Eight down, two to go. Tonight will be Allistaire’s 9th night of chemo out of 10. So far she has done remarkably well. She hasn’t thrown up but has had a bit of diarrhea. Our biggest challenge has been having enough clothes and jammies on standby to cope with the nonstop fluid output (peeing). Apparently, as cells in her body are dying because of the chemo, they release their innards into her blood. In order to flush out this cellular death debris, they keep her pumping with fluids. By the way, PLEASE, do not take this as a stealth request for clothes/jammies. It was lovely yesterday to have the excuse to go buy Allistaire some fun new duds – we’re covered, and then some. She continues to be free from her IV pole during the day after her 10 am chemo. She makes good use of this time, can you guess, yep-nonstop bike riding. She can’t get enough. Someone must have put batteries in the Arielmobile bike because wow does it have an impressive array of sound effects from beeps, tropical rock out songs and my fave: peel-out sounds! The best part is that as Allistaire is driving around, she has to periodically stop, push some sound effect buttons and do a booty wiggle dance and hand claps. It’s pretty great – pretty loud and obnoxious but who can say no? On Wednesday afternoon, Solveig and grandma JoMarie came by for a visit and the two girls had fun playing on the bikes together. Solveig sweetly pushed Allistaire around on the bike she loves but is not yet tall enough to peddle.
Operation Strapdown & Distract is how we’ve had a bit more success in getting Allistaire to eat. We were just having Allistaire sit in her crib with a towel draped over her lap and tucked into her shirt and her plate sitting between her legs to eat. As you can imagine, Allistaire usually decided that even 5 minutes was more time than she wanted to take eating. Several days ago I decided to bust out her little eating chair and strap her in. Then I turned on a video. Okay normally, I really cringe at letting the girls watch almost anything on the TV. I think it’s the utterly zoned-out, zombie flat-eye look that freaks me out. Yet-extraordinary times call for extraordinary measures-you know-the surge in Iraq-letting your kid watch Veggie Tales-again. Thankfully she’s been eating a bit more with this regime. She’ll sit there for over an hour and slowly pop things in her mouth. Her favorite at the moment is thick little rectangles of cheddar cheese the nurses get for us. Sometimes this is nearly all she eats. Forgive this culturally inappropriate remark but my grandma used to tell me that the Indian word for cheese, was “chokembutt.” All this cheese concerns me but I guess that’s what Miralax is for. We’re just thankful for whatever calories she gets.
Yesterday we got back results from what I think are the last base-line tests she will have. These final tests were the last cytogenetic tests they needed to complete. The only chromosomal change of significance that she tested positive for was the MLL (Multilineage Leukemia) Gene which is the 11q23 Translocation I mentioned earlier. This is a common chromosomal change found in both ALL and AML. She was not positive for any remaining scary/concerning chromosomal changes. On the other hand, she was also not positive for any of the chromosomal changes that actually respond better to chemotherapy. Interestingly, kids with Down Syndrome who get AML actually have a much higher success rate because of the combined effect of the Down Syndrome gene changes and the AML gene changes. We are thankful to be done with the initial diagnosis and onto seeing how she does with her treatment. Around now we can start to expect to see the effects of the chemo on Allistaire’s body. She is now likely to begin having mouth and/or throat sores and in the next week I’m guessing she’ll start losing her hair. At the beginning of next week the doctors will resume daily CBCs (Complete Blood Count) as we expect to see all of her blood counts trending down toward zero. As I mentioned before, she will be supported with red blood cells and platelets during this time.
Here are the prayer requests for now:
- Pray for Solveig, Sten’s mom JoMaire, and Sten’s brother Peder, as they drive to Montana tomorrow. Pray for safety and for Solveig’s little heart which get’s so sad having to leave us.
- Pray that Allistaire will take in enough calories and nutrients.
- Pray for my mom and dad who will be with Allstaire all day tomorrow so Sten and I can have a day together. Also, my dad will be staying the night with her on Christmas Eve. This is the first night we’ll be without her. Pray for rest for my dad and that he’ll have a good night with her.
- Pray that God will give us wisdom and discernment to know if Allistaire is in pain or nauseous. They have plenty of medication to help with this but it’s the knowing if she needs it that can be tricky.
- Let’s praise God that there are no additional known aspects of her disease which make it harder to treat!
- Also, I checked in with Deb and she told me they got the news back that the biopsy was not cancerous! They are so excited to have a wonderful Christmas without that concern. I give thanks to the Lord for their good news and the special open door to show Deb love and support.