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.