Let's get techie!

I had a long conversation with Dr. Albritton yesterday (although I predict Nick will be working with Dr. Grier, also at Dana Farber, as lead onc) and we discussed Nick's options after surgery. She also confirms with Dr. Chen & Gouw that Nick should not have any more adriamycin (red devil) - damages the heart, or ifosfamide - causes leukemia. She is thrilled Nick's surgery may be laproscopic.

1. Do nothing after surgery. Not unreasonable as there isn't a tumor to measure any benefit of additional chemotherapy. Nick did not receive any additional chemo after his major surgery in Boston last year, either, and the cancer came back. Something to keep in mind.

2. Maintenance chemo - there is a clinical trial (phase III) where the chemo drugs aren't quite so toxic without lifetime maximums. Nick is probably eligible for the trial (someone who has maxed out on traditional chemo with no visible tumors). Half of the patients receive a placebo and the other half have the drug. The drug is a mTOR inhibitor (look it up...) and is not a cure, but rather slows down recurrence.

3. There are two other drugs that work well for rhabdo (other than the other top 4 Nick has already received) - topotecan and irinotecan. We are hesitant to use these now when we can't measure Nick's response/resistance to these drugs and want to save them as an ace in the hole. If Nick were to use these drugs now, what could we use if he relapsed again?

4. Ifosfamide and adriamycin are the strongest chemo drugs available for the more aggressive, high risk tumors (stage 4 alveolar rhabdo, for example). Cytoxan and actinomycin are two drugs used for a more standard risk. She favors this option and may be administered on an outpatient basis, vs. a 5-day hospital stay.

So, Nick will put this all in his thinking cap to ponder. We anticipate meeting with Dr. Grier possibly the first week in August to discuss and confirm post-surgery treatment. We will all pray with Nick for guidance in making the best decision possible.

His counts plummeted yesterday and so is taking it easy the rest of the week. He's bumming he can't go with Kesley to her birthday party - at a trampoline gym. Next Thursday is when he will have his next set of scans and it will be the first time ever that I won't be hassling the radiology department personally for a printout of the report. Dr. Chen will be thrilled because she gets an axious phone call from me before she has had a chance to review it.

Thanks everyone for keeping up on Nick! More to follow...

Lori

So long, Red Devil!

Round 16 is complete! It's official - Nick will not have any more red devil (adriamycin) EVER AGAIN. His veins are pretty beat up and they have to use different spots in his arm for his IV's now He thought he'd try to go without the numbing cream to have his port accessed this time; big mistake. He said he won't do that again. He maintained his weight - a healthy 157 lbs! Nick had the usual entourage of friends visiting, and on a sentimental note, Carly came up by herself, brought him breakfast and hung out to watch a movie, too. I don't think that has ever happened in their entire childhood.

Jennie, one of the fairy godmothers couldn't come up to visit this time as she had been exposed to the swine flu virus from at least 2 sources. Denise, the other fairy godmother, came dressed up as a bag of jelly beans - darling costume that I was unable to catch on film. Forgot the camera. Forgot alot of things, actually. Forgot his pillow, blanket and videos. Forgot them again in the car when Kelsey and I drove back to the hospital AGAIN, just to drop off the stuff. Denise also made Nick a fantastic pair of pj bottoms - soft fabric and they are LONG! He loves them.

Denise brought a couple of funny things for Nick and I made him pose as soon as he got home today:

I had Kelsey join in the fun too, with her new puppy, Lily, that she got for her 13th birthday!

Nick is hoping to feel better soon so he can get ready for First Descents. In the meantime, we are still trying to figure out who his oncology team will be after surgery on July 16th.

Emotions have been running extremely high for me lately. Lee and I went to the movies Friday night and watched the trailer for "My Sister's Keeper". My voice was shaking with tears threatening to burst as I told him, "I think we'll pass on this movie". I was feeling ridiculous and trying to gain my composure as I heard him whisper back in a voice full of emotion, "I can't even watch this trailer without losing it". Then we both burst out laughing as the tears fell anyway.

With love and gratitude,

Lori

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

Wizards of Huntsman!

It wasn't easy for Nick to anticipate 4 more rounds of chemo when he was mentally prepared for only 2. Either way, he finished off 1 on Sunday. To help him get through the week, he was visited by a couple of wizards:

They cast a magical spell for healing and laughing. They probably should've included a spell to put on the Detroit Red Wings as the Penguins are down 0-2. Nick also had a few friends over (Mark, Ty & Cory):

Lots of dice playing and movie watching (thank you fairy godmothers for the westerns!)

Please keep up the encouraging words, prayers and fun visits to Nick as he continues through this current journey. He's feeling a bit weary and overwhelmed thinking about how much more chemo he has left to go through.

With love, Lori