Clinic conversation

Yesterday while Kai was at the respite center I did not unpack our camp bags or do laundry or grocery shopping, i didnt spend extra time with the dog, or even take a minuet to relax myself,
instead I spent my time researching clinical trials. I printed out studies, I read message boards and peoples blogs searching for that magic pill.

I found myself trying to convince Mark that Kai was worse off now, off treatment. And while I do believe he is, rationally I know it has much more to do with the time that has passed and less to do with him being off treatment. Somewhere along the way I convinced myself that death Off treatment would be easier, less painful, less drawn out. now I’m not so sure that’s true.

I know that Kai’s tumor has had him on a steady decline this whole time. We ALL know this by now. But there I was wasting the free hours I had to be productive, chasing something I don’t even believe exists. Hoping not to save him, but to somehow ease the suffering. Thinking maybe if he was on treatment he would be in less pain… I know this just doesn’t make sense, since the chemo itself causes other pain, but again I am looking for the magic pill…that I’m sure doesn’t exist.

Today we went into clinic and I layed it all out.
I told them I how confused I am. How much harder it is to do nothing than I thought it would be. How I never thought he would go on like this for weeks and weeks, and be fairly stable. He has plateaued and I don’t know if I can just sit hear waiting.
They were very good about listening to all my crazy. There was a lot of back and forth and in the end, although NOTHING has changed I do feel a bit relieved.

We decided To add in clonidine into Kais daily med schedule to help with some of the pain and his spastic tight tone. His pain does seem to have increased over the past week and I am happy to try somthing that may relieve the tightness he has been experiencing.
I asked them to look into a clinical trial that I may be interested in for Kai. We will need to submit some blood work to see if he even qualifies, and then if he does I will have to seriously weigh the risks vs. benefit. And while I am pretty sure we will not be going back on treatment I feel better at least knowing what our options may be if I change my mind. I feel better knowing the team is open to it. I feel better having said it out loud, that this is something I have been thinking about.

When we first took him off the chemo everything seemed so final. In one way that was a relief at the time. I was relieved that he didn’t have to fight and suffer anymore. I was relieved to not have to make anymore impossible decisions. I was relieved that i didn’t hopelessly push him to the end like i had feared might happen. I felt secure in the decision, for a minute. But the reality is he is still fighting and he is still suffering, only now it is just from tumor growth instead of tumor and chemo. And now seeing this side of things, I’m not sure which is worse.

So I still don’t know what will come or what we should or shouldn’t try but I guess for now exploring our options is doing something. And doig something is better than doing nothing. At least today.
In the end it was a good conversation and I do feel somewhat at ease with where we are at right now. His NP is also compiling a list of possible treatment options with low toxicity for us to consider, if we choose to.

4 thoughts on “Clinic conversation

  1. You have been the biggest advocate and the most caring and compassionate mother to your son, and will continue to be…I so respect your efforts to do the best thing for Kai, even if it is impossible to know exactly what that is…
    Love and hugs coming at you.

  2. You are such an incredible mother. I understand some of this struggle as we face questions with our son’s treatment, but your situation is unique and harrowing in its own right. I admire you in every way. You and Kai inspire our family too. Sending love, 100% love, always!

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