So far Kai’s new at home protocol has had us at the clinic even more than the last protocol. We still go in every other week to get the Avastin infusion and it just so happens that one of his at home drugs cycles every three weeks. That third week we have to go to the clinic for labs and pick up the new med from the Dana Farber pharmacy.
Last week was Avastin, this week we went in for the we med switch and next week we will be back for Avastin again. 3 out of every 4 weeks back at the clinic. So much for doing this at home!
Since we were just doing labs and picking up the new med this week I was expecting a short day, of course I should have learned by now that anytime we go into the clinic the only thing we should expect is to be there all day! And so we were.
The good news: Kai’s count were great. Actually better than last week. I’m not sure how but they are. We also got to visit with a few friends, which always helps the day go by.
Ever since going to camp, we have run into someone we met there almost every week. It’s a small little solace, but it can really make a big difference in the day. Of course I would never wish this situation on any friend, but now that we are here it’s nice to have some familiar faces around, knowing they are dealing with many of the same things.
The not so good: It ended up being a pretty ruff day at the clinic for Kai. Since we were already there and accessed we decided to do his monthly antibiotic treatment. We could have waited until next week when he will be in for his Avastin again but the antibiotic adds an hour and a half to an already long day, so I figured it would be best to get it out of the way this week.
After meeting with the other NP we went back to start his antibiotics. He has had a mild allergic reaction to this drug in the past so he always gets premeditated with Benadryl and today was no different. Unfortunately half way through the infusion Kai began getting restless and then vomited all over the place. I was down at the pharmacy picking up his new meds and my mom was with him when it happened. When I got back to his bed we must have had 6 nurses all standing around him, cleaning him up, checking his vital signs etc. he was pretty miserable and they were concerned he may have aspirated. They gave him some zofran to prevent any more vomiting and after about a half hour he was back resting peacefully and we finnished th antibiotic infusion.
Our short visit to the clinic turned into a regular 6 hour day.
While we saw many familiar faces in the waiting room this week, our NP and Kai’s regular infusion nurse were both our on vacation. Of course there are many many excellent practitioners at the Jimmy Fund, but these woman know Kai best and on a bad day that can make all the difference. So we really missed them today when Kai was not feeling well. I will defiantly be telling them they are NOT allowed to go on vacation at the same time anymore! 🙂
Kai always likes to keep everyone on their toes!
Before all of this I discussed with the NP how Kai has not been doing great the past week. She was pretty confident it is the Etoposide he has been taking as part of the new protocol. The protocol dictates that we do etoposide for 3 weeks and then switch to cyclophosphamide for three weeks. Thankfully we are done with the etoposide for now. She told us the cyclophosphamide tends to be a little easier to tolerate. Let’s hope he is feeling better soon.
I again want to say a big Thank You to all who have donated in support of Kai for this years Jimmy Fund Walk. Kai’s Fight Club has contributed $600 to Team H.E.A.L.S which will go directly to pediatric brain tumor research at Dana Farber! Thank You!!