Tuesday, July 31, 2007

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 :)

Saturday, July 28, 2007

So Happy !!!!!!!!

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

Wednesday, July 25, 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

Tuesday, July 24, 2007

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.

Monday, July 23, 2007


Shania and Whiskey on her bed sharing a special moment. July 09 2007.
She loved her whiskey :0)

Thursday, July 19, 2007

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.

Tuesday, July 17, 2007

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.

Monday, July 16, 2007

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.

Saturday, July 14, 2007

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.

Thursday, July 12, 2007

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.

Sunday, July 08, 2007

"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.

Wednesday, July 04, 2007

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.