Today we met with Dr. Sharma, Nick's surgeon. Nick will need to undergo a "partial maxillectomy" as it appears there is a tumor measuring approx 1/2" in the original tumor site and there is bone erosion up and above his last molar. A PET scan isn't going to be done because the suspicious tumor is too small - the results would be inconclusive. We can't do a biopsy because of where it is located. They can't confirm that it is cancerous but all the signs indicate it is.
It will be a 4 hour surgery; Dr. Sharma will make an incision along the line of his nose down to his lip. He will remove 5 teeth (beginning with his eye tooth), 40% of the roof of his mouth, his upper jaw bone and cheek bone. He will also remove some of the inside if his cheek and replace it with skin grafted from his thigh. He will be in the hospital for 3-4 days and will need to be on a feeding tube for a week. The dental specialist will insert a prosthetic that will work just like having dentures (we meet with him on Monday)
Because of the extensive complications, Nick has decided to wait until Jan 3rd to do the surgery. Both his oncologist and surgeon said there is no problem at all in waiting (his counts don't even come up until Dec 10th). Now he has a whole month to get his body strong for the surgery, put on some more weight and get hairy!
The good news? There is absolutely NO indication of the cancer ANYWHERE else, other than the original tumor site and his eye is completely safe.
The fight is long and we have many more treatment choices depending upon the pathology report done on the bone and tissue they will remove. One fight at a time, however, and until Jan 3rd, we are going to enjoy life and the spirit of Christmas.
With gratitude,
Mom
Wednesday, November 28, 2007
Monday, November 26, 2007
2 steps forward, 1 step back
Nick here..
Today some unfortunate news came from my doctors. Based on the scans I had done before my last chemo, they see what looks like to be probable tumor regrowth in my right sinus again. I will have to undergoe some serious surgery soon, which will also require some facial reconstructive surgery.
It really sucks that I have to do this with only one chemo left, thinking I would be done by this Christmas, but hopefully this will just be a little speed bump in my fight and I will be in remission soon. Also, because the surgery will delay my treatments I will not be able to attend the U of U for this coming semester. I guess in a way it will just give me more time to goof off (right mom).
I meet with my surgeon this Wednesday (Nov. 28th) and will know a lot more then about the surgery, how serious, how many more chemos, etc. I then will meet with the reconstructive surgeon on the following Monday. After that I hope to drive up to Wyoming for a couple days and visit my best friend to relax for a while.
Again, I will post more info on Wednesday and am thankful for all that I do have and all the love that everyone has shown through this fight.
Much Love,
-Nick
p.s. I saw a bald eagle today on my way to my dad's house. It was awesome! I have never seen one in my entire life. So it was kinda cool to see on this unfortunate day.
Today some unfortunate news came from my doctors. Based on the scans I had done before my last chemo, they see what looks like to be probable tumor regrowth in my right sinus again. I will have to undergoe some serious surgery soon, which will also require some facial reconstructive surgery.
It really sucks that I have to do this with only one chemo left, thinking I would be done by this Christmas, but hopefully this will just be a little speed bump in my fight and I will be in remission soon. Also, because the surgery will delay my treatments I will not be able to attend the U of U for this coming semester. I guess in a way it will just give me more time to goof off (right mom).
I meet with my surgeon this Wednesday (Nov. 28th) and will know a lot more then about the surgery, how serious, how many more chemos, etc. I then will meet with the reconstructive surgeon on the following Monday. After that I hope to drive up to Wyoming for a couple days and visit my best friend to relax for a while.
Again, I will post more info on Wednesday and am thankful for all that I do have and all the love that everyone has shown through this fight.
Much Love,
-Nick
p.s. I saw a bald eagle today on my way to my dad's house. It was awesome! I have never seen one in my entire life. So it was kinda cool to see on this unfortunate day.
Friday, November 23, 2007
Thanksgiving
We began our Thanksgiving a week early and it was scrumptious. However, it started off with an appointment at the urgent care center at the Moran Eye Institute (per Huntsman's recommendation - it is attached to the U of U Hospital) in the morning as Nick had an infection in his right eye. After several tests, it was decided to start back up on 2 different antibiotics and keep a close look on his eye since we were going in for an MRI and CT scan on the following Monday, as well as an appointment with his oncologist. Seemed to work - he responded quite well and his eye was 100% better by Friday morning.
On Monday morning, Nick had both scans done, lab work, appointment with Dr. Chen (who was not worried about his eye) and then nabbed the last bed available at Huntsman. Whew! We received the CT scan results later in evening and it was a little concerning to me.
Tuesday afternoon, we received the MRI results; also concerning. I spoke to Dr. Chen and she told me not to worry, probably post-surgery or radiation change. She had sent the results to Dr. Sharma (Nick's surgeon) for his assessment and will also present to the tumor board next Monday. I sent an email out to the "rhabdo kids" group and heard back from 2 other moms that stated sinus/orbit rhabdo often have positive scans with no cancer - could be anything from residual treatment to snot. Then later that night, Nick's godmothers arrived with Chinese food and a surprise - they came in his room dressed as grapes singing, "I Heard It Through the Grapevine", but with their own lyrics written by Denise herself (a songwriter, who knew?).
Sample of the lyrics:
"Livin your life is what you'd rather do
Now all of the choices are up to you
Courage, strength and lots of prayers
Family and friends are always there.
It's your time to live loud and strong
With your own team to cheer you on
We're so proud that we...
Heard it through the grapevine..."
They also visited Harrison down the hall to the west and Jason (new 19 year old with a rare form of cancer) down the other hall to the east. Nick stayed and visited with Jason and his mom for about a half an hour as they had lots of questions for him. Nice way to end the evening!
Wednesday morning I stopped by Dr. Sharma's office to personally add maternal pressure for him to look at the reports asap. When I returned to the hospital, I received another phone call from Dr. Chen; she had spoken with the radiologist and has decided there is some urgency to the scans after all. She asked if I would get a cd burned of the scans and have them delivered to Dr. Sharma for his review and schedule an appointment with him December 3rd, when Nick's counts have recovered. She still said not to worry yet - still could be nothing, but may need surgery. I personally picked up the scans and hand delivered them to Dr. Sharma's office; due to the holiday, we won't hear from him until Monday, which makes sense anyway since they have to present to the tumor board. This news cast a shadow for the rest of the day. This is a strange space to be in - we don't want to worry yet until we know, but...
Thanksgiving was quiet. We brought up Marie Calendar's turkey feast and watched a football game or two - well, I did, everyone else took a nap.
Just checked Nick out tonight! He is pretty pooped but glad to be home. He needs to get two shots tomorrow - one for his white blood cells and a new one for the red blood cells (I guess they were feeling left out).
We are thankful for so much! We hope everyone's family was blessed this Thanksgiving holiday. I will post again once we hear back from the doctors next week.
Mom
On Monday morning, Nick had both scans done, lab work, appointment with Dr. Chen (who was not worried about his eye) and then nabbed the last bed available at Huntsman. Whew! We received the CT scan results later in evening and it was a little concerning to me.
Tuesday afternoon, we received the MRI results; also concerning. I spoke to Dr. Chen and she told me not to worry, probably post-surgery or radiation change. She had sent the results to Dr. Sharma (Nick's surgeon) for his assessment and will also present to the tumor board next Monday. I sent an email out to the "rhabdo kids" group and heard back from 2 other moms that stated sinus/orbit rhabdo often have positive scans with no cancer - could be anything from residual treatment to snot. Then later that night, Nick's godmothers arrived with Chinese food and a surprise - they came in his room dressed as grapes singing, "I Heard It Through the Grapevine", but with their own lyrics written by Denise herself (a songwriter, who knew?).
Sample of the lyrics:
"Livin your life is what you'd rather do
Now all of the choices are up to you
Courage, strength and lots of prayers
Family and friends are always there.
It's your time to live loud and strong
With your own team to cheer you on
We're so proud that we...
Heard it through the grapevine..."
They also visited Harrison down the hall to the west and Jason (new 19 year old with a rare form of cancer) down the other hall to the east. Nick stayed and visited with Jason and his mom for about a half an hour as they had lots of questions for him. Nice way to end the evening!
Wednesday morning I stopped by Dr. Sharma's office to personally add maternal pressure for him to look at the reports asap. When I returned to the hospital, I received another phone call from Dr. Chen; she had spoken with the radiologist and has decided there is some urgency to the scans after all. She asked if I would get a cd burned of the scans and have them delivered to Dr. Sharma for his review and schedule an appointment with him December 3rd, when Nick's counts have recovered. She still said not to worry yet - still could be nothing, but may need surgery. I personally picked up the scans and hand delivered them to Dr. Sharma's office; due to the holiday, we won't hear from him until Monday, which makes sense anyway since they have to present to the tumor board. This news cast a shadow for the rest of the day. This is a strange space to be in - we don't want to worry yet until we know, but...
Thanksgiving was quiet. We brought up Marie Calendar's turkey feast and watched a football game or two - well, I did, everyone else took a nap.
Just checked Nick out tonight! He is pretty pooped but glad to be home. He needs to get two shots tomorrow - one for his white blood cells and a new one for the red blood cells (I guess they were feeling left out).
We are thankful for so much! We hope everyone's family was blessed this Thanksgiving holiday. I will post again once we hear back from the doctors next week.
Mom
Sunday, November 18, 2007
The man, my boy, amazes me...
This may embarrass Nick but that is my maternal right. I want to post a note to acknowledge what a fine, young man Nick has become. It is Sunday night and I'm in awe of what he has accomplished in the past 48 hours. A recap:
Friday night, he attended the Layton High state championship game with friends. Layton lost but what a thrill it was to root for his school.
Saturday morning, 7:30 a.m., he was dressed in full military attire to attend the weekend drill for the Utah National Guard. He came home exhausted having participated in the fitness exercises, with bruises on his back from doing 30 something sit ups on a hard floor and 30 something push ups (chemo memory can't remember the exact count). He did sit out the 10 minute run, but went through everything else. Note: Nick set his own pace - the Guard totally encouraged him to only do what he could and just let them know when he needed to take a break.
Saturday evening, off to watch the Utah Grizzlies play, compliments of Adrian Denny, the Grizzlies PR guy. They won in fantastic effort! Home by 1:00 a.m. - happy, sore and tired but managed to shine his boots for Guards the next morning.
Sunday morning, 7:30 a.m. again off to the weekend drill. At 4:30 p.m., he barely made it through the door before collapsing on the couch with a moan. He was sore from head to toe! He made it through the entire day, only sitting out another long run. The highlight was receiving accolades from his Sergeant Major in front of all the other participants commending him for his heart and effort. He made it and it was very important to him to be there this weekend. Pretty impressive for a healthy man, let alone a man in the midst of a battle with cancer.
I am a little worried he may have overdone it as he has a big day tomorrow - MRI, 2 CT scans, appointment with Dr. Chen and then being admitted into the hospital for another week-long round of chemo. But then I realize his internal fortitude will support his physical strength and he will be just fine. I also realize his internal fortitude has been blessed to him through his faith and his love as well as the unbelievable support from the prayers and positive energy being sent in his behalf. Thank you!
Mom
Friday night, he attended the Layton High state championship game with friends. Layton lost but what a thrill it was to root for his school.
Saturday morning, 7:30 a.m., he was dressed in full military attire to attend the weekend drill for the Utah National Guard. He came home exhausted having participated in the fitness exercises, with bruises on his back from doing 30 something sit ups on a hard floor and 30 something push ups (chemo memory can't remember the exact count). He did sit out the 10 minute run, but went through everything else. Note: Nick set his own pace - the Guard totally encouraged him to only do what he could and just let them know when he needed to take a break.
Saturday evening, off to watch the Utah Grizzlies play, compliments of Adrian Denny, the Grizzlies PR guy. They won in fantastic effort! Home by 1:00 a.m. - happy, sore and tired but managed to shine his boots for Guards the next morning.
Sunday morning, 7:30 a.m. again off to the weekend drill. At 4:30 p.m., he barely made it through the door before collapsing on the couch with a moan. He was sore from head to toe! He made it through the entire day, only sitting out another long run. The highlight was receiving accolades from his Sergeant Major in front of all the other participants commending him for his heart and effort. He made it and it was very important to him to be there this weekend. Pretty impressive for a healthy man, let alone a man in the midst of a battle with cancer.
I am a little worried he may have overdone it as he has a big day tomorrow - MRI, 2 CT scans, appointment with Dr. Chen and then being admitted into the hospital for another week-long round of chemo. But then I realize his internal fortitude will support his physical strength and he will be just fine. I also realize his internal fortitude has been blessed to him through his faith and his love as well as the unbelievable support from the prayers and positive energy being sent in his behalf. Thank you!
Mom
Tuesday, November 6, 2007
Halloween in the hospital
Nick here...
So my 8th round of chemo took place during Halloween and I had a fun time with it. Many friends and family were there on Halloween to give me some company. All of my friends were dressed up and it was fun to dress up with them and have some fun in the hospital.
I am so anxious to be done with my treatments and cant wait to finish 2 more chemos. I am also eager to finally have my Hickman port removed, which is the tube that goes in my chest and is used like an IV, and be able to swim again or at least get completely wet. Also, I start school at the University of Utah in the beginning of January and I cannot wait. I know all of this is just around the corner but time seems to be going by so slowly now that I am so close. Life never goes slower then when you are sick!
I want to thank my friends, Mom, and Grandma for the company during the holiday and the good time.
My fairy godmother was from "Happy Feet", complete with tap shoes!
So my 8th round of chemo took place during Halloween and I had a fun time with it. Many friends and family were there on Halloween to give me some company. All of my friends were dressed up and it was fun to dress up with them and have some fun in the hospital.
I am so anxious to be done with my treatments and cant wait to finish 2 more chemos. I am also eager to finally have my Hickman port removed, which is the tube that goes in my chest and is used like an IV, and be able to swim again or at least get completely wet. Also, I start school at the University of Utah in the beginning of January and I cannot wait. I know all of this is just around the corner but time seems to be going by so slowly now that I am so close. Life never goes slower then when you are sick!
I want to thank my friends, Mom, and Grandma for the company during the holiday and the good time.
The "Brokeback Mountain" theme was a little too much for Rob & Joey!
Nick & Savanna
Jay, the nurse had a great costume! The whole gang!
My fairy godmother was from "Happy Feet", complete with tap shoes!
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