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,
Lori
Tuesday, February 15, 2011
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 -
Lori
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 -
Lori
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
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
Monday, January 31, 2011
Outpatient!
When insurance declined temozolomide (aka temodor), Dr. Gouw showed them by replacing it with decarbazine, which is similar. So, yay, another new chemo Nick hasn't had yet. Good news is that it can be given via iv through outpatient, vs. temodor via iv through inpatient (only way insurance would approve it). Nick will be on the new stuff for five days this week, along with irinotecan for five days this week and five days next week.
Poor Dr. Gouw broke his ankle last week, so he is now zipping around the hospital on a scooter. He has also been busy learning about other phase 1 trials; one at Sloan Kettering and another locally. Interesting stuff. I'm very glad he is investigating everything; there is so much up and coming in new treatment. Next set of scans are February 22nd with round #27 starting on the 23rd.
One interesting observation: there was a patient sitting next to Nick - a man in his early 30's, waiting to get a bag of platelets. The nurse was trying (and succeeding)to be compassionate, listening to his problems - and there were a lot - mentally, physically, financially. Yes, he has troubles of biblical proportion, but he also has a negative attitude to match. Finally, he just shut down and quit talking. His energy was palpable and we were all silently glad he didn't have anything more to say. Yet, three chairs down on the other side was one of our favorite patients - all of us love this guy! Same age as the first man, same insurmountable obstacle with the monster of cancer, but he can get the entire medical staff roaring with laughter regaling his tales of naughty behaviour in the xray room, or handing out candy and visiting one-on-one with EACH patient in the waiting room - actually making eye contact and sincerely interested in everyone he talks to, while waiting for his next appointment. He was there today visiting someone else getting treatment, while he dragged his iv pole along behind him with his own chemo bags hanging. Everyone on the entire floor knows his name; everyone asks about him; everyone prays for him.
I once had a friend who posed a question to her pastor about God's mercy and his reply was, "Mercy is for those who need it, not always for those we feel deserve it." I thought of this quote as I realized the first man sitting next to Nick really needed our mercy to help his troubled soul, while the second man, although his own mortality is questionable too, has a very strong and blessed soul. For me, it isn't always easy to pray for someone with impactful, negative energy, but perhaps it is the most important prayer to offer. I also think the second man's outpouring towards others is what made a difference in his attitude and strength. So, I have two special prayers to say tonight.
Hmm, must be in a philosophical mood today. Nick is doing quite well, by the way - gained 3 lbs since last round.
That's it for now... we're looking forward to the Super Bowl game - go Packers!
Thanks to all for the prayers, it makes such a difference!
Love Lori
Poor Dr. Gouw broke his ankle last week, so he is now zipping around the hospital on a scooter. He has also been busy learning about other phase 1 trials; one at Sloan Kettering and another locally. Interesting stuff. I'm very glad he is investigating everything; there is so much up and coming in new treatment. Next set of scans are February 22nd with round #27 starting on the 23rd.
One interesting observation: there was a patient sitting next to Nick - a man in his early 30's, waiting to get a bag of platelets. The nurse was trying (and succeeding)to be compassionate, listening to his problems - and there were a lot - mentally, physically, financially. Yes, he has troubles of biblical proportion, but he also has a negative attitude to match. Finally, he just shut down and quit talking. His energy was palpable and we were all silently glad he didn't have anything more to say. Yet, three chairs down on the other side was one of our favorite patients - all of us love this guy! Same age as the first man, same insurmountable obstacle with the monster of cancer, but he can get the entire medical staff roaring with laughter regaling his tales of naughty behaviour in the xray room, or handing out candy and visiting one-on-one with EACH patient in the waiting room - actually making eye contact and sincerely interested in everyone he talks to, while waiting for his next appointment. He was there today visiting someone else getting treatment, while he dragged his iv pole along behind him with his own chemo bags hanging. Everyone on the entire floor knows his name; everyone asks about him; everyone prays for him.
I once had a friend who posed a question to her pastor about God's mercy and his reply was, "Mercy is for those who need it, not always for those we feel deserve it." I thought of this quote as I realized the first man sitting next to Nick really needed our mercy to help his troubled soul, while the second man, although his own mortality is questionable too, has a very strong and blessed soul. For me, it isn't always easy to pray for someone with impactful, negative energy, but perhaps it is the most important prayer to offer. I also think the second man's outpouring towards others is what made a difference in his attitude and strength. So, I have two special prayers to say tonight.
Hmm, must be in a philosophical mood today. Nick is doing quite well, by the way - gained 3 lbs since last round.
That's it for now... we're looking forward to the Super Bowl game - go Packers!
Thanks to all for the prayers, it makes such a difference!
Love Lori
Wednesday, January 26, 2011
Kind of quiet...
This week and last have been quiet - nice! Nick is either snuggled up in his bed reading the "Hunger Games" trilogy or out the door to Wendover with the guys, Logan with the girls and now in Vegas with his dad. His blood counts remained good and he tried to drain more of his tummy, but 1/2 liter - so chemo is still working.
Next week he starts another round, but we are having trouble getting one of the chemo treatments approved. Conversations went as follows: "It's approved and will be mailed today"... "Oops, we have to get pre-authorization first"... "Denied." Insurance has denied the pill form for out-patient but will approve it for in-patient, through an iv. Cost saving at it's finest hour. Our master of cutting through the red tape nurse, Katie, is on the warpath (in a nice way, of course). She is creative so we'll see what happens.
We got a new scanner at home and I've been going through old photo albums and can't help but post these pictures of Nick - they make me smile.
I'll update more next week. Thanks for checking in...
Lori
Next week he starts another round, but we are having trouble getting one of the chemo treatments approved. Conversations went as follows: "It's approved and will be mailed today"... "Oops, we have to get pre-authorization first"... "Denied." Insurance has denied the pill form for out-patient but will approve it for in-patient, through an iv. Cost saving at it's finest hour. Our master of cutting through the red tape nurse, Katie, is on the warpath (in a nice way, of course). She is creative so we'll see what happens.
We got a new scanner at home and I've been going through old photo albums and can't help but post these pictures of Nick - they make me smile.
I'll update more next week. Thanks for checking in...
Lori
Monday, January 17, 2011
Happy 22nd Birthday, Nick!!!!!
Today is a great day!
Last week, Nick sailed through the rest of his treatment with his blood pressure and pulse maintaining a "picture of perfect health", says Nick. He celebrated his final day of treatment (for this round, anyway) on Friday by attending the Kevin Hart performance (he is a comedian) with Kelsey, his friend from Huntsman. Other than getting his car locked in the parking garage ("what sign?), they had a fantastic time.
Saturday was the postponed Brower family holiday party; there is something about being surrounded by children that brings a smile to every one's face, especially Nick. His fatigue started to really kick in yesterday, but didn't stop him from wearing his new cowboy boots his dad bought him for his birthday.
I suspect tonight will be a low-key birthday celebration as his appetite and energy have disappeared. But you know Nick - he has a trip planned for Vegas before he starts his next round in a couple of weeks. We are crossing our fingers that his counts don't drop too low, especially his platelets, which could be worrisome now that he is on blood thinner shots.
Happy birthday, Nick - the last year was memorable in so many ways. You are an amazing young man and we are all very proud of you!
Love Mom
PS: I'm very grateful for a few inspiring people who have touched the lives of some special children. Please visit the websites for their stories:
http://sports.espn.go.com/new-york/nfl/news/story?id=5991920
Mark Sanchez obviously had an angel on his shoulders on Sunday! Go Jets! (yes, spoken from a heartbroken Seahawks fan)
http://www.caringbridge.org/visit/vinnydigerolamo/journal
Visit journal posting dated 1/12/11
http://www.carepages.com/carepages/princessella/updates/
Nick thought this little one was a lucky duck!
You may have to sign in as a guest on the CaringBridge and CarePages sites but worth the effort to read the postings. People really do make a difference!
Last week, Nick sailed through the rest of his treatment with his blood pressure and pulse maintaining a "picture of perfect health", says Nick. He celebrated his final day of treatment (for this round, anyway) on Friday by attending the Kevin Hart performance (he is a comedian) with Kelsey, his friend from Huntsman. Other than getting his car locked in the parking garage ("what sign?), they had a fantastic time.
Saturday was the postponed Brower family holiday party; there is something about being surrounded by children that brings a smile to every one's face, especially Nick. His fatigue started to really kick in yesterday, but didn't stop him from wearing his new cowboy boots his dad bought him for his birthday.
I suspect tonight will be a low-key birthday celebration as his appetite and energy have disappeared. But you know Nick - he has a trip planned for Vegas before he starts his next round in a couple of weeks. We are crossing our fingers that his counts don't drop too low, especially his platelets, which could be worrisome now that he is on blood thinner shots.
Happy birthday, Nick - the last year was memorable in so many ways. You are an amazing young man and we are all very proud of you!
Love Mom
PS: I'm very grateful for a few inspiring people who have touched the lives of some special children. Please visit the websites for their stories:
http://sports.espn.go.com/new-york/nfl/news/story?id=5991920
Mark Sanchez obviously had an angel on his shoulders on Sunday! Go Jets! (yes, spoken from a heartbroken Seahawks fan)
http://www.caringbridge.org/visit/vinnydigerolamo/journal
Visit journal posting dated 1/12/11
http://www.carepages.com/carepages/princessella/updates/
Nick thought this little one was a lucky duck!
You may have to sign in as a guest on the CaringBridge and CarePages sites but worth the effort to read the postings. People really do make a difference!
Monday, January 10, 2011
Nick started round 25 today, a little concerned with his heart rate again - currently at 100. Looks like the clinical trial we've had our eye on with NCI is a no-go but may have some other options out of Sloan Kettering down the road.
In the meantime, I wanted to share something about Nick. He was asked to write a little story about his trials and "happy endings" for his friend, Makelle, who was giving a talk in church. She included other stories, too. We all went to hear her talk and she delivered it flawlessly. With Nick's permission, here is his portion of her talk:
"Once upon a time, I was a young 18-year-old kid ready to graduate high school when I was was suddenly diagnosed with a rare type of cancer. A cancer that I knew nothing about, and yet it was living inside of me, trying to take my life. A cancer that has forced me to spend three of the past four years of my life in and out of the hospital getting treatments. A total of 24 rounds of chemo, 58 days of radiation, 3 surgeries, and a countless number of nights at the hospital. Through my many visits to the hospital, I was able to see first hand how cancer affects so many people and their families. It soon became clear that I not only wanted to make changes in my life but I also wanted to help others in my situation get through their trials.
My happy ending is not that I have beaten the cancer that I am still fighting to this day. My happy ending is the gratitude and happiness that I get every year when I get to send a check through my foundation to charities of my choice. My happy ending is the emotional and spiritual peace I have found through years of summer camps with other young adults also fighting cancer. My happy ending is that I know I have made a difference and will continue to do so. There is no doubt in my mind that I would not be the same person I am today if it had not been for the trials in my life. They continue to affect me physically, emotionally, and spiritually everyday. "
Amen.
Love Lori & Nick
In the meantime, I wanted to share something about Nick. He was asked to write a little story about his trials and "happy endings" for his friend, Makelle, who was giving a talk in church. She included other stories, too. We all went to hear her talk and she delivered it flawlessly. With Nick's permission, here is his portion of her talk:
"Once upon a time, I was a young 18-year-old kid ready to graduate high school when I was was suddenly diagnosed with a rare type of cancer. A cancer that I knew nothing about, and yet it was living inside of me, trying to take my life. A cancer that has forced me to spend three of the past four years of my life in and out of the hospital getting treatments. A total of 24 rounds of chemo, 58 days of radiation, 3 surgeries, and a countless number of nights at the hospital. Through my many visits to the hospital, I was able to see first hand how cancer affects so many people and their families. It soon became clear that I not only wanted to make changes in my life but I also wanted to help others in my situation get through their trials.
My happy ending is not that I have beaten the cancer that I am still fighting to this day. My happy ending is the gratitude and happiness that I get every year when I get to send a check through my foundation to charities of my choice. My happy ending is the emotional and spiritual peace I have found through years of summer camps with other young adults also fighting cancer. My happy ending is that I know I have made a difference and will continue to do so. There is no doubt in my mind that I would not be the same person I am today if it had not been for the trials in my life. They continue to affect me physically, emotionally, and spiritually everyday. "
Amen.
Love Lori & Nick
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