her updates on this from now on(Thanks Edward it looks Great!!).Her web site is www.shaniasunflower.ca
Shayne,Karen,Shania & Shannon.

Hi everyone

Shania's surgery went great! It was delayed from last Wednesday oct 18th to Friday because her blood work was to low, then moved to Wednesday oct 25th because of the surgeon Dr Gerstle’s schedule. Someone else might have had to do the surgery unless an opening came up, luckily one did and she had it on Monday oct 23rd 10:00Am. The laparoscopic surgery was supposed to take three - four hours so we were a little shocked to see him in two hours. But he said that they could have used Shania's surgery as a training video it went that well, to our great relief. Karen and I were very glad that Dr Gerstle was able to fit Shania in because he is an excellent surgeon, doctor and person. Shania was a real trooper through all of this, when the anesthetist came into pre-op she explained what she was going to do and off they went hand in hand just the three of them anesthetist, Shania and shimmers her pink bear (with hospital name tag and all). Dr Baruchel Shania's head oncologist (World renowned for his expertise in this field) came to see how she was, he is hoping Shania can start her sixth cycle of chemo Thursday, blood work permitting. Shania came home Tuesday night she is still in a considerable amount of pain so she has some morphine to control it. Shania has already gotten her costume as a cheerleader and Shannon as a rosebud princess. So hopefully she will be home for Halloween for she is so looking forward to it. Shania is having a Fundraiser at the Markville mall coming up on the October 28th selling her beaded jewelry, T-shirts, scarves, bookmarks and fridge magnets. On another note we have a cat named Whiskey he's one years old and is a ginger colour. Whiskey would always sleep with Shania on the end of her bed until she got sick with this cancer, then when Shania would come home from treatments he would sleep on the floor by her bed, until her fourth treatment then all of a sudden he started sleeping with her on the bed again. Animals have amazing senses so we are hoping this is a good sign, kind of spooky eh. On that note happy Halloween.

Shayne, Karen, Shania and Shannon