The first cycle, done

Today, March 25th is day “23” in our 28 days, the first cycle of chemo. It’s “28” days in a ‘perfect’ scenario where Kai’s "numbers”, his ANC, and hemoglobin are what we have been watching closely, rebound. It’s his bodi’s job to get that done. The drugs we gave him knocked out everything good in this body. He’s had two platelet transfusions as well as more blood to help. He has mostly tired days. So far, only one day that he seemed really uncomfortable, which is hard to watch. All his incision sites, which are still healing took a hit and now have to try to catch up.

As a mom of a growing boy, I also want him to have some good days so we can continue to progress in his milestones. So far, we have not had these days. His scheduled PT and OT appointments don’t go as planned because 1. he’s a baby. 2. he needs to nurse and sleep in some kind of routine (and that is practically impossible in the hospital environment) and 3. He hasn’t been ‘well’ enough to participate. This means I try to do it at home as much as I can.

I’ve been trained on administering medicine via his port (his line on his chest) that can be accessed anytime and he gets medicine, fluids, or gives blood through it. We give him oral medications morning and night that take lots of time because again, he’s a baby.

Starting at 5 months, Kai started eating all the food. All of it. He loved his food. I made him homemade purees and Cruz helped. Fast forward to now, he still does not have any interest in his foods. Our foods, he wants to eat, but no one has told him he has no teeth yet. That’s another thing, he has been “teething'“ for months. Poor dude. Nothing has broken through, but the pain is there.

Hang in there buddy!