Thursday, January 31, 2008

Big Bummer

So starting last night I have been running a little fever, and later this afternoon it was 101.6 so I had to come back into the hospital. UGHHH!!! I am sick of the hospital. Right now they are running tests and giving me anti-biotics to keep my fever down. My counts are in the gutter so hopefully they bounce back within a couple of days.
My mom had to stop at her office on the way to the hospital to pick up her computer. At the office, a friend of my Mom and Lee's was visiting from Hawaii and I had the privilege of meeting him (Albert Perkins). He is a very kind and thoughtful man. His daughter (Isis, age 3) was the one who sent me a Hawaiin lei several months ago to wish me well. On this visit, Albert had brought me a beautiful ukulele. He and his daughter play and sing in local hospitals to cheer up the patients and give support. His daughter wanted to give me her ukulele but Albert decided to give me my very own. It is an awesome gift and I wanted to thank Albert so much for the gift.
Alright well I am now going to challenge my Mom in a competitive game of gin, and then I will try to get some shut-eye for the night. I will post again probably tomorrow.
Thanks everyone!


Sunday, January 27, 2008

10 down 2 to go

So I just got out of the hospital yesterday which is good... but its also the time when you feel the sickest and its hard to eat. UGGG! I dont know why but this last stay at the hospital seemed to last longer than any other time. I was going to go crazy!
This morning my buddy Rob took me to the hospital to get my Nuelasta shot, which was no fun because this morning was hard to get going. I felt pretty sick... but once I forced some fluids and tastless food down me I felt a little better.
I will have a week of just relaxing and staying as clean as possible so that I dont catch any disseases or viruses.
I am so anxious for all this to be over.... especially before summer since I didnt do much last summer. So Jay, be prepared for some Utah boys skiing up at your place this summer because I think that would be a blast.
Also, I want to thank everyone for their love and support. Especially Denise and Jennie who are the coolest ever! I love it when you girls dress up or bring me some good food. I cant say thank you enough!

Ill keep in touch...


Thursday, January 24, 2008

AK-47 and The Incredibles

Nick here....

Its my 4th day here at the Huntsman for my 10th round of chemo and it has dragged on forever it seems. Its probably because I was feeling the healthiest I have in a long time and my stay here is a day longer since I maxed out on the Doxarubicin (Red Devil) chemo and have gone back to Etoposide which I took while on radiation. Can you believe I have maxed out on a chemo for life. Thats nuts! It cant be healthy.
So yesterday I was relaxing in my room when my nurse came in and simply asked me if I wanted to meet Andre Kirilenko, who plays for the Utah Jazz. My response to her was very simple, "Uh..... Duh!". I guess he only comes about once a year to visit patients and give some support. I knew he has a room here in which he donated to the hospital, as so does Karl Malone. So it was cool to see him in person and meet him. He is definitely not as big as I imagined but who cares, he leads the Jazz in blocks (I think) and he is Russian. You dont wanna mess with that. He was a really nice guy and so was his wife, who is a rockstar in Russia. Andre signed a shirt, hat, and a wooden Russian doll, (which I think is a collectors item) and talked with my mom, friend Shawn and I. It was reall neat. Then channel 4 news took some pictures, video, and a short interview which they said would be on tv and never was. I guess I looked too healthy for them cause I had a smile, hair, and some good looks (ha ha) because the patient who made the 10 second clip on the news was in bed, and didn't look nearly as good as I do. No offense. HA But oh well, it wasnt too big of a deal. At least I got to meet him and take some pictures.
My day was then topped off later when Jenny and Denise showed up with some food, and dressed up as The Incredibles. They looked great in costume as usuall and it never gets old seeing them dress up every round. They also had a gift for me which was way unexpected, and also very generous. They presented me with a Visa gift card that was attached to a piece of paper saying Ogden Airport is waiting for me this spring to go SKY DIVING! Thats right, the real deal is going to happen this spring. No more wind tunnel, its time I fall out of a real plane and fall at 120 mph for 7 minutes. I cant wait, its going to be the biggest rush ever! Thank You Denise and Jennie!

I think this is all that has happened so far, if not I will post agian but I think thats it. HA so thank you everyone for the thoughts and prayers. Also thanks Savanna and Shawn for coming up to visit. It was fun.

Here are some cool pictures....

Sunday, January 20, 2008

Sky Diving

So for my birthday my Mom and Lee suprised me by taking me to iFly at the Solomen Center in Ogden. It is a wind tunnel that simmulates sky diving. My sisters, girlfriend, and Mom and Lee all got to do it as well and it was a blast. I went back and did it by myself the next 2 days because I am addicted. I want to do the real thing now as soon as spring hits.
The funnest thing about doing it with family is you see the expression on their faces as the wind is rushing past them at about 85 mph. Everyones (especially my sister Carly) cheeks would flop around like they would if you stuck your head out of your car windown at that speed. Out of all of us, my youngest sister Kelsey who is 12, was the best for her first time. But now that I have gone by myself twice after, I am able to do some spins and controll myself without the instructor spotting me.
After our time was up, one of the instructors did some stunts in the wind tunnel which was amazing. Its hard for me to describe but he was doing nose dives and spins like you couldn't believe.
After the iFly experience, we went to the Timbermine and had some good steaks which hopefully put a few more pounds on me. I am at least 145 now. HURRAY
The day before my birthday I went out with all the guys and Savanna to the Hooters in Midvale where we told funny stories and ate wings all night. Because it was my birthday the Hooter's Girls make you spin a Hoola-Hoop while they sing to you. Then they cover you in "I Heart Hooters" stickers. It was great!
So I will start my 10th round of chemo tomorrow (UGHHHH!) and will be in for 5 days as usuall. Im so bummed, especially since my hair has grown back somewhat and I am beginning to look good again. I just cant wait till they day I am done and I can play some hockey and wakeboard again. IT WILL COME!
Lastly, I have some very unfortunate news. My friend Harrison Matthews, which I met in the hospital passed away on the 16th of this month. He was a good kid and I wish I could have had the time to get to know him more. My thoughts and prayers are with his family and girlfriend Katie.

Thanks everyone for all that you do. You keep me going! -Nick

p.s. Here are the pics from iFly

Thursday, January 17, 2008

Happy Birthday, Nick!

He did it! Nick is 19 years old today! I'm sure he'll want to post tomorrow with details. We have a few plans for today, but it will be a challenge not having a birthday cake (no sugar); a meat pie, perhaps? I'm obviously filled with many emotions today - it's all wonderful!

We met with our SLC surgeon yesterday as we thought it was respectful to explain in person why we chose the treatment plan we did. We hadn't talked to him since before we cancelled the surgery. He was in some agreement; he doesn't feel the extreme surgery is necessary (NY docs), but does feel there is very probably cancer in the nodule (original tumor site) and in the back of his jaw bone towards his ear. We agreed to monitor the scans in 6 weeks very, very carefully. He really is a great guy and I'm glad we met.

Today is a great day!

With love,


Tuesday, January 15, 2008

Ok, so here's the deal...

We finally met with Dr. Chen this afternoon (delayed by home emergency - it just wouldn't be any fun without a postponement of some kind). She has talked to both Dr. Wexler & Dr. Albritton at length.

We first discussed surgery: did I mention Dr. Wexler called me yesterday to state his surgeon "would now speak to Nick in person regarding surgical options" after reconsidering Dr. Wexler's argument? Traditional surgical protocol is to remove ALL areas where the original tumor touched - meaning, eye, orbit, jaw, nose, etc. to make sure they got it all. Dr. Sharma still is in favor of a maxillectomy (removing Nick's jaw) utilizing a new protocol in shrinking the original tumor site - which we've done - and then have a modified surgical area to remove. Both Sharma & Wexler feel this is the only chance Nick has in a very small window of opportunity. Dr. Chen & Dr. Albritton feel that because Nick had cancer in his lymph node, surgery will ensure no recurrence in the original tumor site, but cannot guarantee recurrence in other areas of his body.

She would like Nick to have 3 more rounds of chemo. I asked her if that makes sense, as it appears he is resistant to chemo. She feels his original tumor was incredibly aggressive and fast growing (we agree) and he has been off chemo for 2 months. If the remaining cancer cells are resistant, they would already been growing like crazy and presented themselves in his latest MRI and PET scans. She said the chemo will kill 80% of the existing cancer cells in round 1; round 2 will kill 80% of the remaining 20%; the 3rd round will do the same. Ideally, his body will be able to handle the remaining cells on its own (this is where diet is so important!).

We then discussed biopsies - both in the new nodule found in his gums/teeth area, as well as the lining in his sinus. She said if the results are either positive or negative, she would still recommend the same 3 rounds of chemo. She would like to do the biopsies once chemo is complete with scans every 6 weeks. If the biopsies are still positive, we can then consider surgery or clinical trials. She feels she is giving him the very best and powerful chemotherapy out there now.

Nick and I were left alone to discuss his options. I asked him if he wanted to call his dad or Lee, but he declined. He said he feels really good about what Dr. Chen said - it makes sense to him, and more importantly, it felt right. He told her to get him scheduled and he starts chemo on Monday. We also told her we realize this is all a best guess scenario supported by crossed fingers and prayers. Just as Dr. Albritton stated, if Nick does have tumor recurrence, it won't be because we didn't do surgery or didn't have more chemo, its just the cancer cells showing off their strength. At least we feel proactive with the chemo in hopes it wipes out any invisible cells that may be in other areas of his body. We also stressed that we will not have any regrets with our decision - no looking back, only forward. (One tiny peek in looking back, however - had we not decided to get a 2nd & 3rd opinion, Dr. Chen was allowing Nick to have major surgery on Jan 3rd. I'm am incredibly gratefuly for the grace of God in guiding us to find more help!)

The good news? The mohawk goes.

Thanks for keeping up with the news; seems to change on an hourly basis lately.

With love,


Saturday, January 12, 2008

Clear as mud

Here is what we've learned so far:

Last Friday, Jan 4th, Dr. Wexler sent me an email stating he and Dr. Chen (via email) have concurred that surgery was the logical next step for Nick after reviewing the latest PET scan but before meeting with his surgeons and review of the latest MRI scan. On Thursday, Jan 10th, he finally called Lee and I to say: "After meeting with our surgical staff, it has been decided NOT to do surgery." He wouldn't answer any questions, as to not misrepresent or put words into others' mouths. He did state there is not significant evidence of disease to warrant a life-altering and disfiguring surgery. He kindly referred us back to Dr. Chen for further treatment options. Fine.

Yesterday, we heard from Dr. Karen Albritton. She was incredibly thorough during our 45 minute call. She (and Dr. Grier and Dr. Rhabar) also agree with Wexler that there just isn't enough evidence of tumor recurrence. The offer is still available if we still want to have an "aggressive biopsy" rather than the full surgery, although they cannot weigh any benefits to having this done.

She has also communicated with Dr. Chen this week as the Boston radiologist has found a suspicious nodule above his teeth in his gums that is about 1/4" by 1/2" that has grown inbetween the Nov and Jan MRIs, altho it doesn't show up on the PET (not active). Dr. Chen asked her if she thought more chemo would be appropriate; the answer is - could be.

Bottom line is to first, get a needle biopsy done of the nodule. If it is negative, we may take a breath of relief and just monitor Nick with follow-up scans to see if a tumor presents itself. If the biopsy is positive, we're in big, big trouble and will consider alternative chemo drugs. She said it is similar to antibiotics; if penicillin doesn't work, another antibiotic may help. If Nick relapses next month, it won't be because of we didn't do surgery or didn't have more chemo - it's just the rhabdo cells flippin us the bird and saying "bite me". She also said our surgeon doesn't need to do the biopsy (they like to take things out with scalpels) - a radiologist can do it. Dr. Albritton sent me the two MRI pictures so we could see exactly what she was talking about. She is a wonderful person and let us know she would be available next week should we (or Dr. Chen) have further questions or consultation, just to give her a call.

This Monday, Dr. Chen is presenting Nick's case to the tumor board and we have a meeting with her on Tuesday morning. I think we are going to go ahead with the biopsy and see what unfolds. I don't have a bad feeling about the results, mainly because the nodule doesn't appear to be active.

Unfortunately, this battle is going to be a continual journey of tests, waiting for results, treatment changes, more scans, etc. It is not an exact science, it is not black and white. Because this cancer is so rare, there isn't enough data to determine a proper protocol. We are going to help best we can in getting Nick's diet radically changed (can you hear Kelsey groan?).

In the meantime, Nick has grown enough hair on his head to get another mowhawk - maybe he should have more chemo... He is going to call his counselor at the Univ of Utah and see if he can start a week late (using a "CHIP" - Cancer Has Its Privileges" card). He is feeling and looking great (except the hairdo).

Thanks to all of you for your prayers! We are so humbled by the love and support, it is amazing. One more thought; just as I'm ready to fly back to NY to personally strangle Dr. Wexler for not responding in a manner I anticipated, I have read in my online rhabdo support group there are several newcomers, as well as veterans with relapses, where infants and toddlers are battling this horrific cancer. And Dr. Wexler is their only hope. These little ones are having major organs removed; chemo treatments that make them so sick, they will truly never fully recover, even if they beat the cancer; parents with little or no outside support, living in a strange, overwhelming city away from home - so as proper perspective resurfaces in my life, please extend your prayers to all the others that so desperately need it, too.

God bless these wonderful pediatric oncologists, God bless our families and friends and may God bless you.


Sunday, January 6, 2008

and still waiting....

After Dr. Wexler reviewed PET scan, he asked for another MRI. We were able to get that scheduled last Wed and sent to NY & Boston via Fed X on Thursday. As of last Friday, Dr. Wexler (NY) said that he has had lengthy discussions with Dr. Chen (SLC) and both agree on surgery but he and his surgical team still need to review the MRI for final opinion. He will not be able to discuss until Wednesday, Jan 9th.

Dr. Albritton & Dr. Grier (Boston) were to have held a conference call with us last Friday afternoon. Call was cancelled at the last minute due to an emergency. Unfortunately, Dr. Grier will not be available at all next week and Dr. Albritton requires his input on MRI review before giving their final opinion (she may be able to communicate with him via phone).

As far as I can tell, the MRI report states there is NO new tumor growth, but probable post-surgical inflamation from surgery done in September (which would also cause his PET to have readings of 5.2). So the healthy rhabdo cells still there are just biding their time for now.

So, not a thing we can do right now but enjoy the snow, the break from chemo (Nick is getting hair again), and the food (he's continuing to gain weight).

Hopefully by end of next week, we'll know what we are going to do. Thanks for checking in.


Tuesday, January 1, 2008

Some soothing music

Nick here.....

After everyone has heard the news of the recurrence in my sinus and the soon to come surgery, a lot of people seem to be worried and a little down. I find music is very good to listen to if you are worried or sad (whatever it is), and I happened to hear a song a few days ago at a friends house that just fit perfect for what is going on right now with my fight with cancer. Also, as soon as the song went on, everyone in the house just started singing it together out loud. It was pretty cool and made me feel good, so I thought I would try to put the song on my blog so everyone checking in on me could hopefully get the esteem boost that I did. It just puts a smile on your face. Good old Bob Marley!