Quick update to earlier post.

Just wanted to drop a quick note about Avarie's potassium level, it went up to 4.4 which is great. She was able to be taken off the heart monitors. She is still just as grumpy as ever, but at least that seems to be under control. One last note, GO STEELERS!

Avarie needs to eat a lot of Bananas!

When we got to the hospital Thursday they did Avarie's labs and everything came back looking good except for her Potassium Levels. They came back at critical levels. We were admitted over to the hospital with in about 10 minutes. We were going to be admitted anyway, but usually it takes a couple of hours to go from the clinic to admission. At least that is how it has always gone in the past, but because they needed to give her a potassium infusion immediately and they can't do that in the clinic we were taken over and started right away. She was also very dehydrated but they did not want to rehydrate her until they got her potassium up because if you add more fluids into her it can just lower her levels more. A normal potassium rate is 3.5 and Avarie was coming back at 2.1. She was given a potassium infusion and then her levels were taken again, but it only bumped her up to 2.7 so she was given a second potassium infusion. They take about 3 hours to administer. After the second potassium infusion her levels only went up to 3, but the Dr wanted to get her chemo started and just monitor her potassium levels. 3 is no longer a critical level, it is still really low, but not critical. In the morning when they checked it again her levels had dropped back down to 2.1 so they they started administering oral potassium. I haven't talked to Craig yet this morning to see if that helped bring her numbers up or not yet. They had to switch to oral potassium because her chemo was going and they can't stop the chemo once it is going. The chemo takes 24 hours to administer, so it should have stopped this morning, but I haven't been able to find out whats going on today. The reason potassium is such a big deal is that it is directly related to your heart. Too much or too little can damage your heart, although they did tell me that too much is much more dangerous then too little. Avarie is not handling this stay very well, I think partly because she was just feeling so sick when we went there, she just started keeping things down yesterday afternoon because they can give her antinausea meds through her iv rather than her stomach. Everytime I tried to give her antinausea meds through her stomach she would throw it up with in a few minutes, she couldn't tolerate anything on her stomach. She just keeps wanting to go home and she wants to know how long until she can go home. I have learned my lesson on that one. I never promise her a time that she is going home, because we just never know when we are going to go home. I am pretty sure it will be a couple of weeks this time. We have another round of chemo this next Thursday and that is a 5 day chemo stay. So I doubt we will make it home from this chemo before Thursday, but it is possible we could at least come home for one day on Wednesday and then just go back the next morning, but I am not holding my breath on that.
I found out that some of the nurses at the hospital are following Avarie's blog. I am so excited and yet nervous about that. It makes me scared I am going to not explain some of the medical stuff accurately, but I guess if I don't they can correct me when I see them. The nurses got on and printed off the pictures of the other nurses in the tutu's and pasted somewhere in the hospital. I have heard about it, but I haven't seen it yet. So sorry Chris for the embarrassing pictures of you in the Tutu, but you sure where a good sport about it. Also there was a little drama that went on with one of the nurses that we love and I just wanted to take a minute to tell everyone how much we love Trisha. She is one of our favorite nurses there and we adore her. When we are going back there is a small handful of nurses that Avarie asks for and Trisha is definitely one of the first.
I'll hopefully post later about any results of the potassium stuff.

Tummy Problems = Sleep Problems

Today has been one of the hardest days we have had so far. Last night Avarie woke up sick to her stomach. She was throwing up all night. I think we maybe got 1 hour of sleep over the whole night. I was up more then Craig with her, so he let me sleep a couple of hours this morning and got the other kids off to school, then we switched and he slept a couple of hours because he had to work tonight. I was still so exhausted I called to see if my mom could take the baby, but she had a couple of things going on today and then the next thing I knew my sister was at my door snatching the baby. My mom had called her, I was incredibly grateful. I knew she had things going on today and I probably would not have asked or would have told her no I am ok if she called to ask to take him. She knew me too well for that so she just showed up for him. She kept him until naptime and I was able to get a small nap in. I also had someone from church show up to help clean today. She let me sleep on the couch while she scrubbed my kitchen and bathroom and then quietly slipped out. I am very grateful for all that wonderful help.
The afternoon then went ok, but evening has been another story. Avarie has not felt well all day and then has started throwing up again this evening. I try to give her anti-nausea meds, but she just throws them up. Now its coming out both ends, that makes for a lot of fun. The kids were needing help with their homework and I was trying to help with that and stop and help Avarie. Then when I would be helping with the kids Sawyer now finds it funny to go and pull the blankets off of Avarie or throw toys at her or take things from her. He is only 18 months old and is just going through a very naughty stage. I know it is partly because he is not getting a lot of attention so he is finding things to keep himself busy, unfortunately he thinks bugging Avarie is fun.
Now that I'm writing it all down it doesn't seem so bad, but it was really stressful when it was happening. I'm just glad that I now have everyone in bed. I am just hoping that Avarie will not have a night like last night I don't know if I can survive another one. We are already so tired from the medicine that we have to administer from midnight to 1am and then clean and unhook the line and then administer from 6-7am. Along with nightly diaper changes. This has definitely been the most tiring time home for us. We don't normally have meds that need to be given during the night, especially not ones that take over an hour to administer.
I feel bad but I am actually looking forward to going back to the hospital tomorrow. Then the nurses will take over all the med care and I can just sleep through it. I've gotten use to sleeping at the hospital. And Craig will switch me out Friday night, so I only have to spend one night there and then I will go back Sunday night after superbowl. My mom is going to go up to the hospital on sunday and spend the day with Avarie so that Craig can come home and we can watch Superbowl together. Craig is a huge football fan and the Superbowl is always a big day in our house. But this year his team has made it to the Superbowl and so it is a huge day for us. Go STEELERS! Football is something that we usually enjoy together. Yes I love football too. I haven't watched any this year, but I am looking forward to the Superbowl. Hope its a good one.

OHSU Transplant Consult

So we had our consult today with the transplant Dr at OHSU. It was not quite what I had expected. I had expected the Dr to go over all the risks to doing a transplant and the benefits and then answer questions we might have. I pretty much just expected it to be that. We did do some of that, but really not quite as much as I had expected. It was more her wanting to meet Avarie and get her medical history from us. She likes to meet with possible candidates for transplant and evaluate them and then spend hours pouring over her medical file. I guess she doesn't want to waste those hours from what she can get a good feel from in 30 minutes of meeting with us.
Craig and I both came away feeling like transplant is Avarie's best option. I don't like it, but the statistics that she gave us today were a lot scarier then the numbers we had been working with. According to her Avarie's chance of not relapsing is not 70% like our Dr's had told us, she said that it actually only 40% and that with a transplant that number could jump to 60-70%. I was already operating at the 70% mark, so to go below 50/50 chance of relapsing. That one hit kind of hard. Its kind of like your mind gets stuck on that one fact and you can see the Dr talking to you and your trying to listen, but you aren't hearing anything that is coming out of her mouth. That's how it felt today, at least for part of it. I was able to snap out of it, and listen, but I know I missed a few things.
I plan on talking to our Dr's tomorrow about this number discrepancy. Its not like it is a small difference. That is a huge number difference. We are also planning on asking for a second opinion from Seattle Children's Hospital. They are the hospital that perfected the transplant and we would like another opinion on this. Its a huge decision and I don't like either option. If we choose to not do the transplant right now and wait and see if she relapses then we could be facing something scarier. Because whatever cancer survived to retake over and cause a relapse would be cancer that already survived all of the drugs she is on and the drugs she is on are the strongest available. If that happens it would be a lot more difficult to get her into remission and then her numbers would go down to something like less than a 20% chance of not relapsing and with a transplant only a 40% chance. Those aren't pleasant odds.
They have already run Avarie's bone marrow type through the registry and have come up with 90 possible donors. The Dr is very happy with that, she said that she can then be very picky about the donor to help give Avarie the best chance. The Dr said that she could have everything ready for transplant in as little as 6 weeks, but because of Avarie's fragile state with her legs and infections, Avarie would not be ready for transplant by then. It would be too risky for her. She wants her to go to transplant before Avarie would go into the maintenance stage of chemo, which is on June 7Th. She worries that Avarie would relapse if she goes into maintenance and we would be facing a much bigger challenge and much worse relapse odds for the future.
Craig and I both feel good about the appointment today, well as good as you can feel, but there are still a lot of questions and uncertainties. Hopefully when we go meet with our Dr tomorrow we will be able to settle a lot of those questions and nerves. Well no, there is no chance of the nerves being settled, but perhaps we could feel a little more confident about making a decision.
There was a lot more info, but that is most of the important stuff. Oh one last thing, we have had several people offer cord blood from their soon to be born babies. We are so grateful for the gesture, but according to the Dr today Avarie would not be a great candidate for a cord blood transfusion because with an adult donor if Avarie were to have any complications or need a second transplant we could go back to the same person and use the same marrow, its not good to keep introducing new marrow, but with a cord blood transfusion its a one shot deal. There is no one to go back to use as a donor again because they are now growing babies somewhere, too small to donate and we got the stem cells from their umbilical cord once its used there is no more umbilical cord to take from. So thank you all for that wonderful offer, but it is unfortunately not an option for us.
If anyone has questions about all of this, please feel free to ask. We are so open(obviously) about all of this. Your questions may help me to think of things that I haven't thought to ask yet too.

Always Eventful

Today started out great. Avarie has been having a great day playing with her sister and brothers. She has been happy and even eating a little. It is so great to see her with such a pure joy smile on her face. She loves being home with her siblings.
Around 11 am though we had another nose bleed. It wasn't bleeding crazy like Tuesdays nose bleed was, but it wouldn't stop. It went on for over 40 minutes so we had to call the Dr. She wanted Avarie to go in for a platelet transfusion. We decided to take her to Legacy Salmon Creek because it is closer to us. In hindsight that was not the smartest decision. They are very nice there, but they do not handle oncology kids very often and so there were a lot of things that we just take for granted at Emanuel that were a little more difficult there. Like the fact that Emanuel is located down the street from the Red Cross. Salmon Creek is not and so we had to wait over an hour for her platelets to arrive. Also our nurse was not a pediatric nurse and so she kept thinking that something was wrong with Avarie's port because everytime she touched it Avarie would scream. She was convinced there must be an infection or something. I kept trying to explain to her that Avarie is just very traumatized and will cry no matter what she does to her. She is ok if you are just giving her a med, but the nurse couldn't get the platelets to drip in the beginning and so she was trying to move Avarie's port around. Avarie was not happy about it and cried hysterically screaming "OWWW". So she made the Dr and the IV nurse and someone else come in and evaluate it. Once I explained to them that Avarie has Post Traumatic Stress from everything she has been through and they saw how she cried when they even touched her blanket saying that that hurt they stopped worrying. We did still have the problem of the platelets dripping in slower then normal, but I was not about to let them de-access her port and then re-access it. That would mean her having to get poked again and that is so traumatic for her everytime they have to do it. There is also the problem of them actually getting it accessed again. The last time we had emergency room nurses try to do it, rather than our oncology nurses they poked her 5 times and weren't able to access it any of the times and then our oncology nurse the next morning did it once and got it on the first try. They are just more experienced at it. I hope that doesn't sound like anything bad against ER nurses, because they are truly wonderful. I just don't want to put Avarie through any more then she has to. So I told them no I was not a fan of the idea of de-accessing her. We had good return on the line and we were able to push in meds, it just had a lot of resistence and so the platelets weren't flowing as smoothly as they should. But the platelets eventually all got in and we were home by 5:30 or 6. I can't remember exactly. Our wonderful neighbors came and sat with the other kids. We thought we would only be gone for maybe 2 hours, turned more into 4.5-5 hours. The Boes' even made dinner for our kids and had them all sitting down and eating when we got back and they picked up our house a little and did some laundry. They are such amazing people, I had to make sure I shared a picture of them so that everyone can see who they are. There are so many people that we never could have made it through all of this with out their help and the Boes' are definitely at the top of that list.

We are home and all the kids are in bed now and so we hope for a good day tomorrow. Tomorrow we meet with the transplant Dr's at OHSU for a consult. I'll let you all know how it goes and what we find out.

HORRAY!!!!!

Avarie is still having soars but since her fevers have stopped they are going to let her come home today. They know she will heal better at home then there, so we are just waiting for discharge. Craig has our little "egg" car there. We call it the Egg Car because it looks like a big hard boiled egg. The kids thought that was funny and the name has just stuck. So he will be bringing her home today.
We are all so happy to have her home. It means a lot of extra work, but I hate being separated from her or my other kids. I'll do any amount of work just to be able to have my whole family under one roof.
She has to go back on Thursday for her next round of chemo, but at least we have until then.

More Hospital TuTu's and More Hospital Nights

The last blog wouldn't let me post all our pics so here are some more. These are the pictures of our case manager Chris. The other pictures our some of our nurses. The guy is Joshua, he is one of our favorite nurses because he makes us laugh all the time. He is a great nurse. Then there is Meme, she is so sweet, we really like her also and then also there is Trisha, she is one of Avarie's favorites. Trisha always calls Avarie "Bug". Avarie likes that and Trisha does cheerleading for Avarie so putting a tutu on was no big deal for her. Avarie definitely enjoyed all of it.

Hospital TuTu's and More Hospital Nights

Craig came and switched me out tonight so I am home with the other kids tonight. This gives me time to update on what is going on.
I want to start by telling everyone how great she had been doing. On Tuesday she was going through the halls of the hospital in her dress ups and talking to all the nurses and even hugging all of them. She was so much fun that the nurses and I decided to have a picnic with her. Avarie has been asking to have a picnic with the nurses for weeks now. I wasn't sure how we were going to pull it off and then one of the nurses had the idea of pizza. So we ordered pizza, had it delivered and then we all sat and had pizza and hospital milk shakes together. It really was a lot of fun. Avarie had an amazing day that day. She even got several of the nurses to wear her new purple TuTu and headband. It was quite a spectacle to get them all dressed up. The funnest was getting Chris to wear the TuTu. Chris is our case manager. He oversee's our whole case and helps get everything arranged for us. We keep him very busy. He is a very sweet and soft spoken person and wearing a TuTu is definitely something out of his comfort zone, but he did it to make Avarie happy. You can see several of the nurses and Dr's in the background of the picture having a good laugh. There were a whole bunch more behind me. Getting him into the TuTu was the highlight of the day for the whole staff. He was a good sport about it even if it was incredibly embarassing for him. We have such a great team that we work with. I truly feel like we are a team, they work with me and Avarie to help her. They are willing to go to great lengths to make her happy, we are surrounded by some good people.
Avarie also had a visit from a therapy dog named Vinny. He was so sweet, he sat by Avarie for almost 20 minutes and would lick her hand and leg, he even went and gave her a kiss, which honestly I was not crazy about, but Avarie loved it and her counts are good right now so I let him. She is not normally really big on animals, but she sure did enjoy Vinny.
Now the reason we are still at the hospital......
We were going to be coming home on Tuesday, but she spiked a fever Monday night. Fever's mean hospital stay for at least 48 hours. So we knew that would put us then until Thursday, unfortunately she has continued to have fevers ever since. They are not super high ones like she use to get, but they are definitely over the 101 mark that requires us to be in the hospital. They were still going to let us go home because all of her blood cultures are coming back negative, meaning that she is not growing anything in her blood, and she had been having no other symptoms, so they were going to write it off as a fever of unknown origin and let her come home Friday morning, but then the Dr really took a look at her mouth. Avarie developed a mouth soar yesterday and then today when the Dr looked her entire mouth is covered with them. She has Mucusitis (hope I'm spelling that right). It is a side effect of the chemo she just had. She won't eat or drink or even talk. Her mouth hurts so much that we put her back on PCA today. The PCA is the pump that allows her to push the button when her pain is too much. She also has the Fentanyl patch on, but she is in so much pain she needed something more.
Now knowing that diagnosis we understand why she had such a crazy bloody nose yesterday. Yesterday morning right after she woke up she started to get a bloody nose, but it just kept coming and coming. It got to the point it was coming out her mouth too. It went on for over 40 minutes, we couldn't get it under control. The nurse paged the Dr and ordered a Platelet Transfusion STAT. Of course ordering that stat does not always mean it comes right away. It took almost an hour for it to get there. We were finally able to get the nose bleed under control and got her platelets transfused but she continued to have small nose bleeds all night. Needless to say Avarie is miserable right now. She has gone back into her little shell. I would too if I was hurting that much. Its just hard to see. At least we had a couple of really great days. I am grateful that the people that surround her and care for her were able to see a glimpse of how wonderful Avarie really is. They see so much of the miserable, crying little girl. They have only recently been able to see a little girl that has such a fun, goofy, and loving side. Avarie has definitely been the talk of the floor amongst all the nurses and Dr's. When you are at the hospital long enough you get to know a lot of people and they are all rooting for Avarie and truly happy to see her come out of her shell, even if it was only for a couple of days. She is out of her shell more at home, but at the hospital this was one of the few times any of them were able to see it.

From the Hospital

I am posting a quick note from the hospital. It is Wednesday evening and we are still here because even though Avarie did pass all of her chemo out of her system she spiked a fever Monday night and so we have been here since. Not sure when we will get home there are a bunch of things they are trying to figure out and do, so we may be here awhile. I will post more about that later. I just wanted everyone to know where we were and what was going on. She has no reason for the fever, she just has one. I hope to have more time tomorrow to try to post more of what is going on.

NEVER MIND!

Forget that last post Avarie will not be coming home today. She is having trouble clearing the last bit of Methetrexate(not sure how to spell this one) from her system. Methetrexate is one of the many chemos she gets. I remember now that this is what happened last time too. Her levels got low but she just couldn't clear the last little bit. So it should be tomorrow. I am going to go back to the hospital to trade places with Craig so that he can come home and get a good nights sleep. He has to work tomorrow.
So hopefully we'll be home tomorrow. I will post tomorrow evening if we made it home.

Hopefuly home today

Just wanted to drop a quick note that Avarie is suppose to be coming home today. Her chemo levels are almost gone and they expect her to be ready by later today. She should get to stay home for about a week and half this time until January 29th when she is due back for the same round of chemo's. If she follows the same course then she will be there for 5 days and then home and then back again 2 days later for another 5 day stay on February 5th. This months "Road Map" has a lot of chemo in it. The next couple of months will be long, but oh well what can you do. Hopefully we don't have to go in for any fevers are other problems and we can keep the hospital stays to just chemo stays. We're already going to be there enough for those stays we don't need more on top of it or we may be there for a while again.
We will be in the hospital for Addisen's 9th Birthday. We have it pretty much figured out though. My sister, Andrea, is planning her party for me and going to give her a birthday party and then on her actual birthday we are going to bring her up to the hospital and have a family party with her there. Then sometime the next week, hopefully, Craig and I are going to take her on a date to some place nice. Just the three of us, I think she will enjoy that.
So hopefully we will all be back home together later today.

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.