I'm not sure where to begin with this blog. Most all who will read this already know our story, but I wanted to take a few minutes to let people know how we were doing and give you all the run down of how we got to this point.
Everyone has followed us during Avarie's previous problems and diagnosis of Juvenile Rheumatoid Arthritis. We know now that it was never JRA. We think that it was masked because her body just had begun to get sick when she received the ankle injections. The steroid she received during those injections masked her cancer. Steroids are a huge part of the chemotherapy drugs she will begin receiving. Cancer does not like steroids, so that is why it masked her discomfort and left her with out pain for so long. Meanwhile though the cancer continued to grow with in her.
Then this last thursday night we pu
t her to bed, no problems, she was completely happy and fine. She fell asleep around 9 and then at 11:30 she had crawled to our bedroom door screaming in pain. We were up most of the night and only slept the couple of times she was able to cry herself to sleep. It was a horrible night. The next day continued to be the same, except she had also completely stopped eating. I was fine most of the day with her not eating I could see how much pain she was in and understood if I was in that much pain I would not want to eat also. But I had been able to get the Dr's to call in some Tylenol with Codine for her and there was no way she could take it if she didn't eat something first. I could not get her to eat anything. My mom even stopped by and brought her sour patch kids, which she loves and we could only get her to eat one. Around 3 the Rheumatologist Assistant had mentioned that perhaps we might want her looked at to just make sure we weren't missing something before we started drugging her and then masked something else, perhaps this wasn't a JRA insident, maybe she suggested there could be something else going on, since it was in her abdomin that she was complaining so much about. I really thought it was just the JRA pain, because this pain level was about the same as before when she had that flare up, but in retrospect this one was a little worse. So I took the kids to my sisters house and took Avarie, to Legacy Salmon Creek Hospital. Once the Dr. came in she was very concerned about her pain level and discovered her large spleen right away. But Avarie also was having A LOT of pain on her right side so they were also very concerned about an appendisitis. She proceeded to have blood work and an ultrasound. Andrea told the ultrasound story for me, except the part where the ultrasound tech after
wards said to me "that was a nice little song, I don't know what a temple is, but the song was cute". (missionary moment)
The ultrasound revealed her spleen was twice the size it should be, and her liver was slightly enlarged(didn't find out that part until yesterday). But they couldn't get her appendix, so she then had a CT scan. That revealed her appendix was fine, but the dr was very concerned about why she was having so much pain. Her blood levels came back fine, except for her CRP levels(elevation levels) 0-10 is normal and she was 81. So they admitted her and had her transfered by ambulence to Legacy Emanuel in Portland. There her pain increased and we continued to meet with many different Dr's all very perplexed by her case. They all came in saying they were very interested in her case and were all scratching their heads, I just kept thinking I wish we could call Dr. House.
So then on Sunday the Hemotologist came in and met with us, she explained what she wanted to do. She wanted to do a bone marrow biopsy and check for leukemia. At that moment I knew. It was the first time any of the Dr.s had mentioned cancer, but I knew and
when the rheumatologist came in later to check on her I told him that I thought we were on the right track with the hemotologist. He said he did also. He sat and explained why they were thinking it might be leukemia. He showed us her blood levels for the last5 weeks. All of her white blood cell counts were perfect, which has them perplexed, but so were her platelet and hemoglobin counts, which actually is part of the reason he explained that they were so perplexed. Her CRP levels(inflamation levels) had jumped saturday to 168 from 81 that is tremendous inflamation in the body and her blood levels should reflect that. They explained that her platelet count was way off for inflamation that great. Normal platelet count is 140 to 440. Avarie was around 180 to 200 always, with her inflamation so high she should have been in the 400's. Craig was having a hard time listening to the rheumatologist, I think we both knew then that it was leukemia. He had to excuse himself and left the room. He said he needed to get something to eat, but I know he needed to take it all in. With all the other Dr.'s running so many different tests it all just felt like well maybe, like they were testing for Lime's disease and some farm animal thing, we were just kind of scratching our head thinking well I guess maybe, but when they took this turn on Sunday it felt right.
The next morning she went in for her bone marrow biopsy. I stayed for the whole thing and watched most of it, I had to turn my head when I saw them pushing this huge thing into her hip. She told me afterwards that if it wasn't leukemia then it was definitely some kind of chronic disease because her bone was too soft to push through. She also commented on her paleness, which to be honest I just chalked up to being from a pasty white family, but when she placed her hand next to her back there was a very big difference. I lifted my shirt a little thinking I would show her that see I am white like that too, but I wasn't. I am definitely white-white, but I still have a yellow pink tint to my skin, I realized Avarie didn't, she was almost as white as a piece of paper. They told me they would send in her labs and I should have an answer by the next afternoon. They also take a small smear and look under a microscope there in the office. If it was completely obvious from that they would come and tell me, but its not always obvoius and not always completely reliable, so they would only tell me if they were sure.
About two hours later the Hemotologist, Dr. Olson came in to our room. She had on a bright pink jacket with poodles all over it and sat down and started making small talk with Avarie, but Avarie was not in the mood and did not want to talk. She was really really grumpy and started to fall asleep. Dr. Olson then looked at me and told me that it was Leukemia.
I don't remember how she said it, and I was ok with it at first, because I had expected it. But as she began to explain what they needed to do next and I started to understand what my baby was about to go through, I wasn't ok.
I am doing fine now. Really I am at peace with this. I am devestated to think what my baby is going to go through, but I am just so grateful to have a diagnosis and know that there is a cure. It is a 95% success rate and that is awesome. People die every year from the flu and chicken pox, so even those are not a 100% survival rate. I just have to remember that. She will survive this and she will be ok. It is going to be a long and hard road, but there will be an end, and at that end I will have a healthy, beautiful and incredibly strong daughter. She is already such a strong spirit. I know Heavenly Father blessed her with such a strong spirit so she could overcome and fight the things that she would have to endure in her young life.
Everyone wants to know what they can do to help, the best thing I can tell all of you is continue to remember her and our whole family in your prayers. I worry about my other children and how they are going to get through all of this. It is going to take a lot of attention away from them and I am so sad to think of them feeling lonely or left out. There are social workers that work with the family through this process to try to help with that, and the Dr's made a huge point to me to let me know that the whole family is needed and used during this process. They will include our children in her recovery and include them in all that they can to help them feel part of the process. I am so appreciative for that.
So today is a huge day for Avarie. She is getting ready for surgery at 1:00 today and will begin her chemotherapy today also. Her surgery is a spinal tap to see if the cancer has progressed into the spinal fluid and to have a Port or "Buddy" put it. The Buddy allows them to access her veins directly with out having to always poke her. So she won't have to have "blood shots" as she calls them any more and some of her meds will be given to her through that also, it will be used a lot.
We are setting up a blog just for following Avarie's treatment and progress. I don't have the link yet, I'm working on it, but check back soon, we will have it up and going in the next day or so.
Oh yeah, incase any one didn't know, we did find out what kind of Leukemia she has it is A.L.L. In case anyone starts looking it up online, it is important to know what kind so that you see the right information. ALL is the most common form and the one with the best survival rate, we are happy that it is that and not one of the other forms.
We are so grateful for all of the love and help we have received during this time. Our families and neighbors have been awesome. We are so blessed to have so much love and help. I don't know how we would have gotten through this with out all of you.
So check back soon for updates. I am hoping to do most of our updating through the blog instead of the phone. Later when things calm down updating over the phone will be easier, but the blog would be easier for now.
