Enjoying Summer

It’s been a little over a week since starting Kai’s new protocol and so far he is handling it very well.
He has not needed any anti nausea or pain meds! He is a bit tired, but other than that he is doing well. I am also handling it better than expected! We do meds. Once in the morning
and once at night. I wear gloves and a mask and dispose of everything safely, but it is really not as time consuming and complicated as I had anticipated.
Unfortunately, the positive effects of the steroids we were enjoying seem to be fading fast. He is starting to drop his head again, he still can not feed himself or handle much more than purée by mouth. He is still very tense in his legs and is still has periods where he tremors a lot. This means we are using the feeding tube and his wheelchair a lot more, but we are getting used to that too.
This was the first week in over three months that we didn’t have to drive into Boston! We have been averaging three trips a week all summer so it was nice to have a little break and just enjoy the summer.
We have also been enjoying having Nana back at home! She has made a miraculous recovery and continues to get stronger everyday. We are so thankful she is right down the street and we can visit often. She just loves seeing Kai and he loves seeing her!

Medication Station
If we have to do chemo at home it can at least look cute!

One thought on “Enjoying Summer

  1. That’s incredible that he hasn’t needed any meds to help tolerate the chemo! I think of you guys often. I’m so glad this protocol seems to be well tolerated for your cute little boy.

    Shari Butler

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