Sorry, its another long Post

Avarie is still in the hospital, but Craig traded me spots and I came home for a couple of days. Hopefully we will bring Avarie home by tomorrow. She has to stay until her body completely pees out her chemo. They fill her up with this huge amount of it and then fill her up with tons of fluids to help her pee it all out. She has to stay until she does and they monitor the levels in her blood a couple times a day to make sure its with in "normal parameters" whatever normal is. So far so good, she is doing well.
The big news that after the bone marrow transplant was taken off the table they have now put it back on. They said that the latest research is now supporting transplants for high risk ALL kids even with unrelated donors. Before they didn't want to use a unrelated donor because there are a lot of additional complications that can come with an unrelated donor, but now the research is supporting that. So we are meeting with the transplant Dr. from OHSU on the 26th of this month to discuss options. I am not convinced that I want to do a transplant for Avarie. It increases her chance of not relapsing by 10% but there are so many additional risks to it and side effects. Of course there are a lot of side effects to doing 3 more years of chemo too. If we do the transplant she will no longer need chemo, she will be cured. It doesn't mean she can't relapse, a lot of people still do, it just increases the likely hood of her not relapsing to 80% vs the 70% she is at right now. There is really no good option. Both are scary and life changing things. Both options will hurt her quality of life. At this point I am just trying to figure out which one will give her the best chance of survival and still give her a good quality of life. Side effects is a big issue to me right now, both short term and long term. I just don't know enough to make this decision yet. After we meet with the Dr at OHSU we are also going to get a second opinion from either Seattle Children's Hospital or Minnesota Children's Hospital. Seattle is the hospital that perfected the transplant, and Minnesota has the Dr that perfected the Cord Blood Transplants and is considered one of the top Dr in the field of transplants. This is just such a big decision. The transplant its self is a very scary and dangerous thing, I just want to make sure we make the right decision for Avarie.
The other big thing going on is with Avarie's legs. We have had the Dr's that oversee the Physical Therapist (I can't remember what their title is) evaluate Avarie again. They have been saying that it was muscle atrophy and over sensitivity of Avarie's causing the problems, but one of the other Dr's came in on Friday and gave a different opinion. He thinks it is nerve damage due to the chemo. Then on Saturday the other Dr came in and gave the first opinion again and said she does not think it is nerve. AHHHHHH! This is very frustrating. I just want my baby to walk again. She is going through enough with the chemo and the infections. Her inability to walk and her intense pain is just too much. I want this fixed. The Dr's have a test they are going to perform on her to determine if it is nerve or not. The next time she goes under anesthesia they are going to perform an electric shock nerve test. They will shock her nerves and see if her legs respond. The Dr said he will only really need one shock to determine if it is nerves or not. I am just glad they can do it with her asleep. Originally they wanted to do this test but they wanted to do the one where she is awake. I guess it is a little different what they are doing with that one, but I am just glad they can do something to get an answer.
There are unfortunately problems with either diagnosis. If it is nerve damage this will take years to correct itself because she continues to get the drugs that are affecting her nerves, so until she is done with the particular chemo (vincristine) that could be causing this her nerves can't regrow. And then when they do start to regrow, they regrow very, very slowly. This means she would have no use of her legs for several years. The other option is that it is muscle atrophy(which both Dr's agree she does have, the question is more why?) and Hypersensitivity which the only cure for is to push through it. Trying to get a 4 year old that is already so miserable to push through intense pain is not going to be easy. But the biggest problem I found out is going to be insurance. I guess their guidelines say if the person is not able to participate in their program enough to actually benefit themselves then they won't pay for it. She is 4 and in pain, how is she suppose to participate in it. The insurance also will not do a hybrid program, meaning pay for her to be in their rehab program and also pay for her chemo treatments which require staying in the hospital. They use to pay for things like that, but now they won't, it has to be one stay or the other. The Dr's are going to try to petition the insurance company on Avarie's behalf explaining that her legs are getting worse, which they are. But they told me not to hold my breath. I asked them if I threw a big enough stink would it help, they said it might. So if they deny the coverage I am planning on throwing a really big stink with news agencies and anyone that will listen.
I am just so sick of this all. I just want it all to go away. I miss the boring days when laundry and bills where my biggest worries. I don't even think about those things anymore. I just want my baby back. She is just so sick. I have handled this whole situation pretty well I think. I've just been in survival mode where I've felt like OK what do I need to do next. But lately that is fading. I'm starting to just feel so sad. That's the best way I can describe it, I'm just so sad. I hope I can make it back into survival mode, I like it there better.

Going Back to the Hospital Sooner then Expected

Avarie's check up went well today. She did not need any transfusions. I told you I am not good at figuring that one out.
I thought we had until Monday before we had to go back to the hospital for our next round of chemo. Turns out it is this Thursday. It is so wonderful to have been given a lot of notice on that one. I think the reason we weren't fully informed on that is that we have not been regular chemo patients. Avarie has spent most of her time in the hospital so there was not going home and then coming back. We've done that once, but I didn't fully realize that even though this round of chemo is done on Thursday that we had to check back in to begin the next round on the same day. I just assumed we stopped on Thursday and then had a check up on Friday and then go back and start the next round on Monday. I thought she would have the weekend off. Not the case. Oh well. So plans have to change a little. It means she will not be going to church this weekend, I'm glad we went this last week.
Her counts are really good right now and so we had planned on going to three of her cousins birthday parties on Saturday. One in the morning and then twin cousins birthday in the evening. We were just going to make an appearance at them. She gets so tired so fast I knew she would be OK with just stopping by so she could feel a little normal seeing all her cousins again. I just want her to start to feel some normalcy in her life. I want her to remember her life before all of this and know that she will get to do all those things again. She has lost so much of her motivation for life over the last several months, I just want her to get that back.
I don't have my nieces laptop right now. So there may not be many updates until this weekend, unless I can convince my husband to do it. He is so gifted at writing, he just finds it hard to find the time to sit down and write. Some how he finds the responsibilities of taking care of three kids and a home overwhelming, he is short a child too. I have to admit that is very nice to have him finally understand and appreciate what I do around here a little more. He has a hard time keeping up on all of it, but he sure does his best. All I ask of him is that the kids are still alive when I come home and the house is not burned down. So far so good.

Theres No Place Like Home!

It is amazing to have Avarie home and see more and more of her personality returning to us. It gives me hope that honestly I hadn't even realized I had lost.
She has a check up tomorrow to check blood counts. I suspect she may be low on red blood cells. She has seemed extra pale to me and extra tired, but I have been wrong on that a lot. I'm not a very good judge of that at least not yet. We've spent so long in the hospital I had her actual blood counts that they took every day to rely on. We have not had a lot of time home to be able to read all those signs very accurately yet. I hope we will start to have that experience.
The only lingering problem is her legs. She still has no use of them. We do her leg exercises every day and the right leg is a little stronger then the left, but both legs are so painful for her. She cries when they are even touched. The muscles have shortened and cannot extend all the way any more. She is going to require a lot of physical therapy. They want her to go into their rehab program at the hospital. It is a 2-4 week stay. She just has been so medically unstable that they have not been able to even consider putting her in it yet. She is still as they say "medically fragile" but she is definitely getting better.
Her appetite is great right now because she is on steroids again. It is great to have her eating so much, its just frustrating that her taste buds have changed so much. We have a hard time finding things she likes. The chemo can change their taste buds and Avarie has definitely been effected by that.
One other note, I thought I had posted about this, but perhaps I didn't. Sometimes I forget who I've told things to and who I haven't, blog site included. But Avarie will not be receiving a Bone Marrow Transplant. They only wanted to perform one if one of her siblings was a match. That would ensure a lot more similar genetic material then an unrelated donor would have. They do unrelated donors for a lot of people, but in Avarie's case they just don't want to chance that. They will look for and do an unrelated donor if she happens to relapse. But we hope that never happens. We found out also that the 70% survival rate that Avarie has, isn't actually a survival rate. It is a 70% chance of not having relapse. That is how they track Leukemia. So the 95% that she had when first diagnosed was actually a 95% chance of not going into relapse. Since she did not respond and is not in the Extremely High Risk Category her chances of not having relapse go down to 70%. Its still better then 50/50 which is the survival chance of a little boy that we have gotten to know at the hospital. There is a little boy there named Emilio. He just turned 3 and he has AML which is the more severe adult form of Leukemia. It is much harder to treat and Emilio's leukemia moved into his nervous system last month. The Dr's told his mom they don't know if they will be able to stop it now. It is so hard to watch these things going on around us. The hospital can be depressing sometimes, but somehow I always come out feeling hopeful and optimistic(most of the time). They do spinal taps on Avarie regularly also to monitor if hers ever moves into her nervous system. She had one on Friday before coming home. She has them about ever 2 weeks or so, sometimes longer then that. She gets spinal headaches sometimes after them. I don't like those. They don't show up right away, it takes several days, but her head hurts so badly and she is so sensitive to the light. Basically like a migraine. So far she hasn't had one this time.
Well things are great and things are going really well at home. I just hope that home lasts. She is due back this next Monday for chemo. I don't now how long of a stay it will be this next time, but it will be at least 3-4 days. Hopefully we can stay home until then. I am enjoying the time with all my kids.

A moment to Destress

Things have gone pretty well today. The only stressful time was the last couple of hours before bedtime. Trying to get everyone in bed and night meds and diapers to change and this one needs this and this one can't find that and this one wants a song. AHHHHHH! I got through it and finally they are all tucked in, teeth brushed and in bed. Still have night meds to do, but I will get those done in a minute after I destress for a second. Craig is covering someones shift tonight. He is trying to pick up a few extra shifts when he can. Right now with Avarie home and things going ok its a good time to try to get some extra hours in. Usually he is only working part time because we have to have someone with our 3 other kids and then we had to switch places at the hospital so that the 3 other kids could still see mommy and Avarie could still see Daddy. We're only making it financially because of so many wonderful people that have helped us. There is no way we could have pulled all this off if there hadn't been so many people helping us. Someone had to be with Avarie at all times and had Craig had to work full time during that time I would have maybe seen my other kids a couple of hours a week and maybe 1 night home a week. It was hard enough only seeing them Friday afternoon's through Monday mornings. I can't imagine how hard that would have been on them for it to have been longer. So thank you to everyone that has helped us through all of this and Thank you to Craig's work for being so understanding and acomodating. I know that has been very difficult for them to try to work around some of his scheduling problems but they have been wonderful about it.
Avarie seems to be doing good today. Her wheelchair finally came today. We are renting a wheelchair through a medical supply company. It has taken a while to get it because they couldn't bill our insurance if she was in the hospital. She had to be an outpatient to receive it. So finally today it came and the kids and I took her for a walk around the block in it. It was a little bumpier then I think she had expected and definitely a lot colder. We just made it around the block once, but at least she had a little fresh air and a break from sitting on the couch.
We are going to try to take her to Sacrament Meeting tomorrow. For any one reading this that may not be a member of our church that is the first hour of our church meeting. It is where we all meet together as families and listen to speakers and partake of the Sacrament. Her counts are really good right now, they have bounced back since chemo two weeks ago. She just had a small dose of chemo on Friday, but it shouldn't lower her counts too much. So we are just going to Sacrament Meeting and not sending her to her class. She's not ready for that. I am hoping for a good night and a good morning so that we will actually be able to make it there by 9am. The plan is for Addisen and Carter to stay for the rest of church and then come home with our neighbors. We are so lucky to have such wonderful neighbors. They showed up here tonight with a completely repaired dresser drawer of Addisen's that had been broken since we got the dresser and a bundle of hangers, obviously they have spent a lot of time at my house to know that hangers were in short supply. They then took Addisen and Carter to the library with them so that they could have a break and me. I am so grateful for their help, they have become family to us.
Well I think my destressing is done. I need to get back to work and get Avarie her night meds and then try to pick up a little before Craig gets back from work in about 30 minutes. I like to pretend I kept it clean the whole time he was gone. I think he knows better, but it makes me feel like a supermom to keep up the facade.

LONG WEEK!!!

Sorry I haven't posted all week. It has been a very long week and I did not have access to the laptop that I usually take to the hospital with me when we are there. Yes we were at the hospital again. It all started Sunday night after my last post. Avarie had started to have a little cough but it was very dry and not violent at all, so I knew I just needed to watch it. I was up late that night posting and getting some laundry done. I went to bed about 1am and was then woken up just before 3am to Avarie saying she didn't feel well. I then noticed that her cough sounded deeper, and wetter and she was saying it would hurt when she breathed. I also noticed her chest rising and falling much sharper then it should. I decided to call the Dr on call and she wanted me to bring her in right away. So at 3am I was up and getting some bags packed. Craig was not at home and so I had to call a neighbor to come and sit with the other kids until he could get there. I then took Avarie in to the ER where she was admitted for observation. Her cough ended up sounding a little better as the morning wore on but her voice became like a hoarse whisper. So we knew she had something going on, but since she had no fever and her oxygen levels were good they sent us home around 5:30 pm. But not before removing her nose tube since shew as eating had been eating so well. Of course things never like to go smoothly for poor little Avarie and the tube became stuck on the way out. They could not get the tube to come out of her nose. It was stuck on something in her throat and nasal area. All of sudden Nurses and Drs were running in to check it out, no one could figure out what happened so they called for an x-ray "STAT". The x-ray was there in about 5 minutes, but while all of this was going on Avarie is just laying in the bed screaming with this tube partly out of her nose. It was one of the more traumatic things for me to watch. Luckily the x-ray showed that the tube had just turned funny on coming out and so they flushed it with saline and lubed it and gave it a good pull and out it came. Avarie was fine once it was out and was actually so happy to show off to everyone that the tube was out of her nose. She hasn't been without it in over 2 months.
We got home around 6:30. We started getting ready for bed around 8. I was doing her nightly meds and dressing changes when I noticed that she felt warm to me. I wanted to laugh when I took her temperature and it said 102.4. Instead I picked up the phone and started making calls to take her back in. Luckily this time it was at a decent hour so I could call and make arrangements for the kids the next day. I was so tired from only having a little under 2 hours of sleep in almost 48 hours so I had Craig drive us and my Mom came and stayed with the kids. When we got there she was almost 104 so we were admitted and we have been there ever since. She has not had a fever since Wednesday afternoon, we think the antibiotics she is on are helping. So if she continues with no fever during the night she will come home tomorrow(Friday). She has chemo and a Lumbar Puncture in the morning and then she will be good to come home.
As long as she doesn't get sick again she will come home for about 9 days and then she will go back for her next round of chemo which requires hospital stay. When she gets the big chemo drugs they keep her there to monitor her, but other times there are smaller chemo drugs that she can get as an outpatient. That is how most leukemia patients get their treatments. Most do not have to stay in the hospital for their Chemotherapy Treatments, but because Avarie is Extremely High Risk ALL she has to have the big drugs.
So I am home tonight and Craig is up at the hospital with her. He wanted me to have hopefully one good night of sleep at home in my bed before we bring her home. She can be like a newborn baby with her sleep at home. In the hospital she sleeps great, but at home she wakes up a lot. The Dr's say it may be a little Post Traumatic Stress from everything she has been through. It did start to get better this last time, we just weren't home long enough to let her fully heal from it all.
So I am off to bed tonight with all three of my kids in my bed. I hate sleeping alone and I think they have all missed me and once Avarie is home, sleeping in here is not an option because she is in here and we are up and down with her so much at night.

A Few Pictures Of Our Week Home So Far

These are all pictures of Avarie at home this week. This is Avarie playing with her baby brother Sawyer, she loves him so much.
It started snowing tonight and Avarie wanted to go out and play so we bundled her up and took her out. She wasn't the happiest out there and we kept telling her she could go back inside, but she refused. She wanted to be outside so bad. We tried to have a snowball fight, but she just didn't find us all that amusing, we had fun at least and then we brought her in and made her hot chocolate and watched Polar Express, one of her favorite movies.

Then when it was time for bed tonight I was trying to do her meds and wound care and she wanted her big sister, Addisen to hold her hand and rub her head. Addisen rubbed her head and sang to her and actually put her to sleep until I had to clean her tummy tube. I know I'm a mean mom, but at least I got a picture before I had to disrupt them.

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Before we took Avarie out, her big sister Addisen went out and made her a snowball. Addisen was cold, but she wanted to make Avarie the biggest snow ball she could. She then stuck the snowball in my freezer to save for later. I will have to dispose of that one later and tell them it melted. I don't want a huge snowball in my freezer, there is enough ice in there that needs to be dethawed.


This picture is of Avarie and her friend Brooklyn Gallup. Brooklyn lives across the street and is in our ward. They have always been good friends. This is the first time Avarie and Brooklyn could play together since Avarie had gotten sick. Brooklyn came over and watched a movie with her and ate popcorn. They are both covered up in shawls. The shawls were crocheted by Brooklyn's Grandma just for them. They were so cute sitting there in their big girl shawls watching a movie together. Avarie really enjoyed it, but next time she says she wants to play dress up. Not sure how I'm going to make that one work, since dressing her is a tremendous chore, but somehow we will figure it out.

Busy, Busy

It is crazy how busy I am. I realized around 2pm today that I had not eaten anything yet. Its all going really well though. Avarie is doing great, she is seeming more and more like herself. Its just really busy. Luckily I had some wonderful help from my amazing neighbors and a friend from church today that helped me through the day. My neighbors just showed up this morning and never left. They shared dinner with us and put my house back together, because it was falling apart. Which sometimes makes me feel like I am falling apart. Its amazing how having a clean house just makes you feel like you are functioning again.
Avarie even had a little play date with her friend that she calls "little" Brooklyn. She calls her "little" because she also has a cousin named Brooklyn who is older then her friend Brooklyn. I took a picture of them sitting on the couch watching a movie together, but I am just feeling too lazy to go and find my camera right now and put the picture up, so I will try to get it up tomorrow. Sorry.
We are a little concerned about a few of the wounds on Avarie. The main one on her back is an open wound that was surgically opened up and left open to heal from the inside, it looks like large bullet hole in her back. It had been healing nicely, but over the last few days is not looking right. The Dr took a look at it on Friday and agreed it was looking a little off, but she is not running any temperatures and we are already packing it with an antibacterial dressing and cleaning it, there is not much else they could do unless it gets a lot worse. So we are just trying to keep a close eye on it. Its still not looking good to me tonight, I am concerned about it. I am all concerned about the g-tube or button in her stomach. That is the tube that we use to feed her through and give her her meds. It takes a while for them to completely heal and hers is not healed yet. I think they said it could take a couple of months to completely heal, but honestly I'm tired right now and not sure if my brain is working correctly on that detail. Anyway, it has started to look a little redder around the skin. So we are also watching that one and trying to stay on top of the cleaning of it. So we are in a watchful phase of all of this. Her counts are dropping and if I could take her blood today I would probably see some pretty low white blood cell numbers also probably her platelets and red blood cells too. The Dr already made the comment to plan on her probably needing both kinds of transfusions on Tuesday at her appointment. And in the meantime, keep her away from germs if possible and especially any type of crowded places, so basicly don't go anywhere.
I missed my fathers birthday party tonight. All of my siblings that were in town went out to dinner with my parents to celebrate his 60th birthday. I really wanted to be there but with everything going on with Avarie I just couldn't leave her. I know my dad understands, but it is hard to balance her care with the rest of my life. Hopefully just as her care has gotten easier for me handle so to will finding that balance in my life. I am living in survival mode, I know, but it sure would be nice to get to a point where life doesn't have to just be survived anymore, but enjoyed. But I am so grateful that I have the ability to be in survival mode. I have seen some of the other families at the hospital and I can see how blessed I have been to have been given this ability to survive this and be as strong as I have been able to be. It is truly a blessing and a gift from God, because there is no way anyone could survive watching their child suffer this way and still be strong if it wasn't his hand guiding you. I am so grateful that I have that help. I just hope that I can continue to receive that help as life continues to throw curve balls at us.