I just got back from the road trip to Vegas with my Dad where we met up with my cousin Stuart and picked up my new bike. Boy did it look good! I am so excited to ride it this weekend with my buddies.
Here are some pictures:
Tuesday, September 25, 2007
My new bike
Nick here..
I just got back from the road trip to Vegas with my Dad where we met up with my cousin Stuart and picked up my new bike. Boy did it look good! I am so excited to ride it this weekend with my buddies.
Here are some pictures:
I just got back from the road trip to Vegas with my Dad where we met up with my cousin Stuart and picked up my new bike. Boy did it look good! I am so excited to ride it this weekend with my buddies.
Here are some pictures:
September - Childhood Cancer Awareness Month
In order to try to continually learn about Nick's cancer, I subscribe to a listserve comprised of others that have (or had) a child, spouse, grandchild, sibling and friend with rhabdomyosarcoma. This listserve has tremendous value with the immediate sharing capability for anything from general questions, specific concerns, information on clinical trials, helpful hints, platform to vent, advise or comfort and share a unified effort to bring awareness (which brings funding) to this devestating cancer. Sometimes, the emails I receive are simply too much; too heartbreaking, too frustrating, too confusing - I cannot even conceive what some of the children, and parents, are suffering through. Rhabdo is usually diagnosed in young children. It really makes me count my blessings with Nick's response, his attitude, our support, our faith, our love.
There is another listserve that is dedicated to ALL childhood cancers and they have put together a promotional video to support the Conquer Childhood Cancer Act of 2007. I hesitated to post this clip as we try to keep everything very positive on this blog. However, I also feel we have a responsibility to do what we can to raise awareness in every opportunity we encounter. This being said, if you would be willing, please take a few minutes to watch this video.
http://www.youtube.com/watch?v=AGS4yE5v9rM
I'll post more later on how to support funding once I've verified a few more things.
Mom
There is another listserve that is dedicated to ALL childhood cancers and they have put together a promotional video to support the Conquer Childhood Cancer Act of 2007. I hesitated to post this clip as we try to keep everything very positive on this blog. However, I also feel we have a responsibility to do what we can to raise awareness in every opportunity we encounter. This being said, if you would be willing, please take a few minutes to watch this video.
http://www.youtube.com/watch?v=AGS4yE5v9rM
I'll post more later on how to support funding once I've verified a few more things.
Mom
Monday, September 24, 2007
Upcoming Events
Nick came back from California all smiles. He is thoroughly happy with his new motorcycle and has gone to Las Vegas with his dad to meet his cousin (halfway point) so he can pick up his motorcycle and bring it back home tomorrow. He went riding with a couple of his buddies (borrowed a motorcycle) last weekend and he struggled a bit. He thinks the chemo has impaired his balance as he continued to tip the bike over several times. Although he has regained 6 pounds, his 130 lb frame couldn't lift the weight of the bike - a little frustrating.
We went to see Dr. Chen on Thursday and she isn't worried about the residual cancer cells, but Nick will go through an additional 4 rounds of chemo (rather than 2) beginning Oct 1st. He should be finished up the first week in December so he'll be feeling pretty good by Christmas!
Something fun..... I have purchased 20 tickets to the Utah Grizzlies hockey game for Oct 27th. It is the "Pink in the Rink" theme as they will donate 50% of their ticket sales to the Huntsman Cancer Institute. They worked with me and guaranteed that 100% of the proceeds for my tickets purchased will be donated to Huntsman, and also reserved us awesome seats. Nick may or may not be able to attend as he gets out of the hospital on the 26th (I really think he'll make it). It will be fun to don the "Cowboy Up" tee shirts again and go as a group to support Nick and the fight against cancer. Please contact me if you want to go- lorib@quadrantliving.com.
Nick is looking fantastic! His eyebrow is growing back ("we'll take care of that!", said Dr. Chen) and he is eating anything he can get his hands on. This has been a great week! Thank you everyone for the continued prayers - it's like watching a miracle before our very eyes.
Mom
We went to see Dr. Chen on Thursday and she isn't worried about the residual cancer cells, but Nick will go through an additional 4 rounds of chemo (rather than 2) beginning Oct 1st. He should be finished up the first week in December so he'll be feeling pretty good by Christmas!
Something fun..... I have purchased 20 tickets to the Utah Grizzlies hockey game for Oct 27th. It is the "Pink in the Rink" theme as they will donate 50% of their ticket sales to the Huntsman Cancer Institute. They worked with me and guaranteed that 100% of the proceeds for my tickets purchased will be donated to Huntsman, and also reserved us awesome seats. Nick may or may not be able to attend as he gets out of the hospital on the 26th (I really think he'll make it). It will be fun to don the "Cowboy Up" tee shirts again and go as a group to support Nick and the fight against cancer. Please contact me if you want to go- lorib@quadrantliving.com.
Nick is looking fantastic! His eyebrow is growing back ("we'll take care of that!", said Dr. Chen) and he is eating anything he can get his hands on. This has been a great week! Thank you everyone for the continued prayers - it's like watching a miracle before our very eyes.
Mom
Friday, September 14, 2007
Lancaster, California
I am having a great time already with my family in the west coast. I am also eating very well and gaining some weight! I have only been here a day and a half and I have already gone to a Dodger game, driven an '08 Nissan Altima (SWEET CAR), played some sweet video games, heard some great stories, bought a motor cycle and gear, and ended the day with a Jamba Juice and a great dinner. It rocks!
Tomorrow I will attend a cancer walk where I hope to share stories with other cancer survivors and fighters. It always helps to hear that others are going through this just as you are. My Aunt Chris bought me a sweet costume for the walk tomorrow to help represent my theme, "Cowboy Up", and I hope it gets a kick out of everyone.
Here are some pictures:
Wednesday, September 12, 2007
Pathology Results
Mom here: Well, we met with the surgeon today and Nick finally got the gauze taken out of his nose - much, much better. However, the pathology report indicates findings of "viable activity" in the tissue removed from Nick last week. The surgeon went on to say Nick will resume at least 2 more rounds of chemo in about 3 weeks. "Any questions?" he asks us. Upon asking him what this means in layman's terms, he responded by saying there are still active cancer cells in the original tumor site. "I realize this, but what does this mean?" The answer is one I think we'll be hearing alot - "I don't know". The tests can determine the tumor to have completely dead tissue, completely active tissue or somewhere in between. Nick is somewhere in between. There is no indication of how many of the cells are cancerous, but obviously not too many as it wasn't picked up on his scans.
Usually, with rhabdo cancer, the surgeon will completely remove all the tumor and area surrounding the tumor. In Nick's case, he was not aggressive in order to preserve Nick's facial bone and muscle structure. There is a fine line he works with in trying to get as much cancerous tissue as possible without compromising Nick and hoping the next 2 chemo treatments finish off the remaining "viable" cells. Nick has been very responsive to the chemo so far so we remain cautiously optimistic. At the end of the next 2 rounds, he'll have scans done again to see if anything has changed. If the remaining cells are resistant to chemo, Nick will be facing some serious, aggressive surgery. If he continues to be responsive, he will have scans every 3 months for the next 2 years. Remission doesn't mean "cured"; it means "I don't know".
We're going to put a positive spin on "I don't know" and he is going to go ahead and enroll at the Univ of Utah for winter semester. There are some terrific cancer scholarships available to Nick, too. I don't know why he can't still go to college...
Enlisting in the Army National Guard and battling cancer isn't enough to worry me with so he has decided to get a motorcycle. He takes off to California tomorrow to spend some time with his Aunt Chris, Uncle Stan and his cousin Stuart where a new bike awaits him. I don't know why he can't go have some fun... He will have a fabulous time!
Eternal gratitude to everyone for their love! I don't know how we would have made it this far without you!
Lori
Usually, with rhabdo cancer, the surgeon will completely remove all the tumor and area surrounding the tumor. In Nick's case, he was not aggressive in order to preserve Nick's facial bone and muscle structure. There is a fine line he works with in trying to get as much cancerous tissue as possible without compromising Nick and hoping the next 2 chemo treatments finish off the remaining "viable" cells. Nick has been very responsive to the chemo so far so we remain cautiously optimistic. At the end of the next 2 rounds, he'll have scans done again to see if anything has changed. If the remaining cells are resistant to chemo, Nick will be facing some serious, aggressive surgery. If he continues to be responsive, he will have scans every 3 months for the next 2 years. Remission doesn't mean "cured"; it means "I don't know".
We're going to put a positive spin on "I don't know" and he is going to go ahead and enroll at the Univ of Utah for winter semester. There are some terrific cancer scholarships available to Nick, too. I don't know why he can't still go to college...
Enlisting in the Army National Guard and battling cancer isn't enough to worry me with so he has decided to get a motorcycle. He takes off to California tomorrow to spend some time with his Aunt Chris, Uncle Stan and his cousin Stuart where a new bike awaits him. I don't know why he can't go have some fun... He will have a fabulous time!
Eternal gratitude to everyone for their love! I don't know how we would have made it this far without you!
Lori
Thursday, September 6, 2007
Surgery
Mom here...
We met with Nick's surgeon and radiologist yesterday. First, the surgeon discussed the scan results in detail and there is virtually no visible activity in his sinus area and minimal activity in his lymph node. Nick's original PET scan revealed an SUV of 10.5 in his sinus (measurement of cancer activity - i.e. anything over 5 is worrisome and anything over 10 is critical); his current PET revealed NOTHING! The lymph node had an original SUV of 3.8 and is now 3.1 - this could be from anything, like the low-grade fever he had last week. No worries there, either! The surgeon will simply remove as much dead tissue as possible going up through his gum line and removing a small square of cheekbone - this will not damage any nerves in his face or bone/muscle structure.
The radiologist is thrilled with the results and we were walked through viewing the scans side-by-side - truly amazing. She said the fact that his tumor even shrunk at all was incredible, let alone completely gone. We also found out that there have been 5 cases of rhabdomyosarcoma in the past 4 months up at Huntsman. Wow.
Nick's surgery is at 2:15 today at SL Regional. He will come home today and will recover quickly, however will have a pretty swollen face for 2 weeks or so as his cheek has been heavily treated. We still really shouldn't officially celebrate until we get the results back as negative from the tissue they recover. We have an appointment next Wednesday, 12th, to review with the surgeon.
It sounds like Nick won't begin his next round of chemo for another 3-4 weeks. He would just assume getting this over with asap, but we'll take this break to chub him up some more (he is now up to 133 lbs). He tries every day to do something active - we all played tennis a couple of nights ago and he did great! Bowling the night before last! I do believe he can now clean his room, too.
One funny story to share: Carly was groaning after dinner last night that she needed 3x5 cards to help her study for one of her classes and we didn't have any at the house. When we suggested she go to our local Wal-Mart 1/2 mile away to get some, she tried to recruit Kelsey to go with her so she could run in the store for her. Not a chance. Then Carly continued to complain she couldn't possibly go into the store as she was dressed in sweats and her hair was in a pony-tail ("You just don't know who you might run into!"). As she continued to lament about her appearance, Nick finally said, "CARLY! I have ONE eyebrow!" We all roared with laughter as Carly grinned, put on her shoes and quietly took off to the store. Ah, perspective...
We would like to express our sincere appreciation for all of your prayers for Nick's recovery. It is obviously a miracle he is doing so well and we couldn't have made it this far without your support. We're very humbled, indeed.
We'll post again soon,
Love, Lori
We met with Nick's surgeon and radiologist yesterday. First, the surgeon discussed the scan results in detail and there is virtually no visible activity in his sinus area and minimal activity in his lymph node. Nick's original PET scan revealed an SUV of 10.5 in his sinus (measurement of cancer activity - i.e. anything over 5 is worrisome and anything over 10 is critical); his current PET revealed NOTHING! The lymph node had an original SUV of 3.8 and is now 3.1 - this could be from anything, like the low-grade fever he had last week. No worries there, either! The surgeon will simply remove as much dead tissue as possible going up through his gum line and removing a small square of cheekbone - this will not damage any nerves in his face or bone/muscle structure.
The radiologist is thrilled with the results and we were walked through viewing the scans side-by-side - truly amazing. She said the fact that his tumor even shrunk at all was incredible, let alone completely gone. We also found out that there have been 5 cases of rhabdomyosarcoma in the past 4 months up at Huntsman. Wow.
Nick's surgery is at 2:15 today at SL Regional. He will come home today and will recover quickly, however will have a pretty swollen face for 2 weeks or so as his cheek has been heavily treated. We still really shouldn't officially celebrate until we get the results back as negative from the tissue they recover. We have an appointment next Wednesday, 12th, to review with the surgeon.
It sounds like Nick won't begin his next round of chemo for another 3-4 weeks. He would just assume getting this over with asap, but we'll take this break to chub him up some more (he is now up to 133 lbs). He tries every day to do something active - we all played tennis a couple of nights ago and he did great! Bowling the night before last! I do believe he can now clean his room, too.
One funny story to share: Carly was groaning after dinner last night that she needed 3x5 cards to help her study for one of her classes and we didn't have any at the house. When we suggested she go to our local Wal-Mart 1/2 mile away to get some, she tried to recruit Kelsey to go with her so she could run in the store for her. Not a chance. Then Carly continued to complain she couldn't possibly go into the store as she was dressed in sweats and her hair was in a pony-tail ("You just don't know who you might run into!"). As she continued to lament about her appearance, Nick finally said, "CARLY! I have ONE eyebrow!" We all roared with laughter as Carly grinned, put on her shoes and quietly took off to the store. Ah, perspective...
We would like to express our sincere appreciation for all of your prayers for Nick's recovery. It is obviously a miracle he is doing so well and we couldn't have made it this far without your support. We're very humbled, indeed.
We'll post again soon,
Love, Lori
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