Dylan had an MRI on Wednesday – the pons is stable; however, nothing could explain some of the new symptoms she’s having. Her oncology team believes it to be radiation effect and pseudo-progression. Jeff and I aren’t really buying that, and time will tell. We know her cancer is diffuse, so our hunch is that it’s active somewhere else. She’s slowly losing the ability to use her left arm. With her right arm not working, this is creating quite a bit of frustration for her. Luckily, she’s still able to eat & drink (with help), swallow and still be pretty sassy!
Because the CAR-T trial in Seattle isn’t enrolling DIPG patients anytime soon, we are feeling like we need to do something. We are heading to Mexico next week to try a treatment in Monterrey. We’ve spoken with several families who have gone and, to be honest, we have nothing to lose. The ultimate hope being that this buys her time to get to the trial.
Things have felt heavy lately. I don’t know if it’s because of the holidays or because we see her slowly getting worse and know there aren’t many treatment options left. I still believe in choosing joy, but some days it’s almost impossible. We are almost at 16 months post diagnosis, and you’d think things would be easier, but that is not the case. It never gets easier. Every day, it feels like there is an elephant on my chest. The pain can almost be too much to bear. I have conversations with people and I’m only halfway present – part of my mind is always on Dylan. I am thankful for the time we’ve had, knowing many DIPG families get much less. But, it just plain sucks. I still find it surreal that this is my life. I don’t believe this “happened for a reason” or any cliché like that. As hard as it is, I will continue working to choose joy and hopefully find meaning in the pain. As Jeff recently heard, you can become bitter or you can become better. We are both choosing better.