A Couple Current Pics

Starting the new Chemo

Avarie started the new chemo yesterday. It seems to have gone ok, at least there were no allergic reactions from the drugs, they worry about anafalactic (not sure how to spell that)shock, but she was ok, no allergic reaction. She continues to run high fevers from her infections though, I am hopeful that today the antibiotics should help her turn the corner. Yesterday her blood work showed that her immune system was completely nonexistent. They track a number called her ANC, it shows how prone to infection she is, or whether she can fight an infection. Anything under 1500 means that she can't fight off an infection very well, and under 500 is grounds to put her in the hospital as a precaution, Her ANC has continued to go down but yesterday her ANC was actually 0, she literally has no immune system right now.
I came home last night to spend some time with my other kids. That is one of the hardest things for me is trying to balance that. The baby was so happy to see me, he hasn't left my side. The other kids are struggling too, Addisen was in tears last night when I told them that Avarie wouldn't be coming home as soon as we thought and Mommy was going to have to go back up there. I know I have to balance this out a little better, it's just hard, I am truly needed in both places, but I can't be in both places at the same time. I just have to start taking more time off from the hospital and coming home, its just so hard.
I'm not sure how Avarie did during the night last night yet. I haven't heard from Craig yet this morning.
They explained a lot about these new chemos to us yesterday. They're kind of scary drugs, but there is not really any other option, she has to have them. Also she will have to receive radiation to her head. She doesn't have to right now, but she will in the next month or so. They haven't given us an exact date on that yet. The radiation will just be to the head not the whole body. The reason behind that is that the brain is great at protecting its self. And all it takes is for one leukemia cell to hide out in the brain and survive into remission and we will be right back here again, only that time we will be looking at a Bone Marrow Transplant. We don't want to do a transplant, that is a last resort if everything else fails. It is very scary and has some very bad side effects like never being able to have a baby of her own, it would kill her reproductive system. There are a lot of other risks involved too, so we want to avoid that if we can, but if it means saving her life then that is what we will do.
We found out that this cycle of chemotherapy is 21 days. So yesterday was Day 1 of this cycle and then 21 days from then they will do another bone marrow biopsy and we will find out if she is in remission. If she is not then she will become a candidate for the Transplant. From my understanding that is the next step. She is on the "kick your butt drugs" right now according to the Dr's. So hopefully this works.
I'll update again tonight from the hospital when I go back up and get a feel for how she is handling everything then.
I know when a lot of you read this you are going to offer to go and stay up at the hospital with her. And thank you, but honestly right now that doesn't really help, there may be a time when it will, but right now there is so much going on and new information that it is important for me to be there learning it. The more I learn and know then the better advocate I can be for my daughter, and I truly understand that statement now about being your childs advocate. I have had to do that many times now and I am so grateful that I have learned what I have to be able to make those decisions. So for now it is important that I am there. And at home we are trying to keep things as much of a routine as we can. We have been having either Daddy or Grandma's come and stay with them. I am hopeful that we can keep it that way. I think it is the best thing for the kids to have as much of a routine as possible. But there again, there may be days when Grandmas and Daddy aren't possible to be there and we will need additional help. I promise I will let you all know when we need that. Right now meals and prayers are about the best thing I can say to do to help. Oh, another way to help is let us know if anyone knows about a great deal on a mini van. We are trying to get one, because we can't put Avarie into our current car at all now with her immune system. We have to find a new van. So the money that we have been trying to raise will go to help with that, but so far we're still searching for one we can afford.

The News is In

So we got the news that we thought we would get and its not great. Her leukemia has gotten worse since her last biopsy. Her leukemia rates increased from 13% to 30%. That was what they had felt would happen based on her blood results and they were right. They are hoping to start her new chemo tomorrow. She is now in the Extremely High Risk category for leukemia. This type of chemo means that she will be in the hospital for 6 days worth of treatment. So if they start tomorrow we will be here until at least next Wednesday. We won't know completely how she responds to that until day 28. This round of chemo is a 28 day schedule vs. the 29 day schedule that she just completed.
The Dr. that came and explained a little of what to expect thinks that radiation to the head is part of this treatment plan, but she did not have the exact treatment plan in front of her. There are so many different treatment plans based on lots of different things. The other Oncologist will be coming in tomorrow to sit down and really explain everything to us.
We have started her on some Fentanyl and that seems to be helping her pain, I think we still need to increase it a little more, but after the scare we had last night with her blood pressures I think we all want to be careful. Oh, I don't think I explained what happened last night. It was a really long night. Her blood pressures were really low and the came in around 2am and were talking about moving her over to the ICU. They then pumped her with a whole bunch of fluids at a really fast pace to see if it would increase the volume in her blood, which would hopefully help her blood pressure, that worked and so she didn't have to go to the ICU, but it happened again around 4am and they were not happy about it, but since she responded to the fluids so well they didn't make her go to the ICU. They also were growing more concerned about an infection that has set in in an old bone marrow sight from 2 weeks ago. It has been slowly getting worse and so they took a culture of it last night. The results came back about an hour ago, it is e-coli. Now before you all get too worried, ecoli is something that lives with in us and is actually easy to treat. Its the animal ecoli that you can eat that is the scary one. So they have started an antibiotic for it and it will hopefully start looking better tomorrow. She also has a few other weird soars popping up that we don't yet know what they are. They seem pretty confident that they will be able to treat them all with antibiotics, but she is very soar and uncomfortable from them.
Over all she is incredibly soar everywhere. Between the pain in her bones, the infections around her body and the gas on her tummy from the feeds, she is just pretty miserable. Oh yeah she also has thrush, pretty bad too, but they have meds to treat that too. I am grateful that we are here that we can have all of these things treated.
Emotionally we are all holding up pretty well. I think the fact that the Dr's have been preparing us for this news has helped. It gave us time to digest it and let it sink in before we actually knew anything, so that when the results came it was more a feeling of ok thats what we were expecting now what, and not an oh my goodness how did this happen.
Craig is up here tonight with me, I was suppose to go home tonight, but after the scary night last night and the new news tonight I just couldn't go home. So my mother in law is at home with our kids tonight. My plan is to go home tomorrow, I am sure missing my other kids. Its just this constant guilt thing. I feel so needed up here with Avarie and yet I know my other kids need me too. I am just going to make myself go home tomorrow. I need to see my other babies too and they need to see me.

Day 29!!!

So we made it to day 29, but to be honest it is a little bitter sweet. We are happy to have made it to this point, but things don't seem to be headed in the direction any of us had been hoping.
We hadn't updated in the last two days because emotionally I think we are just trying to take a lot of things in. The Dr's have started preparing us for some bad news that they think we will be getting. They have a theory and they want us prepared for it. Avarie's white blood cell count and platelet counts continue to drop. They told us this is actually not normal at this point in treatment. Her numbers should be going up at this point. The chemo should be killing off all the leukemia and her marrow should be making healthy new white blood cells. So far her blood tests are not showing that. They think that there is some other leukemia mutation going on. Its still ALL leukemia, but back when we were waiting for all that genetic testing they think that there was maybe one of the bad genetic things there that was just barely present so they didn't find it, but now that they have been killing off all of the easy to kill leukemia they think that bad mutation has taken over and multiplied. Everything seems to support this idea, and they will do the bone marrow biopsy tomorrow to confirm this. We probably won't know the results until Friday though. Even then we won't know the extent of what we are facing for several weeks after, they will have to do more genetic testing to discover what it is we are facing. So more then likely Avarie will be going into the "Extremely High Risk" category and will be undergoing a much more intensive treatment plan. They say her chances remain about the same, that is the good news, however it is going to be a lot more difficult and a lot more hospital stays. Honestly I don't even know what to expect completely, I haven't asked. I plan to ask tomorrow, I just wasn't ready to ask yet, but I think I am now.
She has also started running a fever tonight, one of her old bone marrow sites came open the other day and started to bleed due to her extremely low platelet count and has now become infected. They have started her on an antibiotic for it.
The good news today was that she didn't have pneumonia, they did x-rays because they thought they heard something in her lungs,but they came up clear. That was such a huge relief, because I just don't know if she could have fought off pneumonia, she is just too weak and her counts are just too low to fight anything. I am so happy to have that be clear and I almost feel I can face everything else.
When I am able to find out more info tomorrow I will update with the latest info that I can. Some of this is unfortunately just going to take time to figure out. That can be so frustrating sometimes because we just want answers now, we just want our baby back now, its had to be patient and watch your daughter suffer. I am definitely learning to be her advocate and speak up. It is amazing, the longer we are doing this and the more I learn the more confident I am with speaking up and making sure things are being done for her.
We'll update soon.

Just need to post.

I really am overwhelmed with emotion right now. I wonder what happened to my sweet and full of life little princess. I told Jenell I wondered where are little girl was and I couldn't contain my tears. We embraced and after I was done crying she told me she had looked at some photos of Avarie at the garage sale and was wondering the same thing. Then she showed me some pictures of Avarie I hadn't seen for some time and I felt both joy and sorrow. I was reminded of how special a spirit she has and was sad to comprehend a life without her. I know people say shes going to be OK and I am as positive as I logically can be and I leave the rest in our Father in Heavens hands. I also was reminded tonight by a sweet angel that there many people who have deep and true invested feelings in Avarie and our well being. That being able to add positivity to all of our lives helps sooth the weary soul. I have wonderful parents on both sides and there support has been nothing short of complete support and sacrifice. I also have wonderful brothers and sisters on both sides of the family who love me in spite of my imperfections. I also have a ward I love and am so grateful to for all they do and all the prayers and thoughts. I cant forget a little family who have taken on so many things above and beyond anything necessary. I would like to call them friends and am sure they are showering that gift that only comes from the spirit of Christ (No arguing). I know the only way to have the kind of success I want out of this will be to use support of others and the support of my wife. The most important support is that of the spirit that only comes through faith in the lord Jesus Christ and his Atonement which allows intercession to the Father. I love every one who is thinking of us and who has taken any role at all in action in prayer or in thought. I hope Avarie is well enough to be home soon. I love my family so much. My wife and children and am trying as best I can to keep things fairly normal at home. I have had help from family, friends and great a great supervisor at work and thanks be to them all. I am learning all the little nuances of Avaries hospital care so Jenell can go home and bring some normalcy for the other three little ones. I thank you for reading and ask That if you do only one thing it would be to keep Avarie in your prayers.

Thank You

Craig Giles

Three Days Left Until Day 29!

I want to start this post with the happiest thing that has happened to me in over a month. Around 4am Sunday morning I as awake with Avarie changing her and helping her, she had her eyes closed and then said "Mom, I love you!" She then gave me this tiny little smile, that honestly I wouldn't have known was a smile except she told me "I just smiled for you." I needed that so much. She won't let me touch her or love her at all right now, so to be able to have any connection with her is great, but to have her do that lifted my spirits. It felt like the first time your child tells you they love you, or the first time they smile when they're tiny and you know that smile was for you. It has lifted my spirit and given me strength to keep going.
They told me to plan on spending those next three days here. But day 29 is just around the corner. They broke down for me what they exactly looking for and what will happen in the different scenarios. The first senario and the one we are hoping for, is that the bone marrow biopsy shows less then 5% leukemia in her bone marrow. They will consider that remission and she will then proceed into what is called "Standard High Treatment". The high is because she is a slow responder, this is the best case scenario right now, it is the one we want. The second scenario, this one would be ok, but not the one we hope for, would be if they found more then 5% but less then 13%. The 13% is because that was the official number of leukemia still found in her marrow the last time. So as long as it has continued to go down then they will keep her on her current chemo schedule and just give her two more weeks of the same and then re-evaluate at that time. The third scenario the one we really don't want, is for them to find 13% or more leukemia in her marrow. In this case she would then move into a whole new category. She would no longer even be considered "Standard Risk", she would move into "Extremely High Risk" and we would have to plan on pretty much living in the hospital for the next 6-8 months. I am not sure what pretty much live in the hospital means exactly, but it was pretty clear we would have a permanent second home for awhile. As opposed to only coming in for treatment or when there was a problem. So these are our three options right now, not that something else couldn't come up and throw a wrench in it all, but these are the three most likely possibilities.
Today has been a slower day. Its the weekend, so there is no physical therapy or occupational therapy, its just kind of a hang out and deal with anything as it comes kind of attitude. She did get a platelet transfusion today. I was curious what platelets looked like, just incase any of you are too, they are kind of orange looking. I think I expected it to just look like blood, but no it kind of looked like watered down orange juice. Because her platelets were so low a couple of her scabs from different procedures over the weeks had started to bleed, but they seem to be scabbing up tonight. Her new platelets are doing their job.
Its amazing the stuff you learn living through this and being here. I wish it wasn't under these circumstances that I was learning all of this, but its all so fasinating and it really helps to try to learn as much as you can. It gives me a sense of some control over what is happening to my daughter. The more I learn and understand the better I am at trying to help her and make decisions for her.

Garage Sale Day

Today was the big garage sale. It was overwhelming to see the response from people. I kept hearing about peoples donations and other people spreading the word, but I had not personally seen any of it yet. I was able to get my neice, Megan to come and sit with Avarie this afternoon so I could get away for a couple of hours. When I got there I was speechless. The place was packed with stuff and people buying the stuff. I then saw a back room filled with more stuff, when I walked back there I was so overcome with emotion to see how much there was. There are not words to express the feeling I had. My family organized this entire thing. They worked until midnight almost everynight getting it all out and pricing it all. They contacted everyone they knew for donations and those people contacted people they knew. I had heard all of this, but to walk in and see the result of all of their love for my family, there just aren't words for it. My gratitude for all who worked to pull this off and all who donated and all who came to shop and support us, is eternal. I pray that you all will be blessed for your love and service towards my family. You all have my love forever. Thank you.
A quick update on Avarie, she is hanging in there today. She received her first blood transfusion today, and she actually looks pink right now. I hadn't realized how pale she really was until now. Her cheeks are even rosy. She will probably be having a platelet transfusion tomorrow. They have told me to plan on being here through Wednesday, since that is her day 29 and she continues to be a bit of a mystery to them. She is still having trouble with the formula they are trying to feed her through her feeding tube. They changed today to a formula that would be easier on her stomach, but that has not proven to be the case. So we have stopped the feeds for now and are contacting the Dr hoping to maybe try something else, or give her something to help with all the gas on her tummy. She is pretty uncomfortable right now from the gas, but she's hanging in there.