Having chemo every other week really feels like we have some time to live a little bit of a normal life.
…but since we still spent 4 days at children’s hospital in the past two weeks I don’t think our definition of normal life is very normal….
What makes the greatest difference is that Kai has not been as sick from this chemo!
No matter how many days we spend at doctors appointments, which is totally NOT a normal amount, he is still smiling every day. This is a huge improvement from a few months ago!
Last week we spent 3 days in a row Boston attending appointments. Kai had his regular, 6 week, ophthalmology appointment and his eyes seem to be stable. We were pretty concerned that his vision was continuing to worsen, and it likely will eventually, but for now he tested exactly the same. Hopefully this means the tumor is also staying stable, he has another MRI this week to find out.
He also had his first Electroencephalography (EEG), to check for seizure activity. The test was similar to the sleep study we did over the summer, only a lot shorter. They glue a bunch of electrodes to his head, try to get him to sleep for 20 minutes and monitor his brain waves.
He tolerated this test better than I expected (remember we ended up in the ER during the first sleep study!).
We were instructed to come to the test sleep deprived ( oh, you mean like every other day!) so he will be able to fall asleep for the test. Since we live an hour away and he ALWAYS sleeps in the car, I decided to get there a few hours early (because I love nothing more than spending my entire day CHB) and I walked him around outside trying to keep him awake. Thankfully it actually worked! Once they put the electrodes on, he snuggled up to mom, stuck his left hand down my shirt (as always) and fell asleep! He was not happy when they woke him up 20 mins. later and he was really not happy when they then stuck him in front of a flashing strobe light! He really reacted to those lights, crying and squirming all around trying to get away from it. Of course I had to hold him there and force him to look at the lights, which felt like a true torture tactic. Thankfully that was the end of the test and we were almost out of there, just as soon as they removed the electrodes…which ended up being the worst part of all.
(To learn more about what it is like to have an EEG check out this article: http://www.wonderbaby.org/articles/eeg)
I have not seen the written report yet but one of his doctors told me the test came back negative for seizure activity. They are still concerned and are now talking about doing a two day at home EEG test sometime in the next few months, which is exactly what I predicted would happen…. so off we go to the next appointment.
Wednesday he had his second dose of the new chemo and I am very happy to report that it went much better than the first time. After the reaction he had the first week his team decided to try a different does of pre-meds (anti-nausea: zofran, raglan, and benadryl) which was much better for him. He did vomit one time before leaving but that was it. We made it home without incident and he recovered in a few short days.
Now we are enjoying another week ‘off’, except for the three days of at home therapy and the one appointment in Boston on wednesday, ha!