Tuesday, January 15, 2008

Ok, so here's the deal...

We finally met with Dr. Chen this afternoon (delayed by home emergency - it just wouldn't be any fun without a postponement of some kind). She has talked to both Dr. Wexler & Dr. Albritton at length.

We first discussed surgery: did I mention Dr. Wexler called me yesterday to state his surgeon "would now speak to Nick in person regarding surgical options" after reconsidering Dr. Wexler's argument? Traditional surgical protocol is to remove ALL areas where the original tumor touched - meaning, eye, orbit, jaw, nose, etc. to make sure they got it all. Dr. Sharma still is in favor of a maxillectomy (removing Nick's jaw) utilizing a new protocol in shrinking the original tumor site - which we've done - and then have a modified surgical area to remove. Both Sharma & Wexler feel this is the only chance Nick has in a very small window of opportunity. Dr. Chen & Dr. Albritton feel that because Nick had cancer in his lymph node, surgery will ensure no recurrence in the original tumor site, but cannot guarantee recurrence in other areas of his body.

She would like Nick to have 3 more rounds of chemo. I asked her if that makes sense, as it appears he is resistant to chemo. She feels his original tumor was incredibly aggressive and fast growing (we agree) and he has been off chemo for 2 months. If the remaining cancer cells are resistant, they would already been growing like crazy and presented themselves in his latest MRI and PET scans. She said the chemo will kill 80% of the existing cancer cells in round 1; round 2 will kill 80% of the remaining 20%; the 3rd round will do the same. Ideally, his body will be able to handle the remaining cells on its own (this is where diet is so important!).

We then discussed biopsies - both in the new nodule found in his gums/teeth area, as well as the lining in his sinus. She said if the results are either positive or negative, she would still recommend the same 3 rounds of chemo. She would like to do the biopsies once chemo is complete with scans every 6 weeks. If the biopsies are still positive, we can then consider surgery or clinical trials. She feels she is giving him the very best and powerful chemotherapy out there now.

Nick and I were left alone to discuss his options. I asked him if he wanted to call his dad or Lee, but he declined. He said he feels really good about what Dr. Chen said - it makes sense to him, and more importantly, it felt right. He told her to get him scheduled and he starts chemo on Monday. We also told her we realize this is all a best guess scenario supported by crossed fingers and prayers. Just as Dr. Albritton stated, if Nick does have tumor recurrence, it won't be because we didn't do surgery or didn't have more chemo, its just the cancer cells showing off their strength. At least we feel proactive with the chemo in hopes it wipes out any invisible cells that may be in other areas of his body. We also stressed that we will not have any regrets with our decision - no looking back, only forward. (One tiny peek in looking back, however - had we not decided to get a 2nd & 3rd opinion, Dr. Chen was allowing Nick to have major surgery on Jan 3rd. I'm am incredibly gratefuly for the grace of God in guiding us to find more help!)

The good news? The mohawk goes.

Thanks for keeping up with the news; seems to change on an hourly basis lately.

With love,

Lori

5 comments:

Obsessedwithlife said...

I'll continue the prayers and please let me know if have any more questions I can help with...

Your fellow sarcoma fighter,
Rachel

Anonymous said...

Happy Birthday Nick,
Celebrate your 18 years of carefree youth, honor your 19th year as a high school graduate and a sarcoma fighter, charge forward with faith and hope into your new year, and be happy in all your years. May January 17th be filled with love, joy, thanksgiving, laughs, surprises and gifts. My birthday prayer is for a Nick Raiit Cancer Free Celebration after 3 rounds of chemo. Love, aunt Chris

Anonymous said...

Time to put on the cowboy hat and boots! Shame the mowhawk will go though!! Be strong, be positive and knock out those stubborn cancer cells. See you soon Nick - love you lots. - Jennie xx

Anonymous said...

We will be keeping you in our prayers and thoughts.
God bless!
Craig Atkinson& family

Chris Ulvin said...

Dear Nick,
For some reason - reading this posting - feels like it was just yesterday. I think that is because cancer hasn't changed you one bit. You are a positive, hopeful, loving, thoughtful soul - yesterday, today and tomorrow. Godspeed.
May the Holy Spirit continue to fill you and not allow the enemy (regrets) to steal your faith and passion. In Jesus' name I pray, Amen.
Love, aunt Chris