Summitsforkids.org

Avarie is still in the hospital with off and on fevers. They did a nose swab on her and found out that she has the Influenza A Virus. There is influenza A and B virus's. So basically she has the flu. Not such a big deal in a normal kid, we all get the flu, but for Avarie it can be a big deal. Especially when her numbers have been dropping from finishing chemo last week. Luckily she has not had any complications from it. I think the worst of the flu hit her while she still had good blood counts so she was able to fight some of it. The fevers just hit when her counts started to drop. And boy did they drop. Her ANC which is the count of her blood cells that immune fighters was at .03 yesterday, 1.5 - 11 is the normal range and anything below .5 is considered severely immune compromised, so .03 is really low. Luckily things are starting to recover a little today and she hasn't had a fever since Thursday night. So we are hopeful that she will be home tomorrow.
I also wanted to pass along some information on an organization that is doing a Fundraiser for Avarie. They are called Summits For Kids. It is a group of rock climbers that rock climb different mountains and peeks to help raise money for different causes. They have taken on Avarie's cause for their upcoming climb in Arizona on March 9th. They are trying to raise money for her, and have asked that we pass along all of their information and website to anyone that may be interested in helping contribute. Their site is www.summitsforkids.org. Even if you are not able to help if you could pass along the information to others we would be truly grateful. It is so hard to ask for help and believe me I am the queen of not asking, but we find ourselves right now in a position that I don't know what else to do. So we are asking for your help, please check out this amazing group and pass along the info to any that you can. Thanks!

Fever oh Fever why doest though torment me!

We are preparing to take Avarie back in to the hospital today. It is an unplanned trip, but she spiked a fever and so we have to bring her in. I know we'll be staying because she has had a cough for several days and I'm sure the fever is probably related to that and since we just completed chemo last week and her counts are probably dropping right now they will want to monitor her. Her lungs sounded clear on Monday even though she had the cough, but a lot can change in two days. So we're packing the car and getting ready to go in. I just wanted to leave a little note about what was going on. Hopefully we won't have to stay very long.
I just wanted to let everyone know that Craig lost his job yesterday. They let him go because they said he has missed too many days. We've tried hard to not miss days, but with everything going on with Avarie there were just times that he couldn't be there. So we are unemployed at the moment. So if anyone knows of any jobs out there, we are looking. Its tough right now not only because of the economy and how many other people are looking for work, but we have the added downfall to our unpredictable schedule with Avarie right now. We are trying to get that all worked out, but we just never know what is going to happen from day to day with her. We have wonderful family that step in and try to help as much as they can. But if he has to be at work in the evenings or early mornings then it requires someone to come into our home and get kids in bed or get them up and off to school. That is hard for anyone, especially our siblings who all have children themselves and then Craig's mom is helping raise our great niece who is 4 and then my mom is available a lot, but she has some responsibilities to the Care Center that my parents own and my other siblings that also need babysitters and help sometimes. I come from a very large family with a lot of grandchildren. Its a tough spot. In order for Craig to work full time, it would require someone to actually move in with us and that is just not very feasible. I know that all sounds bleak, but somehow we will find something that will help us get through this next year and then thing should be better and maybe even by fall. I know a lot of people at the hospital who have lost their jobs due to their children's illness also. One family has lost 7 jobs in the last 6 months and they have had to move in with family to just get through this time. We've been blessed so far to not have to do that. But it might be getting close to that for us too. Now we just need to pick who will be the lucky family member that we impose on, kidding. I know you all would gladly and willing take us in if you could. I just wish we could start our Foushee or Giles Family compound idea. Several of us have joked for years about all moving onto some property together and having our family garden and livestock and schooling our children together. I think its time. Who's on Board, Anyone willing to take me up on it?

The Great Wall of China

Sawyer and Avarie love each other so much. Sometimes Sawyer tries to love her too much though and we have to pull him off of her.
Sometimes its hard to update this blog. I find myself not wanting to some days. The reason isn't because I don't want to let people know what is going on, its just that sometimes I can write and distance myself from what I am writing. Its more information I am writing, not a personal, painful thing that I am sharing with others. Then there are the days that I can not distance myself from the reality of our situation and I am feeling the reality of Cancer. I don't like to feel it. I try to live with a wall built around me, it allows me to function. It allows me to make medical decisions and to try to understand everything that is going on with my baby. Sometimes the wall slips down and I allow myself those moments to fully take in my baby's situation from a mommy's point of view. But I don't do it very often. I like my wall, it allows me to do everything and know everything that I need to and still be able to take care of my three other children, a home, and a husband. I need to take care of myself better I know, but there will be more time for that later on. So I allow my wall to stay up for now, it is a survival mechanism. When I read over past blogs I realize how much my wall comes across to everyone, but I hope you all know it is my defense mechanism that I need for now. I joke with people that I will go through counseling when this is all done, but the reality is that we are planning on going through family counseling when this is all done for all of us. We will have a lot of healing mentally to do when the physical healing is done.
This all sounds like we're really struggling right now, but the strange thing is we're not, we're actually doing really well right now. Of course that is because we are all just functioning and surviving, but we are surviving. I am amazed at how much we can get through and how this has changed our priorities. Craig and I use to watch the clock for 8pm to put the kids to bed and then it would be our time in the evening. That has changed recently. Now we are doing things with our kids, even if it is watching a movie with them, we are not so concerned with putting them to bed, we actually want to be with them and enjoy them. We still look forward to bed some nights, but a lot of nights we go to bed at the same time and we are grateful for the extra sleep. I have never been a go to sleep early person, but recently I am in bed by 10pm most nights. My usual bedtime is around midnight. I still wake up several times at night with Avarie, but at least I care more about getting a little more sleep more then I care about spending time alone with out the kids. I value my kids more then I ever have. The cute little things they say and do have a whole new meaning to me.

Week of Chemo

Sorry we haven't posted all week. We've been in the hospital for chemo this week. We just got home about an hour ago. It was a good stay. Chemo went well and we are very glad to be home. She is not due back for chemo until her counts return and they don't expect that for a couple of weeks, so if Avarie can stay healthy we will be home for a couple of weeks. I'm not holding my breath on that one, but its a nice dream. She already has a little cough, but her lungs were clear and there was no fever so we got to come home. Her counts are great right now so hopefully they will stay that way for several more days to help her get over this.
We had a great day at the hospital today. I want to share an experience we had there today that has made me grateful for our struggles. Its amazing to watch others and what they are going through, it helps you to not drown in your own problems. We attended a birthday party at the hospital today for a little boy turning 1. His name is Caiden. He is the cutest little thing in the world. Avarie loved being at the party and had a GREAT time. She played with Caiden's older sister Annah, she is also four and Avarie loved her. Caiden is a patient there he has very aggressive brain cancer. I hope his parents don't mind me sharing this, it was just such a great day for me to connect with another family at the hospital that is going through a hard time too. Caiden has had 25 surgeries to have tumors removed and was on his last dose of chemo this week and they just found a new tumor. It is so sad to see a sweet little helpless baby go through something so horrible and yet he was smiling and happy to see everyone at the party. Avarie and his sister Annah where blowing bubbles for him and he was so excited by the bubbles. It was great to step away from my problems for a day and feel for someone else. It was also great to connect with someone else there and start to have a support structure there at the hospital since we spend so much time there. So please all that are remembering Avarie in there prayers we are asking that you also remember Caiden. I know his family could use some prayers right now too.
We also got word from the transplant Dr at OHSU. Her comment about Avarie was "She is such a broken little girl". She does not want to do the transplant until closer to when Avarie is scheduled for the maintenance stage of chemo, which is June. So we will be spending our summer at OHSU. Until then we will continue with the chemo regimen that we are on. I am a little frustrated to think that we will continue to stay in the hospital as much as we are and then spend 4-6 weeks in the transplant and then 3 months of intensive follow up care which will require frequent hospitalizations. Hopefully if all goes well and there are no complications we will be able to resume a normal life around October or November. That makes me take a deep breath and roll my eyes to write it and think about it, but that is our best case scenario right now. It will take her almost a year to fully recover after the transplant and there are some things that will take longer like extreme exhaustion. In our research that seems to be a really long on going problem for most all transplant patients. If that's the worst that we'll take it.

Happy Valentines Day!

Mute the music so you can hear Avarie before you push play on the video's.




Just wanted to post a couple of fun videos taken yesterday and today. Avarie is doing so great and we just want everyone to see how well she is doing. By the way yes she is singing in the bathroom. Craig has his music equipment set up in our walk in closet(which makes me so happy) so we pushed Avarie into the bathroom so she could sing along with Dad. This was her version of Mary had a Little Lamb.

Don't read if bathroom talk bothers you!

The last couple of days have been pretty good. It is so nice to be home for a little while and actually feel like we all live here together again. We have been at the Dr or ER on Monday, Wednesday and Thursday, but at least we got to come home for part of the day on those days.
The Dr's office called today. They had taken a sample of Avarie's stool yesterday when we were there because she has been having a little diarrhea. They called because it came back positive for C-Dif(not sure how to spell it, bu that is how it is said). C-Dif is some type of bacteria that causes diarrhea. It is really common in the hospitals and is very contagious. They have called in an antibiotic for her. So far no one in the family is complaining about any diarrhea, except for me. I think I may have it too, so I called in and got a prescription. It would make sense if someone was going to get it that it would be me, since I do almost all the diaper changes. I always wash or sanitize my hands after, but c-dif is not killed by hand sanitizer, only hot water and soap. Hand sanitizer kills almost everything else, but c-dif is one of those few that it doesn't. Just my luck! So we have quarantined ourselves in the house, at least those of us with any symptoms. I won't let the kids play with their friends unless they let me see their poo first. I know that sounds so gross, but I don't want to take any chances with spreading it. My understanding is that it is only contagious if you are having diarrhea. So if that is not true and you know something more please let me know. I was only told how it was spread and that it was contagious, they didn't say anything about being contagious even if you are not having diarrhea. I have the kids washing or I should say scrubbing their hands A LOT! I may be overdoing it a little, but I don't want to take any chances.
So I'm sorry for the bathroom talk, but thats whats going on for us right now.

Guess where I am, its always changing but you've got a 50/50 chance of getting it right

I'm too tired to write too much here today, but I just wanted to leave a quick note. Avarie has run a low grade fever ever since Monday, but never got into the category where we had to call until yesterday(Wednesday). Yesterday late afternoon I felt her and she felt unusually warm, but when I took her temp under her arm it was only 100. I knew that couldn't be right because she felt way too warm to me so I took it in her mouth and it came up 102.3, definitely over the 101 mark that requires her to come in. So we called and were told to take her in through the ER. It was already 4:30 and there was no way we were going to be able to make it to the office in time. The ER was really busy, but they took Avarie right back because she had low counts on Monday and their were a lot of kids there with a lot of infections, mostly coughs that we could hear lots of. We ended up staying there until a little after 11 last night and then were sent home. We have an appointment this morning and they couldn't find anything wrong with her last night except that her counts were great now and her white blood cell count was actually on the too high side meaning she is definitely fighting something. So we got to come home sleep in our own bed and then we get to turn around and go back in this morning. She's mostly likely fighting what Sawyer and I have. Some kind of cold. Sawyer has a icky nose and I had a soar throat that turned into something in my lungs last night. I am hoping hers does not develop anything in her lungs though, so far Sawyer's breathing sounds great. Mine has come on so fast. Guess I'll be wearing a mask for a while.
We have had a good time home though. I am just hoping it lasts at least a few more days. I don't normally plans dinners because I never know where I am going to be or what groceries I have in my house, but since things were going well I planned a few dinners and went to the grocery store. I want to cook them, I want to feed my kids some healthy food. They get a lot of frozen foods and things that can be thrown together quickly or things that dad is capable of making like mac n cheese and quesadillas, not the healthiest varieties. Hopefully I can cook up the food I purchased, if not I am sure I can find someone to give some of it too because Craig wouldn't know what to do with it. He doesn't have a lot of experience in the kitchen, that's my own fault, I never trained him properly (LOL).