It's Sunday night and we are totally, completely pooped! The tournament was a success, at least in my opinion. Pictures and stories to follow soon.
Thursday, I took Nick to get his labs done and by Thursday afternoon, I received a phone call that Nick's counts have critically plummeted to zero. His counts dropped on day 7 rather than day 10; obviously his bone marrow is struggling. I told Nick he was grounded and the arguing began. He started out by stating he HAD TO GO to the softball tournament, at least the skills contest, our personal favorite. He has been hospitalized twice for severe neutropenic fevers the last two times he has had this particular type of chemo treatment.
Later in the day, he said said in a tone that only a mother understands, "Mom, I think I have a fever", knowing that if anything registering over 100.5 means an immediate trip to ER. I looked over at him with instant fear, as Nick slapped his knee, looking at his grandma, saying "Every time... every time... she falls for it." That little stunt worked two more times during the day. Occasionally, I'd look over at him and only his eyes could be seen peeking over the couch pillows, looking at me with a twinkle as I heard him chuckle. Brat.
He won the argument. He did attend the first day of the softball tournament for the skills contest and the challenge slow pitch game against his sister, Carly. I just winced as he hugged and shook hands, with his compromise bandana hanging loosely around his neck (vs. the mask I wanted him to wear). He did have a hand santizer in his pocket, in case his pocket was wary of any germs, I suppose). But, no regrets. He had a blast and so did everyone else. Details to follow soon but for now, we're hitting the hay.
With love,
Lori
Sunday, September 12, 2010
Thursday, September 9, 2010
46 Mommas
Tomorrow, on September 10th, you may already know there is a program airing on all the television stations - "Stand Up 2 Cancer". What you may not know is that there is an amazing group of women - mothers with children fighting cancer - that shaved their heads to raise awareness for childhood cancer. I think there are at least 3 moms in the following video whose child has rhabdo. This will also be part of the nationally televised event - please click on the link below:
http://www.youtube.com/watch?v=8PR2wIgFqLw
I'm incredibly proud of these amazing mommas! What a statment they make!
We hope to do our part through the charity softball tournament, also starting tomorrow afternoon. The weather is clearing up (it wouldn't DARE rain) and everything is starting to fall into place. I would love to fall into bed. We have 20 teams registered and ready to play!
Nick's counts came back - zero is pretty easy to read. He's grounded. His counts don't usually crash this quick - his bone marrow just doesn't bounce back like it used to. We are arguing as I type about him attending the event - we're at a draw right now. The good thing is that he has been on antibiotics all week due to the infection he had earlier. I got the carpets cleaned and dogs groomed just in time!
Grandma & Grandpa arrived last night and Corey and his wife, Lisa, arrive on Saturday (they are representatives from First Descents). Aunt Chris & Uncle Stan are coming out on Saturday, too. This weekend will be a blast!
Loads of love to all...
Lori
Monday, September 6, 2010
September - National Childhood Cancer Awareness Month
It's that time of year again - September is National Childhood Cancer Awareness Month. Nick supports CureSearch because 95 cents of every dollar actually goes to childhood cancer research (rhabdomyosarcoma is a childhood cancer). Each year in the U.S. there are approximately 12,400 children between the ages of birth and 19 years of age who are diagnosed with cancer. About one in 300 boys and one in 333 girls will develop cancer before their 20th birthday. In 1998, about 2500 died of cancer, thus making cancer the most common cause of death by disease for children and adolescents in America. We feel CureSearch is doing a terrific job and are grateful for their work.
He also supports First Descents as it targets the young-adult cancer survivors in their adventure camps. The following stats from "I'm Too Young For This" website, validate Nick's desire to bring awareness to the young-adult generation of cancer survivors:
STATS & FACTS
(1) Each year, nearly 70,000 young adults(YA), aged 15-39, are diagnosed with cancer and roughly 10,000 will die due to the disease..º
(2) Over the past 30 years, young adults (15-39) have seen the greatest increase in cancer incidence than any other age group.¹
(3) The 5-year survival rates in YA has not improved over the past 30 years on par with other age groups..¹
(4) Why? Three reasons: delayed diagnosis, access to clinical trials and age-appropriate peer support that contributes to quality of life.º (Note that none of these reasons have anything to do with cancer research so helping YA doesn't necessarily mean white labcoats.)
(5) The #1 social issue faced by YA is isolation.
(6) Psychosocial research (quality-of-life) is tantamount to biological (clinical) research and the notion of survivorship vs 'cure'.²
(7) The entire medical community and cancer continuum at large is grossly uneducated as to how to effectively communicate with, diagnose, treat, support and follow-up with YA.
(8) Actual cancer 'research' in YA (all cancers) is different than cancer research in children and older adults. Donating your money to 'cancer research' today does not mean it will help young adults unless it specifically says so or if you specifically ask. Only a very small handful of young adult cancer research projects currently exist.
MORE STATS
(1) 1 in 50 Americans is between 18 and 40.²
(2) 1 in 50 Americans (18-40) is a cancer survivor. (est.)
(3) There are approximately 16 million Americans in college.²
(4) 1 in 100 college students is a cancer survivor. (est.)
Big box cancer organizations do not currently fund YA cancer research or support the most basic of social services to the YA support community of organizations like this one. If these statistics make you want to puke and you truly want to start helping this new generation of cancer survivors, give to the groups without middlemen, where you know where your dollar goes and there is measured impact. Don't get lost in a sea of 10,000 people racing for cures.
Please join me in wearing your gold ribbon pin this month (gold is the color for childhood cancer); let me know if you don't have one and I'll send it to you.
I was finally able to focus yesterday and our brackets have been posted for the WACKY Charity Softball Tournament this weekend (thank you, big time, Coach Travis!!!!). Nick has been feeling a teensy bit better so we all feel better today.
With love,
Lori
He also supports First Descents as it targets the young-adult cancer survivors in their adventure camps. The following stats from "I'm Too Young For This" website, validate Nick's desire to bring awareness to the young-adult generation of cancer survivors:
STATS & FACTS
(1) Each year, nearly 70,000 young adults(YA), aged 15-39, are diagnosed with cancer and roughly 10,000 will die due to the disease..º
(2) Over the past 30 years, young adults (15-39) have seen the greatest increase in cancer incidence than any other age group.¹
(3) The 5-year survival rates in YA has not improved over the past 30 years on par with other age groups..¹
(4) Why? Three reasons: delayed diagnosis, access to clinical trials and age-appropriate peer support that contributes to quality of life.º (Note that none of these reasons have anything to do with cancer research so helping YA doesn't necessarily mean white labcoats.)
(5) The #1 social issue faced by YA is isolation.
(6) Psychosocial research (quality-of-life) is tantamount to biological (clinical) research and the notion of survivorship vs 'cure'.²
(7) The entire medical community and cancer continuum at large is grossly uneducated as to how to effectively communicate with, diagnose, treat, support and follow-up with YA.
(8) Actual cancer 'research' in YA (all cancers) is different than cancer research in children and older adults. Donating your money to 'cancer research' today does not mean it will help young adults unless it specifically says so or if you specifically ask. Only a very small handful of young adult cancer research projects currently exist.
MORE STATS
(1) 1 in 50 Americans is between 18 and 40.²
(2) 1 in 50 Americans (18-40) is a cancer survivor. (est.)
(3) There are approximately 16 million Americans in college.²
(4) 1 in 100 college students is a cancer survivor. (est.)
Big box cancer organizations do not currently fund YA cancer research or support the most basic of social services to the YA support community of organizations like this one. If these statistics make you want to puke and you truly want to start helping this new generation of cancer survivors, give to the groups without middlemen, where you know where your dollar goes and there is measured impact. Don't get lost in a sea of 10,000 people racing for cures.
Please join me in wearing your gold ribbon pin this month (gold is the color for childhood cancer); let me know if you don't have one and I'll send it to you.
I was finally able to focus yesterday and our brackets have been posted for the WACKY Charity Softball Tournament this weekend (thank you, big time, Coach Travis!!!!). Nick has been feeling a teensy bit better so we all feel better today.
With love,
Lori
Saturday, September 4, 2010
Not feeling so well today
Nick had a tough time getting going this morning. I took his temperature and it was 100.5; not a big deal but still a concern. It creeped up until it hit 101 and that is when I made the call to Huntsman. His fever isn't too concerning as his counts haven't dropped yet (usually 10 days following chemo) so the onc on call gave us to go-ahead to take some Tylenol. Nick managed to get up from his bed to go to our bed (we have a tv and it is the first weekend for college football, after all). He's eaten very little and feels pretty cruddy. Biggest disappointment is not being able to go to Moab. "My mom won't let me" is what I have heard him say on the phone as he gives me a wicked grin.
We are also up to our elbows in alligators trying to get organized for the upcoming softball tournament next weekend. I'm having a terrible time trying to find the energy and focus to get organized. But I will, I will, I will... in a minute.
Till tomorrow,
Lori
We are also up to our elbows in alligators trying to get organized for the upcoming softball tournament next weekend. I'm having a terrible time trying to find the energy and focus to get organized. But I will, I will, I will... in a minute.
Till tomorrow,
Lori
No wonder he was uncomfortable...
Up at the U of U Hospital, Nick had his appointment to drain out some of the fluid in his tummy (his dad watched, I stayed in the safe waiting room). SIX litres! That's three large Coca Cola bottles! That's 13 pounds! Nick said the procedure wasn't painful (of course he had an ativan and pain pill before he arrived) and he has a new contender for having one of the nicest nurses ever helping him through it. She told him not to wait so long and she'll get him fixed up in a jiffy. He felt so much better and his appetite had returned.
We went back over to Huntsman and he got his picc line removed - that didn't hurt either; then got his neulasta shot - that did kinda hurt. Off we went to Rubios for him to order and eat two fish tacos. He kept rubbing his tummy, so glad it felt better.
Once we got home, he went straight to bed for a nice, long nap - actually in bed for the night - with no iv's, no changing bags of fluid every six hours and was comfortable. It was a red letter day.
Did we mention Utah beat Pitt in overtime? The nurses at Huntsman think it is because of Nick's red pants. Me too.
Nick is off to Moab today. In the meantime, we'll keep our fingers crossed his blood and urine cultures come back negative and that he stays fever free.
Have a wonderful weekend, everyone.
Love Lori
We went back over to Huntsman and he got his picc line removed - that didn't hurt either; then got his neulasta shot - that did kinda hurt. Off we went to Rubios for him to order and eat two fish tacos. He kept rubbing his tummy, so glad it felt better.
Once we got home, he went straight to bed for a nice, long nap - actually in bed for the night - with no iv's, no changing bags of fluid every six hours and was comfortable. It was a red letter day.
Did we mention Utah beat Pitt in overtime? The nurses at Huntsman think it is because of Nick's red pants. Me too.
Nick is off to Moab today. In the meantime, we'll keep our fingers crossed his blood and urine cultures come back negative and that he stays fever free.
Have a wonderful weekend, everyone.
Love Lori
Thursday, September 2, 2010
Chemo, Round 1,763,297...
or so it seems.
Before we even left the garage, Nick threw up - yup, in the garage. Lee, bless his gigantic heart, said he'd take care of it so we could be on our way. Nick and I arrived at 8:00 a.m. in the out-patient clinic at Huntsman, shortly followed by arrivals of his fairy godmothers, Denise & Jennie, and his dad. To start things off, Nick had to have a picc line inserted because one of the chemos (vincristine) can't be put directly into his veins. This wasn't a pleasant experience for Nick because his veins are so beat up and he has had a port on each side so it took a few tries to get it in place.
Then there were unexpected complications when both his urine and blood work came back positive for a bacterial infection. He also threw up again, nothing but fluid, which may actually be from the ascites; our medical angel, Grace, said it is hard to say. Fast-forward to 1:00 p.m. and the 3-chemo variation began. His spirits picked up as the afternoon wore on. He showed EVERYONE his bright red pants worn to support his Univ of Utah season-opening home football game vs. Pittsburgh tonight, topped off with his U of U cap. He showed off his memory skills to us by quoting various lines from "Dumb & Dumber", cracking us all up.
We were on our way home by 3:30 p.m. with a fun-filled package from Home Health - pumps to keep fluids going through him the next 24 hours and a 12 hour dose of Mesna to protect his internal organs from the chemo. Is it just me or is there some irony here? He also now has scripts for potassium, another diuretic and an antibiotic. We won't know for a day or two if the cultures reveal any particular strain of bacteria.
We will go back tomorrow for a procedure to have his tummy drained - he is pretty uncomfortable. He'll also get his picc line removed and a neulasta shot. He may consider getting another port put in, but he has a few weeks to think about it. Grace was a doll, walking us through all the different situations today, and even gave Nick her cell phone number offering to go with him to have his tummy procedure tomorrow if he needed her.
He will have to postpone his trip to Moab for a day and hopefully he'll feel up to going Saturday morning.
Now we're enjoying the football game, snuggled on the couch. Thanks to all for checking in and for the prayers...more to follow tomorrow.
With love,
Lori
Before we even left the garage, Nick threw up - yup, in the garage. Lee, bless his gigantic heart, said he'd take care of it so we could be on our way. Nick and I arrived at 8:00 a.m. in the out-patient clinic at Huntsman, shortly followed by arrivals of his fairy godmothers, Denise & Jennie, and his dad. To start things off, Nick had to have a picc line inserted because one of the chemos (vincristine) can't be put directly into his veins. This wasn't a pleasant experience for Nick because his veins are so beat up and he has had a port on each side so it took a few tries to get it in place.
Then there were unexpected complications when both his urine and blood work came back positive for a bacterial infection. He also threw up again, nothing but fluid, which may actually be from the ascites; our medical angel, Grace, said it is hard to say. Fast-forward to 1:00 p.m. and the 3-chemo variation began. His spirits picked up as the afternoon wore on. He showed EVERYONE his bright red pants worn to support his Univ of Utah season-opening home football game vs. Pittsburgh tonight, topped off with his U of U cap. He showed off his memory skills to us by quoting various lines from "Dumb & Dumber", cracking us all up.
We were on our way home by 3:30 p.m. with a fun-filled package from Home Health - pumps to keep fluids going through him the next 24 hours and a 12 hour dose of Mesna to protect his internal organs from the chemo. Is it just me or is there some irony here? He also now has scripts for potassium, another diuretic and an antibiotic. We won't know for a day or two if the cultures reveal any particular strain of bacteria.
We will go back tomorrow for a procedure to have his tummy drained - he is pretty uncomfortable. He'll also get his picc line removed and a neulasta shot. He may consider getting another port put in, but he has a few weeks to think about it. Grace was a doll, walking us through all the different situations today, and even gave Nick her cell phone number offering to go with him to have his tummy procedure tomorrow if he needed her.
He will have to postpone his trip to Moab for a day and hopefully he'll feel up to going Saturday morning.
Now we're enjoying the football game, snuggled on the couch. Thanks to all for checking in and for the prayers...more to follow tomorrow.
With love,
Lori
Monday, August 30, 2010
The Plan
Nick, Todd, Lee and I met with Dr. Gouw this morning. It appears the cancer is seeded throughout his entire abdominal cavity, with the largest mass - 3" x 2" in his lower left abdomen. The ascites (pockets of malignant fluid) are growing in size so that Nick is obviously bloated and uncomfortable. Dr. Gouw reluctantly told us we are no longer looking for a cure, but a way to slow down the cancer's growth. Our options are:
1. Start up again on the 3 different concoctions of chemo that Nick was on last fall.
2. Consider surgery down the road to remove the larger mass, as well as any other lesions the surgeon can find, with an option to have chemo applied directly into the abdominal cavity.
3. Consider a phase 1 trial, also down the road.
Nick and Dr. Gouw decided to go ahead and start chemo again on Thursday. This particular cycle is done over a six-hour period and then he'll be off for the next 3 weeks. The subsequent cycle will be a 5-day out-patient treatment beginning on Sept 27th. If all goes well, Nick will be assessed after the third cycle - probably around mid-October - to see how he is responding to the chemo. Of course, they will monitor him closely as things may change very quickly. But for now, this is how we will proceed. Dr. Gouw also gave him a diuretic to help him literally pee out the ascites.
We are all a little overwhelmed, a little shell-shocked and really, really sad. We've been bringing out the comedy dvd's, board games, and our beloved dice game again. Nick is going to see John Mayer tomorrow night and our Univ of Utah plays Pittsburgh on Thursday. Nick and his dad will be taking off for Moab this weekend to enjoy the holiday weekend. It will be good for them both.
I pray God's grace blesses our family as we prepare for our most difficult journey yet. My faith has not wavered and I rely on the prayers of all those that love us to bring strength, healing, acceptance and comfort to our family.
Thank you all for being there - it really makes a difference.
With gratitude,
Lori
1. Start up again on the 3 different concoctions of chemo that Nick was on last fall.
2. Consider surgery down the road to remove the larger mass, as well as any other lesions the surgeon can find, with an option to have chemo applied directly into the abdominal cavity.
3. Consider a phase 1 trial, also down the road.
Nick and Dr. Gouw decided to go ahead and start chemo again on Thursday. This particular cycle is done over a six-hour period and then he'll be off for the next 3 weeks. The subsequent cycle will be a 5-day out-patient treatment beginning on Sept 27th. If all goes well, Nick will be assessed after the third cycle - probably around mid-October - to see how he is responding to the chemo. Of course, they will monitor him closely as things may change very quickly. But for now, this is how we will proceed. Dr. Gouw also gave him a diuretic to help him literally pee out the ascites.
We are all a little overwhelmed, a little shell-shocked and really, really sad. We've been bringing out the comedy dvd's, board games, and our beloved dice game again. Nick is going to see John Mayer tomorrow night and our Univ of Utah plays Pittsburgh on Thursday. Nick and his dad will be taking off for Moab this weekend to enjoy the holiday weekend. It will be good for them both.
I pray God's grace blesses our family as we prepare for our most difficult journey yet. My faith has not wavered and I rely on the prayers of all those that love us to bring strength, healing, acceptance and comfort to our family.
Thank you all for being there - it really makes a difference.
With gratitude,
Lori
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