Office visit 1/9

No vitals or blood test today, just a consultation with Doc P. He gave us a copy of a letter from Doc H2 while he was finishing up with other patients so he could sit down with us. It was a summary of what Doc H2 had discussed with us last week at MD Anderson, but it was nice to have it on paper and in front of us to refer to.

We were nervous when Doc P's receptionist said that he wanted to meet with us instead of starting into the chemotherapy today. We weren't sure if he have more surprises in store for us and we were also quite anxious to begin attacking that tumor again. Alan seems to be feeling the pain more - since the Gabapenten kicked in, we hadn't needed to give him any Hydrocodone for almost two weeks, but he's had to have it twice this weekend. Doc P upped the dose and frequency of the Gabapenten so we won't need to use the Hydrocodone - as a pediatric patient, the concern is not that he'd become addicted to it, but that he would build a tolerance to it. He also gave us the go-ahead to use Benedryl or Claritin to ease his allergic reactions to the Mountain Cedar.

Doc P wanted to take a breath and go over the new plan of attack and what may be in store for us. We will start the new chemotherapy regimen on Thursday. Though the drugs are accessible, one of them requires special tubing, so they will take a day or two to prep. We talked about the results of the testing and the conclusions that Doc P has drawn from the data. This second recurrence tells us several things. First, it is a locally occurring tumor since it has not metastasized yet. Second, the tumor is responsive to chemotherapy but also recurring. Finally, there had always been a question of where it originated - in the pelvis, then growing back towards the spine? or did it start in the back and grow forward. Through the sheer dumb "luck" of the tumor pressing on the nerve and setting in motion the flurry of scans and tests of the last month, we have an early view of the tumor and it seems evident now that it is coming from the sacrum.

This brings up several issues. Can we apply radiation to the tumor without damaging Alan's sciatic nerve? Will the chemotherapy and radiation be enough to do a basic resection? The reality is that we need to prepare ourselves for the necessity of a radical resection - in other words, amputating Alan's leg. It was a possibility we faced last winter before the Doc L recommended the hemipelvectomy, so it's not out of the blue, though we thought we had dodged that scenario. As difficult as that is to contemplate, the alternative is so much worse. We know two sets of parents who would have loved to have had the option to just cut the cancer out. Collin and Nick, you are always in our hearts.