Long Post-Sorry! Just too much Info that needs to be said

I wanted to start this post with a thank you to my Family. It is Addisen's 9th birthday this weekend and with everything going on it is just so hard to plan anything. I just didn't know where we would be 2 weeks ago when invitations needed to be sent, so my sister Andrea took over the planning for me. She planned the date and time and had it at her house. She helped Addisen fill out the invitations for her friends and let everyone trash her house tonight. My other sister Michelle planned the games and brought the streamers and balloons and my mom ordered and bought the cake for us. I am so grateful to all of them, it went great and Addisen had a great time. The reason they are covering their mouths in the picture is because they were afraid they would accidentally blow out the candles. Silly I know, but it was pretty cute. Addisen decorated the cake herself, I think her cousin Payten and friend Emily helped a little, but no one else was speaking up to take credit for the creation. They used Addisen's Littlest Pet Shop Collection.
Avarie is still in the hospital but she is finally keeping food down. They put her on TPN to give her nutrition through her veins. Since she couldn't keep anything down through her stomach we had to get some food into her. She had lost around 6 pounds in a little over a week. That is way too much. She went from weighing 18kg which is about 40 pounds to weighing only 16.5kg which is about 34 pounds. Not a good thing. I'm not sure what her weight is today, but she kept a little bit of food down yesterday and today seems to be eating even better. Craig is with her right now, I came home yesterday.
We have had problems with her "Buddy" lately. It has been getting sluggish and hard to push things through it. But then during the night last night it became impossible to push anything through. They have tried and retried several times to reaccess it but all attempts have been unsuccessful. For anyone newly following our blog I will explain her Buddy. Her buddy is a little device that they placed under her skin when she was first diagnosed. It is attached directly to one of her veins so that we can have instant access to her veins with out always having to find a vein and repoke her. We also administer her chemo through her buddy. We use the buddy a lot. It is a vital thing in her treatment, so we have to have it. Tomorrow they are going to try to inject some dye into it and see what is going on in there. It is very possible that they will have to go in and surgically remove the buddy and then put in a new one. She was so soar when she got this one, I just can't imagine putting her through one more surgery, but we have to have it. Especially now that the decision has been made that we are definitely going to transplant.
We finally got word back from the Dr's on her chances of staying in remission. They aren't good. Her chances are only 46%. We had heard possibly 40 from the Dr at OHSU, but I didn't want to believe it. Our Oncologists wanted to make sure that we were getting the most accurate information on that percentage, so they contacted the Dr that is in charge of the Extremely High Risk Study that Avarie is in. My understanding is that his research is partly responsible for the protocol of drugs that Avarie is receiving. He is based some where in Eastern Canada. According to him for kids that did not respond to Induction (which is the first round of chemo given to all leukemia patients) their success rate is 46%. So Avarie has a greater chance of relapsing then she does of staying in remission. If Avarie relapses her chances then go down to only 20% with out a transplant. If we can do the transplant before she relapses her chances go up to 60%, but if she relapses and then does the transplant her chances are only 40% with the transplant. We can't take the risk of her relapsing, those numbers are horrible. So we have to the transplant before June. June is when we would hit the maintenance stage of chemo therapy and that is when she would most likely relapse. We have 90 possible donors off the donor registry from around the world. The Dr's are looking for the best candidate for Avarie, they are very happy to have so many to choose from, but her chances would have been better if it was a sibling donor, there are a lot more risks with an unrelated donor, but those are risks we are just going to have to take. We are exploring both OHSU for the transplant and Seattle Childrens Hospital. Seattle is one of the main transplant hospitals from around the world, so we definitely want to consider them. Its just hard because they are so far away and it would mean having to move our family up there for 4-6 months with out any other support structure. She is only in the hospital for the transplant for 4-6 weeks but we have to stay close to the hospital for the first 100 days, more if there are any complications and the possible list is long and scary. But I did find out that the transplant Dr at OHSU is from Seattle. She was a transplant Dr there and has moved down to Portland to head their transplant team. That makes us feel a lot better about OHSU. We are definitely going to look into both facilities though and try to make a decision. Our Dr's are very supportive of us doing that, they do most of their referrals to OHSU, but they are very well acquainted with Seattle. They all agree that Seattle is one of the top transplant hospitals, but they feel really confident in OHSU's transplant program also. This is such a hard decision. We are hoping to talk with families who have gone through transplant at both places, I am interested in how their experiences went. So if anyone reading this knows anyone please let me know.
We are hopeful that Avarie will be home tomorrow, but she will have to go back on Monday either for Chemo or to have a new port put in and then receive chemo too. They think they can do this chemo as outpatient, it requires us to go in everyday for 5 days and spend several hours there, but at least we can come and sleep at home. We're just not sure how it is all going to work out yet. It seems like we are never sure about anything these days. I never know where I'm going to be tomorrow or next week. It gets tiring and frustrating, but oh well thats life for now.

I just want to leave with a cute story about Avarie. She met her Chemo Pal, Tasha, for the first time on Thursday. Chemo Pal is a program through the Children's Cancer Association. They match an adult with a child going through chemo. The Pal comes in with toys and just plays with the child and tries to establish a friendship. They are a safe and fun person for the child to look forward to when at the Dr's or at the hospital. They volunteer their time for about 6-8 hours a month. They bring anything that Avarie likes. They pack a bag with all of her favorite toys. She just has to put the toys back in the bag when the Chemo Pal leaves so that the toys don't get lost. No other child will ever play with that toy, it is Avarie's bag of toys for just her. Tasha, Avarie's Chemo Pal, brought several things for Avarie to see. The first thing she pulled out was some dress up jewelry. Avarie was immediately excited and wanted it all on. Tasha helped her put it all on and we took a picture of the two of them, she wouldn't smile for my camera, but she did smile for the Chemo Pal's camera. Tasha stayed for a little while just talking with us, along with the head supervisor for the program. She came just to make sure the first meeting went well. When it was time for Tasha to go we asked Avarie to put back the jewelery. Anyone that knows Avarie can probably guess her response to that. She refused. She wanted to keep it, all of it. She finally agreed to give back some of it, but refused to let go of the rings, she wanted to keep them. She balled them up in her little hands and tried to hide her hands behind her head. She was protesting so much that they were going to let her keep just one ring, but when we looked over at her she was starting to fall asleep. She was just sitting in the hospital chair with her hands balled next to her head still grunting in protest, but her eyes were rolling back in her head. We all started to laugh a little, and then before I knew it she was completely asleep. She just fell asleep with her arms up, sitting in that chair. It was so funny we took pictures of her. It made it easy to get the rings out of her hands like that. I should explain that she was so tired because she had just had one of the best physical therapy days ever. She even rode a tricycle. We had to help keep her momentum going, but she rode the bike. All in all that was a great day.