Thursday, December 20, 2007

Time adds knowledge

Yesterday, we met with an ENT surgeon from Children's Hospital of Boston and Dr's Albritton and Grier from Dana Farber to obtain a 2nd opinion. All 3 doctors strongly agreed that we should NOT have the surgery. Here is what they explained to us:

1. The number of viable cells were few in number based upon the last pathology report done after Nick's surgery in September. They are not convinced the latest MRI shows tumor progression. Everyone has a mass left after treatment, cured or not.

2. Surgery is going to determine 2 things - one - that there is no cancer in his upper jaw (so why have all this extensive restructure and prosthesis unnecessarily?) or two - there is tumor progression but surgery will not cure Nick. Usually, when a tumor is removed, the surgeon tries to remove a portion around the tumor, including the normal cells around the edges, giving what is called "clean margins". This is almost impossible to do in the head and neck area. If there is new tumor growth, the cancer is considered "systemic" and Nick will be in big trouble. They still feel surgery would not be appropriate now, but would consider alternative chemotherapy concoctions, clinical trials, etc. for treatment.

3. If we still felt surgery was in Nick's best interest, the surgeon would not do nearly as much reconstruction as suggested by our SLC doctors, but an aggressive biopsy; he'd still keep his teeth, the roof of his mouth, etc.

4. Their recommendation is to simply wait a few weeks and then have scans done again. Nick is already scheduled to have another PET tomorrow, which will show any hot spots if there is new cancer growth. We'll then have another MRI/CT done mid-January to compare against both the scans done in Sept and Nov.

The doctors were honest, blunt and very informative. All 3 re-arranged their schedule to accommodate our flight. Sometimes, we have to read between the lines with our SLC doctors, so we very much appreciated the directness. Dana Farber is a fantastic hospital. Where most oncologists may never see a rhabdo case in their entire career, this hospital, as well as the one in New York, has doctors dedicated especially to this childhood disease.

We still will be visiting Sloan-Kettering on the 27th to meet with Dr. Wexler. Not only do we want his opinion, too, but develop a possible relationship with him as he is a rhabdo expert when it comes to alternative chemo treatment, should Nick need it. Dr. Wexler, Dr. Albritton, Dr. Grier and Dr. Chen all are working TOGETHER in Nick's best interest and we could not ask for anything more!

So, there you go! Trip very much worthwhile and extremely informative. For now, no more chemo or surgery, just enjoy life for a few more weeks without worry. Thanks again for all the prayers; obviously we were guided from above to search out alternatives for Nick.

Merry Christmas, everyone!


PS: Nick's email address is:


Chris Ulvin said...

Happy Friday to all,
May the PET and upcoming visit to Sloan-Kettering add more knowledge and Christmas season more time so that Nick's future holds complete healing. God bless everyone who visits Nick's blogspot and adds their heartfelt prayers. Love, aunt Chris

Chris Ulvin said...

Good Morning Nick,
Since you are headed back to NY - I had to post this joke that found its way to my email address.

There are two big conferences in for Engineers and one for Lawyers. They are both being held in the same building downtown. On the first day of the conference, two groups run into each other at the train station and chat while waiting in line to buy tickets into the city.

When they reach the counter, the three lawyers each buy tickets and watch as the three Engineers buy only a single ticket. "How are three people going to travel on only one ticket?" asks a lawyer. "Watch and you'll see," answers an Engineer.

They all board the train. The lawyers take their respective seats, but all three Engineers cram into a restroom and close the door behind them. Shortly after the train has departed, the conductor comes around collecting tickets. He knocks on the restroom door and says, "Ticket, please." The door opens just a crack and a single arm emerges with a ticket in hand. The conductor takes it and moves on. The lawyers saw this and agreed it was quite a clever idea.

So after the conference, the lawyers decide to copy the Engineers on the return trip and save some money (recognizing the Engineers' superior intellect). When they get to the station, they buy a single ticket for the return trip. To their astonishment, the Engineers don't buy a ticket at all. "How are you going to travel without a ticket?" says one perplexed lawyer. "Watch and you'll see," answers an Engineer.

When they board the train the three lawyers cram into a restroom and the three Engineers cram into another one nearby. The train departs. Shortly afterward, one of the Engineers leaves his restroom and walks over to the restroom where the lawyers are hiding. He knocks on the door and says, "Ticket, please."

P.S. I don't recommend you, your mom and Lee trying this when you visit Sloan Kettering - but it could get a laugh from the doctors.