Round 2
April 3rd, I’m writing from the hospital while Kai is napping. We got here last night and will be in-patient for the next few days (4-5). A few days past our “28” day goal to start again. Kai needed to get his hemoglobin levels up, so he got another transfusion on Monday. We were able to come home with no port access, which just means he was free as a bird. No lines sticking him, no lines to drag around, just Kai.
We had from Monday afternoon-Friday am to be home and to focus on feeling good and getting stronger. And that we did. It only took a day, but he was back in a great routine. He was eating purees that we made him and he was working on all his milestones. Rolling around and using his voice. Weight-bearing on his legs and balancing in all of his sitting positions. Basically, all of the things we do in PT and OT, just at home on his own floor.
And by “home” I mean, we finally landed in a place. It’s lovely to put down some roots and start to feel settled while we are here. Even if Kai and I are not there as often as I’d like, it’s great for the family. Cruz keeps asking if we are staying in this house “forever”, his new way of trying to understand what is really going on. The moving company brought half of our belongings, yes, half. We hope to get the rest in a couple of weeks. This means we are having to buy a bunch of stuff we already own, which is tough but that is fine. We are missing the most random things. Like we have our bed but not the crossbar that holds it up, so it’s on the floor. We have an umbrella for the outside, but not the stand. We got Cruz’s party bouncer but no “blower” to get the thing up (he was crushed).. You get the point…it’s chaos.
Back to Kai. He started losing his hair, so dad gave him a cut. He looks handsome. He loves to watch his brother run around the house and lights up when his dad or brother shows him love and attention. He’s seemingly healthy and happy. You really would never know what he is fighting.
So today we start day 1 of round/cycle 2. Remember, we do this 4 times. He will get methotrexate today and that will run for 24 hours. Then he will spend the next few days working to get it all out of his body. With this one, we deal with nausea, vomiting, mouth and GI tract sores, the list goes on and on. I’m mentally preparing for changing his diaper every hour for the next 72 hours, which will be necessary to give him a fighting chance at not having really bad skin issues. The nurses will help, of course, but I can’t leave that up to them. I have to play an active role, so I do.
We had a hearing test last week that showed some high-frequency damage. That is due to a drug called Cisplatin. He will get that one again this round and then we will access how badly it’s damaging his hearing and may have to switch drugs. This damage is not reversible. He will need hearing aids if it’s too bad.
We had an EEG to see if he needs to continue taking Keppra, an anti-seizer medication and we are waiting for the Neuro team to talk to us about that test.
We are also waiting on a genetic screen that will tell us some additional DNA information about his cancer. I’ll write more when I know more. It won’t change his treatment plan, just inform us of the “level/severity” of his case, his ATRT.
For now, that is it. Trying to be super strong. Cruz is missing us when we have to leave and that is really hard. He doesn’t understand why he can’t see his brother in the hospital. Thank you again COVID for making the impossible worse. Staying positive for Kai. Doing what I can to stay strong for him.
We miss all of our family and friends and hope everyone is doing wonderful. Kai wishes he could hug and love on you all. Hugs your loves tight. Everyday.