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.