The last 6-8 weeks have been absolutely brutal.

Katie had 24 days of IMRT treatment (out of 35), after which Dr. Lee ordered the treatment to cease because the tumor was no longer responding (shrinking) to the treatment. She just had her last chemo treatment and now, we wait and let her heal.

At some point in the next few weeks, we'll have a consultation with the doctors about what treatment options remain, but it's safe to say that this isn't great news. There exists a "core" of the tumor that is simply not responding to the radiation/chemo.

Katie has been completely incapacitated by this 2nd round of IMRT and 3rd round of chemo. We had to forcibly ask MSKCC to put in a PEG because she wasn't getting enough nutrition by mouth. The treatment was causing massive amounts of stringy mucous build-up in her mouth making it very difficult to swallow. She's mostly non-verbal nowadays because it hurts her to talk. She's sleeping most of the time; it's all she can do to keep herself fed and hydrated with Ocelite.

We're not sure what treatment options remain to us. Certainly we'll ask about some of the immunotherapy-based clinical trials that are starting to accept oral cancer patients. I don't know if Proton Beam radiation therapy is an option. I'll probably ask about surgery again, but I expect the answer to still be that it's not an option to consider.

One thing that I've learned is that while MSKCC has some of the absolute best cancer doctors in the world, it is a place where communication goes to die. We appreciate their expert care, but it seems every week is another uphill battle to get all the different departments to talk to each other about the patient's care. If Katie's Mom and myself weren't pushing and being relentless advocates, I suspect her care would have been lesser for it. We'll likely keep Katie's treatment at MSKCC because of their doctor's expertise, but we're decidedly unhappy about their poor interdepartmental communication and scheduling.