I went into chemo last week feeling pretty uneasy. Kai’s head control and muscle tone has continued to worsen. Because of all our concern we decided to meet with physical therapy at children’s again to see if there is anything else we can be doing to help him get stronger. She saw him a few months ago and in comparing the two visits it is clear his function is decreasing. While she agreed the more we do with Kai the better, she does not feel this is a problem from a lack of therapy.
We also saw opthamology week. He tested pretty much the same as last time. Of course this is great news but it leaves me very confused as to why Kai is having these fluctuations in his tone. As much as I hate to say this, if we saw tumor growth at least I would have some explanation. Some proof that all the things I see and worry about are in fact happening. It’s hard going in week after week trying to convince everyone how much worse he is doing, when all we all want is for him to be doing better. It’s the last thing i want to admit, but at this point I also feel this is an unacceptable way for Kai to be living his life, and I feel like it is only getting worse.
He is a tricky one and he does have his moments where he seems ok. They are few and far between and don’t usually last that long, but it does give this false sense that he is doing ok when really things just keep getting worse.
In many ways we all agree Kai is doing better on this new chemo. He is not in as much pain. His troubles swallowing and breathing have improved, but he also continues to weaken and is not progressing at all. So I went to the clinic armed with video. I showed them a video of Kai in his high chair a few months ago and then another video of him in his high chair that morning. The difference was undeniable and everyone was pretty upset by it.
Since no one seems to know why these symptoms keep worsening and his MRI’s keep showing no tumor growth, Mark and I were thinking maybe he should have a break from chemo to see if he can recover some of his function.
After showing the video I proposed the idea, feeling pretty sure they would NOT go for it…
but they did.
We were visited by several of his doctors that day and they all agreed he is not doing well.
So the plan is, ANOTHER MRI, this time brain and spine, to asses and be sure we are not missing anything.
If the MRI comes back ‘stable’ again we will seriously consider stopping chemo.
If we do go this route the plan will be to stop chemo for three months then do another MRI. During that time we will continue to monitor his vision closely and continue on his home therapies. The hope is, is that the chemo is causing these symptoms and with a break he will start to feel better. If we get enough time off he may even be able to recover some function and make some gains. This would all be great, but no one is too convinced that these worsening symptoms are even due to chemo. Or that we will have enough time off chemo to make much of a difference.

The other possible outcome is that the tumor is in-fact growing despite the ‘stable’ MRI. This is a more likely outcome. We have not yet talked much about what we will do if that is the findings.

So today is MRI.

We spent the week on the Cape with family and Kai and I drove into the city early this morning. If he is doing well after MRI we will head back down to the cape for another few days.
We will not know the results of the MRI for a few days at least. We will discuss it fully at our appointment next week.