It's confirmed - the scans are good! Nick will have one more round of chemo next week and then Dr. Chen said the chemo & radiation work is done!
She does, however, want us to contact both our NY & Boston surgeons(we'll have to chose one) to perform a biopsy and "clean up" of the original tumor site and see what pathology shows. So, we still have a bit more to go.
Until then, we're celebrating the progress and current results! We absolutely know we couldn't have made it without the love, support and prayers given unconditionally for Nick's health.
We're also going to focus on diet and other alternative healing measures to help Nick's rebuild his body to be as strong as possible.
Thank you so very much!
With extreme gratitude,
Lori
On April 12, 2007 (at age 18), Nicholas Raitt was diagnosed with stage 4 alveolar rhabdomyosarcoma - a very rare childhood cancer, located in his right sinus area. On April 15, 2008, he was confirmed to have no evidence of disease (NED). The cancer returned in his pancreas and he began his battle once again on April 15, 2009. On December 3rd, 2009, scans confirmed again NED but relapsed on August 18, 2010 in his abdominal cavity. On June 2, 2011, Nick earned his angel wings.
Friday, February 29, 2008
Thursday, February 28, 2008
Just for today...
Nick had scans done yesterday (MRI & CT) and today I picked up copies on cd to deliver to our surgeon and to Dr. Albritton in Boston. We will meet with Dr. Chen tomorrow morning after she has discussed the results with the head radiologist. I received the written report, altho still not signed off yet. Here are some excerpts: "...Although the possibility of residual tumor cannot be excluded, there is no evidence of disease progression." "No evidence of an acute intracranial process or intracranial spread of tumor is identified." "Slight interval improvement in bone marrow signal.... There has also been slight interval decrease in soft tissue thickening..."
It appears this is good news. I want to mention the other radiologist could very well find something else and I won't breathe a sigh of relief until Dr. Chen confirms the report. If all is well, Nick will finish his LAST round of chemo beginning Monday.
Until then, I would like to post a prayer (with permission) I read on another young man's website that is also fighting the valiant fight, Zachary McCulloch -http://www.carepages.com/ - Carepage name: SublimeLBC (after his favorite band):
DEAR GOD:
I want to thank You for what You have already done. I am not going to wait until I see results or receive rewards; I am thanking You right now.
I am not going to wait until I feel better or things look better; until people say they are sorry or until they stop talking about me; until the pain in my body disappears; until my financial situation improves; until the children are asleep and the house is quiet; until I get promoted at work or until I get the job; I am going to thank You right now.
I am not going to wait until I understand every experience in my life that has caused me pain or grief; I am not going to wait until the journey gets easier or the challenges are removed; I am thanking You right now.
I am thanking You because I am alive. I am thanking You because I made it through the day's difficulties. I am thanking You because I have walked around the obstacles. I am thanking You because I have the ability and the opportunity to do more and do better.
I'm thanking You because FATHER, You haven't given up on me.
Thanks, everyone - we'll post again after our appointment tomorrow.
With love,
Lori
It appears this is good news. I want to mention the other radiologist could very well find something else and I won't breathe a sigh of relief until Dr. Chen confirms the report. If all is well, Nick will finish his LAST round of chemo beginning Monday.
Until then, I would like to post a prayer (with permission) I read on another young man's website that is also fighting the valiant fight, Zachary McCulloch -http://www.carepages.com/ - Carepage name: SublimeLBC (after his favorite band):
DEAR GOD:
I want to thank You for what You have already done. I am not going to wait until I see results or receive rewards; I am thanking You right now.
I am not going to wait until I feel better or things look better; until people say they are sorry or until they stop talking about me; until the pain in my body disappears; until my financial situation improves; until the children are asleep and the house is quiet; until I get promoted at work or until I get the job; I am going to thank You right now.
I am not going to wait until I understand every experience in my life that has caused me pain or grief; I am not going to wait until the journey gets easier or the challenges are removed; I am thanking You right now.
I am thanking You because I am alive. I am thanking You because I made it through the day's difficulties. I am thanking You because I have walked around the obstacles. I am thanking You because I have the ability and the opportunity to do more and do better.
I'm thanking You because FATHER, You haven't given up on me.
Thanks, everyone - we'll post again after our appointment tomorrow.
With love,
Lori
Sunday, February 24, 2008
St. George, Utah
So this weekend was very active for the whole family and it all took place down in St. George.
Both my sisters Carly (16) and Kelsey (11) had softball tournaments there so they drove down with my mom on Thursday night. I drove down Friday night with 2 buddies who also have dirt bikes and we decided we would get our first rides of the year out of the way down there since it is 60 degrees in St. George. Lee also flew in Friday night so that he could see the girls play.
Saturday was one of the best riding I have ever done. It got to the high 60's and the sun was out.... oh man it was picture perfect. The bikes ran great and no one was hurt.
My sisters played pretty good and I was able to watch both of them play a little bit before my buddies and I passed out in the grass at the game after we had just got done riding for over 5 hours straight. I was feeling muscles that I had no clue existed! Carly's team ended up placing 2nd out of 8 teams and Kelsey's team took 5th out of 12. So pretty good weekend.
The guys and I also rode a little on Sunday too but we were already so sore and tired that we decided to just go home and call it good. A great weekend though for sure!
I made a video in like 15 minutes of the little footage I did take while riding just to show you how nice it was and honestly to show you my "amazing" capabilities a week after getting out of the hospital. HA. Its nothing much but I have always wanted to put a video on here. Enjoy.
I ordered the sticker on my bike special. It says "cure childhood cancer". One and only!
Both my sisters Carly (16) and Kelsey (11) had softball tournaments there so they drove down with my mom on Thursday night. I drove down Friday night with 2 buddies who also have dirt bikes and we decided we would get our first rides of the year out of the way down there since it is 60 degrees in St. George. Lee also flew in Friday night so that he could see the girls play.
Saturday was one of the best riding I have ever done. It got to the high 60's and the sun was out.... oh man it was picture perfect. The bikes ran great and no one was hurt.
My sisters played pretty good and I was able to watch both of them play a little bit before my buddies and I passed out in the grass at the game after we had just got done riding for over 5 hours straight. I was feeling muscles that I had no clue existed! Carly's team ended up placing 2nd out of 8 teams and Kelsey's team took 5th out of 12. So pretty good weekend.
The guys and I also rode a little on Sunday too but we were already so sore and tired that we decided to just go home and call it good. A great weekend though for sure!
I made a video in like 15 minutes of the little footage I did take while riding just to show you how nice it was and honestly to show you my "amazing" capabilities a week after getting out of the hospital. HA. Its nothing much but I have always wanted to put a video on here. Enjoy.
I ordered the sticker on my bike special. It says "cure childhood cancer". One and only!
Wednesday, February 13, 2008
Bum Rap - Round 11
Mom & Lee got this tee shirt for me!
My godmothers visited tonight on my 3rd night of chemo and they dressed up in something I would have never guessed. It was so unexpected that it took me a couple of seconds to start smiling. HA
One aide said, "Aw, man - I'm not supposed to look at that!"
Jenny had a wonderful poem prepared before the entire costume was revealed, and when they revealed it all it all made sense. We then took a walk around the hospital hoping the other patients would see them. Unfortunetely most of the patients here are older and go to bed early so only the aides and nurses really got a kick out of the costumes.
Carly & Kelsey had been out getting a drink and came back in the room - the exposure took them back a bit and they really thought it was real! There was a collective groan from Lee, Carly & Kelsey when they posed for the pictures.
Very, very funny. The night also included take-out dinner from our favorite Indian restaurant, the Bombay House - it was fantastic! Tonight was a good night!
Monday, February 11, 2008
Numero Once (Number Eleven)
So today is my first night of 11th round of chemo. I will be here untill saturday as usuall and I can already tell this is going to be another long week. I was suprised when I was weighed today. I am a wopping 145 pounds which is like 5 pounds more than I thought.
After this round of chemo I will have scans done which will determine whether or not I have surgery or not. If there is any sign of growth surgery is where we will most likely go. So this is the time that I am going to ask for all the prayers that I can get. I am almost certain there will be no growth, just because of a gut feeling but I still cannot tell you how much I want this fight to be done with. If scans are clear then I will have one more round of chemo. YES!
I will update again after the godmothers stop by in their costumes. I cant wait to see what they have planned this time.
Thanx everyone!
-Nick
After this round of chemo I will have scans done which will determine whether or not I have surgery or not. If there is any sign of growth surgery is where we will most likely go. So this is the time that I am going to ask for all the prayers that I can get. I am almost certain there will be no growth, just because of a gut feeling but I still cannot tell you how much I want this fight to be done with. If scans are clear then I will have one more round of chemo. YES!
I will update again after the godmothers stop by in their costumes. I cant wait to see what they have planned this time.
Thanx everyone!
-Nick
Tuesday, February 5, 2008
On the mend
Just a quick update to let you know Nick's fever broke on Saturday. Hospital requires 24 hours of normal temperatures before letting him go home, so we were checked out Sunday morning in time for the Superbowl. Jennie and Dean were in Las Vegas for the Superbowl and placed a $50 bet in Nick's behalf to have the Patriots win - was a lesson learned about gambling? Well, a little, since I was rooting for the Giants. Jennie wrangled a souvenier hat and teeshirt for him so all was not lost.
Nick was invited to attend a performance in Las Vegas this weekend given by a new friend of ours, Thomas Cook; however with his immune system being a little fragile, we decided to take a raincheck. Instead, Nick is driving up with a friend today to go spend a couple of days with Rob in Wyoming. I predict a couple of nights of poker and story-telling; he'll have a great time.
We are back in the hospital on Monday - round 11. Sheesh.
With love,
Lori
Nick was invited to attend a performance in Las Vegas this weekend given by a new friend of ours, Thomas Cook; however with his immune system being a little fragile, we decided to take a raincheck. Instead, Nick is driving up with a friend today to go spend a couple of days with Rob in Wyoming. I predict a couple of nights of poker and story-telling; he'll have a great time.
We are back in the hospital on Monday - round 11. Sheesh.
With love,
Lori
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