As usual Kai kept everyone on their toes at yesterdays visit.
We left the house at 6 for an 8am Ophthalmology appointment. As you know Kai has had some different symptoms in the past few weeks that have been concerning us. While he has been more allert and awake this week he is still less stable when sitting and has increased nystagmus (Nystagmus is a vision condition in which the eyes make repetitive, uncontrolled movements, often resulting in reduced vision.) in both eyes. They told us in the beginning of all of this that if there was any change in his tumor it would likely first present with changes in his vision, so I was pretty anxious about this vision test.
Thankfully the test showed no change. His Ophthalmologist did not seem that concerned with the nystagmus and said it could be increased fatigue or muscle weakness due to the chemotherapy. I am not totally convinced, I still feel like something is up, but after talking to his NP we decided to continue with the plan for now and get his MRI in two weeks then re-evaluate.
Kai’s labs came back a little low today, especially since he did not get chemo last week. The numbers were just high enough to qualify for chemo, so we went ahead. This does mean is that his counts (immune system) will probably be even lower this week, putting him at risk for infection. We will not be going out much this week and ask not to have any visitors. Hopefully we can make it through these next two weeks ‘off’ chemo without any extra hospital visits!
In addition to his regular chemo this week Kai was scheduled to get his flue shot booster and a new antibiotic. This is a standard antibiotic to protect against a specific type of pneumonia. There are three different versions of this antibiotic and he has not done well on the other two, so we decided to give this last one a try. It is an IV infusion once a month generally withe few side effects. The only realy risk is that some people can have an allergic reaction during the infusion. Of course Kai had this reaction!
He began to get really stuffy and then seemed like he wasn’t able to swallow. He couldn’t drink his bottle and was drooling a lot. Then his whole body turned red and he was very fidgety and upset. Thankfully once they got some benadryl in him he was fine and we were able to go home. We skipped the flue shot for this week.
It was a LONG day! Many of the people in our infusion room were in for a long day as well. One little girl needed a blood transfusion and another boy was starting a new protocol. It turns out that boy also has an optic glioma. He was diagnosed at 5. He had a lot of tumor shrinkage from his first round of chemo (the carboplatin/vincristine, which is what Kai is on) which left him stable for three years. Recently he noticed more vision loss and sure enough the tumor was growing again. Even-though his tumor is pretty small at this point, much much smaller than Kai’s, he has extensive vision loss and just started using a walking cane. His mom told me he is pretty much completely blind but is adapting well. They will be back in the clinic in two weeks when we are there for Kai’s MRI so it will be nice to see them again.
Kai was also fitted for safety glasses today…we’ll see how that goes…
We also had a visit with Wally and some of the Red Sox players! There was a lot going on at the clinic which helped pass the time. One more reason we are so thankful to be at the Jimmy Fund!