To say life since Alan's diagnosis has been an emotional roller coaster would be an understatement of massive proportions. The last few weeks leading up to the consultation with Doc L, the surgeon at MD Anderson's Department of Orthopedic Oncology, have been particularly low. With the regrowth of the tumor, we were very concerned with what we would need to do to fight it back so we wouldn't be in this position again. When we came to see Doc L last December, we went in thinking we'd be discussing a procedure where they would remove the tumor mass and scrape the surface of his hip bone. Instead, Doc L proposed an internal hemipelvectomy and the "good news" was that Alan would keep his leg. We were shocked, not expecting what she said at all. Doc P did not agree - after all, why did we put Alan through all that chemotherapy if not to avoid a mutilating surgery.
After a lot of soul searching, we had decided to take the smaller step of having the tumor removed without doing anything radical and see what the pathology told us. When it came back with a less than 1% viability rate, we thought it was over. When we got the news that it had grown back in May, we were devastated. There was second-guessing of course - should we have gone with Doc L's recommendation? what if this time around the news is even worse because we didn't go in right away?
We drove out to Houston steeling ourselves for the worse case scenario of Alan coming out of all of this without a leg. It was hard to consider but we had to put it in perspective. I remembered how Gavin's mom sent him into surgery not knowing if he would come out with an arm or not. And I very much kept in mind how much Collin's mom wished they could have cut the leukemia out of him.
We arrived at the Sarcoma Center after a nice walk from our hotel with plenty of time before our appointment. We didn't wait very long before we got into an exam room and soon one of Doc L's residents came to talk about what Alan had been through and grab the copies of Alan's scans that we had brought with us. It was quite a longer wait after this though, with the resident coming by the room to let us know what was going on - he and Doc L had gone over the scans, and Doc L was consulting a muscular-skeletal specialist in the Radiology Department. She also wanted to call Doc P back in San Antonio so they could discuss Alan's case directly.
Around the three hour mark (right after I had updated my Facebook status about our wait), Doc L came in with half a dozen baby docs. It was like a reverse clown car, with doctor after doctor piling into the little exam room. The first thing she said was that mass did not seem to be attached to the ilium bone. Yes!! They could see a plane between the mass and the ilium, so she saw no reason to do a hemipelvectomy. This was a *big* relief - a friend who was an OR nurse told us last fall that orthopedic surgeons are quick to cut, so if she didn't see the need we were confident that things were going well.
We talked a bit about how and why the tumor came back. It could have grown off a piece that was left behind from the resection or it could have sprung up the same way the original mass had started. There's no way to know which, but there would be no difference in treatment so it's just an intellectual exercise.
She recommended that we have another resection surgery to remove this current mass. Though there is a clear plane between the mass and the ilium, it is right up against Alan's bladder, so we would need a urology specialist on hand for the surgery to repair it. While she said the general pediatric surgeon back in San Antonio could do it, we discussed the option of having her and the team at MD Anderson do the operation. Not that we had any problems with Doc R, he's taken good care of Alan on many procedures, but this is our second time around. We really wanted the cancer specialists and all the support they have here at one of the premier cancer centers in the world.
These are all preliminary proposals - Doc L will present Alan's case to 2 or 3 conferences next week, including an Adult Sarcoma conference. She'll discuss the matter with Doc P and us late next week after she has had a chance to consult with them, then we can finalize any plans.
In any case, it will take a couple of weeks to be able to schedule a mutually available date for the whole team necessary for Alan's surgery, so we will most likely need another course of chemo to keep the tumor at bay. Doc P has anticipated this though so it will be a topic for discussion when we see him on Friday.
So it's a case of hurry up and wait. We know everyone has been busy praying for Alan and we can feel it. While things may change after Doc L has a chance to consult with her colleagues, we are very hopeful.
