Alaina isn't home yet. They thought she'd be able to come home on Monday, July 4th...but her counts were still really low, so she is still in the hospital. Worse, her MRD test came back positive with cancer cells in the blood above the rate for being considered standard risk, so the doctor has now put her in the high risk bracket. My heart has broken into a million pieces. I have a hard time even looking at pictures of her from before all of this. I even cried in the hospital cafe when a little girl around Alaina's age was crying for her mommy to hold her. What I'd give to have that! I'll take any normal tantrum in a public place over her steroid fits in that hospital room any day.
My poor baby is going to be put through so much and it isn't fair. She's so sweet and innocent and little. High risk means more intensive chemo. Treatments that put us back int he hospital for 3-4 days just to get them. And then I worry about the long term effects on her body. How easy it is to let every negative thought bombard my brain. And all of those dark, ominous "whatifs".
I know I can't go down that path. I know I shouldn't. I know God has a plan. But I have to be honest. I'm a little peeved at God right now. I love Him. I know He wouldn't give me, us, anything we couldn't handle...(and I have to be honest again, I've heard that so many times I cringe now....because I'm feeling rather close to NOT being able to handle it more than being able to....) but why? Why Alaina? I know this is normal. A normal stage to get through the shock and pain of it all. It sucks. Really really really SUCKS.
High risk also means more social isolation. Yes, it's a blessing this happened during the summer....no school to worry about. And my amazing mother-in-law is off work (school nurse) and is helping beyond what Chad and I had ever imagined. But part of me is sad that my girls won't be able to enjoy a normal summer. They say it's important to try to stick to normalcy when Alaina returns (and I'm having a hard time seeing beyond her always being at the hospital right now...) but it's going to be SO hard. The doctor mentioned how we have to be more careful during this next phase because her counts will be even lower. Our normal life consisted of sunshine, playing with other kids, going to public places....not being couped up at home. Not that I won't be able to handle it, but still. I want it to be better for them. It kills me how much control I've lost of my life. I can't even plan beyond the day I'm in.
We're so blessed to have so many people praying. I ask that you continue to pray. Especially pray hard for July 22. It's Averie's birthday, but it's also the day Alaina goes in for her bone marrow test again (and spinal tap). Her results HAVE to be .01% of cancer cells in her marrow or they will put her into the VERY high risk category....and I can't even begin to go down that tunnel of thinking. I'm already struggling with the "whatifs" now....I think all the strength people keep saying I have will ultimately be crushed if that happens.
Please. Please pray for my baby girl. Pray for her body to fight the cancer cells, the chromosomes 4 and 17 that mutated into triple chromatids instead of double. Pray that the chemo and steroids kill all of the bad cells. Pray that Chad and I find the right path for her,m whether it's to continue with Cook Children's or possibly begin another avenue with another Oncology group that has different ways to treat this. For strength....and patience....and sanity....and for my other two wonderful children, that they remain a focus in our lives as well. My amazing big girl Averie, who has got to be the best big sister ever and stays so strong for me when she knows I'm down. And for sweet little Anderson, who never received a proper, normal welcoming home by our family and instead was swept into all of this chaos. And for me, that I can maintain this strength for my children and husband. God give me strength. God give us all strength.