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.
Wednesday, April 30, 2008
The Races
So last weekend I had my first dirt bike race ever. It was definitely a cool experience and I have not felt all that adrenaline run through my body in a long time. I was able to get my number 212 which was cool even though my numbers were electrical tape. HA I will get some real numbers soon. My dirt bike is mainly designed for trail riding and not racing. So it was funny to be the only rider out there with a headlight and taillight. Even with the extra weight and headlight I finished 15 out of 25 on my final heat and 17th overall. So I was satisfied with my first race and have another one this friday.
Tuesday, April 22, 2008
This past week and the week ahead
So this past week has consisted of hanging out with friends, drive ins, job applications, and school applications. What I am really excited for is my first ever dirt bike race on Saturday. I practiced last saturday and ended up hurting my knee and ankle in the process (I have the bruises to prove it). But I should still be good to go on Saturday, so I am really excited. I am hoping that number 212 isn't taken because thats the number I want. It would stand for 2 surgeries and 12 chemos. Together it makes number 212. My dad said he will be there for the race so he will be able to film, and if so I will be able to post a little video of how it went. I don't plan on doing too good but not too bad either. So wish me luck!
Oh ya! I will also be attending game 3 of the Jazz vs. the Rockets at the Energy Solutions Arena on thursday. My buddy AJ was so kind to invite me. It is going to be an awesome game!
Lastly, I would like everyone to know (especially Jay), that the Penguins were the only team to win the first round 4-0. My main man Sidney Crosby is back and scoring goals.
Well thats all I have for now. Talk to you soon.
BYE
love
Nick
Thursday, April 17, 2008
It feels like we won the lottery!
Dad Here,
It was the best possible news we could have asked for. When ever I hear any negative news I find myself ending the conversation with "That's terrible but I just learned that my son is cancer free"( Geico twist). Nick plans on racing competitive motocross this summer and I'm asking myself why did I ever agree to get him a dirt bike. With the high probability of injury I find some humor in knowing that he may kill himself on that bike but at least he was cancer free! Nick will require scans every three months and after 2.5 years the chance of a relapse drops considerably. Nick plans on working at Discount Tire this summer and starting school at the University of Utah in the fall. I need to also thank Blue Cross BlueShield and University Health Care Billing. I don't know how I would have been able to sort through the billing maze without their help. I'm so greatful to have excellent insurance.
It was the best possible news we could have asked for. When ever I hear any negative news I find myself ending the conversation with "That's terrible but I just learned that my son is cancer free"( Geico twist). Nick plans on racing competitive motocross this summer and I'm asking myself why did I ever agree to get him a dirt bike. With the high probability of injury I find some humor in knowing that he may kill himself on that bike but at least he was cancer free! Nick will require scans every three months and after 2.5 years the chance of a relapse drops considerably. Nick plans on working at Discount Tire this summer and starting school at the University of Utah in the fall. I need to also thank Blue Cross BlueShield and University Health Care Billing. I don't know how I would have been able to sort through the billing maze without their help. I'm so greatful to have excellent insurance.
Tuesday, April 15, 2008
Its official!
So I got the news today around 11 a.m. I am officially CANCER FREE! The docs said they could not find one cancer cell on the slides. It incredible!
My mom called me to give me the news, but before she did she told me to stand next to my step-dad Lee. So I did, and then she broke down and told me the great news. I simply replied with, "Really. K do you wanna talk to Lee now?". Ha, I know its sounds rude and weird but I believe I replied like that because I already knew what the results were going to be. I will admit however, 15 minutes later I started to realize the whole situation and that my year of fighting was finally over. Then it kinda hit me, but I DIDN'T cry.
So after the news I called my dad and family to let them hear the good news. Everybody was so happy and relieved. It was good to hear their voices full with love and gratitude.
What I plan to do next will consist of riding my dirt bike, volunteering at Primary Children's, finding a job, preparing for college, and if I have time coaching hockey.
I am excited to finally get back on track with life and grow some sweet hair. My main goal is to be an example to other and future people who will be diagnosed with the same cancer as I was, to let them know its very possible to fight this disease with modern medicine, attitude, and perseverance.
Lastly I wanna thank all my doctors: Dr. Chen, Dr. Albritton, Dr. Hitchcock, Dr. Sharma, and also Dr. Rhabar who did a wonderful job with my last surgery in Boston. Also the nurses at Huntsman were the best and were always fun to talk to. And the biggest help of them all was everybody reading now who have prayed and stayed with me through this long fight. You have been the reason for my great attitude and reason to keep pushing. I could not have done it without all of you. I know this for sure. And my GM's (godmothers) have been there for every round of treatment to keep smiles on my face as well as other patients.
Thanks Everyone!
Now lets plan on making plans of fun and adventure!
Monday, April 14, 2008
No news yet
We were to have heard from Boston today about the results of the pathology reports. As of 3:00 Eastern time, Dr. Rahbar was on the phone with the lab to see what the status is, other than the computer not indicating any lab postings. Nothing yet.
Hopefully tomorrow. In the meantime, Nick is enjoying another round of golf in our brief bout of beautiful weather. His scar is healing incredibly well, other than only being able to flare one nostril.
More soon,
Lori
Hopefully tomorrow. In the meantime, Nick is enjoying another round of golf in our brief bout of beautiful weather. His scar is healing incredibly well, other than only being able to flare one nostril.
More soon,
Lori
Sunday, April 6, 2008
Nick's Dad Here,
As parents we want our children to become strong, independent and well rounded adults. However, during this process of becoming adults, as his father I seem to be going through a bit of separation anxiety which has been magnified by the cancer. Rolls have been reversed and Nick has been a source of strength and support from the very first day we learned of the tumor.
Nick and I visited Fenway Park today, home of the 2007 World Series Champions and the fabled Green Monster. Nick has handled this monster/crisis with confidence and determination and I am so proud of this special young man. Nick's journey has been filled with hopes, dreams, challenges and setbacks and he continues to address them head-on.
With Admiration,
Todd
As parents we want our children to become strong, independent and well rounded adults. However, during this process of becoming adults, as his father I seem to be going through a bit of separation anxiety which has been magnified by the cancer. Rolls have been reversed and Nick has been a source of strength and support from the very first day we learned of the tumor.
Nick and I visited Fenway Park today, home of the 2007 World Series Champions and the fabled Green Monster. Nick has handled this monster/crisis with confidence and determination and I am so proud of this special young man. Nick's journey has been filled with hopes, dreams, challenges and setbacks and he continues to address them head-on.
With Admiration,
Todd
Saturday, April 5, 2008
Friday, April 4, 2008
Oh yeah, forgot to tell you about...
Now that I'm well-rested and fed (ahhh....), I wanted to share a few things from yesterday:
When Nick was first wheeled into the recovery room, we were not alone - there were about 8 other beds with patients also waking up from surgery just in our little "pod". Right next to Nick - with the curtain OPEN - was a little boy no older than three that was just beginning to regain consciousness. Something happened and he began to scream in a very throaty and raspy voice. Soon the parents were holding him still as two nurses worked on him. The screaming continued and I sat in my chair, heart breaking to see the wrenching sorrow in the parents, and I couldn't hold back my tears. Soon, thankfully, he was able to be held by his mom and he immediately settled down. Even Nick said in his semi-state of awareness, "aw, that is horrible!" Within minutes, the little boy was snuggled up contentedly with his mom and all was right again. I held Nick's hand and gave thanks that we have not had to endure this particular journey.
We were talking with Nick's recovery nurse and she told us the Children's Hospital has about 100 surgeries a DAY; 23 operating rooms and 5 procedure rooms. Absolutely unbelievable!
Nick's is in a semi-private room and shares it with another young man (18 years old, I think). Lee and I spoke with him and his mom late last night - they are from Atlanta. This young man has an extremely deformed face; he has obviously had many, many surgeries. They confirmed this by stating they have been coming back to Children's Hospital for over 18 years! Their eyes were kind and strong - not a hint of bitterness or weariness. We are just rookies with only 1 year under our belt. We were humbled by their strength and again gave thanks for the precious life we have.
Nick looks terrific today and I took a picture of him in the "play room" where we played a very competitive game of gin. Forgot the camera at the hospital tonight so I'll have to post tomorrow. Nick is expected to be checked out by 11:00 a.m. and we changed our flights to come home on Wednesday (Mom 2; Delta 1). Amazing!
With lots of love,
Lori
When Nick was first wheeled into the recovery room, we were not alone - there were about 8 other beds with patients also waking up from surgery just in our little "pod". Right next to Nick - with the curtain OPEN - was a little boy no older than three that was just beginning to regain consciousness. Something happened and he began to scream in a very throaty and raspy voice. Soon the parents were holding him still as two nurses worked on him. The screaming continued and I sat in my chair, heart breaking to see the wrenching sorrow in the parents, and I couldn't hold back my tears. Soon, thankfully, he was able to be held by his mom and he immediately settled down. Even Nick said in his semi-state of awareness, "aw, that is horrible!" Within minutes, the little boy was snuggled up contentedly with his mom and all was right again. I held Nick's hand and gave thanks that we have not had to endure this particular journey.
We were talking with Nick's recovery nurse and she told us the Children's Hospital has about 100 surgeries a DAY; 23 operating rooms and 5 procedure rooms. Absolutely unbelievable!
Nick's is in a semi-private room and shares it with another young man (18 years old, I think). Lee and I spoke with him and his mom late last night - they are from Atlanta. This young man has an extremely deformed face; he has obviously had many, many surgeries. They confirmed this by stating they have been coming back to Children's Hospital for over 18 years! Their eyes were kind and strong - not a hint of bitterness or weariness. We are just rookies with only 1 year under our belt. We were humbled by their strength and again gave thanks for the precious life we have.
Nick looks terrific today and I took a picture of him in the "play room" where we played a very competitive game of gin. Forgot the camera at the hospital tonight so I'll have to post tomorrow. Nick is expected to be checked out by 11:00 a.m. and we changed our flights to come home on Wednesday (Mom 2; Delta 1). Amazing!
With lots of love,
Lori
Thursday, April 3, 2008
Boston
Lee here, Nick's Step Dad...Nick is a stud. Lori and Nick were up at 5:30 this morning after a mostly sleepless night to be at the hospital at 6:30. Unfortunately, they ended up waiting because there weren't any beds in Intensive Care. The hospital was even considering postponing surgery! Bummer. Finally about 9 a.m. they came to take him away. That was o.k. with me because I just arrived from the airport and I was very happy to give him some bones before he kissed his mom. The last view of him as they rolled him off to surgery was with a big smile, a determined look and a "bring it on" attitude.
I have to say that everyone affiliated with the hospital has been exceptional- the doctors, nurses and staff. They keep it pleasant and are very professional. About every 90 minutes they would give us an update. The actual surgery began at 10:15 a.m. and every report was positive. They made an incision from the center of his upper lip up to the nose and then around the right side of his nose up to his eye then along the lower eyelid to the corner of his eye. The optometrist stopped by to let us know that his eye was just fine and she had inserted a small stint (tube) into his right tear duct that drains into his sinus to keep that area clear while it heals. I am sure Nick will be excited when they take it out in about six months.
Five hours to the minute, the surgeon, Dr. Rahbar, shows up to give us his report. I have to say he appeared to be very cautiosly optimistic. He said they took out a bunch of dead gunk and they actually created some windows through the cheek bone so they could clean things out and gather some tissue for biopsies. He also scraped several of the bones to get bone samples for biopsy as well. He said that because of the cancer and/or the radiation there was significant deterioration. The good news was that every thing was consistent. There were no particular areas that differed from other areas. He did say that could be really good or really bad. But, both Lori and I felt that he considered that a very good sign.
He actually remarked that Nick was a good healer and he felt he could be released perhaps as early as this coming Saturday- at least 3-4 days sooner than predicted. He would like to have a post-op on Tuesday and assuming Lori can win the battle with Delta Airlines, and Nick feels up to it, they could actually come home the middle of next week.
Of course we are anxious to see the lab results, but we will probably have to wait at least 7-10 days for the results. Keep your fingeres crossed. When we finally got to see Nick- we certainly expected to see more outside damage. Actually, we were surprised to see how good Nick looks. He was quite groggy- but quickly recovered and they sent him directly to a room without even having to go to ICU. (They had told us earlier he would be in ICU over night).
We knew Nick was coming around when he suddenly asked, "What happened to my underwear? I know I had underwear on when I went into surgery- so who took them off?"
It is obvious to all of us that the power of prayer and positive intentions continues to play a very influential role in Nick's progress. His positive attitude his amplified from the love and support of so many of you. We all feel the strength that comes from literally hundereds of prayers offered in his behalf. For that we are enormously and forever grateful.
Lori is here now and I am sure has some good words and photos to post.
Good night!
Nick - at our pre-op appointment - 6:30 a.m. EASTERN time!
The "rock star" meds are starting to kick in...
4 hours after surgery...
Nothing much more to add except to thank Lee for being here with us. What a day! What a great kid Nick is!
With love,
Lori
I have to say that everyone affiliated with the hospital has been exceptional- the doctors, nurses and staff. They keep it pleasant and are very professional. About every 90 minutes they would give us an update. The actual surgery began at 10:15 a.m. and every report was positive. They made an incision from the center of his upper lip up to the nose and then around the right side of his nose up to his eye then along the lower eyelid to the corner of his eye. The optometrist stopped by to let us know that his eye was just fine and she had inserted a small stint (tube) into his right tear duct that drains into his sinus to keep that area clear while it heals. I am sure Nick will be excited when they take it out in about six months.
Five hours to the minute, the surgeon, Dr. Rahbar, shows up to give us his report. I have to say he appeared to be very cautiosly optimistic. He said they took out a bunch of dead gunk and they actually created some windows through the cheek bone so they could clean things out and gather some tissue for biopsies. He also scraped several of the bones to get bone samples for biopsy as well. He said that because of the cancer and/or the radiation there was significant deterioration. The good news was that every thing was consistent. There were no particular areas that differed from other areas. He did say that could be really good or really bad. But, both Lori and I felt that he considered that a very good sign.
He actually remarked that Nick was a good healer and he felt he could be released perhaps as early as this coming Saturday- at least 3-4 days sooner than predicted. He would like to have a post-op on Tuesday and assuming Lori can win the battle with Delta Airlines, and Nick feels up to it, they could actually come home the middle of next week.
Of course we are anxious to see the lab results, but we will probably have to wait at least 7-10 days for the results. Keep your fingeres crossed. When we finally got to see Nick- we certainly expected to see more outside damage. Actually, we were surprised to see how good Nick looks. He was quite groggy- but quickly recovered and they sent him directly to a room without even having to go to ICU. (They had told us earlier he would be in ICU over night).
We knew Nick was coming around when he suddenly asked, "What happened to my underwear? I know I had underwear on when I went into surgery- so who took them off?"
It is obvious to all of us that the power of prayer and positive intentions continues to play a very influential role in Nick's progress. His positive attitude his amplified from the love and support of so many of you. We all feel the strength that comes from literally hundereds of prayers offered in his behalf. For that we are enormously and forever grateful.
Lori is here now and I am sure has some good words and photos to post.
Good night!
Nick - at our pre-op appointment - 6:30 a.m. EASTERN time!
The "rock star" meds are starting to kick in...
4 hours after surgery...
Nothing much more to add except to thank Lee for being here with us. What a day! What a great kid Nick is!
With love,
Lori
Wednesday, April 2, 2008
Welcome to Boston!
Nick & I arrived in Boston late last night - uneventful. This morning, he had a pre-op appt to cross the "t"s and dot the "i"s and a little lab work. He also had to have another echo to make sure his heart remained strong after receiving the maximum amount of the "red devil" - adriamycin. He's perfect!
We were ready to go to the Ronald McDonald House, but they are under construction and because Nick has had chemo recently and shouldn't be exposed to potential environmental dangers, we needed to have an authorization from an oncologist for us to stay there tonight. Too much of a hassle so we chose to take RMH on their offer to stay at the Holiday Inn - the entire time - for FREE! What a wonderful and very much appreciated surprise! The hotel is quite nice with shuttle service available to the hospital.
Nick took a much needed 3 hour nap this afternoon and then we went on a walk around the neighborhood looking for somewhere fun to eat, only to end up eating at our hotel (which was pretty good!).
We are due at the Children's Hospital of Boston tomorrow morning at 6:30 a.m. Sheesh! Surgery is scheduled for 8:00 and they did confirm they will have a bed long enough for Nick. That, oddly enough, is what I worry about. Nick & I are both calm and relaxed, although grumbling about what time we need to wake up. On that note, we need to hit the hay (as soon as we see who gets voted off American Idol...)
Gratitude in abundance to Lee, Carly, Kelsey, Natalie, Grandma & Grandpa, the Macrum family, Dixon, Jerry and Denise for the lovely blessing and impromptu good luck send-off; to the endless support from our extended family and friends that continue to give unconditional love through phone calls, emails and postings - you are all an integral part of why Nick is so peaceful tonight. And most importantly, to our Heavenly Father, eternal gratitude for the endless blessings, in every step of our journey.
Good night!
Lori
We were ready to go to the Ronald McDonald House, but they are under construction and because Nick has had chemo recently and shouldn't be exposed to potential environmental dangers, we needed to have an authorization from an oncologist for us to stay there tonight. Too much of a hassle so we chose to take RMH on their offer to stay at the Holiday Inn - the entire time - for FREE! What a wonderful and very much appreciated surprise! The hotel is quite nice with shuttle service available to the hospital.
Nick took a much needed 3 hour nap this afternoon and then we went on a walk around the neighborhood looking for somewhere fun to eat, only to end up eating at our hotel (which was pretty good!).
We are due at the Children's Hospital of Boston tomorrow morning at 6:30 a.m. Sheesh! Surgery is scheduled for 8:00 and they did confirm they will have a bed long enough for Nick. That, oddly enough, is what I worry about. Nick & I are both calm and relaxed, although grumbling about what time we need to wake up. On that note, we need to hit the hay (as soon as we see who gets voted off American Idol...)
Gratitude in abundance to Lee, Carly, Kelsey, Natalie, Grandma & Grandpa, the Macrum family, Dixon, Jerry and Denise for the lovely blessing and impromptu good luck send-off; to the endless support from our extended family and friends that continue to give unconditional love through phone calls, emails and postings - you are all an integral part of why Nick is so peaceful tonight. And most importantly, to our Heavenly Father, eternal gratitude for the endless blessings, in every step of our journey.
Good night!
Lori
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