Thursday, October 29, 2009

What I am thinkin

Nick here...

So I thought I would finally post myself and tell everyone again in my own words..... Yes I am stopping chemo treatments after my next round, but that does not mean I am giving up on this battle. Just doing it on my terms. I did everything that was asked of me the first I battled, and it relapsed. So this time I think I would like to fallow my feelings and do it a different way. What I find to be positive thoughts about my decision is this: Last time I did not receive chemo or radiation after surgery, while I did both this time after having my spleen and half of my pancreas removed. So I am still optimistic!!

Now about this buffalo round-up I am doing this weekend.... I am STOKED!! I have purchased everything I need to stay warm and it should be an awesome experience. I cant wait to post the pictures monday. (There is a chance I might be wearing chaps!)

I want to thank Colin for making this weekend possible and thank everyone else for being understanding. It might seem kinda scary right now but I can honestly tell you that right now I feel more confidence in my gut than nerves. ITS GONNA BE OKAY GUYS

Okay... im off. Talk to ya'll soon

Radiation Over, AGAIN!

I asked Nick to update yesterday - he must still be thinking about it. So, in the meantime, I'll provide a few tidbits and let him post when he remembers.

We met with Dr. Gouw and he said that it really isn't a bad idea to stop treatment and that Nick's decision is just as valid as the doctor's. He described Nick as a very unique case - age, relapse area, resection, the number of chemo cycles (rounds) - NINETEEN, the different types of chemotherapy drugs - SEVEN, radiation treatments - FIFTY-SIX and so on. Technically, they view Nick as having received three cycles post-surgery. For some reason, the oncology world likes to keep cycles in numbers of four or six (numbers required for clinical trials, statistics for writing papers, offical studies, etc.). So Nick has agreed to do one more cycle but wants to delay it a week, which will have him start on Nov 16th rather than on Nov 9th. Dr. Gouw and Dr. Grier will determine which of the lucky therapies to use on him - could be a one dose, one week or two week cycle. Should know by tomorrow.

Nick is done with radiation TODAY and wil be done with chemo by end of November. He'll have another PET/CT scan done following his last treatment and then will monitor him every three months, hoping and praying the cancer is gone for good. He is feeling leaps and bounds better today than on Monday. He will have labs drawn today and hopefully the reduced chemo cycle (by 25%) last week won't cause as much damage as last time.

Thanks to all for the reassuring words - it makes a difference. I haven't cried yesterday or today! The prayers for comfort were answered immediately and I truly appreciate the kindness bestowed upon Nick and our family.

Nick leaves tomorrow to check out some buffalo. He'll have a blast!

More to follow soon,

with love,

Tuesday, October 27, 2009

Today is hard...

Nick's latest round has really taken a toll on him. On Friday, the last day of the cycle, he said to me with weary eyes and a heavy sigh, "I'm done. I don't want to do anymore chemo. Set up an appointment with Dr. Gouw." As of last night, he proclaimed this is the worst he has felt through his entire treatment. His fatigue is off the charts; he has to stop to climb a flight of stairs; he now has significant stomach aches. As a mom, this is difficult to witness - a very helpless feeling floods through me. One day at a time, I keep saying, but today I'm sad.

He isn't, however, depressed. His spirits are fairly good and the teasing element is high. He isn't throwing in the towel, either. Long term, he fully plans on participating as an athlete with Team Beyond Cancer in their triathlon races next summer. Short term, if his counts hang in there, he is going on a buffalo round-up with our friend, Colin Fryer, at Antelope Island on Friday, Saturday & Sunday. They are bringing a camper and horses, so Nick can crash if he gets pooped during the day. He is so excited!

We have an appointment with Dr. Gouw tomorrow morning to discuss Nick's concerns and options. I'm not looking forward to this conversation. We will support Nick in whatever decision or path he chooses. I guess the difficult part is that there are no absolutes, no wrong or right, no certainties, no comparisons. My prayers today are that our Heavenly Father wraps our family in a big, fat bear hug, full of hope and comfort, and that Nick will make the decision that is best for him.

I'm also reminded to pray for other rhabdo warriors. Our friend Lisa is struggling with one setback after another and two young girls have relapsed. I pray our doctors are learning with each current setback to help others in the future. I'm a little weary of cancer today.


Wednesday, October 21, 2009

NCI Cancer Bulletin

There is an article in the latest NCI Cancer bulletin about Rhabdo:

"Gene Mutation Linked to Aggressive Childhood Cancer Rhabdomyosarcoma (RMS), an aggressive childhood cancer caused by mutations in genes that control the development of skeletal muscle tissue, has often spread (metastasized) by the time it is diagnosed in children, leading to poor survival rates.

Researchers have now identified mutations in the fibroblast growth factor receptor 4 (FGFR4) gene that are associated with metastasis and poor outcomes in patients with RMS. The FGFR4 protein belongs to a family of proteins known as receptor tyrosine kinases, which are involved in cellular signaling processes that help regulate cell growth, maturation, and survival. The gene, the researchers believe, may provide a target for therapy. The results appeared online October 5 in the Journal of Clinical Investigation.

"Researchers from NCI; the National Heart, Lung, and Blood Institute; The Childrens Hospital at Westmead, Australia; and the Nationwide Childrens Hospital in Columbus, OH, were involved in the project. Their previous research, and that of others, has shown that FGFR4 is highly expressed in RMS. Because the gene is active during muscle development and not in mature muscle, the team investigated whether expression of FGFR4 might contribute to RMS. Using mouse models, the researchers showed that the growth and spread of human RMS cells to the lungs was inhibited by suppressing FGFR4 expression. After sequencing the FGFR4 gene in human RMS tumor samples, they found that more than 7 percent of the tumors had mutations in the tyrosine kinase portion of the protein. Some of these mutations caused the protein to become overly active. Mutations that increase receptor tyrosine kinase activity have been found in other cancers, but the researchers note that this is the first time that mutations in a receptor tyrosine kinase have been found in RMS.

"With a series of lab and animal studies, they confirmed that two of the FGFR4 mutations caused increased tumor growth, reduced RMS cell death, and enhanced the ability of RMS cells to metastasize.

"The mutations, which were found in both types of RMS, alveolar and embryonal, appeared to act via the STAT3 pathway. Mouse RMS cells harboring these mutations were also more sensitive to treatment with drugs that inhibit FGFR4, which has direct implications for personalized therapy and for patients with metastatic RMS, for whom long-term prognosis remains poor, said lead author Dr. Javed Khan of NCI Pediatric Oncology Branch."

Research like this eventually will lead to targeted treatments that attack only rhabdo cells and leave normal cells alone.


Monday, October 19, 2009

Chemo - yes? no?

Nick's platelets continued to be down last week and Dr. Gouw said chemo would be delayed a week. He asked Nick to come in and get labs drawn Monday morning (today) and if platelets up (over 100), he could go ahead with chemo. So we showed up at 8:00 a.m. and labs indicated platelets rebounded great - over 200, but his white cell count was low. Hmmm. No go yet. Checked on his ANC count (ability to make new baby white cells) and it was fine. It's a go. We spent the next eight hours at the hospital for him to receive chemo and radiation treatments.

We met with Dr. Gouw this morning and he admitted they are really beating the tar out of Nick's body; with blood in his colon last week and his counts continuing to be really low, it's obvious Nick's bone marrow is getting weaker and weaker. Nick asked him how much more his body can take (chemo) and Dr. Gouw said he just doesn't know. Truth be told, Nick isn't sure how much more he can take; it's taking a toll on him physically, emotionally and mentally. The protocol being used is experimental and we will just have to take it cycle by cycle. It's more difficult when there isn't a tumor to monitor in trying to determine the effectiveness of the treatment. We're just crossing our fingers that we are eradicating the remaining cancerous cells.

Nick is very fatigued and dropped four pounds this week. He was home alone (well, not totally alone with his dad and friends a few minutes away) as we were out of town for the last four days with Kelsey in Southern Utah for a softball tournament. He usually pops his head off the couch to smile and say, "Hey, Mom, I have cancer. Would you make me some food?" I respond, "Hey, Nick, I have a child with cancer so get your own food." Makes us both smile as I prepare his some food. There is something very disturbing in this scenario.

Thank goodness it's October - MLB playoffs, football - both college and pro, NBA and NHL underway. I lent him my Kindle and he read his first book in three years and ready to order another one. He also has cracked open his college materials to finish up the two classes he still has an incomplete in at the U of U. It is overwhelming, but he is at least looking. He is looking forward to going to the Utah Grizzlies hockey game - opening night - on Saturday, compliments of the Grizzlies and if his counts can handle it, he still plans on going to California next week to see the Penguins.

Love to all,


Tuesday, October 13, 2009

Epeius Biotech

Just read an email and thought I'd pass it on:

Subject: Epeius reports complete remissions

Epeius Biotech is reporting three complete remissions of three separate Stage IV metastatic cancers --- one each of osteosarcoma, prostate cancer, and pancreatic cancer --- after a regimen of its nanotech anti-tumor treatment, Rexin-G, used as a single agent.

The prostate patient, an elderly priest, apparently suffered from end-stage disease before Rexin-G treatment. His bone lesions have healed and he is back at work saying mass.

This should be major news if it holds up under further review.

Fervent prayers that they are on to something...

Nick had a concerning issue today involving his blood. His platelets (affects how the blood clots) are pretty low - 86 (normal is around 150 and higher), but staying level. They'll do labs again on Thursday to see how he is doing. May have to adjust chemo for next week. I'm doing my best not to ask him, "So, how ya feeling?" every 3 minutes. I think it, though. I spread it around and ask the dogs at random, then Kelsey, Carly, Lee, workmates, girlfriends, the mailman, the grocery clerk, roll down my window to ask the driver in the car next to me at a stop light, and so on. Time to wear a warning hat, perhaps?

But really, today is a good day. Love to all checking in!


PS: Jay Paterson, I LOVE YOU!

Sunday, October 11, 2009


CureSearch unites the world's largest childhood cancer research organization, the Children's Oncology Group (COG), and the National Childhood Cancer Foundation through their mission to cure childhood cancer. Research is the key to the cure. Every advancement in curing childhood cancer has come through research. It has treated more children with cancer than any other organization in history and has been responsible for many of the improvements in the treatment and cure rates of childhood cancers.

Nick's Warriors supports CureSearch and 50% of all contributions raised have gone to this charity (the other 50% to First Descents). Joan Darling, co-founder of Rhabdo-Kids - the online rhabdo support group - works with COG and reported the following:

Date: Sun, 11 Oct 2009 16:53:01 -0400
From: Joan Darling
Subject: News from Children's Oncology Group (good news and bad news)

Hello All,

I attended the Children's Oncology Group meeting the week before last, and there is some good news in terms of the number of new agents that are being developed that may be found to be useful in treatment rhabdo. This is the first time that I've gone to a meeting where there are so many new targeted biologic agents that it has become difficult to determine which ones to test.

There are two things that are needed to test these: patients, and funding to run the trials.
Unfortunately, there are usually more children who have relapsed with sarcomas or other solid tumors than there are trials to test new agents.

Despite that passage of the Conquer Childhood Cancer Act last year, which could allow congress to allocate up to $30 million a year for childhood cancer research, none of this money has come through yet.

So if anything is really needed, it's more funding for childhood cancer research. That's the bad news - that often I heard a lot about how to pay for running clinical trials, and setting priorities for what trials to run.

If anyone is interested in a great place to contribute, I highly recommend Curesearch Charity Navigator gives it an extremely high rating for efficiency - only 4 percent of income is not spent on research.

By the way, I do not get any compensation for being a COG patient advocate, but I do get my travel expenses reimbursed. I'll post more in a series of messages.

Joan, mom to Ali, dx stage 3 alveolar 9/96 List co-owner, Rhabdo-Kids

Just a little news to forward to those who have supported Nick's Warriors. Please take a moment to visit the CureSearch website ( and to learn more about them. I think Nick made a very wise choice in supporting this charity.

And the fight goes on...


PS: The radiation machine broke at Huntsman on Friday, darn it. Nick is scheduled for treatments (radiation only) every day next week. His blood counts stayed above critical this time and although he let me shave off his Mohawk (WAHOO!), he still sports a 5:00 shadow on his head. He did admit that perhaps he should realize his limitations when he came back from hunting for the afternoon with a buddy, half frozen, utterly exhausted and thankful he didn't pass out or throw up from the long hike. He finally told his friend that if he shot an elk, he might as well shoot him, too, because he wasn't helping cart out a dead elk and was going home. Too funny to me! That being said, he is gearing up for a trip to California on Nov 5th and watch the Penguins play the Kings (compliments of Aunt Chris & Uncle Stan). Even though his new normal way of life is counting out days on the calendar when he will be feeling well, he jumps on any opportunity to make the most of those precious days. I LOVE THAT! What would our world be like if everyone that felt good (decent) when they woke up, then tackled the day, making the most of every second? I don't hit that moment until 10:00 a.m. after coffee, and then my enthusiasm only lasts until noon. But, ah, I have an example to follow - I can only get better. Thank you, Nick. I love you!

Monday, October 5, 2009

One week down, four to go...

Nick survived last week's daily chemo (2 kinds) and daily radiation with flying colors. I complained much more than he did by far! We had to be at hospital outpatient infusion by 8:00 a.m. and finished up sometime around 3:00 p.m. every day. Nick got wise and as soon as he was hooked up, he'd cover his face with his camouflage blanket, became invisible and snoozed. His weight is stable at 146 and his counts are good, too. He admitted inpatient is easier but he really likes to come home at the end of the day. Me too.

Our visit with Dr. Randall (orthopedic surgeon) re: his hip went well. They think his hip deterioration (about the size of a dime) is from the massive doses of prednizone he received way back in April '07. The damage was probably done a long time ago but the tech just now picked it up. The ball of the femur isn't concave so there isn't any pain. They don't think it is cancer, nor do they think additional chemo or radiation will do any further damage. They'll just keep an eye on it with scans in 6 months.

We had a chance to visit with our new friend, Lisa Buechler - she had a tough time with her surgery but she is buzzing around in her wheelchair, recovering nicely now. Jennie & I finished up a couple of puzzles and Denise came over to catch up.

He's feeling a little under the weather now and Kelsey has the flu (quarantined to the basement, but at least she has the Disney & Nickelodeon channels). He is able to drive himself to radiation this week and I finally made a trip to the office. Penguins are off to a great start, thanks to nurse Terri, who gave Nick an official fan towel and photo of the Penguins she brought back from her visit to Pennsylvania last week.

Thanks, everyone!