Wednesday, December 30, 2009
As for the family of Ashton Miller, they are touring the wonders of Paris; however, Ashton developed a fever and is experiencing the hospital facilities there, too - not part of their itinerary. Her site is: www.caringbridge.org/visit/ashtonm/journal.
As we celebrate Nick's current health while he is thoroughly enjoying whooping his friends in poker, raking in the quarters (practicing for the upcoming Vegas trip, perhaps?) and on his way to Park City to embrace winter in all her beauty, please take a moment to pray for the McCulloch and Miller families and all whose tender hearts and spirits may need an extra blessing today.
Tuesday, December 29, 2009
Wednesday, December 16, 2009
He buzzed his head so he can begin the regrowth nice and neat. Last night, for whatever reason, Nick and his buddies were sitting just outside his bedroom on the floor in the hall - I guess sometimes you just gotta plop where you are and hang out. This was before the valium, too. Kory, Scooter, Kyler, Nick & Rob
On another note, the entourage of my friends descended upon Lisa last night to offer some Christmas cheer. Fairy godmothers Jennie & Denise along with Ruth and myself brought in dinner and loads of presents and spent a wonderful evening at Lisa's apartment. Lisa had it decorated so nicely, with candles burning - the atmosphere was perfect. We laughed and shared stories; I hope Lisa enjoyed the night as much as we all did. Her last radiation treatment is on Christmas Eve and then she'll gear up for 3 rounds of in-patient chemo. She is a true warrior! Here's her site again: http://www.caringbridge.org/visit/ihavewhat Ruth, Lori, Denise & Jennie
Also, for a great story of people reaching out to help someone, check in again on Ashton Miller's site, http://www.caringbridge.org/visit/ashtonm. She has recently made out her "bucket list" and through the generosity of others, she and her family are going on a dream vacation to France.
This week is going to be full of gatherings with family and friends. May you all be blessed with His spirit and grace as you enjoy this season of love.
Monday, December 7, 2009
We acknowledge your power of prayer, yet again, in humble gratitude. Answered prayers of healing, prayers of strength, prayers of comfort and prayers of faith. We've been very blessed by His grace and light, and blessed by the enormous support of our friends and family.
As Nick embraces his second miracle of health, we would like to extend our prayers for:
Joella Elizabeth Childress Carlyon - http://www.caringbridge.org/nc/joella/;
Lisa Buechler - http://www.caringbridge.org/visit/ihavewhat
Zachary McCulloch - http://www.carepages.com/carepages/SublimeLBC/
Ashton Miller - http://www.caringbridge.org/visit/ashtonm
It was Ashton's mom who posed the question, "How do you balance the reality of this disease with hope?" when a very wise man, whose own wife lost her battle with rhabdo responded, "It is impossible to balance what you know about this disease with hope. Forget balance. There can only be hope. Period." I love that answer and he changed my perspective back to where it needs to be. Some might think it is easier to do when we can't find any cancer growing in Nick, but let me assure you, it isn't. We may have to adjust what we hope for, but we must never, never lose hope.
Thank you all,
Friday, December 4, 2009
Here's to having a fantastic Christmas with college to look forward to again in January. Here's to hair. Here's to gaining weight (Nick, not me, of course :) Here's to feeling like a human being. Here's to our network of supporters, for because of your prayers, faith and encouragement, the journey has been a little lighter.
PS: Here's to Logan in the U of U Radiology Dept - he was awesome in getting the results back to me so quickly. He likes my word (borrowed from the rhabdo-kid list) - "scanxiety" and now, I officially take off my hat!
Tuesday, December 1, 2009
Health insurance for his age group remains to be a ridiculous exercise in rhetoric, patience and paperwork. Too confusing to go into detail (and I don't want to waste anymore energy getting pissed off), Nick was finally approved to get an MRI done on his sinus and pancreas area, along with a chest ct scan - all to be done this Thursday up at the U of U. Probably won't get results until Friday afternoon so consider this fair warning that my anxiety level will be sky high until we get the all clear.
He's off to Bear Lake this weekend with the guys so should have plenty of R & R.
Thanks to everyone with the continued support!
Friday, November 27, 2009
Nick and his sisters had a wonderful time spending Thanksgiving at their dad's with their aunts and uncles, cousins and friends. Lee and I took off to southern Utah to spend time with Lee's family, which was also a special time with family. We arrived home around midnight Thanksgiving night. Friday morning, Nick called me to tell me he had a fever. As he drove home from his dad's house (about 30 minutes away), I called the hospital to get a bed for him on the 4th floor and packed his bags. His fever only reached 101.4 and by the time he got checked in with antibiotics and Tylenol, his fever dropped to normal. He will be here until he can go 24 hours with having a fever. It has been going up and down a little bit - not too bad.
I'm so thankful he had the time to enjoy his family and FOOD. I'm also thankful we don't have to cancel anything due to this sudden hospitalization. One of our favorite docs on the floor came in to see Nick before we had even unpacked. She said, "Ok, what do you have going on this weekend that we have to hurry and fix you up for?" She was one of the docs that tried to get Nick healthy enough to go to the Mayweather/Marquez fight. Ironically, the last time he was hospitalized for neutropenic fever (which caused him to miss the fight) was when he had the same chemo he had this last time - exactly the same number of days when his counts crashed. I'm thinking we need to stop this treatment; could be me, but...
We also had a scare when he had a nasty bloody nose on Monday. We were sound asleep when Kelsey came knocking on our door about 11:45 p.m. She said, "Nick needs you." I raced downstairs to find him sitting on his bathroom floor, crossed legged, with his head over the toilet. I ran up behind him and saw blood everywhere; he couldn't get his nose to stop bleeding. With blood being my kryptonite, I broke out in a sweat, saw stars and felt nauseous. Lean on me, Nick, I've gotcha covered. Lee came down too, and while I was calling the hospital, Lee and Nick tried cold compresses, pressure on the bridge of the nose, etc. Docs told us to come in to get his nose packed, but Nick stalled, saying "just give me a few more minutes" At one point, the blood was flowing so fast, it sounded like someone was going potty. I was fully dressed with Nick's pj's in one hand, car keys in the other when he finally got it under control - took over an hour. Lee, bless his heart, brought down the paper towels and 409 to clean up the murder crime scene. We tucked Nick in the upstairs guest room next to ours so we could hear him if he got in trouble again. Apparently it was Kelsey that finally came to his rescue as he hollered for help. As I was giving him a kiss goodnight, avoiding the tissue stuck up his nostril for good measure, he grinned and said, "Mom, can you hear me now?" Then when I left to go to my room, he continued to say, very loudly, "Hey, MOM! I'm having a hard time in here!" "Hey, MOM! Can you hear me?" Then he'd chuckle - he's his own best audience, grinning ear to ear. We're a twisted, sordid family. And yes, I'm thankful for that, too!
Goodnight, my angel friends. Happy Thanksgiving
Monday, November 23, 2009
It never was about the race,
But all about her smiling face
And never ‘bout the given prize,
But always ‘bout her plaintive eyes
We first began as though a team
That shared a very special dream,
But Dorothy’s witch spoke up to say,
“You cannot run, you cannot play”
So even though she wasn’t there.
Joella’s spirit rode the chair,
And as it is, each day and night
She showed the way, and led the fight
My plan was just to push the chair
And pray about who wasn’t there
And through the thin and all the thick,
My thoughts would be on her and Nick
But that was not what fate had planned,
In ways that I can’t understand
There never was a time that I
Was in control though I would try
It seemed to me the chair was more
Than even I had bargained for
It never was too hard to roll
It carried me and thrilled my soul
No hill became too steep to climb,
(Though no one envied me my time)
Each mile marker passed right by
As I continued just to try
I thought of course of slowing down,
Or walking in some parts of town,
But when each tempting stretch appeared
The chariot rolled and I just steered
Of course the crowd stood by our side,
Not knowing who had got the ride,
And all they saw was just the chair,
No image of the spirit there
When it was done, no one could see
The fighter who had rode with me.
Not one of them could ever know
The power of our A-I-O….
fyi - A is for Adapt, I is for Improvise and O is for Overcome. Tony wrote a very nice story about his sister and why he participated in the marathon - he has pictures and everything. I'm going to have to get help to transfer his file to this blog - please check back next week.
Joella is still fighting, although the cancer seems to have the upper hand right now. Tony and his brothers are by her side, cherishing every moment with her.
Impressive, touching, real. Cancer warriors continue to march on!
Thursday, November 19, 2009
Here I sat Tuesday night, reading up on the latest updates, specifically Lisa Buechler: http://www.caringbridge.org/visit/ihavewhat - and can I say this website cracks me up every single time, because that is exactly what you say when the doctor gives you those words of diagnosis, "I have what?" Lisa is our new friend up at Huntsman as she is fighting the exact type cancer as Nick, in the same original place - the sinus. She has additional complications of health issues before cancer was ever introduced to her life. I continued to read that a "friend of Nick & Lori" came to help Lisa on Monday. Lisa is confined to a wheelchair and has an aide help her to all of her appointments, except on Mondays. Our friend, Ruth Taillac, had also read Lisa's updates, and knew she needed some help with transportation. She made arrangements to drive to Lisa's apartment across town, drive Lisa's van equipped for a wheelchair, and assisted Lisa to her radiation appointment and back home. Now, I know Ruth as she has kindly invited me to Christmas and neighborhood parties in years past, but she is much closer to fairy godmother, Denise. Denise had just visited with me all afternoon at Huntsman while Nick was getting chemo and she never mentioned Ruth's act of kindness. Turns out she didn't know, either.
Denise and I spoke later and we determined that between the fairy godmothers (Denise & Jennie), myself and Ruth, we can make sure Lisa gets to her appointments on Mondays. Serendipity played a roll as I saw Lisa yesterday afternoon at Huntsman; I gave her a big hug and kiss and let her know Mondays would be taken care of. Lisa's relief and gratitude overflowed. Because Lisa is a transplant from Alaska, her support system in Salt Lake City is not as strong as Nick's. I think we can do something about that. Nick asked me if I'll get emotionally attached (because he does) and I responded, "I already am!"
Ruth, thank you for your kindness. So many people think about helping, but can talk themselves out of it before the thought is even complete. Do we risk the emotional attachment? Do we compromise the convenience and comfort of our own family to reach out to a stranger? Ruth looked beyond Nick's story to Lisa's story and found a need she could fulfill. She has set an amazing example for her husband and children, her community, her church and those that observe from afar. All because she gave someone a ride.
Just one story among many, I'm sure. Timing is perfect, as always, because my maternal heart needed a little comfort. Nick's ANC count (number of baby white cells being produced) is .7; he is supposed to be at 1.0 before chemo can be administered but the powers that be decided to go ahead anyway. I'm worried his counts are that low after having 3 weeks off chemo (rather than the usual 2 weeks). He slept for 15 hours last night and is totally wiped out. All I can pray for is that the remaining cancer cells are wiped out, too.
We also ran into the young man - Mike Gorley - who visited Nick during his absolute worse in 2007, doing radiation and chemo at the same time. Mike just celebrated his 2-year remission anniversary. He had the exact presentation of cancer as Nick, except he had embryonal rhabdo vs. alveolar rhabdo that Nick has - alveolar is more aggressive. I encouraged him to visit the online rhabdo support group as we need a good survivor story right now.
With loads of gratitude,
Tuesday, November 17, 2009
Anyways, it was a great trip and I never find myself looking for things to do when I am there. We did some jeepin, horseback riding, roping, bar-b-que (choices of buffalo, elk, beef, and lamb), and even a hike up to Dead Horse Point and The Top of the World. Really cool.
I was also given some awesome gifts from some awesome people. First, Robin, who is a cowboy at heart and a very nice guy who is also a cancer survivor gave me a goalie stick he has been hanging on for years that was once used by a pro goalie. Name doesn't come to me now but it doesn't matter. Awesome and thoughtful gift. It will be going on the wall between my Crosby and Sundin jersey! Then the night of the bbq, the true horse whisperer, James, gave me a "moki marble" which is a piece of volcanic rock that has slowly been whethered over hundreds of millions of years to become this small "marble" looking piece of rock that is really dark and said to contain a lot of energy. Once again, very thoughful and awesome. Thanks James! Then last but not least, after learning more on the art of roping steers with Colin and James, Colin said he wanted me to take one of the ropes home with me and keep practicing so that I can try it on a horse in the spring (I tried to get my mom to run but she didn't go for it). Awesome!!
It was just an awesome weekend. Thank you Jennie and Dean!!
Anyways here are some pics.
ps... did my chemo today that was supposed to be my last but 2 more still to go. It sucks but gotta do it.
pss... I signed up for classes next semester at the U so I will be a college kid again as of Jan 11.
Monday, November 16, 2009
Dr. Chen gave her opinion from Taiwan - she recommends 6 more rounds of chemo - 3 of cycle #1 and 3 of cycle #2;
Dr. Grier gave his opinion from Boston - he thinks Nick's chance of recurrence is really, really high and chemo is only shot to fight it. Would like to see Nick finish up 6 months of treatment, using cycles #1, #2 & #3. He also respects Nick's decision to stop treatment.
Dr. Gouw gave his opinion from Huntsman - his suggestion is somewhat of a compromise as he a little more optimistic than Dr. Grier - 3 cycles of #1, which is one-day infusion of vincristine, dactinomycine and cyclophosphamide. This is the cycle that put Nick in the hospital last time, so he'll reduce dosage. This will also qualify Nick for Ariad's Success clinical trial, should Nick decide to enroll early next year. Dr. Gouw, Chen & Albritton all agree to save cycle #3 if relapse should occur.
Nick, of course, has his opinion, believing today was to be his last day of chemo treatment, just waiting to hear which cycle they decided upon. Discussion in doctor's office today was a lot to digest and filter through, leaving the decision ultimately with Nick. How many more? What a ridiculous decision for a 20-year old to make; he decided to go with 3 more. He'll have the first one tomorrow, 2nd one on Dec 7th and last one on Dec 28th.
He was to go with his dad on a cruise to New Zealand on Dec 31st. This would put him at risk with his counts low and feeling pretty crappy - he isn't sure about going now. On a positive note, he will go ahead and register for at least one class up at the U of U for spring semester.
On more positive notes, he went to Moab, Utah this past weekend - more pictures and stories to follow in a day or two. Lee and I hosted a couples retreat in Scottsdale, Arizona this week and my highlight was sharing a video on Nick's journey. Nick's little sister, Kelsey, and her team "Bukoos" took first place champions in the 12 & under softball tournament in St. George - first away softball trip with just her and her dad. And his other sister, Carly, tended to the house while we were all away, and the dogs survived!
Please say an extra prayer for the Paganelli family - visit http://www.caringbridge.org/visit/jordanpaganelli as well as for Zach McCulloch and his family - visit http://www.carepages.com/carepages/SublimeLBC. Rhabdo is a particularly brutal cancer and although there are innumerable numbers of children I follow, it is the young men that are Nick's age that really hold a special place in my heart.
May blessings of Thanksgiving be in abundance to you all. Thank you!
Tuesday, November 10, 2009
Tuesday, November 3, 2009
So now I have a super rad jersey to wear to the Kings vs Penguins game this Thursday with the Raitt family. There might even be a chance of meeting some of the team!! Lets cross our fingers.
But I want to thank Brad again for the super awesome gift! It was truly one of the coolest things I have ever received. Crosby is my idol! ha
Anyways here are some pics:
Note from mom:
Brad Salmons and I have corresponded occasionally over the past several months as our sons had so much in common: both worked at Discount Tires, both played high school hockey, both diagnosed with rhabdomyosarcoma at age 18. I have mentioned Ryan in previous posts as he referred to Nick as his "twin in another city". Sadly, Ryan passed away May 1st, 2009 after a valiant effort. He built quite a legacy through his perseverance, attitude and spirit - affecting all those who knew him. Brad and Ryan began to bond with the players of the Columbus Blue Jackets, as the entire team embraced Ryan and his fight, "Refuse to lose!" Brad and Ryan's story can be found at: http://www.teamsalmons.com/.
Brad has continued to read Nick's blog and when he saw that Nick was going to see the Penguins, he called me to ask if it was ok to do something special for Nick's visit. He has become quite close friends with several of the NHL players and they are all willing to do anything possible to help out a fellow hockey kid in need of a boost. Brad's tender heart has begun to heal by his help of others and without embarrassing him, there are many young cancer survivors who are a little (a lot) better because of Brad's acts of kindness. God bless you, Brad, as Nick is one of them. You represent Ryan's memory and legacy with honor and grace. Thank you.
Lee commented that it would take surgery to wipe the grin off Nick's face, but I don't think even that would do it! He kept saying over and over with the jersey sitting on his lap, fingers running over the fabric, "This is the coolest gift I have EVER received, this is amazing, I can't believe it!" He spoke to Brad later this evening and I'm not sure if he was able to express his gratitude verbally to match how he felt internally.
Nick leaves tomorrow for California and I believe the motorhome will be a foot off the pavement the whole way there, Nick grinning all the way.
Sunday, November 1, 2009
There are 600 buffalo on antelope island, and we probably moved around 200 in the two days we were there. Saturday we spent 8 hours in the saddle just moving them 13 miles. They simply would only move if they wanted to. But today (sunday), we got them to a full on run right off the bat so it was a lot easier. Once those guys get moving they don't stop. I felt like Kevin Costner in Dances With Wolves when he is on the buffalo hunt at a full on run. I mean you are right there with them, and you can hear them gruntin' and runnin'. Its pretty loud! I think they were easier to push today since it was a smaller herd and not as many bulls.
Anyways it was a great time and I wont forget it. Thanks Colin for the invite and I plan on coming down in a couple weeks to learn how to rope some steers.
Here are some pics of the trip, couldn't get any close up pics of the buffalo due to the fact you had to be ready to "high tail" it out of there at any moment. Only had to do it once! Call me a quick learner... ha
Thursday, October 29, 2009
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
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,
Tuesday, October 27, 2009
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
"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
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
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
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)
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 www.curesearch.org. 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 (http://www.curesearch.org/) 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
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.
Sunday, September 27, 2009
Saturday, September 26, 2009
He had his first radiation treatment on Thursday. He asked Dr. Hitchcock if she needed to watch out for his hip (relatively close to his abdomen) and she said, no - we're concerned with your bone marrow. Hmm. Hadn't heard about that one either. We'll worry about that on Monday, too. Otherwise, Nick hasn't had any side effects from the radiation yet. Next week will be a different story; he has to go in for 2 different chemos Monday through Friday. We have to show up at 8:00 a.m. and the infusions will last about 5 hours each day. Don't forget the daily radiation, intermittent lab draws, and Dr. Randall just for fun. It's going to be a rough week. When Dr. Gouw confirmed Nick's treatment protocol with Dr. Grier in Boston, he told him, "We've got the big guns out for Nick." Dr. Grier replied, "No, we want to give him the GIANT guns." Fine.
Nick wasn't able to go to Southern Utah this weekend; apparently the elk are done bugling for the season. But I think he'll make the Utah football game this afternoon - always something fun. He went and had his friend give him a Mohawk (Cory, I'm telling your mom...). I asked Nick, "Don't you treasure every strand of hair on your head?" His hair will be falling out any day now (by chemo, not by me pulling it out). We are also enjoying the grandparents visit - always lots of good food.I've mentioned our friend, Lisa from Alaska, that we met a couple of weeks ago. She had
We also found another young man with rhabdo - Brian Orgill - he is 18 and a local here in Utah. His website is: https://www.carepages.com/carepages/faithineveryfootstep. He has just recently started up battle #2 and his family could use the additional support, too.
Thank you, Nick's Warriors, for including Lisa and Brian in your thoughts and prayers. I think we can wait a few days for Nick - they need your prayers today.
With love and faith,
Monday, September 21, 2009
He also managed to go horseback riding with Melanie Davis as soon as he got home from hospital. Nick doesn't waste a second! His body is tired, however, and is taking some serious 4-hour power naps during the day. His next adventure will be visiting some friends in Logan (Utah State) later today and then in southern Utah this weekend elk hunting (elk watching, more likely) with some friends.
Grandparents arrive today. Nick has to have an echo today, too. He starts radiation on the 24th; needs to have 25 treatments so we anticipate him finishing up radiation on Oct 28th. I think there may be some changes in his treatment plan as we were all so surprised by his counts bottoming out. His body may not tolerate the plan they have in mind. One day at a time and today is a good one!
Love to all,
Friday, September 18, 2009
As we dinked around for the next half hour, his fever dropped to 100.3. Nick decided he would wait it out at home through the night on his own, monitoring his own temp. He called the oncologist at Huntsman, who promptly chuckled at the mere folly of this idea and "highly discourage you from staying at home tonight". The doctor is right, of course - without any white cells to help fight off any infection, Nick could be come ill with a virus that could turn lethal in a very short amount of time. We made it to Huntsman by 11:30 p.m. Thursday night. I swear, as soon as our feet hit the Huntsman property, Nick's fever vanished.
Fast forward 12 hours and Nick is on iv antibiotics; fever is still gone, however his counts are still critical. We got up early in the hospital and he had his regularly scheduled ct scan of his abdomen done. We met with his surgeon, Dr. Mulvihill, who declared Nick's abdomen nice and healthy, ready for radiation treatment next week. He also had to have a chest xray and ekg to rule out pneumonia and heart damage (heart is the first to get weak when an infection shows up). 4th Floor entourage of docs have locked Nick to the hospital and won't even consider letting him go until his counts come up, hopefully by tomorrow morning. Nick is enormously disappointed.
He rebounded fast, though, and I left him a couple of hours ago with him eating pizza with Mark & Ty. His sister Carly and fairy godmother Jennie also visited today.
Before signing off, here are a couple of stories I'd like to share about Nick.
About a month ago, Lee and I were talking to Nick about a workshop exercise where people would take their troubles and deposit them into the middle of the room. They could then come up and pick up someone else's troubles and leave their own behind. Result of exercise is that most people end up picking their own troubles again because they always seem workable when compared to others. Nick commented quickly that he would leave his behind in a heartbeat. He thought it through for a couple more minutes, then he said, "But that would mean someone would have to take mine...I wouldn't want that." This was a proud maternal moment, I have to say.
The second story happened on Monday when he had to get his tummy mapped for radiation. He had to strip from the waist up, lay on a table with his hands over his head and they would place a drop of ink on his tummy where they wanted to pinpoint the radiation beam and pierce his skin with a needle - yep, a radiation tattoo. However, when they were checking out their accuracy and Nick was under the machine from waist up, the young female assistant delicately came over to Nick's side and said, "Nick, sorry but we are going to have to take your pants off." Remember Nick has his hands up over his head with his body in a machine and can't see what is going on. He just replied, "Oh, this is so going in my blog..." The young assistant just giggled and she unbuttoned his pants (undies still on, thank you very much). Nick would holler at her, "Awkward!" Nick told me, "It wasn't good for the self-esteem, Mom, when she giggled." We had to go up to Clinic E and he couldn't wait to talk to his nurse buddies - Vanessa & Kelsey. He asked them, "Hey, is that normal protocol?" and they both vehemently shook their heads, "No, Nick, they aren't supposed to do that!" and then laugh themselves sick, especially when Nick concluded, "I think that girl owes me money!" My goodness...
Stay tuned - pay per view, it looks like. Thank you for the effort, Michael Rouse, you're a great friend! Hope you guys have a blast!
Thursday, September 17, 2009
Friday night games started at 6:30 and 8:00 on 3 fields. Wes White did a great job of joining the teams together to remind them what the tournament represented and introduced Nick. These games are of a little different mindset as the umpires call anything close at home as "safe" - because that is how the players earn money - by pledges based on runs scored by their own team. Fairy godmother, Jennie, came early to help me stock the trailer, set up registration and man the concessions. I remembered to bring softballs this year, but forgot score book paper for our scorekeepers. Nick had a full day of chemo on Wednesday so wasn't feeling too well Friday night, but he was there for a few hours regardless. Didn't stop Carly from asking him to go get her a pizza while she and her friends ran the scoreboards up in the booth. We all went home smelling like dirt and excited for the next day.
Syd, Cali, Kelsey (Nick's sister), McKell & Rae
We were supposed to wake up at 6:00 a.m. to be back at the fields at 7:00; woke up at 6:35. Made it there by 7:05, not pretty, but there. Kelsey's team, Bukoos, lost their first 2 games early but it turned out to be a blessing in disguise for me. The team filled in to be scoreboard operators, concession stand volunteers and miscellaneous errand runners. We also had several volunteers from Bonneville High's Decca group, thanks to the leadership of Ralph Andersen - one of the umpires who has been raising awareness for Nick's Warriors since last spring. Nick's buddies came to help - Ty, Mark, Kyler & Kory, Carly, Becky, TJ, Colton, Chris, fairy godmother Denise and her husband Jerry, Camille Thornley, Jon & Bernadette McGowan, Wes White, Ren Parkin, Sheri & Heather Stuki and of course, Nick's dad Todd and stepdad Lee.
The skills contest was a blast. Just when everyone is hot, tired and hungry, the music starts to play and pretty soon, everyone is singing along to the songs and getting excited about the competition. Wes hosted the activities and it went fairly smooth with lots of happy faces. Winners had their picture taken with Nick and prizes were handed out. I was a little worried about a couple of the teams, maybe they were wondering why they signed up for such an unconventional tournament. But when I asked the coaches and players if they had fun, they enthusiastically responded "YES!", grinning from ear-to-ear.
Kelsey, Nick & Cali
Play resumed after the skills contest and one-by-one, teams were eliminated. As teams lost, tee shirts would be handed out and we took the opportunity to thank the coaches and players. Lee and Wes did a great job but at one point, they were busy and I had to hand them out to a newly eliminated team. As I stood there with the shirts, I asked the girls if they had a good time. And then I promptly burst into tears, thanking them for coming and the impact they each have given to fight childhood cancer - you know, in that girl voice with about 7 different octaves. The coach also wiped away tears while the girls just looked at me, silently saying, "Ok, I'm uncomfortable now..." Not at all what I wanted to convey. I went looking for Lee and told him he had to do the rest of the teams, but when I looked at him, he was emotional and said he didn't do any better than I did. We doubled over in laughter at that point.
Actually, Lee was terrific in his talk with the teams. He would ask them if they had fun, if they worked hard, if they were tired and was it worth it? He then explained children their own age have cancer and they work harder, every day, and always come back to keep fighting. He reminded them where the money was going from the tournament (Nick doesn't keep a dime) and he humbly thanked them for being such wonderful and true warriors. Sorry, Sliders - that was really what I wanted to say to you...
We had one umpire get hit with a bat in his forearm and had to go get xrays (turned out to be a deep bruise, thankfully), but this meant the head of ASA umpires - Jerry Coleman - had to come out to the park after already calling 4 games in the morning and leave the comfort of his couch with football on tv. He called two more games and was ready to leave when Lee and I approached him. He said, "Oh no, there aren't more games, are there?" We explained the other two games going on were running behind and we needed him to call the 12u championship game. He looked at the ground, looked at the field on the left, the field on the right, sighed heavily then said, "Ok, I'll START this one, but as soon as the other game is over, the other ump needs to come over." Aw...nice guy! I want to give a special thank you to the umps - they donated at least one game each, took crap from parents and coaches that would occasionally forget this was a charity tournament and worked non-stop in the heat. A couple of the umps gave up an opportunity to call college games to be with us, one of course, was Ralph Andersen. Ralph also donated 6 cases of water with "Nick's Warriors" on the label for us to sell and for the championship game, he changed into a fresh, clean uniform - shoes, too - because he wanted Nick's tournament to be first class. Ralph and Scott were there from 7:30 a.m. until 10:30 p.m.
Hot Shotz won first place in the 12u and Predators took the 14u. Congratulations to both teams! Check out Nick's website, http://www.nickswarriors.org/, to see all the pictures. I'll have the final numbers in a couple of weeks after we collect all the pledges.
Nick fared well, including going home to have labs drawn. We were all exhausted but ready to do it again next year.
Nick & Caden
A special thank you to Travis Flint and the city of Roy - they donated the fields, crew and the coke trailer. That is HUGE! Also to all the volunteers - without you, the tournament wouldn't have made it. It was hot and chaotic, but you all sailed through the day and helped make it a success! Thank you, Jennifer Stahle, for the prizes you donated; Tanya Gall for making the raffle a success; Coach Poll for the donated bat; Jen Reynolds for not letting me cancel the tournament; Joyce Stacey for donating the tee shirts; Brandon Newby for the art design; Jarrett Anderson for the enormous amount of time you donated to the concession stand; all the coaches that donated the extra $100 per team when the registration fee was lowered; the several moms who tore out extra scorekeeping pages from their personal books; and to all those that I have mentioned in the above story - THANK YOU!
Friday, September 11, 2009
He'll get another dose of vincristine the next two consecutive Wednesdays. It really gets fun on the 28th when he goes in Mon, Tues, Wed, Thurs & Fri for 6 hours each day to receive 2 different chemos. They asked him to consider inpatient, but he said he wants to come home at night. I kinda like the outpatient wing - lots of chatting in a really busy room. We finally got to meet our new friend, Lisa, who is from Alaska. She has the exact presentation of cancer that Nick did but her tumor is on her left side. She is being treated by Dr. Gouw, too. She is alone here in Utah and facing a major surgery later this month. We hope our new friendship will help ease her fears as Nick has already gone through what she still has yet to face. She, too, is very courageous with deep faith.
Tonight our charity softball tournament begins - we have 19 teams playing this year, ages 9 through 15. We've encountered numerous setbacks but it all seems to work out regardless. I hardly cried or swore yesterday so it's going to be all right. I love the energy the young girls bring to the field and to my heart. Batter up!
Love to all,
Wednesday, September 2, 2009
Saturday, August 22, 2009
I wanted to share her latest card to Nick:
"The most beautiful stones have been tossed by the wind and washed by the water and polished to brilliance by life's strongest storms." She said he is a 22 carat diamond now.
Thank you, Card Fairy. We love you.
Sunday, August 16, 2009
Wednesday, August 12, 2009
Our appointment took the entire morning. Dana Farber is an amazing hospital but the Jimmy Fund floor for pediatrics is very difficult for the tender hearted. So many children, so very sick. Some are as tall as Nick; some came in a stroller. Some can barely walk with assistance; some run as fast as they can to play with the toys. Some are crying; some politely tell their nurse "thank you" for their stickers.
Dr. Grier asked Nick what he thought his own prognosis is and what his expectations from him are for his treatment. Nick expressed his prognosis to be anywhere from 10 to 40%; Dr. Grier felt 40% was being generous. Nick hopes Dr. Grier will establish a treatment plan for his recurrence; Dr. Grier honestly admitted they don't know what to do. That being said, he discussed three different chemo combo options to choose from, all outpatient, all with similar toxicity levels (substantially less difficult that Nick's previous 16 rounds). After drawing on the paper liner used for the exam table, he and his PA decided to go ahead and throw in the kitchen sink, do all three options. In other words, let's attack the microscopic residual cells with all artillery we have left now, because if he relapses again on any one option, any additional treatment would be ineffective.
We discussed radiation again and although we still haven't confirmed anything with a radiation oncologist, Dr. Grier simply stated chemo will only prolong relapse, while radiation is Nick's only chance for a cure (remission). Well, when you say it like that...
Dr. Grier will be working with Dr. Gouw in setting up the specifics (this will involve EIGHT different chemos along with radiation thrown in there somewhere) for approximately eight to twelve months. All chemos, with the exception of vincristine, will be on the regular one week on, two weeks off schedule (he will receive vincristine once a week for four weeks straight).
Because Nick's spleen has been removed (the spleen is the bacteria filter for the body), if he EVER has a fever of 101 or higher, he has to go to ER for a blood culture and antibiotics immediately. We are all encouraged to get flu vaccinations. Although Nick is unhappy with the length of treatment, it should not stop him from having somewhat of a "normal" lifestyle, maybe including going back to school. It'll all depend upon how the chemo will make him feel.
Nick also has an irregular heartbeat; something we need to check up on when back in Utah (probable side effect from the "red devil"). I don't think he'll start up with treatment until the first week of September so he has a couple of weeks to have fun and enjoy his baby fine hair on his head (Dr. Grier paid him a quarter so he could rub his head - way funny!).
So that's it. The guessing game is continuing but it's a plan. We have asked Nick to rely on his own instinct as well, to listen closely to what his body tells him, and to consider looking at alternative and complimentary ideas, too.
We'll be home tomorrow night. Loads of gratitude to all for checking in on Nick!