Sunday, March 23, 2008

Much is new...

Happy Easter!

Lots to update this time! Interesting month so far.

First, I spoke with the surgeon in NY and after he reviewed Nick's scans, he still wanted to do the major surgery by removing all of Nick's upper right jaw, but keeping his eye. We then spoke to Dr. Albritton (oncologist) and Dr. Rahbar (surgeon) out of Boston to discuss options. Both are willing to have Nick go through the extensive clean-up surgery without compromising his facial structure but we needed to decide how to proceed after surgery. As a family, we discussed everything - Nick's ultimate decision is:

1. Go ahead with biopsy and minor surgery; if there is a tumor found, he will then undergo the major surgery (with Dr. Rahbar).
2. If there are only residual viable cells found, he has declined to do further chemotherapy (there is no tumor to measure progress and the effectiveness of additional chemo is not that great). He will instead go towards alternative and complimentary therapy; acupuncture, traditional Chinese medicine, vegan diet (at least try), etc. Dr. Albritton said "why wait for the pathology results to go this route and get started right away?" I about fell over - she is the first oncologist to actually support alternative treatment out loud. We really, really like her.

Nick was scheduled to have his port removed for April 4th when he was invited to go to Lake Powell with a bunch of friends on April 3rd. I was able to work with his SLC surgeon's nurse and we rescheduled it and it was removed Friday, Mar 21st. Yes, his Hickman port has finally been removed and Nick had his first shower without any tape on his chest for the first time in almost a year!

After his port removal, we went up to the 4th floor to show all the nurses his new band aid. Nick has also been going stir-crazy; his friends are working, going to college or on missions. I suggested now would be the time to go volunteer at Primary Children's Hospital (PCH). One of Nick's favorite nurses, Jay, used to work at PCH. Jay was working on Friday and we talked to him about how Nick could help. Jay's best buddy works at PCH's oncology dept and he immediately called him. Nick will meet them both Monday morning to get his training started. Jay told Nick that kids with cancer don't ever say, "Why me?" or "What is going to happen to me later?" - just totally in the "now" and "when can I go play?" To see a big kid like Nick as a cancer survivor (we loved to hear that word) is a huge boost for them. My heart about burst when Jay told Nick, "I'm so proud of you!..." There is also a huge camp for cancer kids going through treatment that Jay hopes Nick will participate in - sounds fantastic and Nick said to count on him!

On our way home, we stopped by the office to show more people his new band aid. That's when we got the call from Dr. Rahbar's office - the ONLY day they can do the surgery is April 3rd, same day as going to Lake Powell. We had to take it. Nick was WAY bummed, but as always, rebounded pretty quick. Sounds like it will be a 5 hour surgery and a 7 day hospital stay. We fly out on April 1st. Surgery will be at the Children's Hospital of Boston; he will be the tallest patient there by far!

Whew! Other than that, Nick has been playing basketball, riding his motorcycle and finally went snow skiing yesterday. Feeling good and anxious to get his hair back. He is taking his vitamins, eating organic meat & veggies, no sugar and drinking MovaVi religiously.

Today is obviously a precious day to be grateful - so many prayers answered. The past has been grueling, the future still unknown, but today is an amazing, wonderful day!

Lori

2 comments:

Bonnie & Brianna said...

Your decision-making skills sounnd superior! Clear, well-thought-out, I know where I'll turn when feeling indecisive. :)
Seriously, we're so happy good plans are coming together for you. Thursday, 4/03, you'll have a prominent place in our prayers.
Love, - Bonnie, Jordan & Brianna

Chris Ulvin said...

Dear Lori,
May all our prayers continue to be answered. Love, Chris, Stan, Jessica, Kris and Stuart