Sunday, December 30, 2007

PET Scan Results

Nick had his PET scan done on Friday afternoon - took 3 hours to complete. The radiation department stayed late to help me get 2 sets of cd's made and I was able to get a copy of the scan to both NY & Boston hospitals via Fed X. I received the report and here is how I read the results (this is similar to reading ancient Hebrew):

There is an increase in activity in the original tumor site. When diagnosed in April, the activity level was 10.7 (critical); in August, it went down to 1.6; Friday it is 5.2. I wasn't able to tell what the size of the tumor is, tho. Good news is that the lymph node activity dropped from 3 in August to 2.5 and there are no other traces in his body - YAY!

I have a call into his oncologist here in SLC so she can really tell me what the scan results really mean. I'm assuming we will have surgery. I don't think I'll hear back from NY & Boston until later in the week.

More to follow.

Lori (Mom)

Friday, December 28, 2007

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.


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:

NY Pictures

M & M World in Times Square
Toy Soldier at Rockefeller Center
Famous Tree
Nick schoolin' his family!
So close! Sid the Kid and Nick only separated by a wall of plastic!
Santa's helpers!

Tuesday, December 18, 2007

Travel Log

Mom here - we got back late last night from a family trip (4 days) for fun to New York. The kids had never been there and with Nick having a break from chemo, I thought it would be a nice treat to see NY at Christmas time.

We went to see the NY Islanders play (our local Utah Grizzlies are the farm team for them)compliments of Adrian Denny from the Grizzlies; our seats were center ice and 8 rows up in the middle section, right behind the visiting team. I specifically wanted this game because none other than the Penguins, and yes, SID the KID Crosby, were there much to Nick's pure delight. It was fantastic to see him put the pieces together that the Penguins were playing. We saw Crosby score, the Penguins won and we saw a marriage proposal. We had a great time riding the subway and train, too.

Then we went and saw the Lion King on Broadway - spectacular! To top off our trip, we all went skating at Rockefeller Center, with the tree lit and Christmas music playing. We'll get some pictures posted soon.

Great time!

Now we are literally on our way to the airport to catch a flight to Boston. We have a meeting with an ENT surgeon at Children's Hospital of Boston at 7:30 a.m. (sheesh!) and then with Dr.'s Albritton and Grier at Dana Farber at 11:30. We fly home tomorrow night with our first official 2nd opinion.

Then, we finally can concentrate on Christmas shopping! Our next trip is back to NY on the 26th for a meeting with Dr. Wexler on the 27th for our second official 2nd opinion.

More to follow later!


Thursday, December 6, 2007

My Week

Nick here....

The past week I have had some fun. I went to a Jazz game with my neighbor, and that was a lot of fun. The Jazz won the Heat and it was a pretty close game. Shaq is huge! Also, I was given 2 tickets from my good friend Jennie, to a local Ultimate Fight held at the Energy Solutions Center. I didn't realize how good the tickets were untill my buddy Joey and I got there. They were VIP seats right next to the cage. It was insane! You could hear the leather smacking the guys face and you could just feel the pure power and force used in the sport. It was a great experience. Thank you Jennie!
Also my best friend Rob came to visit, who lives in Wyoming now because he makes big money working for the mine there. We had a lot of fun and had a lot to talk about. I might drive to visit him next week depending on the date of my PET Scan that I have to take for my visit to New York, where I will meet with a Rhabdomyosarcoma doctor who is supposedly the best out there. We are going to see what he has to say about treatments and surgery as a second oppinion. We will also be going to New York for vacation, where we will get to see the Islanders play (NHL) and a Broadway show. Hopefully we will also have time to go ice skating at the Rockafeller Center.
Well...... I think thats all for now. I hope I haven't left anything out. Ill post more for sure after my trip to Wyoming or my vacation to New York.
Much Love,

Tuesday, December 4, 2007


Many friends and family members have asked how they can donate to help with our (the world’s!) fight against cancer. Your generosity is overwhelming!

My first recommendation would be to support the Huntsman Cancer Institute. They offer several ways to donate, including the ability to designate your donation to support research, patient care or a specific cancer type. Click on the link below (or cut and paste) to view:

Next, I am reprinting excerpts from an email posted from the list co-owner of "Rhabdo-Kids”, Joan Darling. She provided an excellent collection of various entities to support, as well as discussing the overall issues in donating:

On Sun, 16 Sep 2007, a question was presented:
“How can each of us be more effective in raising funds for research and awareness of these diseases?”

Joan responded:
“In my opinion, we are more effective if we combine forces. Although a lot of people would like to focus on research for rhabdo specifically, and that is a good goal, it's a hard sell when only 400 Americans a year get the disease. And research into childhood cancers (and sarcomas) is interdependent to some extent - treatments for rhabdo may evolve from treatments for Ewings sarcoma; Gleevec was developed for a type of leukemia but is used for at least one sarcoma, I could go on.

However, government support for childhood cancer research and sarcoma research is being cut. I don't know that private contributions can come even close to making up the difference, so I would urge everyone to try to get government funding back up.”

Joan provided the following options.

For childhood cancer research:
CureSearch/COG (CureSearch has a research fund dedicated to rhabdo research that was started by Nick, whose mom is a member of this list.)
September is Childhood Cancer Awareness Month
Plan an event

Write to your congressperson asking them to support the Conquer Childhood Cancer Act

Candlelighters has awareness links

Sarcoma Research and Support:
Sarcoma Foundation of America

Sarcoma Alliance

Liddy Shriver Sarcoma Initiative

Rhabdomyosarcoma Researchers working on the underlying biology of rhabdo:
Dr. Frederick Barr
Dr. Timothy Triche
Dr. Timothy Cripe

As we are preparing to go to New York to obtain a second opinion, we also recognize the value of Ronald McDonald House Charities:

Another alternative would be to donate to the foundation we have established at work: The Empowered Wealth Foundation. I would personally make sure your donation would be appropriately applied towards one of the above mentioned charities.

If you have any questions, you are welcome to email me at: Thank you!