3rd Opinion Results

Nick, Lee & I took off in the afternoon of the 26th; plane late due to snow in SLC and we finally arrived in our hotel room at 2:00 a.m. The hotel wasn't too bad - it is specifically designed to accommodate families visiting the medical neighborhood. Nick's bed was particularly funny; he unfolded the couch and mattress, however, the mattress didn't quite unfold, curling at the top and bottom. He had to sleep diagonally to fit.

We met Dr. Wexler at Sloan-Kettering at 11:30 (our appt time was 9:30). The pediatric floor is amazing - a giant colorful see-through room filled with any toy or game one could possibly think of. A kitchen with a stocked pantry for families, an extremely large waiting room (completely full) with couches and computers. So many children with cancer - infants, toddlers, tweens, young adults - all of them there, with various stages of ongoing treatment.

Dr. Wexler is a highly educated and experienced doctor. He knows rhabdo! He is very caring, yet has a different style of presence. The meeting was actually quite brutal. I have only cried once in a doctors office, when Nick was confirmed to have a malignancy and even then, it wasn't in front of Nick. This meeting made it twice.

Bottom line: Nick absolutely has healthy rhabdo cells in his original tumor site. These cells are showing to be resistant to radiation and chemo. The only way to get rid of them, is surgery. If he doesn't have surgery, the cancer will do what the surgery would do anyway, except with fatal results. There is a possibility the surgeons will not do the surgery if they feel they cannot get all the cancer (clean margins).

Decisions will be made upon the results of Nick's PET scan today (the scan at Huntsman wasn't working last week and we had to postpone). If the scan indicates no or local activity, he recommends surgery, with chemo to battle the invisible cells. If the scan indicates activity outside his original tumor site, there is no need for surgery, as Nick's probability of succumbing to this monster is "astronomically high".

We caught the 5:00 p.m. flight home - exhausted, to say the least.

So the Boston & NY hospitals differ on their recommendation for surgery, however, the Boston drs have not had a chance to review the pathology slides yet, which may be the tipping point (they should have reviewed by end of today). All drs and surgeons will review today's PET scans and regroup to consult and give an official opinion, hopefully by end of next week.

Should we decide on surgery, Nick is leaning towards having it done in Boston. Although the news is very difficult to absorb, we really appreciate the honesty and directness.

We'll keep updated as we are.

Mom