Change in Plans

Nick has been doing some serious soul searching and declared he has had enough of chemo. Before any major decision can be implemented, he hosted a meeting with his oncologists, Dr. Chen & Dr. Gouw to get as much information as possible. Here's the bottom line:

He will have one more round of chemo beginning next Wednesday. It seems one of his chemos, ifosfamide, is what is attacking his memory and frustrating him the most. They will consider replacing it with cytoxin, which is comparable to ifos. Hopefully, this will make a difference. He has officially maxed out on the red devil, adriamycin, but will still receive vincristine, etoposide and ifos/or cytoxin.

Then, surgery! Our surgeon, Dr. Mulvihill, is one of the best in the country. He is confident he could do surgery now to remove Nick's tumor with clean margins. However, the date is set for July 16th. He will probably have to remove Nick's spleen and the tail of his pancreas. The surgery will be laproscopic with the option to go in the old fashioned way if necessary. He will get a full PET/CT and MRI of his abdomen on July 2nd. Because he will have his spleen removed, they are blasting him with antibiotics and he will have to have a shot once every six years to help out with his missing spleen.

Nick will still attend First Descents from July 5th - 9th; meeting with surgeon to discuss details on the 10th. Doctors will want Nick to continue chemo after he heals from surgery (4-6 weeks). Interesting note: Dr. Chen said, "Nick, if you were my son, I would have Dr. Albritton (our oncologist in Boston) be the lead doctor on treatment from here on out. She will be the "quarterback" - with the same team/hospital at Huntsman carrying out the treatment." They have already communicated and Dr. Albritton is totally on board.

We are thrilled as Dr. Albritton (young adult oncology specialist) works side-by-side with Dr. Grier (rhabdo specialist) at Dana Farber. Nick's cancer is so rare, we need to be working with doctors that have an advantage. Even better is that they already work so well with the doctors at Huntsman. We really have a team working together for Nick!

I totally understand why Nick wants to stop chemo. He is exhausted both mentally and physically. It is 100% his right to dictate his treatment and we all support him completely. Our only condition is to get all the facts first and then to have no regrets with any decision made. Not easy, so we encourage to take it one day at a time. Sometimes the big picture gets convoluted and we lose sight of the "why".

We'll post more later. Thanks, everyone!

Love Lori