Busy Week ahead of Us

Avarie came home on Friday from the hospital. We don't have any results back yet on anything, but since her fevers stopped and she was stable they let her go home. We are having a good, but busy time home together. We have a really busy week coming up. Tomorrow we start all of our testing and procedures at Doernbecher. Avarie has surgery tomorrow. She is having her port (Buddy) removed. She is having a new type of Buddy put in. The new one is called a Hickman (not sure I spelled that right, but thats how its said). She is also having the nodule on her leg biopsied. It will be a longer surgery then we're use to and a long day for us all. She will not stay overnight, it is only a day procedure. We will have Tuesday off to recover and then a busy day Wednesday back up at Doernbecher and again on Thursday to both Doernbecher and Emanuel and then Friday back to Emanuel for her going away party there. It's going to be a long week, but it will be a week of a lot of answers hopefully. Thursday is the day that we meet with the transplant Dr. Nemecheck. We will plan which type of transplant she will have and set an official transplant check in date.
I'll try to repost tomorrow with update on how her surgery went and if we have any answers back yet from her kidney biopsy and bone marrow biopsy. This is the first bone marrow biopsy I have been nervous about since she hit remission. We haven't had the chemo we should have been having over the last two months and that makes me nervous. I will sleep a lot better once those results come in.

Home then back Again

So I know I have been really bad about updating lately. I think life is just starting to really catch up with me and I am starting to feel the exhaustion more then I have in the last 8 months of this whole ordeal. I will try to keep this post as short as I can and still give all the latest info.
Avarie was able to come home on a pass on Friday. She was having a great time, but was going to have to go back on Monday night to restart rehab on Tuesday morning. On Monday it occured to me though that I am her mother and I have the right to say "No Thank you". I had agreed to the extra week of rehab because our pre-testing schedule up at Doernbecher was not going to get busy until next week and an extra week of rehab would be great for her. But once I got her home and she was crawling and scooting all around the house I realized that she was getting better therapy at home then at the hospital. Not that that was always the case, she needed the wonderful therapy that Rehab had to offer her, but now she is to a point where her being at home and able to play with her siblings and cousins is pushing her more then we could push her there. We could only push her as far as she was willing to go, otherwise she just shuts down. She is four and you can only push a four year old so far. But at home she is wanting to play and so she spends the whole day pushing herself to try to keep up with her siblings and cousins. We didn't have to push her, she was pushing herself. That is the best therapy she can get right now. She will need more therapy later, but for now we felt home was the best place for her. The Dr's agreed and we had to go in and have her discharged, because technically she was still a patient since she was only home on a pass and not released. We had a fun Memorial day playing with cousins and going to her cousins Payten's 10th birthday and then to a barbeque at my brothers with all of her cousins from my side of the family. Her counts weren't great and in hindsight I probably should have just stayed home with her, but I wanted her to play and just be a four year old. I'll make better choices in the future I promise. The reason I say hindsight is yesterday she developed a fever. Fevers mean trips back to the hospital. Craig took her in and has stayed with her this time. I will go and trade in the morning. Her fevers have stopped, but when they did a culture on her blood it came back positive for a bacteria. We don't know what kind yet, but she definitely has something. Its probably not serious, it just complicates things for transplant. She is suppose to be having a lot of pre transplant testing done, tomorrow being her first and now she can't go. She is suppose to be having surgery on Monday, but that may be put on hold. They haven't decided on that, they are doing a wait and see.
Our Dr's ordered a CT for Avarie's abdomen this morning, that was before the positive blood culture came back and they wanted to make sure that the fever and belly pain that she was having wasn't Colitis again. The CT did show some inflamation to the colan, but we don't know if that is inflamation that was already there or new inflamation. A new thing popped up. For people that have been following this from the beginning you will understand more of this then new comers, so I will try to explain the best I can about it. We have some new nodules. They are on her kidney's again, GRRRRRRRR!!!! This is so frustrating, but at the same time maybe we will be able to find an answer this time. Shortly after Avarie was diagnosed with Leukemia she developed these nodules all over her body and they were on her Kidney's then too. We biopsied several of them with nothing coming back positive. There was no bacteria, no fungus, nothing! We had on that showed a little fungus, but the Dr's think that that was a false positive. They think it was contaminated. So we spent months treating her for everything. We had her on heavy duty antifungals, and by heavy duty I mean ones that required constant monitoring and it required us to try a little bit first to see how she reacted before they would actually treat her for it. She was on so many antibiotics trying to cover for any possible thing because she was really sick and they had no answers. We had Dr's consulting from other hospitals and we became good friends with all three of Emanuels' Infectious Disease Dr's. It was a very scary time. Since then our Dr's have come up with a possible diagnosis, but they were unable to confirm it. They think she might have this really rare syndrome called "Sweets Syndrome". Her nodules look like this syndrome and the high fevers that she ran for those two months fit and the joint pain fit, but there were several things that didn't. We just don't know and going into transplant without knowing what that was is a very scary thing because if it popped up when she was completely without an immune system and we didn't know how to treat it she could be in a lot of trouble. So tomorrow we have a biopsy scheduled to try to see if we can get some answers. If they can't get to the nodules then they will have to schedule a kidney biopsy, which is much more invasive. But at this point we need answers. So we are back in the hospital to stay for a while. Transplant is still planning on going ahead on schedule, but we'll see. I have a feeling we may get pushed back a little, but I've thought that before and been wrong. Hopefully we will just get some answers this time.

Pictures from Rehab

These are a couple of pictures from the hospital. Avarie has been unable to take a bath since last October and this is how we have had to bath her. She took her first bath this last week, she loved it. The other picture is of her relearning to walk. She has come a long way and still has a long way to go, but she is getting stronger every day. She hates the walker and only uses occasionally in rehab, she refuses to use on her own. You can't tell in the picture, but she is actually screaming, just her head is down.

Day at the ZOO

Doing Great and We Have Transplant INFO!!!!

It has been awhile since we updated and I am sorry things are kind of busy and crazy right now and we have been without a computer for awhile. Everything is slowly settling down now though. Avarie is doing great in Rehab, she continues to get stronger. I don't think walking is in her near future though. She has gotten a lot stronger with with crawling and scooting, but she fights the standing and walking still a lot right now. The therapists say that it will come when she wants to start keeping up with everyone and or builds her confidence up. They say it can come really fast, but in the meantime it is almost always a fight with her to try to get her to stand or walk. She has started hitting a lot and throwing. I think she just becomes so frustrated she doesn't know what to do. Her normal personality now though is happy and very pleasant, she likes to laugh and has started making friends with the other kids at the hospital and playing with her nurses and Dr's more. The stronger she gets the happier she seems to get.
On the cancer front, things are going well. She is getting chemo this weekend and then has rehab the rest of this next week, but then her case will be being transferred to Doernbecher. We met with the transplant Dr on Thursday up at Doernbecher and we now have a transplant schedule. Avarie will begin all of her pretransplant testing Memorial Week. They are testing how well all of internal organs are functioning. Depending on those results will determine which route we go after that. She has two possible donors, both are great matches. It turns out we never lost the first donor, he is still our donor, but we have since also located a Cord Blood donor. Cord blood is blood from the umbilical cord of a baby. There is a lot of new research going on in the Cord blood science and a lot of it looks very promising. Both donors are great options for Avarie, but each option requires a different mix of chemo's to accompany them and so depending on how her organs are funcitoning will determine which way we go. The plan is for us to be checking into Doernbecher the week of June 15th for transplant, that is just a little over 4 weeks from now. We will spend all of June and most likely all of July in isolation. We will then spend 100 days in intense follow up. The Dr's told us to plan on spending most of that there at the hospital as well considering how Avarie has responded to to Chemo in the past they are expecting a very sick and difficult recovery for Avarie. Because of how sick Avarie has been they also don't want to use their normal transplant protocol, they don't feel her body could handle it. Normally they dose the patient with very high chemo therapies and high full body radiation, but they will not be doing that with Avarie. She may receive some minimal radiation, but it won't be to her head and it will be only a little bit if any at all. Again that depends on what her testing shows, they may not do radiation at all. Also they will use a different drug regimen for Avarie. One of the options is for an experimental drug that is manufactured in Germany and is only used here at Doernbecher and Seattle. Seattle is one of the top transplant hospitals in the world, and they are both having great results with it. Their success rate is 71% and Avarie's chances right now with transplant are only 60%, I like any little bit of possible success that we can get. Unfortunately we don't know if our insurance will cover it yet or not.
We are expecting Avarie to come home next weekend. It will have been almost 2 months since she has been home. She will be home, but will be back to the hospital a lot for the next few weeks after that until she officially checks in around June 15th.
We were able to check Avarie out on Mothers day for a few hours and we took her to the zoo. I know that it was Sunday and I hope that anyone reading that can forgive us, but we didn't want to bring her home for only a couple of hours and then turn around and make her go back to the hospital. It would have been devastating to her. So we took the family to the zoo and it was wonderful. It was the first family thing we have done together since before she was sick 7 1/2 months ago. We took some great pictures and had such a great day together. I have tons of pictures to post, but the camera is at the hospital with Craig, I will have to post the pictures later.
I wanted to ask if anyone knows of anyone getting rid of Polly Pockets. We are trying to build a collection of Polly Pockets and all of their fun gear for Avarie for the hospital. We can't take anyting into the hospital that can't be sanitized or that isn't brand new and Polly Pockets are bendy plastic and can be sanitized easily and Avarie loves them. So if anyone knows of any little girls that have outgrown their Polly's or happens to come by any at a garage sale I will pay for them. We are just hoping to hide them away until hospital time and then pull them out and give her something wonderful and fun and new to keep her busy during the next 5-6 months.

Doing Great! :) :)

Avarie is doing great. She passed the chemo from her system in record time and started Rehab yesterday. Today was ehr first real day at rehab and so far it is going great. She is in a great mood today so that is definitely helping. I will have to try to post more later. I just had a few minutes to let everyone know how good she is doing. We should have our computer up and running on either Thursday or Friday this week and I can upload some pictures and write more then. I am headed home this afternoon to keep unpacking. Thank you all for your support, I can't believe how much we have made it through already.

Mt. Dew

We are all moved, now its just the getting settled. Thank you so much to all the elders on both ends who showed up to help move us and to the sisters in Battle Ground Ward who came and helped me pack. I am still amazed at how much people are willing to help and I'm starting to be able to accept the help a little better.
Avarie has been doing well this week. All of her testing came back good. They found nothing to be concerned with, her gut is just working slowly. So we are just pushing our way through the vomitting slowly. She started chemo on Friday and now we are pumping her with fluids to try to flush the chemo out. Because of the fluid flushing we can't give her her TPN. TPN is her IV food. It would be too much fluids going in to her body to do both, so we are hoping she passes the High Dose Methetrexate (chemo) fast. We always joke that the methetrexate is a giant bag of Mt. Dew, it totally looks like it and when I say giant bag I mean giant. I'm not sure how many liters it is, but I think probably around 4, that is two 2-liter bottles of Mt. Dew. It drips in over 24 hours and then we hydrate until it passes through her body. It usually takes on average about 3 days of hydration for Avarie. Thats an average, she's gone much longer then that and then one time went faster. We just never know.
We are still planning on starting rehab this week, but the Physical Therapists are nervous that she is still needing hydration, so Monday will probably still be a really light day. Then to top it all off, Avarie got a fever last night 102.1. At first I was really upset and then I remembered that we were staying here anyway, so it didn't really change anything. So far she has no symptoms pointing to why she might have a fever, so I am hoping it is just chemo related. It has been almost a month since our last chemo, which in chemo time that is a really long time, almost too long. It was really important that we got it restarted this weekend. So I'm not sure what to make of the fever yet, I'll keep you updated.