I tried to be patient waiting to hear from Pittsburgh about the trial for Kai, but by Wednesday I was pretty restless. I started going a little nutty emailing our NP rambling emails about the different treatments and how Kai is doing and how I still don’t know what to do.
A few minutes after hitting send and thoroughly regretting every crazy sentence, Pittsburgh called. We did the initial screening which consisted of the basics, name, age, diagnosis, which treatments we have tried. I asked a few questions and then the nurse said she would contact Dana Farber to set up a time for the blood work.
A little while later I got an email back from our NP looking to schedule the appointment. She quietly ignored my earlier ramblings either to save me the embarrassment or simply because, just like the last three times I asked all of these questions, there are still no answers.
I desperately just want someone to give me some kind of answer!!!
Obviously the decision remains in my hands and I still don’t know what to do with it.
The past few weeks i have been focused on just knowing what ALL of our options are.
Researching, talking to other families, waiting for the phone call, that all felt like enough for a few days. Now that we are getting closer to the actual answers the reality that I will eventually have to make some kind of decision is taking over again. I want to live in this tiny space of fantasy hope a little while longer. Hope that he will or will not qualify ( I’m not sure which I’m hoping for) Hope that something will happen, like a some sign from god to steer me in the right direction. That things will get better or worse and it will become obvious what to do.
This tiny space the past few weeks has felt ok, maybe even good. Doing something without actually having to do anything. I haven’t had to give him meds that could make him more sick, but I also don’t have to let go of my fantasy hope just yet either. We are just looking and I think I have fooled myself into thinking that just looking is enough. That just looking somehow make things different. That people would all of a sudden start to say ‘Yes! We found the magic pill and we expect Kai to be a long term survivor.’
I’v always hated those words, we expect Kai to be a long term survivor, but really that was hope. The definition of long term survivor is different to me now, its not as bad as it once looked, but haven’t heard those words in a while.
But Monday we go in the for blood work and sending that blood, that’s an actual step in a direction. I am now involving another institution. A group of doctors who will only know Kai from charts and scans and blood. After all this fighting to know our options, I’m not sure I actually want to know…
What if he does qualify??? Do we do the trial? Do we go to Pittsburgh once a month and start all over with new doctors in a new hospital in a different state?? A week ago that possibility seemed totally reasonable but now that the possibility is real, it’s starting to feel a little insane.
Why have I convinced myself that THIS treatment is the best option for Kai, you know if we were to do another treatment??? Did I latch onto this trial because it seemed so impossible? Something to hope for that I would never actually have to face??
If treatment is what we thought was best there are still plenty of protocols we could blow through right here at Dana Farber, you know THE leading pediatric cancer institution in the country, an hours drive from us, where everybody knows your name…
For now we are still just looking