Wednesday, February 23, 2011

A picture is worth a thousand words...

My first question to Dr. Gouw this morning was "just how much has the cancer decreased?" He answered by showing us the scans from December side by side with yesterday's scans. One one on the right appeared to have mostly solid gray, though you could see the spine. The other was full of several spots of white, black and various shades of grey. We all assumed the one on the right was the good one, nice and clear. Nope! The grey meant the cancer was everywhere! So being able to see all his organs, contrast, etc. is fantastic! I'm very, very thankful we didn't see December's scans earlier - it would've scared the life out of me!

We then talked about Nick's upcoming calendar, with the NCAA tournament in March and First Descent camps in April. Dr. Gouw worked it out so Nick will have a full dose today of cycle #1 for 1 day (which is particularly brutal), then off for four weeks. Cycle #2 isn't until March 21st for 5 days, then off for another four weeks then cycle #3 for 10 days on April 18th. So Nick will have a great couple of months!

Still no results on either clinical trial, although Dr. Gouw said it is very likely that Nick will test positive to the Sloan Kettering #09-090 trial as about 90% rhabdo cells do, while the local ALK trial has only just begun to test on sarcoma cells. And yes, the trial at Sloan Kettering will be treated in NYC.

That's it for now! Keep the prayers coming for Nick this week - he is going to be one sick fella. Blessings to all,

Love, Lori

Tuesday, February 22, 2011

Prelim is in...

"...decrease in peritoneal metastatic disease..." and "...previously demonstrated right retrovesical heterogeneous mass is not visualized on this exam..."

Translation - Nick is still responding to treatment.


More tomorrow after doctor's appointment.

Love Lori

Tuesday, February 15, 2011

Let's have some fun!

With the tummy rumblings settling down, Nick jumped on the opportunity to go to Moab today (thank you so much, Fairy Godmother, Jennie and Colin) to spend some time with Colin. He will help trailer down horses to Colin's new property in Arizona, where Nick will hone his cowboy skills, topped with a brand new cowboy hat he has been saving for such an occasion. We first had to stop by Huntsman this morning to have his labs checked and 30 minutes later, Katie confirmed he was fine to go. His white blood cell count was 50,000! Normal counts are around 12,000. This means his blood marrow is working very, very well, although helped along by his Neulasta shot, which promotes white cell production. Nick will be flying home on Sunday. This trip is better for him than any chemo treatment out there.

I took advantage of Nick's schedule and booked a weekend trip for Lee and I to Las Vegas. Kelsey will hang out with her dad, as she is free of any sporting tournaments. The whole family will have some much needed r & r so we can be mentally and physically prepared for next week: scans on the 22nd and an aggressive round of chemo on the 23rd (this one wipes Nick out).

Lee is out of town and Carly is down at school, so Nick took Kelsey and I out for a nice Valentine's Day dinner. It was delicious and I thoroughly enjoyed watching the kind-hearted banter between the two siblings (our waitress did, too). This is a great week.

May everyone have a great week, too! Blessings and love,


Wednesday, February 9, 2011

Is this the Twighlight Zone?

Nick survived the long morning on Monday. It took awhile getting his chemo going, waiting for his labs to return - all levels good (except his pulse is high again at 103). A 2 hour visit turned into a 4 hour visit, but that's ok. Off to grab a bite at his favorite place for some delicious clam chowder; did I mention he gained 3 more pounds? While we were eating, we got a call from a doctor in New York (Sloan Kettering) who is leading up the phase one clinical trial, Intraperitoneal Radioimmunotherapy. The treatment involves an antibody or protein that binds with certain tumor cells, similar to rhabdo cells. Radioactive iodine is bound in the antibody, subsequently killing the tumor cells when injected into the lining of the abdomen. The doctor was asking for Nick's consent to test a portion of Nick's frozen tumor tissue sample to see if the antibody will work. Well, sure! Our hearts skip a beat, a smile breaks out and hope is off and running. Targeted therapy is showing up everywhere, with the best part being that only cancer cells are killed, not the healthy ones. Off we race home to fax the consent forms back asap!

Then we read the fine print. Phase one trials aren't very fun - not much of a step from experimenting on mice to experimenting on humans. So experimental, in fact, that only 24 participants are being accepted into this trial. Apparently what they are trying to determine is just how much radioactivity is safe for treatment. Nick and I both have visions of him glowing in the dark, with the doctor saying, "Whoops, my bad. Let's dial that back a bit." We have many questions, including how long it will take to test the tissue, if the treatment will be in New York, etc.

The cool thing is that Nick is totally open to it, saying that he is willing to keep looking for that ever evasive curative treatment, knowing that he could be the one it works for. Although optimistic, as a mom, I'd rather they practice on someone else first. But Hope, ever present and ever strong, remains thriving in our hearts.

And the learning continues...

Nick is feeling fairly well today, but having stomach cramps off and on. His trip to Moab and Arizona is set for next week, and that is the best treatment he could have! The cowboy life with horses, fresh air and great friends is extremely healing.

Thanks to all for checking in and for the prayers -


Sunday, February 6, 2011

Way to go, Packers!

Nick had a long week and has one more week of chemo to go. He isn't feeling so well this weekend and watched the big game in his room, with Lee camped out, too, keeping him company. He is trying to arrange a trip to Moab and Arizona later in the month before he has his scans on the 22nd. He'll have to play that one day-to-day.

In the meantime, here is a wonderful cartoon drawn by our close friend from Canada - Jay Paterson - for Nick. Made us smile! Nick said, "Hey, it looks just like me! How did he do that? Those are MY knees!"

G'night, all...

Love Lori