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).

Sent Back Home!

We went in for a lumbar puncture and chemo today. It was suppose to be a 5+day stay, but when they did labs Avarie didn't make counts so we couldn't do chemo or anything. She actually ended up needing a platelet transfusion and a red blood cell transfusion so we spent the day there getting transfusion. We will start chemo again next Monday. It will take that long for her numbers to return to be safe to do chemo again. So until then we wait and hope for no fevers. She already had one today, but they just gave her an antibiotic to cover her for almost everything and sent us home to see what happens. Hopefully we will actually get to stay home for a week. We haven't had that happen since mid-October. Its crazy how long ago that seems. So for now we're hanging out trying to make it until next Monday.

Beautiful Days and Unexplained Pains

The weather was beautiful yesterday and Avarie was feeling great. She went for a long walk with the neighbor girl, Nichole. She watched a bunny rabbit get a bath and stayed up late laughing with mommy. It was really a great day. We woke up today, Sunday to another great day. The weather wasn't as nice but things were going well. Today is Addisen's actual birthday and we had a party planned with the Giles side of the family here at the house. Just a little get together. Avarie started complaining a little about pain on her right side early this morning, but the pain started to get so bad I had to get Morphine out and give her some. She is already getting so much pain medicine I hate giving her more, but she was hurting so much. It seemed to help a little. We called the Dr because Avarie's liver enzymes and bilirubin levels have been up recently with out any explanation and so when she began complaining about pain in the same spot that her liver is I was worried. The Dr wanted to give her a little longer and see how she did. The pain got better for a little while, but kept kind of creeping back in. When everyone got here for the party we had my father in law and brother in law help give her a blessing. The pain got so bad that I started packing my bags because I was sure that we were headed back in to the hospital. She eventually calmed down and we went ahead and had a little party for Addisen, but I kept the bags packed just in case. She has since fallen asleep and has not been complaining of the pain in the last couple of hours, but I am not sure what to expect tonight, so I have my bags at the top of the stairs just in case. We are headed back in tomorrow morning anyway, I am just hoping it doesn't have to end up an emergency early admittance.
The picture of Sawyer was from yesterday, but Avarie loves it so much I included it in here. It makes her laugh to look at it, she loves that baby so much. He loves her too, he is just so naughty to her sometimes. He wants to love her and lay on her all the time, but he also wants to take anything she is holding and she can't defend herself or he wants to literally lay on her which hurts her. He's at that age where the more you tell him no the more he does it. It's a good thing he is so stinky cute and that Avarie loves him enough to forgive him. It doesn't matter what he does to her, he is still the first one she wants to see when she comes home or when they come to visit.

Long Post-Sorry! Just too much Info that needs to be said

I wanted to start this post with a thank you to my Family. It is Addisen's 9th birthday this weekend and with everything going on it is just so hard to plan anything. I just didn't know where we would be 2 weeks ago when invitations needed to be sent, so my sister Andrea took over the planning for me. She planned the date and time and had it at her house. She helped Addisen fill out the invitations for her friends and let everyone trash her house tonight. My other sister Michelle planned the games and brought the streamers and balloons and my mom ordered and bought the cake for us. I am so grateful to all of them, it went great and Addisen had a great time. The reason they are covering their mouths in the picture is because they were afraid they would accidentally blow out the candles. Silly I know, but it was pretty cute. Addisen decorated the cake herself, I think her cousin Payten and friend Emily helped a little, but no one else was speaking up to take credit for the creation. They used Addisen's Littlest Pet Shop Collection.
Avarie is still in the hospital but she is finally keeping food down. They put her on TPN to give her nutrition through her veins. Since she couldn't keep anything down through her stomach we had to get some food into her. She had lost around 6 pounds in a little over a week. That is way too much. She went from weighing 18kg which is about 40 pounds to weighing only 16.5kg which is about 34 pounds. Not a good thing. I'm not sure what her weight is today, but she kept a little bit of food down yesterday and today seems to be eating even better. Craig is with her right now, I came home yesterday.
We have had problems with her "Buddy" lately. It has been getting sluggish and hard to push things through it. But then during the night last night it became impossible to push anything through. They have tried and retried several times to reaccess it but all attempts have been unsuccessful. For anyone newly following our blog I will explain her Buddy. Her buddy is a little device that they placed under her skin when she was first diagnosed. It is attached directly to one of her veins so that we can have instant access to her veins with out always having to find a vein and repoke her. We also administer her chemo through her buddy. We use the buddy a lot. It is a vital thing in her treatment, so we have to have it. Tomorrow they are going to try to inject some dye into it and see what is going on in there. It is very possible that they will have to go in and surgically remove the buddy and then put in a new one. She was so soar when she got this one, I just can't imagine putting her through one more surgery, but we have to have it. Especially now that the decision has been made that we are definitely going to transplant.
We finally got word back from the Dr's on her chances of staying in remission. They aren't good. Her chances are only 46%. We had heard possibly 40 from the Dr at OHSU, but I didn't want to believe it. Our Oncologists wanted to make sure that we were getting the most accurate information on that percentage, so they contacted the Dr that is in charge of the Extremely High Risk Study that Avarie is in. My understanding is that his research is partly responsible for the protocol of drugs that Avarie is receiving. He is based some where in Eastern Canada. According to him for kids that did not respond to Induction (which is the first round of chemo given to all leukemia patients) their success rate is 46%. So Avarie has a greater chance of relapsing then she does of staying in remission. If Avarie relapses her chances then go down to only 20% with out a transplant. If we can do the transplant before she relapses her chances go up to 60%, but if she relapses and then does the transplant her chances are only 40% with the transplant. We can't take the risk of her relapsing, those numbers are horrible. So we have to the transplant before June. June is when we would hit the maintenance stage of chemo therapy and that is when she would most likely relapse. We have 90 possible donors off the donor registry from around the world. The Dr's are looking for the best candidate for Avarie, they are very happy to have so many to choose from, but her chances would have been better if it was a sibling donor, there are a lot more risks with an unrelated donor, but those are risks we are just going to have to take. We are exploring both OHSU for the transplant and Seattle Childrens Hospital. Seattle is one of the main transplant hospitals from around the world, so we definitely want to consider them. Its just hard because they are so far away and it would mean having to move our family up there for 4-6 months with out any other support structure. She is only in the hospital for the transplant for 4-6 weeks but we have to stay close to the hospital for the first 100 days, more if there are any complications and the possible list is long and scary. But I did find out that the transplant Dr at OHSU is from Seattle. She was a transplant Dr there and has moved down to Portland to head their transplant team. That makes us feel a lot better about OHSU. We are definitely going to look into both facilities though and try to make a decision. Our Dr's are very supportive of us doing that, they do most of their referrals to OHSU, but they are very well acquainted with Seattle. They all agree that Seattle is one of the top transplant hospitals, but they feel really confident in OHSU's transplant program also. This is such a hard decision. We are hoping to talk with families who have gone through transplant at both places, I am interested in how their experiences went. So if anyone reading this knows anyone please let me know.
We are hopeful that Avarie will be home tomorrow, but she will have to go back on Monday either for Chemo or to have a new port put in and then receive chemo too. They think they can do this chemo as outpatient, it requires us to go in everyday for 5 days and spend several hours there, but at least we can come and sleep at home. We're just not sure how it is all going to work out yet. It seems like we are never sure about anything these days. I never know where I'm going to be tomorrow or next week. It gets tiring and frustrating, but oh well thats life for now.

I just want to leave with a cute story about Avarie. She met her Chemo Pal, Tasha, for the first time on Thursday. Chemo Pal is a program through the Children's Cancer Association. They match an adult with a child going through chemo. The Pal comes in with toys and just plays with the child and tries to establish a friendship. They are a safe and fun person for the child to look forward to when at the Dr's or at the hospital. They volunteer their time for about 6-8 hours a month. They bring anything that Avarie likes. They pack a bag with all of her favorite toys. She just has to put the toys back in the bag when the Chemo Pal leaves so that the toys don't get lost. No other child will ever play with that toy, it is Avarie's bag of toys for just her. Tasha, Avarie's Chemo Pal, brought several things for Avarie to see. The first thing she pulled out was some dress up jewelry. Avarie was immediately excited and wanted it all on. Tasha helped her put it all on and we took a picture of the two of them, she wouldn't smile for my camera, but she did smile for the Chemo Pal's camera. Tasha stayed for a little while just talking with us, along with the head supervisor for the program. She came just to make sure the first meeting went well. When it was time for Tasha to go we asked Avarie to put back the jewelery. Anyone that knows Avarie can probably guess her response to that. She refused. She wanted to keep it, all of it. She finally agreed to give back some of it, but refused to let go of the rings, she wanted to keep them. She balled them up in her little hands and tried to hide her hands behind her head. She was protesting so much that they were going to let her keep just one ring, but when we looked over at her she was starting to fall asleep. She was just sitting in the hospital chair with her hands balled next to her head still grunting in protest, but her eyes were rolling back in her head. We all started to laugh a little, and then before I knew it she was completely asleep. She just fell asleep with her arms up, sitting in that chair. It was so funny we took pictures of her. It made it easy to get the rings out of her hands like that. I should explain that she was so tired because she had just had one of the best physical therapy days ever. She even rode a tricycle. We had to help keep her momentum going, but she rode the bike. All in all that was a great day.

A trip to the doctors = a stay in the hospital.

This is Avarie's daddy writing this update as the computer at the hospital wont allways let us on the site so I apollagize in advance for not being my wife as she is the supreme updater. From my groggy eyes this morning I saw Jenell preparing some items incase her visit at the doctors was more than that. She is an amazing woman to do all she does.Avarie wasnt able to keep anything down since last tuesday she also looked like she was loosing weight. So she and Avarie were off to the doctors office and it was me and Sawyer at home I was still getting over a case of somthing that had me so sick I cant remember ever being that sick for so long. Sawyer and I just hung out and looked at books etc... My mom said she would come over once we heard Avarie needed to be admited as I had to work that afternoon.Avarie is back on the TPN trying to get her nutrition under control. My mom arrived and I was off to work. I got to work and when I was helping a resident into her chair my back gave out on me and we went to the floor. Luckily she was alright. I feel so bad for scaring her and am very anxious about my back. I am going to be scheduling an MRI here shortly. I have to call every morning first thing at 8:00am to see if my doctor has had a cancellation. Her next available appointment isnt until febuary the 18th and I have to be seen by her because this is a previos injury. I need to give work some kind of timeline and restricitions. I thsnk you all for your thoughts and prayers please take care.

Home-DR's-Home-FLU?????

Sorry a lot has happened in the last two days and I haven't had a chance to update it. Avarie ended up coming home last night, sunday night. It was very unexpected, but she was able to pass all of the chemo out of her system faster then she ever has in the past. She's only had this particular chemo two other times, but both those times took her 5-6 days to pass it and she did it in 2 days this time. She has still not been keeping food down and so I was worried about her coming home, but I wasn't there and so I was just going off of what every one else was telling me. She came home right after THE STEELERS WON! It was a good night for all of us. At least until shortly after bedtime when she started throwing up again and then has continued throwing up all day today. I was concerned because I couldn't keep her meds down and she needs them and I didn't want a repeat of the potassium level stuff. So I called the Dr and yes they said bring her in right now. Of course that was at 3:30 this afternoon and I didn't have anything packed in case we had to stay or babysitters lined up and I knew we would be in rush hour traffic and they wanted us there before 5. It became a mad dash and everything just fell into place and I didn't have to put on my brakes once the whole way down I-5. That is a miracle and we made it there by 4:30. Oh quick note, the reason I had to find people to watch the kids wasn't because Craig was at work, he was actually really sick either with food poisoning or the flu. I am hoping poisoning because I do not need the flu going through our house right now. He was so sick that he burst the blood vessles around his eyes. It looks like he has two black eyes. It was horrible to listen to. He is finally sleeping, it just let up around noon.
Anyway we got to the Dr and we were all sure that we where probably going to stay at least one night, but we did labs and everything came back ok, except that she was dehydrated, so they gave her a really good drink through her Buddy and then we decided to start giving her larger doses of Adavan to try to help ease her stomach. So far so good, she has not thrown up and she drank a fair amount of water at the Dr's office. I feel like I should go knock on wood for saying that, but I am at least hopeful that this will help a little more. It will also make her a little more sleepy, but "hehe" I won't complain about that.
So for now we are home and the Dr's have decided to move her Thursday chemo back to Monday to try to give her a little more of a break. She has not had many breaks through all of this and they really want her to have some time home and try to recooperate a little.
So for now I am asking for prayers that whatever Craig has will not infect the rest of us, because if it is a bug I know I'm next. We shared some ice cream last night and by shared I mean he ate most of it and then gave me the left over few bites and I ate off his spoon.