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
Monday, January 31, 2011
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
Thursday, January 6, 2011
Home!
What a crazy 27 hours! Last night, the floor oncologist said Nick would be hooked up to a heart monitor to keep an eye on his heart rate. He also said they would be scanning his legs for more clots, possibly having another "procedure" placing a screen/filter in his legs to stop any clots from passing. I was gone during this conversation.
But by this morning, the heart monitor was never brought in and the scan on his legs was canceled. However, they did schedule an echo for his heart as two different lab result levels came back as high, possibly indicative of heart damage/stress. "I'm sorry, what?" No worries, echo came back just fine and levels were adjusting nicely. We're thinking Nick's heart was busy beating the crap out of the clot, swearing it to never return.
After informing Nick of the complications that he may encounter with the blood thinner (too disgusting to post here), Nick was released by 3:00 p.m. this afternoon, armed with 50 Lovonox injections to continue with on at home, twice a day.
Short stay but he still had quite a few guests stopping by to visit. He is feeling pretty good, eating well and looking forward to watching season two of "The OC" with his best girlfriends tonight.
Thanks, everyone - your prayers kicked in once again and Nick survived a potentially dangerous medical situation. We are all blessed beyond measure and are very humbled.
With love,
Lori & Nick
But by this morning, the heart monitor was never brought in and the scan on his legs was canceled. However, they did schedule an echo for his heart as two different lab result levels came back as high, possibly indicative of heart damage/stress. "I'm sorry, what?" No worries, echo came back just fine and levels were adjusting nicely. We're thinking Nick's heart was busy beating the crap out of the clot, swearing it to never return.
After informing Nick of the complications that he may encounter with the blood thinner (too disgusting to post here), Nick was released by 3:00 p.m. this afternoon, armed with 50 Lovonox injections to continue with on at home, twice a day.
Short stay but he still had quite a few guests stopping by to visit. He is feeling pretty good, eating well and looking forward to watching season two of "The OC" with his best girlfriends tonight.
Thanks, everyone - your prayers kicked in once again and Nick survived a potentially dangerous medical situation. We are all blessed beyond measure and are very humbled.
With love,
Lori & Nick
Wednesday, January 5, 2011
A new complication
Monday night, Nick was having significant pain in his back and left shoulder, affecting his left arm, whenever he took a deep a breath or moved in certain positions. Yesterday morning, I sent an email to Nurse Katie letting her know, in case Dr. Gouw wanted to see Nick when we came in for labs. She made arrangements to have Nick seen in Urgent Care instead. Dr. Dunson was great and really took his time, being very thorough. His blood pressure was very low and he was light headed so they juiced him up with a liter of fluids to help with his dehydration. Dr. Dunson thought the back pain was due to the drain tube, which has a tendency to wind itself up behind the diaphragm. However, the pain in the shoulder was confusing, indicative of a blood clot. They do not want to take the drain out as they expect the ascites to return so a CTA (ct scan with angiography) was ordered to check out his blood vessels. Due to his being allergic to ct contrast, scan was ordered for today at 10:00 a.m. and he could get premedicated 13 hours prior.
Sure enough, a blood clot was found in his lower left lung, about in the middle of his two painful areas. He was admitted to our long lost second home on the fourth floor. He will have two blood thinning shots a day in his tummy to ward off any further clots, which could be life threatening. Not sure where the clot came from but apparently this is common with cancer patients. He should only be in hospital for a couple of days. Bad news is that because his cancer is active, he will be on blood thinner shots (Lovanox) while he is on treatment. He will learn to give them to himself by the time he is checked out. He isn't happy about this, the shots sting pretty badly and he will need two a day for awhile.
Another learning opportunity. The nice part is that Dr. Dunson and his nurses were fantastic, very personable and caring. Also we have seen some familiar faces here on the fourth floor, all who care for Nick personally, too.
Lee, Grandma and Grandpa all left this morning before the scan. Carly started school today back in Orem. Todd (Nick's dad) will spend the night with him tonight. Kelsey and I will bring dinner and all his usual overnight stuff - favorite blanket, computer, toothbrush... Nick's cell phone doesn't have reception but the direct line to his room is 801-587-4521. He is pain free but very fatigued; his heart rate is 130. He's bummin that he is feeling so crappy during his "good week".
Stinking cancer...
Lori
Sure enough, a blood clot was found in his lower left lung, about in the middle of his two painful areas. He was admitted to our long lost second home on the fourth floor. He will have two blood thinning shots a day in his tummy to ward off any further clots, which could be life threatening. Not sure where the clot came from but apparently this is common with cancer patients. He should only be in hospital for a couple of days. Bad news is that because his cancer is active, he will be on blood thinner shots (Lovanox) while he is on treatment. He will learn to give them to himself by the time he is checked out. He isn't happy about this, the shots sting pretty badly and he will need two a day for awhile.
Another learning opportunity. The nice part is that Dr. Dunson and his nurses were fantastic, very personable and caring. Also we have seen some familiar faces here on the fourth floor, all who care for Nick personally, too.
Lee, Grandma and Grandpa all left this morning before the scan. Carly started school today back in Orem. Todd (Nick's dad) will spend the night with him tonight. Kelsey and I will bring dinner and all his usual overnight stuff - favorite blanket, computer, toothbrush... Nick's cell phone doesn't have reception but the direct line to his room is 801-587-4521. He is pain free but very fatigued; his heart rate is 130. He's bummin that he is feeling so crappy during his "good week".
Stinking cancer...
Lori
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