Cade is doing much better. His mucositis this go around remained much milder than the last time and they never ended up starting him on IV nutrition. We were not discharged to the RMH yesterday only because of the plan for the WBC harvest. Logistically it just made sense to streamline things better by keeping us inpatient and then just transferring us to the PICU for the harvest. This was fine by me and honestl, aside from additional nights on a hard futon, made life easier for me to. The other benefit to this is he got a longer break from oral meds as well as the growth factor injections. That was a big plus in my eyes. Monday we got the final dose of Vincristine to officially complete Round 2! Yay! And he’s done great. His WBC counts are on the upswing, so he naturally is beginning to feel better. Things looked great on his blood work from this morning for the specific markers they look at to gauge whether the harvest can happen yet or not. The bone marrow transplant doctors came to talk to me and said numbers look great and are exactly where they want them. Which means we are good to go for the harvest tomorrow.
He’s been eating food today, which is great. Half of a taco for lunch. Snacking throughout the day. Bites of things here and there. Wait for it….a hard boiled egg for dinner. Hahaa! And some fruit and other random things. But he’s eating! That’s what matters most. We have been active today going all over the hospital. We were almost on day 3 of no napping when he began getting snippy around 4:30 and I said that’s it, this is not happening. I turned everything off, pulled the shades, put his birds on (his little owl sound machine he loves) and layed down with him forcing him to take a nap. He cried and fought me for all of 2 minutes before he was completely on top of me and passed out.
He had his audiology test don’t today which they said looked fantastic. Always a relief to hear. He gets his hearing as well as his kidney functions tested at the end of every round because some of the drug are known to cause damage to these areas. So far so good! 🙏🏼 He will have his kidney function test done Thursday. Tomorrow we will be transferred first thing to the PICU to begin the harvest. He just finished getting platelets now and they’ll check blood work again early in the morning to make sure everything is where it needs to be. That way if he needs blood too, they can order it right away and get it going so that it does not delay getting over to the PICU to get things going. The harvest itself can take roughly 4-6 hours depending on the child and the machine. Whether they have to deal with things like line issues, blood clotting in the machine, the child moving around to much and needing to be more sedated, less sedated, etc. They want to make sure his blood levels are all adequate so that this process goes smoothly, which is why they will transfuse him based on specific parameters for this procedure. We will head over to the PICU around 7am and pray that all goes well and they’re able to collect enough baby white blood cells in this one shot. If they cannot, then the harvest has to take place over multiple days. If they can, then Dr Knipstein said that if everything else looks great and his numbers remain steady, then as soon as his kidney test is done, we should be able to discharge in the later part of Thursday. HOME home! We will get to be home together for the weekend again. I can’t wait! Then we will return Monday to begin round 3.
Please send all your prayers that this procedure goes as smoothly as possible. That they find a comfortable level of sedation for him that they can easily maintain, that there are no complications, that they get all they need in this one day, and that we will be “outta here” on Thursday 🙏🏼 ❤️
Our Warrior Journey 