"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.