Home to stay and HAPPY NEW YEAR!

This is a picture from last New Year's Eve. My parents had all of the grandkids stay the night at their house and let all of us adults have an evening together. The kids all had a great time. Avarie is buried in there with her cousins. The other picture is her being silly Christmas night. Even though she does not feel well she still finds ways to let her silliness show through.
We made it home, no unexpected fevers or delays. We are at home. The other kids spent the night at their Grandma's so that we could get Avarie settled in and all of her meds figured out with out distraction. It all went well and we are fairly settled in. The kids came home this afternoon along with Zakk, Avarie's big brother. He is 16 and we haven't seen him since summer. Avarie is very happy to see him and he is so sweet he is so gentle with her. Most 16 year old boys couldn't care less about their younger siblings but Zakk is always so great with all of the kids, they all love him so much. Craig has to work tonight and tomorrow night and so Zakk is helping me with the kids by playing with them and keeping them happy and busy.
The plan for Avarie is for her to remain at home and go back to the Dr's every Tuesday and Friday for check ups. She will be due for chemo again in just a little over 2 weeks and we will be back in the hospital then for that, but until then we will be able to stay outpatients until then.
So far home is going much smoother then it did on Christmas, I think that is because I knew a little more what I was in for. Things seem to be a little bit better although very busy. So my updates may be short for awhile unless there is something big happening.
I hope you all have a very wonderful New Year. We are hopeful for a great New Year. 2009 is going to be a better year then 2008, I am anxious for the new year to begin and leave this year as a memory. I hope 2009 is wonderful for us all. Happy New Year!

Going home for GOOD tomorrow!

Avarie came back to the hospital Friday morning after Christmas to start chemo. Craig was suppose to stay with her through Sunday afternoon and then after church I was going to switch out with him and stay until she was discharged. Avarie had other plans. She was not happy about mommy leaving and she made sure Daddy and the nurses knew it. She was hysterical all night and through Saturday morning. They tried to calm her with some adavan and Benedryl but it just wasn't working. So I switched out early and come Saturday afternoon. I guess she just needed her mommy because she has been ok ever since. It makes me feel good to know that she wants me and loves me because she has a hard time showing that right now. But at the same time I was really looking forward to doing a little more cleaning around the house and going to church Sunday morning. Oh well the cleaning will still be there when we go home tomorrow, it just may be a little more difficult to get to it. We have the kids staying the night at Craig's parents until Wednesday afternoon so that we can get Avarie home and set up and Craig has to work Tuesday night. There is just no way I can take care of Avarie and the other kids on my own. At least not right now, hopefully as I become more comfortable with the meds and wound care things I will become more familiar and confident with everything.
She will finish chemo in the morning and then we will be headed home. Her counts will start to go down in the next few days and by this weekend they should be pretty bad. We are coming back on Friday for a check up. I am keeping a bag packed in my car from now on so that I will be prepared if and when we have to stay again. I have been here long enough to watch how the other family's routine seems to go. They are in and out a lot, usually they are only here for a couple of days at a time and then home for a week or two and then back in for a couple days. I just hope we can fall into that routine instead of the one we have been in.
I talked with the infectious disease control Dr today. He is still pretty skeptical about Avarie having Sweet Syndrome. He says it is just so rare, he has a hard time believing that she could have it, and her presentation has not been typical for Sweet Syndrome. He still feels that it is yeast. But our Oncologist/Hemotologists feel differently. They are encouraged by her improvement since she has started the new medicines. They also point out that if it had been a yeast infection they feel two things would have happened, one her blood cultures that they took everyday would have grown something and two that with all of the intense antibiotics and antifungals that she was on she would not have continued to have breakouts. I did not get a chance to explore that more with the infectious disease control Dr. We all feel pretty strongly that this next week will give us some answers. When her counts go low if it is yeast of some other type of fungal then we should see it spread again. If it is Sweet Syndrome then we should see it continue to improve with the new med and steroids that she is on. Oh yes, she is on steroids again and this time she is actually reacting to them the way we had expected. She is incredibly hungry and finally eating, a lot. We are expecting to take her of TPN tomorrow, that is her feeds that go into her vein. We will continue with the feeds through her nose for now until her nutrition is more stabalized. We tried moving her feeds from through her nose tube to her stomach tube today, that didn't go so well. She is eating a lot and so with the food and the feeds all going into her stomach it was just a little too much for her tummy to try to handle and her tummy became soar and hard. We then moved her feeds back through her nose. The nose tube bypasses the stomach and goes directly into the intestines so that her stomach does not have to try to handle the feeds. She is now a lot more comfortable.
On my Christmas post I neglected to thank all of the people that helped to make our Christmas wonderful. There were many wonderful people that went above and beyond to make our Christmas a happy one and we are so grateful for all of their sacrfice and kindness. It was a wonderful Christmas and there is just no way that we would have had such a fun Christmas if it wasn't for so many wonderful people. Thank you all so much.
I will update once we are home tomorrow and settled. Hopefully it will all go well and hopefully I will be able to get a little cleaning done when Avarie naps or then again perhaps I will nap too.

Christmas

I wanted to post some pictures from Christmas. Avarie had such a great time. I don't think she really whined once, at least not the way she does at the hospital. She enjoyed her brothers and sister so much. It was such a blessing for her to be able to come home, we could all tell how happy it made her. I know this is going to sound corny but honestly that was the best present ever. I loved having my whole family together for that day, minus a very important member, Zakk. We have not gotten to see him yet this Christmas. Zakk is Avarie's half brother he is 16 and she adores him. We are hopeful we will see him this next week sometime, but 16 year olds tend to be busy.
Avarie loved Christmas morning. Carrying her downstairs and seeing her face as she saw the presents. She was so excited and she loved everything. It didn't matter if it was a book or a pack of all of the Princess Barbie Dolls, she loved everything she opened. It was so fun to watch her. She was in such a good mood all day. She sat at the table and played with Addisen and Carter. She sat there for a long time playing pretend. She even ate a little bit of food at dinner time. Of course she claims that nothing taste good any more, but I try not to let that bother me, the Dr's say it is a side effect of the chemo it has altered her taste buds, at least I keep telling myself that every time I try to make her something.
Having Avarie home was wonderful but honestly it took a lot more out of me then I had expected. She is on so many meds and has 4 wounds that need dressings changed twice daily, one of them is an open wound that needs to be unpacked, cleaned and then repacked. The meds start at 8 am and then 3 meds at 9am and then there is another med about every 1-2 hours including IV meds and her tube feedings. There are also her diapers which is quite a chore because she continues to be incredibly soar to even the slightest touch. She can not help with the lower part of her body at all and even taking her socks off of her causes a great deal of pain. We also have to keep a close eye on her temperature, luckily she never went over 100 while she was home. I loved having her here and having my family back together but it was so hard. I hate admitting that, I want to write that it was wonderful and everything went smoothly and it was the best Christmas ever. It was a great Christmas and we did get through everything. If it was just Avarie's care I think I could do it, I would be busy, but I would get through it unfortunately I have three other kids that desperately want my attention and need my assistance too. Then there are meals to try to make and clean up, forget about the rest of the house it just wasn't going to happen. Craig tried to help, but I don't think he realized half of what was going on because, and this was my fault, I didn't teach any of it to him. There really wasn't time, I only learned it right before leaving the hospital and then we were home and in the midst of it. I think he just felt helpless and overwhelmed and the kids wanted Mom to see how all of their new toys worked and all of the cool tricks they can do with those toys. They also like to tattle about every little thing that happened while I was gone, we've had to make a rule that they are not allowed to tell me any of the bad stuff that happened while I was gone unless it involved someone getting hurt. The rule is a work in progress and sometimes Addisen just can't help herself she has to let me know exactly what happened every second I was gone. I honestly would love to be able to just sit down and talk with her and let her tell me all of the good and bad things that happened, but there just isn't time. I have started doing a date night where I let one of the kids stay up late with me, but sometimes that is hard because the evening is the only time I have for myself to try to unwind. I give that up sometimes, but other times I just need that or I am never going to make it through this. I'm trying to reach a good medium.
So to make a long story shorter, I am terrified to bring Avarie home permanently. I don't know how I am going to do it all. I know I have a ton of support around me and I think I am finally over some of my pride issues, at least enough to recognize that I can not do this on my own, I am going to need all of the help anyone is willing to give once Avarie comes home. I know we will get through this, but oh my it is going to be a bumpy road.
One last note, that infection that Avarie has been battling they now think it is not yeast or mold, but something called Sweet Syndrome. It is very rare, the infectious disease control Dr's say they only see maybe 2 cases a year, but that is the latest opinion. The reason is that they have never been able to get any of her blood cultures to grow anything. They are always completely clean with no bacteria or fungus in them. They once got one biopsy that showed yeast, but yeast occurs naturally in the body and since none of the other biopsies have ever grown anything and they do blood cultures daily on her and they have always come back clean too. Yet she obviously has these nodules on her body and kidneys and she runs high fevers almost constantly there has to be something going on. Sweet Syndrome is where the body, for some reason of course they do not know why, collects white blood cells and deposits them around the body. It causes high fevers and rashes and or nodules, it also can cause a lot of joint and muscle pain and weakness. They are attempting to diagnose this right now, but its not a simple grow a culture get an answer kind of test. So I will keep you all updated on that. Honestly I don't know any more about the Sweet Syndrome yet, I haven't had a chance to research it yet. But it seems to fit the little bit that I know.

HOME!!!!!!!!!!!!!!!!!!!!

I am posting from home and my sweet little girl is laying in my bed being silly. She is so happy to be home and the kids are so happy to have her home. They cannot leave her alone and Avarie is loving every second of it. It is a little overwhelming because she has so many meds and I am trying to figure it all out, but luckily my parents came and helped me out this evening. Craig is at work, but will be home shortly and then my family will be complete. We will all be under one roof for the first time in 2 months. This is a great Christmas.
We have to take Avarie back on Friday, but at least we have about 36 hours together as a family.
Merry Christmas to all of you. I hope you all have a wonderful Christmas.

OH NO, NOT AGAIN!

Avarie spiked 104 fever last night and has continued to run fevers through the night. The nurses tell me to not give up hope yet of going home for Christmas, they say there is still a small possibility she could go home for maybe just Christmas Eve through Christmas and then come back, but its only a small chance. Most likely we will be spending Christmas here. I haven't told her yet, she thinks its just the snow keeping us here for now. I am waiting because I don't want her to feel responsible for not being able to go home, its better if she can be mad at something else keeping her here rather than her own body. I am waiting for the Dr to come in this morning and the Dr on this week is one that I know will do everything possible to get us home even if it is only on an overnight pass and not an actual release. I'll keep you all informed as we hear anything. It is good though that the weather kept us here yesterday, it would have been very traumatic for her to have gone home and had to just basically walk in the front door and then walk back out. I am thankful for that. Heavenly Father was definitely looking out for us yesterday on that one.

Almost Home! Just not Today

I have always loved the snow. I can honestly say it has never impacted me negatively. It was always a wonderful thing when school got canceled for snow or work was closed. I have always seen the snow as a fun distraction, but not anymore. I am not a fan of the snow today. Because of the snow we can not get Avarie home today. The reason is that the home health people that are suppose to come in and bring the machines that we take home with us and teach us how to administer her meds and feeds at home could not get in today. There are a couple of other kids here today that are in the same boat. They were also suppose to go home today but can't. We are hopeful for tomorrow, but the roads are not suppose to be any better then today, so who knows when we will get home. I am hopeful for tomorrow, but trying to be realistic.
Craig and I still had to switch places today though. He has to be able to get to work tomorrow, there are people counting on him. My brother, Brandon, was wonderful enough to come and pick me up in his truck with chains and take me to Fred Meyers because I needed to grab a few things for Christmas that I was not going to have another chance to get, and then he drove me here and picked up Craig. Not only that he also took my other kids for the night and possibly the next two nights because Craig has to go to work and everyone is snowed in and not able to get to my house and stay and then get home after. Craig doesn't get off until 10:30 pm. Brandon is a good brother and my sister in law, Becky, is wonderful because she has a newborn baby and 5 other kids, yes they have 6 kids, and they still took my 3 kids. They are either crazy or extremely wonderful, I'm pretty sure a little of both, haha just kidding they are wonderful people.
The nurses are all angry for me at the home health people, so I am just trying to stay optimistic and I am trying to not hate the snow, but I'm not seeing the same beauty in it today that I saw before.

Preparing for Home

Avarie thought she was so funny in these pictures. Grandma Foushee brought her some ornaments shaped like snowflakes that had the cutest little saying on them and Avarie decided to make them into earings and wear then. She was very silly that day. She stuck her finger up her nose and then laughed so hard at herself. It was so funny to see her do something like that, I had to take a picture of it and post it. Sorry if anyone finds it gross.It was on Thursday when she was feeling really good.


The Dr's are moving ahead with their plans for Avarie to come home on Monday. Although I am concerned about the weather. If it doesn't let up I am not sure we will be able to get her home. For anyone reading this that is not in the Portland Metro Area, we are experiencing an "Arctic Blast". That is what the news stations keep calling it. We have over 8 inches of snow on the ground right now and freezing rain is just moving in to the area and we are expected to get anywhere from 1/4 inch - 1/2 inch thick of ice covering the ground when the freezing rain is all done and then we are expected to get more snow on top of that for the next several days. AAHHHHHHH!!!!!!! I want to bring my baby home. We have studded tires on our van, but I don't think that will do much on those kinds of streets. My brother has a 4x4 with chains, and has offered to help, but honestly I am concerned about that. Avarie has enough problems, I don't want to put a car wreck on top of it. Some how this will all get figured out and we will get her home.
I was lucky enough to get out this morning quickly so I could pick up a couple of things that we are going to need for her at home, like diapers and pillow covers.
She will be coming home with a lot of machines. There are home health nurses that will be coming and teaching us how to use the machines and administer her medications on Monday (if they can get through). They are suppose to actually be going to the hospital to teach us but I don't know if we are taking the machines home with us from there or if they are delivering them to our house, that part was a little confusing.
Avarie will have to go back into the hospital on Friday for her next round of chemo. This round is a 4-5 day stay and then as long as she is doing ok and there are no new infections we can take her home again. I was at the hospital long enough to see how other peoples routines go and I realize that we will be spending a lot more time there then I had hoped. I see certain families coming and going a lot. It just takes the simplest of fevers or viruses to put us back in there.
On Friday Avarie had the endoscopy and they did find some erosion of the stomach lining, which is basically some pre-ulcers. The only thing they can do for that is to put her on Prilosec for the stomach acid. If anything the throwing up has probably caused the erosion and not the erosion causing the throwing up. So we still don't have any answers as to why for the last 2 1/2 weeks she throws up everyday, usually 2-3 times a day. It doesn't matter if she is eating or not, she can go days without food on her stomach and she still throws up. I'm frustrated to not have an answer to this one, but I know she is only home for a few days, so we can address it again at the hospital this next week if the problem is still there.
They also put in the "button" on Friday. That is a feeding tube that goes directly into her stomach through the outside of her stomach rather than down her nose. She still has the one in her nose for now because they made that one go longer then her stomach. Instead of the one through her nose ending in her stomach and feeding her stomach it goes through her stomach into her intestines and puts the food directly in there. They were hoping that it would ease the irritation on her stomach lining and hopefully help her not throw up any more, so far that has not been the case, but it was worth a try.
This little video of Avarie was from Thursday night when she had such a great night. The video was from the end of night as she had started to settle down a little, but she was still happy. She was doing so good that night, but having the "button" put in on Friday has set her back a little right now, but I now know that she is still in there. Avarie is still inside that sick little body. We have upped her pain medicine to help her feel better. Having her do so well that night that she was "overdosed" a little on Fentanyl helped us see that we have not been giving her enough to help her completely recover. She is now on more and as she recovers from the "button" procedure she will emerge again. Anytime she has a procedure done she emotionally shuts down for awhile.

HOME! (maybe)

So I am trying not to get my hope up, but I am failing miserably. My hopes are way UP! They are planning to send us home in a couple of days as long as todays GI tests look ok. She has stopped having fevers and is acting more herself. All of her wounds on her body are healing and her numbers look great. They really want to get her home for Christmas. We still have the nutrition thing to get stabalized out, but we are working on it. She continues to throw up once or twice a day, with out reason. At least not any reason that we can figure out. That is why they are performing some GI tests today. GI is Gastro Intestinal, or something like that, they are the stomach and bowel guys. They gave Avarie some contrast this morning and have been doing x-rays all day watching it move through her system to see how its moving. We are looking to see if there might be a blockage or something else causing her to throw up. Tomorrow she is also have an endoscopy(sp) where they take a scope and look at her esophogus and stomach. (I am sorry for any misspelled words). They are discussing putting a "Button" in her instead of her NG tube. A "Button" is where they place a tube directly into her stomach and it comes out through her stomach. It is a longer term solution for her nutrition problems. The tube through her nose is not a good long term solution and Avarie is going to have nutrition problems for awhile. We can't get her to eat anything. She has not taken anything by mouth for maybe 6 weeks or more. She drinks a little, but does not eat at all, she tries sometimes, but she just spits it out and says she can't. We've had speech therapy in to evaluate and they can not find any reason for her to not be swallowing, they think it is a combination of a lot of things. Basicly it is just going to take time and therapy to over come that. So anyway, the Button would be a better solution for nutrition issues, but I hate to put her through one more surgery, but it may be unavoidable and her counts are really good right now so if they are going to do it they want to do it ASAP so her body has time to heal from it while her counts are still good. She is scheduled for her next round of chemo this next week. They are going to hold off until the day after Christmas. It will require a 2 day stay and then as long as there are no complications she can go home. She then has to stay again the following week for 2 more days. This round of chemo just works that way.
On one other note. We got the HLA typing back. That was the blood test to see if our kids were a match for Avarie and none of them were. I am honestly quite shocked by that, but they are going to still look for an unrelated donor in their donor registry. I don't know if there is much of a chance of finding an unrelated donor, but the Dr seems hopeful. Any of our relatives have as much of a chance of being a match as anyone else across the world does. It is a long shot to find someone, but they do find matches. We are looking into doing a bonemarrow drive, but its not like the Red Cross Drives. The bone marrow registry charges about $40 dollars to be on the registry.

Avarie the Superhero

Avarie had her special test today. Although what I didn't realize yesterday was that the chemical that they were giving her today to make her white blood cells light up in the picture is RADIOACTIVE. Yes Avarie is radioactive today. The nurse that she had today is pregnant with twins and so she had to trade out with another nurse. She couldn't be around Avarie after she became radioactive. Sorry I have to keep saying that word because it is just funny to me to think that my daughter is radioactive. I guess it shouldn't be funny but it kind of makes me feel like I'm talking about a superhero or something and well she is, Avarie is a Superhero. I think I want to come up with a superhero name for her, but I need suggestions. So everyone put your minds to work and help me come up with a superhero name that will fit her "Glowing Personality" and everything she has had to overcome.
The testing went well, they took the pictures an hour after putting the substance in her and then again 4 hours after. The second testing took over 2 hours and she was sedated for that. She always has a very hard time coming out of sedation when she has been under for that long. The short sedation's are easy on her, but she is incredibly emotional when she is coming out of the longer ones. They are going to test her again tomorrow and then we should have some results.
She is going to undergo one other test tomorrow. They are going to inject contrast into her stomach and let it travel through her bowels and see how it travels while they take several pictures to see the movement of it. She continues to throw up even though she is on so little food, she even gets sick when she is off of all feeds for several days. She just keeps getting sick for no reason, so we are looking to see if there is a blockage causing it.
She also started a new drug today called Neurontin. They are giving this to her to help with her overly sensitive nerves. They are thinking that part of the reason she is in more pain over the last week is that her nerves have become overly sensitive. She cries about pain with just the simplest of touches. It will take several days to see if it works, but we used it for Craig about a year or more ago for his back for almost the same reason and it did work well so we are hopeful. They are also wanting to change her to a different pain med, she has been on Fentanyl for this entire time and they feel it is time to try a different combination of something else. It will probably end up being morphine. She never did as well on morphine before, Fentanyl is stronger, it is the strongest, morphine is a step down, but we need to make some changes to try to make some improvements.
I feel better today about them wanting to remove all of her lines. I am not happy about it happening but I have a much better understanding of why they need to do it. It is a long explanation and full of a lot of medical jargon, so I will skip the explanation. It is just something that they need to do. Although the surgeons are not happy about it, the Dr's are still trying to get them on board but we have had 3 infectious disease control Dr's come in and consult and they all agree and 3 of our Oncologists/Hematologists Dr's, they are all on board on this. We just have to get the surgeons on board. They are thinking that it will probably happen on Friday, possibly Thursday, but most likely Friday.

Changes, necessary but thumbs down from Mom

Just needed a good picture of her smile today with her big Sister!

Avarie continues to do about the same which is making the Dr's frustrated. So they are going to change some things up. We have had Dr. Faith on her case this week, she is a new Oncologist here, she is nice but she is just out of her residency about 1 month ago. Dr. Norwood takes over tonight and I am grateful. Its not that Dr Faith wasn't good, its just that Dr Norwood is great. She will be great probably one day, but she just needs time to grow and learn. Dr. Norwood is also on the Pain Committee for the hospital, so he is very interested in that part of her which is good because it has started to get worse. He has some good ideas for that, we're going to discuss them a little more tomorrow. But for now she continues to have this infection even though she is on anti-fungal medicines that should be wiping it out. They have been frustrated by the fact that they can not find a source of the infections. Then yesterday they discovered a small blood clot at the base of her "buddy" that is her port that is directly linked into her vein that allows them to access her veins without any discomfort to her. It is directly under her skin, she had it surgically put in there when she was first diagnosed. She gets all her meds through it and has blood drawn several times a day through it. She also has a PIC in her arm that they give her meds through too. She has so many meds and fluids going that two lines really isn't even enough most of the time, but it is the best they could do for now. But since discovering the small clot they are wondering if the clot may be the source of the infection, so they want to remove the "Buddy". They also want to remove her PIC. They don't want any foreign thing in her body for the infection to latch onto. Unfortunately this means that they will have to change how they are administering her fluids and meds. They are going to stop the TPN that is her feeds through her veins and just do fluids and pain meds through IV's placed in her hands. They have switched her NG feeds that go through her nose to her stomach to a completely predigested form, instead of the partially digested that she was on before. They are hoping she will tolerate that more, she is still throwing up a couple times a day. So we have not been able to increase her feeds through her NG Tube yet. Until we are able to increase her feeds she will be without any nutrition besides fluids keeping her hydrated. They said that nutrition is just going to have to take a back seat for a few days while they try to figure this out. So for a little while she will not be receiving any nutrition, I'm not happy about that. They are hoping to be able to go a whole week with Port and the PIC removed, but they suspect they will only get maybe 2 or 3 days, but that will give them time to biopsy the clot and the lines that were in here to see if they can find any signs of infection on them. Then she will have to undergo surgery again and have them put back in, but in different spots. I hate this idea, but I understand why they want to do it. I am just so frustrated at the thought of setting her back again. She just started smiling and playing again this last week, and her physical therapy has been going great. Now we're going to put her through some more surgeries and that always sets her back and makes her retreat emotionally. I know they are going to want to do this all before Christmas, which means she will be completely emotionally withdrawn on Christmas. I just wanted her to have that one day to forget all of her worries and pains and just be a little girl and see all of her presents and be excited to open them and play with them. I just wonder how much more her little body can take. The Dr's all tell me and frequently just how sick she is and how she is just such an abnormal case. I'm glad that she is not normal, that means that other families are not having to go through all of this and it means she gets extra attention by the Dr's, they are very careful not to overlook anything with her, but at the same time it scares me to have them tell me that, and when I tell them that it scares me sometimes they tell me that she scares them too, hello that doesn't make me feel any better, but I think they are just trying to let me know that they are taking her case very seriously and that she is really as sick as I think she is. They won't even consider her a candidate for transplant until this is all completely cleared up and she is "healthy" (without infections) for a good length of time. We still don't have any results back on that, but we suspect we will in the next week or so, but even with a positive match she will still be months off from doing the procedure.
Oh, one other little thing going on with her. Tomorrow she is undergoing a special test where they take out some of her blood and inject it with this special chemical that attaches on to white blood cells and makes them "glow". They then put the blood back in her and let it circulate through out her body for a while. They then x-ray her and the chemical makes all of her white blood cells light up under x-ray, it can show them where major concentrations of white blood cells are, then we can know where infection sights are. White blood cells are your disease fighters, so where ever they are in big concentrations you can then see where the infections are hiding. That is tomorrow at 3pm, she will have to be asleep for that one, not sure why? It just occurred to me that I don't know why? I will have to ask, I hate not knowing things?

Infection Answer

We finally know what the infection is that is causing Avarie so many problems. It is not mold, but it is a fungus. It is one that they had suspected early on Candida, or yeast. Yes a simple case of thrush can be dangerous. Not in a person with a healthy immune system, but someone who does not have the ability to fight an infection or keep an infection under control the fungus can grow rapidly and invade all areas of the body. So far it is only the kidneys that have been infected. At least they are the only organs that are showing positive signs of it. But they are going to do a head CT on Monday to check there too. They have already done abdomen and chest CT's in the last week checking other things, so they have had a pretty good look there but the head hasn't been scanned for a while and last time it was she did have some shrinkage of the brain due to malnutrition. They want to recheck and see if that is correcting itself yet and look for any Candida.
She is also a little jaundice. They think her billirubin levels are up due to her being on the TPN for so long. TPN is the feed that goes into her veins. Its what is giving her nutrition and calories with out actually feeding her through her stomach. And billirubins are produced in your liver and when elevated are what cause jaundice. They would like to reduce her TPN but she just can not tolerate the NG feeds, the feeds that go through her nose to her stomach. It causes her so much gas pain and diarrhea when we try to turn up her NG feeds.
Its hard when there is all this going on and I am at home. I can't ask all my questions and really understand everything that is going on. I have to rely on Craig to fill me in and he tries so hard. But I always have a million more questions then he has answers. I like to fully understand whats going on and I am grateful for the Dr's and nurses that take the time to explain or put up with my questions. Understanding what is happening is what helps keep me sane. The times I feel panic are when no one has any answers or they aren't sure why this is happening and yes that happens a lot but as long as I can understand what they are doing to try to find the answers I am OK.
I was able to take the kids to church today. The last two weekends that I have been home have been filled with sick people. Two weekends ago the kids were all throwing up and this last weekend I wanted too and was having some other flu problems that kept me home. So it was nice to finally be able to go back today. Although they let us out early because it finally started to snow. We didn't get the snow like Portland got. We woke up to nothing and have been just finally getting snow this afternoon. But while we were at church it started coming down really hard and they were worried about us all traveling home if it got worse so they cancelled the rest of classes. Of course as soon as we all started to leave there was nothing the skies were completely clear, but I just looked outside right now and it looks like it is starting again. Craig is going to try to take Avarie out and scoop up some snow for her to hold in her hands. I'll let you all know how that goes. Avarie and her daddy have been having little water tea parties several times a day. It is so cute, I love picturing them sitting there together drinking out of her tiny little porcelain princess tea set.

Hospital Gloves

Avarie wanted to put on some hospital gloves this morning because we all had them on. Doesn't she look thrilled about it? She actually had a good time with them on for about 10 minutes, she didn't smile, but she enjoyed it. We have to wear gloves when handling her diapers because they are testing them to see if she might have an infection that causes bad diarrhea called C-DIF. I don't think she has it, but better safe then sorry. So for right now every one has to wear gloves and protective gear when coming into the room. Protective gear means a hospital protective gown and gloves. Also the food people won't bring her food tray in, the give it to the nurse and the nurse brings it in. Although she is allowed to leave the room. Seems like some silly rules to me. If they have to take those kinds of precautions then you would think they would ask her to stay in her room at least until the test comes back. C-DIF is common in hospitals.
I did get Avarie to play Candyland with me today. It is a Dora Candyland. The figures are Dora, Boots, Diego and Backpack rather then the colored gingerbread guys. She actually had a good time and did laugh and smile at me because Diego kept slipping out of my hand. I made sure Diego slipped a lot. We then played pretend with the figures. It is wonderful to see her able to be a little girl again. Even if it is only for a little bit. Slowly I feel like she is coming back to us.

6 Weeks and Counting

We have been here for 6 weeks today. That seems crazy, but its true.
Avarie is slowly improving in some ways and still a big concern to her Dr's in others. Her pain is somewhat better although not completely gone. The Dr's aren't sure if her infection is actually mold now, they thought it might be, but the cultures never grew and so they are also questioning whether it might be Candida. Candida is a yeast infection or thrush, but it can get out of control and invade the whole system. So we are not sure yet which one this is.
Her immune system is gone again. We are expecting it to return this weekend and when it does we are not sure if we will be facing any new infections or if the current fungal infection will be worse or not.
We are getting ready to go downstairs for another CT scan. They want to get a good look at her tummy. She has been throwing up everyday since Friday night and we are not sure why. They want to check out her stomach. She is also having diarrhea which she has been having since the second day we were admitted here, but it has changed some so they are doing some testing on it and trying to figure out what is going on with her GI track.
She is also still running fevers over 104. We have yet to get those to go away. So even though all of those things are still going on Avarie's mood has started to improve. She has started to interact with me more and has even started smiling a little again. She had started smiling that one weekend that we got her on tape and since then she has been grumpy and emotional. She has undergone a lot of testing since then so we are not surprised by the decline in her attitude, but it is nice to see that getting better.
So basically she is looking and some what feeling better even though she still has a lot of things going on medically. We are just kind of waiting a lot of it out.
I can't believe Christmas is only 2 weeks away. We have come up with a plan for Christmas if she is unable to go home for Christmas and honestly I like the plan. I am ok with it if that is how it works out. It will be a memorable Christmas whether spent at home or in the hospital. I use to think that would be the worst thing to spend Christmas here, but now I'm ok with it. I think I am preparing myself because I can't imagine us actually being allowed to go home before then. Its possible, but as each day goes by I am realizing how unlikely that may be.

Sunday evening post.

This is Craig here writing to you. I have been here since thursday night around eleven p.m. I came directly from work so I would be able to spend a little more time with Jenell. It was nice just to be in the same room as each other for more than fifteen or twenty minutes at a time. I will be here until tommorrow late afternoon. The kids as well as Jenell and I will be tested to see if any of us are a match to Avarie. Lets all keep are fingers crossed. Well since I have been here this run things seem to be kind of at a stand still as far as Avaries progression with most of her current problems(Strength,Ability to eat and swallow. The infection site healing and her mold infection)are the same. A few new changes have been made to a couple of her medications. Her pain medication has gone from a constant rate of 2.5 at one time down to 1.2 currently. This is a good step and sign that her pain is becoming more tolerable and should indicate she will be able to manage the pain with a medication that she can take at home. Also there was a change in her antibotic barrage. She stopped three and and started a new one to deal with the mold but that was causing a rash so they stopped that one started two others. I have spent alot of time in Avaries bed laying by her and falling a sleep at times as the nights a re usally long and sleep is very much broken. Some days she is more awake than others and we go for walks in her new wheel chair. It is good for her to get out of the unit and cruise the hospital a little bit. She has started to ask repeatedly if we are going home tommorrow or when are we going home. It is realy hard beacuse she just cant comprehend why she cant go home. Today after I got up from a very long night she was still a sleep around eight a.m so I laid back down until eleven and that was needed. We had resperatory therapy a few times today but she really slept aot today; Her grandpa Foushee came up to visit and she was just to sleepy to wake up for him. He and I had some lunch and talked about some recent studies surounding radiation. And had some good conversation reguarding some other general areas of interest and types of possible treatment that could directly help Avarie if those avenues we look into are pursued. I just want to make sure my baby girl has every opportunity to succeed and if that means traveling to the moon so be it. I dont want to pigeon hole our care into a concern for the chance of offending someone. I know that any professional in this field should have the ability to understand that a parent of a child whos life depends on the treatment and care he or she is given. May feel the need to look at other opinions and opportunities when those parents feel it is neccessary. I really value my second dad alot. He is a very wise man and it is a very beautiful thing to see how much he loves little Avarie(all of his grand children)and the time care he has put into seeing her battle with this disease be made as easy as possible fo her. And what ever there might be to better her odds of survival he has invested himself in seeking. This could be said of his sweet wife as well and she is a second mother to me. I see so much of her dedication to her children in my wife. I have been so blessed with a wondrful Father and Mother in law that together have raised and given to me the most amazing eternal companion I could ever hope for. Avarie is truly blessed to have her as a mom. I must thanks again all the people who love and support us through these trying times. i am reminded just how sweet and caring people can be every day. Thanks to Darrel and his group from my place of employment for there thoughts and support. Thanks to my bosses for allowing me to support my family,wife and daughter. Thanks to great co-workers who realy are amazing people. Thanks to my aunt Louise and her forces. Thanks to the van of power( the van my brother gave us)Thanks to my family and friends for being completley behind me allways and Avarie as well. Thanks to Jenells family for loving us so much. Thanks for all the hats. Thanks for an amazing ward(wow).I know there is more but I am realy tired so I will report again later.

I truly love you all

Craig L. Giles

Santa visited Avarie

Today was the hospital Christmas Party. Avarie got to be the first one in line to see Santa. I knew she wouldn't probably smile but I had hoped she would. She was definitely interested in him and I think on the inside was happy to see him, but she was just so tired. It is just so exhausting for her to leave her room and attempt to do anything. But she made it through. Unfortunately because we were the first ones in line we didn't get a whole family picture with Santa. It was a little disorganized in the beginning and it took so long just to get Avarie situated with Santa that we tried to hurry through because oh my goodness the line that started to grow behind us was crazy.
The hospital Christmas parties are kind of crazy because Santa gives out actual presents. Addisen got a Barbie that came with her horse that neighs, she loves the horse more than the barbie, big surprise there. Carter got a fire truck that has lights and sound, yeah thank you Santa for more noise makers for Carter. Avarie got a groovy girl that has several changes of clothes, but when she saw Addisen's barbie and pony later was sad and so when Santa visited the hospital rooms later we traded him for another barbie and neighing pony. Sawyer got a shape sorter that goes on the back of some type of bug, he has had so much fun with it but it only has a couple of shapes to sort, I think I'll have to buy him one with more shapes he loves it.
All the kids got to sit on actual police motorcycles. I could not get Sawyer to get off. He didn't smile while on it, he just sat there refusing to let me get him off. Then once I did get him off he kept trying to get back there. He's such a boy.
Besides the craziness it was really quite fun. My sister Andrea came with her kids and they all got presents too. The hospital also had about 10 different craft tables with different things for the kids to do.
There were so many people and it was all really kind of crazy but it was a lot of fun. The kids all had a great time.
We also had our Ward Christmas Party last night. The kids always love that one because they get to run around and play with all of their friends from church. Even though they shouldn't be running around, they all still end up doing that.
Avarie is still about the same with everything right now. We have identified the infections but treating them is going to prove to be a difficult thing. Mold is not easily treated and especially not for someone with a weakened and sometimes non existent immune system. They had switched her over to a different antibiotic Friday night but she had an allergic reaction to it and so they had to stop it and are trying a combination of two other ones. They say it will take several months at least to treat it. Maybe a little longer because it invaded some of her internal organs, but all of her organs are functioning well it has not caused any damage, it just makes it harder to treat. They have assured me it does not mean she will have to stay in the hospital the whole time while treating it. She will be able to come home at some point even still on meds. Unfortunately they are are sounding less and less optimistic about getting home before Christmas. But they said they are really trying and they are really hopeful. So are we.

A Little Explanation

I want to take a minute to explain what remission is. I have gotten a couple of calls and comments that made me realize I didn't explain it very well. I think we have all heard remission, it is the big Cancer Word that everyone wants to hear. It is a very important thing to be in remission and very good news to be there, but it just a stepping stone in someones fight against cancer. It unforunately does not mean cured. Remission just means that we have been able to kill almost all the cancer with in her. There has to be less than 5% to be considered in remission. Then once you are in remission you have to continue to fight off the cancer that continues to try to grow and take over again so that you don't have "relapse". If the cancer grows and takes over more then 5% then she will be considered in relapse. I have had several people want to know when we would go home and unfortunately that is still a long time off. She is still very sick.
We did finally get insurance approval today to have our other kids tested as possible bone marrow transplant matches for Avarie. They are going to be tested on Monday. They just have to have a little syringe of blood drawn. They are also going to type Craig and I, but really there is very little chance of one of us being a match. When they are testing for a match they are looking at the genetic makeup of the marrow, not just the blood type. Avarie is part me and part Craig and so there for our kids would be the best match for her because they are also part me and part Craig. The chances of finding a match outside of a full sibling is not very good, but it does happen occasionally. That is why they have a bone marrow registry. I heard a story about a dad that was typed for her son here in the NW but didn't match his son, but did match a little girl in Ireland and so he was flown there by her family and donated for her.
We want to do the transplant if we can because right now, even though she is in remission, she only has a 70% chance of survival. It use to be 95% when she was first diagnosed but because she didn't respond to treatment and had to be moved in to the extremely high risk category it dropped her survival rate to 70%. With the bone marrow transplant her chance of survival goes up to 80%. We want to give her every opportunity for survival. There are a lot of scary possibilities with the transplant but she could be cured from leukemia in maybe 6 months vs the 3 1/2 years of chemo before she is considered cured.
We have gotten back some of the pathology results on the biopsies Avarie just had this week on her kidneys and a couple of other nodules. The other nodules they biopsied last week did not give us anything except to show inflamation of the veins. The biopsies from this week have come back showing fungal infection. They said it looks like mold. They don't know what kind of mold it is yet. It will take about a week to finish growing the samples, but they are pretty sure it is some form of mold. Some molds are easier to treat then others so we will need to know for sure what kind it is, but for now they can change up her meds to start treating specifically for mold.
Avarie has been feeling pretty yukky the last 2 days. We had to stop her feeds that she was getting through her veins. She is getting too many meds between all of her chemo and antibiotics and fluids needed to flush the chemo that her body just can not handle more fluid going in to her veins. So we started the NG tube again, thats the tube that feeds her through her nose to her stomach, she has only been getting a tiny bit only about 10% of the nutrition and calories that she needs for the day through her nose feeds. Thats all she can tolerate. Even then she is not tolerating that well. She keeps getting sick and throwing up. Between the chemo, the fevers and her body trying to digest food again it is just all a little much for her system to tolerate. So she has been sleeping alot. She also had to have a blood transfusion today because her red blood cell count got down really low, but she had to wait until tonight to get it because she has had too many meds going. She didn't have a free IV line to put it in. She has so many tubes going in her right now and they are talking about trying to put another one in, but they just don't know where. They are hoping that since they have some answers on the infections that they will be able to cut back on a few meds and so they may not need it, but it is being discussed as a possibility right now.
We are excited for a Christmas Party here at the hospital on Saturday morning. Santa is coming and I have heard that he rides in on a train. Avarie is excited to see Santa. Well as excited as she can be. She stares right at me as I talk about him, I can tell she is really interested in hearing about him. A friend has a friend that dresses up as different characters and visits kids in the hospitals. He is going to come visit Avarie dressed as Santa. I think she will like it. I worry that she will just make her grumpy moany noise at him, but I am hoping that he will understand if she does. She just isn't happy about much. We got her smiling last weekend for a couple of days we got her to smile several times, but that has stopped. She is just not feeling good right now. I think next week as long as the infections don't get bad again or new ones pop up she will be doing much better and may even start smiling again. We are nervous what will happen this next week when her immune system is gone again, but we are hopeful that we can keep stuff under control through it with the right drugs now that we have some answers, we just hope that nothing new pops up.

REMISSION!!!!!!!

Avarie had a bone marrow biopsy on Monday the results came back this evening (Tuesday Dec.2) she is in remission finally. That means that they found less then 5% leukemia in her bone marrow. Actually the Dr said they didn't find any measurable amounts. This is great news. We were waiting for this since week ones bone marrow biopsy. It doesn't change any of her treatment plan, it just means that we have finally found the right kind of treatment plan for her. We just have to keep it from relapsing. She will still need a bone marrow transplant if one of the kids is a match or she will still undergo the next 3 1/2 years of chemo. Remission just means that we have the cancer under control. She will be cured when she has completed treatment and is cancer free still at the end of treatment.
I feel like throwing a party. I have been telling every nurse I see, I know all the nurses by now, so its not weird that I'm telling them, its just so exciting to have such good news finally. They are all aware of Avarie, whether they have been our nurse or not, they all know how sick she is. She has been one of their sickest kids here for along time. They are all so happy for us.
I was recently talking to someone who expressed a wish to know the details of what was going on on a daily basis. I realized that my blogs lately have been sporadic and not filled with the amount of info that I had been putting in them before. I think it just got to the point where there are so many little things going on I stopped writing them all and just started posting when there was something positive to post or if there were any answers, which there have not been many. I am going to try to start adding a few of the details of how she is actually doing to more of the posts. I can't promise I will write everything about our days here, but I can definitely be better then I have been recently.
So here is what else is going on. They did a CT scan yesterday in addition to her bone marrow biopsy and her lumbar puncture. The CT showed some abnormalities. They found spots on her kidney's and they could see the nodules on the inside of her, some that we weren't even aware of from the outside a lot of them around her spinal column. So today they did several biopsy's on her kidneys and on some of the nodules on the inside of her. They were able to do them all under CT guidance with just a small needle, they did not have to open her up. So there is very minimal pain from the procedure today. The Dr feels he got some really good samples and even showed me the CT's and the samples. It was really cool getting to see it all. I know some people would be totally grossed out by that, but I find that stuff really interesting and I am so happy that they got some good samples, hopefully that will mean answers. She continues to run high fevers, although they are coming a little less frequently, but they still continue to run around 104 degrees or more, we haven't hit 105 in several days thats at least good.
She has also been undergoing respiratory therapy every 4 hours. I don't think I posted it before, but she has had a small collapse in her right lung. It hasn't affected her oxygenation levels, but we want to get it fixed before it does. They come in every four hours and put an oxygen mask on her that forces air into her lungs. Its pressurized air, so it forces more air then you would normally breath in to try to help inflate that lung. They had hoped it would have reinflated by now, but so far that has not been the case. It is sounding a little better to them today then yesterday, so they are hopeful that it is slowly working. They will keep coming every four hours and then she will probably have an x-ray here soon to check on it.
One of the other big things that has happened in the last week was that they went in and removed a lot of the dead and infected tissue around her bone marrow sight that had been infected with e-coli. It just was not healing so they had to go in and really open it up to allow it to heal from the inside out. It is about the size of a quarter around an inch deep. They are packing it with a special dressing that actually has silver in it. Silver helps infection. So she has a very expensive bandage on her back.
She restarted her next round of Chemo last night. This round will go until Wednesday and then she will start some rescue drugs to try to help prevent damage to her organs. They poison her to try to kill any bad stuff and then try to rescue her after a the drugs have had a couple of days to do their work. Her immune system will be trashed again, but thats unavoidable. We are just hoping to not have a bunch of horrible infections to have to deal with, but considering that we are still dealing with them right now and she actually has an immune system I can't imagine that infection is not going to still be a problem. Her immune system will be at its worst this weekend into the middle of next week and then should start to rebound by the end of next week. The infections have been one of the worst parts of all of this. Hopefully the biopsy from today will give us some answers so that we can stop giving her so many antibiotics. And then we can focus on one group of antibiotics to fight the infection instead of a variety of top gun antibiotics trying to fight something that we have no idea what it is.