Nick's Cancer Butt Kicking Fund
Around 2000 people in the US are diagnosed with Ocular Melanoma every year. There is no known cure for this rare and aggressive cancer . Prognosis is grim and experimental treatments that could extend life are expensive and not often covered by insurance.
Nick's tumor started in his right eye. Undergoing brachytherapy, a direct type of radiation, he was able to save his eye along with some of his vision.
Unfortunately, the melanoma has metastasized to his liver. He will be starting an experimental treatment in August that will hopefully stimulate his own immune system to fight back the cancer.
Nick is a writer, a husband, and a father to four young children who he wants to watch grow.
Many friends and family have reached out wanting to help. Any donations will be used to cover medical expenses and the cost of traveling to and from specialists across the country. Because this cancer is so rare there are only a handful of doctors in the country who can treat it.
The $10,000 goal is sort of arbitrary in that we really don't know how much this will end up costing. Regardless, we appreciate any support and all good vibes. The West Family sends you their love.
Nick has been on my to write an update for a month. Truth be told, I’ve written two but never posted them because as soon as I thought we had a handle on what was happening, things changed. Things are a little hectic around here but we manage.
So for those of you who aren’t up to date on Nick’s treatment, here is the run down.
He had scans on Halloween to see if the MEK inhibitors worked. They didn’t.
We took our two oldest to Dinsey Land. Nick got a wheelchair and cut our wait time in half. It was a blast.
There are two large tumors growing into his spinal code.
We drove to Farmington to get radiation set up as soon as possible.
Set a 10 day radiation plan for his spine.
Found out from MD Anderson that the soonest they could do TIL was January.
That’s too long to wait so we set up chemo at Huntsman.
Had to cancel all radiation appointments because you can’t really do chemo and radiation at the same time.
We found out that his cells didn’t grow enough to do TIL. Sent scans to MD Anderson to see if reharvesting is possible.
The Friday before Thanksgiving he had one massive dose of radiation to his spinal tumors.
The Mondday before Thanksgiving he has his first round of chemo.
The next day we drove to Arizona to be with family. Nick was tired and in pain but it was still a good time. It was hard but we are both glad we did it.
Nick caught a cough from the kids. They got over it, he didn’t. He started taking more pain meds than usual.
Called our oncologist and he told us to go to our local ER and have blood work and X-rays done.
Nick has pneumonia and pancreatitis. He completely lost his voice.
Transferred him to Huntsman were he’s been for the past five days.
Started antibiotics. No food for two days.
He’s a little better. Started eating again.
Last night he was in a lot of pain and his abdomen is bloated. They thought maybe too many fluids but they are doing a chest X-ray to see what’s going on.
They are moving him towards getting him home but he will be there for at least one more night.
We have not had insurance this entire time. Medicaid finally got approved and Huntsman paid a months worth of COBRA. Everything works out in the end but being in paperwork limbo is stressful.
MD Anderson says that there would have to be a significant washout period after chemo. I don’t know what timeframe that puts us on. I’m researching a drug called IMgp100 that could be a possibility.
Our immediate goal is to get Nick home, possibly with in home care so we can all be together.
I’m actually on my way out to go see Nick so I don’t have the time to tell all of you how amazing your support has been and how we couldn’t do any of this with out you.
The West family loves you!
I understand that there are many wonderful folks who have donated to this GoFundMe and helped my family through this battle with cancer. So, I don’t want to turn this into some kind of political activism account. But I feel the need to express something that is not just political but very personal.
Right now, Republican senators are pushing to vote on a healthcare law called the Graham-Cassidy bill. The GOP are rushing this vote for reasons that are so transparently partisan and money-fueled, it would be hard for anyone to deny. This bill would repeal the Affordable Care Act (or Obamacare) just for the sake of repealing it.
Here’s the deal, taking away the protections that I’ve been lucky enough to have because of the ACA would be a death sentence to me. Right now, my insurance company, SelectMed, a Utah based company, is pushing for this kind of legislation and lobbying for high-risk pools — another death sentence for me and millions of others. The bottom line is: I hurt their bottom line — I am a greater benefit to them if I die. How messed up is that?
So, regardless of your party and political beliefs, please take a moment to realize that the ACA is literally keeping people alive — including me! I understand that Obamacare is not without its problems — but it is something that can be built on — or at least, there’s a better way to go about this than the Graham-Cassidy way. Unfortunately, sometimes we have to use the law to force companies to do the right thing. And this is one of those times.
I urge everyone to call their state Senators TODAY and ask them to vote “no” next week on this travesty of a bill. I’ve called Mr. Hatch. You can find your representative by dialing: 202-224-3121
Don’t put it off.
I love you all. Thank you for being there for my family.
Nick will be in a MRI machine for the next 115 minutes, then a consultation with the melanoma radiologist, followed by a meeting with Dr. Patel later this afternoon. Hopefully this long day will result in an appointment tomorrow or Friday to harvest the tumor from the top of his head.
From that tissue they will isolate the tumor infiltrating lymphocytes (cancer killing T-cells), grow them in a super high tech lab, then freeze them for future infusion. As always, there are countless variables, any one of which could disqualify him from this clinical trial and put us back at square one.
Up until two days ago, Nick has been on a MEK inhibitor chemo drug that in theory should target a specific mutation in his cancer. He has temporarily stopped due to a severe rash on his face and neck leaving open sores. Our oncologist back home is working on reducing the dose. Treatment induced colitis has plagued us for months and Nick experiences new and recurring pain every day.
During these last few months we also saw the total eclipse, spent a week in Lake Powell, camped in an orchard at Capital Reef, harvested our beautiful garden, and lived countless moments of joy with our kids and those we love. Life is good. Not even a stay at a “hotel” with dog hair covered pillows, yelling meth-head neighbors threatening to stab someone for parking in a manner displeasing to them, and a nauseating perfumed sanitation smell so strong it almost, just almost succeeded in masking the smell of ten thousand cigarettes can break our spirits. Life is an adventure. Searching for a new hotel at midnight in an apparently booked to capacity Houston is sometimes part of that adventure.
Love you all!
It's been a while since we updated everyone here. Y-90 liver direct radiation didn't work as we had hoped.
Scans three months ago showed growth in liver and spread to new parts of the body. The amount of cancer outside the liver disqualified Nick from the Delcath trial here in the US of A. Dr. Steadman in England didn't think Delcath would be very effective until we can control the decease outside of his liver. So Nick started a systematic immunotherapy of two drugs in hopes of doing just that.
One infusion landed him in the hospital for four days where he nearly died of dehydration. Not a good way to go.
He also did some direct radiation on his head and ribs. This resulted in some radiation pattern baldness but not in the death of that tumor. Damn!
There wasn't much else to do but wait to see if the systematic treatment worked so we took the month of July off from cancer. We took the kids to Yellowstone, spent time with family, and enjoyed the summer.
Some persistent pain in Nick's shoulder prompted earlier than orginally planned scans. It looks like the bastards have grown and spread throughout his body. He lights up like a christmas tree on the PET scan. New tumors in lungs, growth in liver, more in his legs and pelvis, and yes one in his shoulder now.
All bets are on the TIL treatment which is being tested in clinical trials across the country. It's a technique in which they harvest cancer fighting T-cells directly from the tumors, do science on them in a lab, and then infusion them back into the patient after they crash your immune system with high intensity chemo drugs. Sounds fun!
TIL was just approved for use in kids with leukemia so hopefully we can cut down some red tape and get access to this treatment. We are glad that regulations exist but we are more than a little tired of our options being limited to what's FDA approved. This cancer is so rare and unpredictable, everything used to treat it is experimental.
Dr. Grossman at Huntsman is calling two great doctors who do TIL, one in Texas and one in Florida. He will get us in the door and we will make this happen. We have a MEK inhibitor FDA approved drug in our back pocket if TIL is not an option or taking too long to set up.
This week we are taking the kids on a double header vacation. First a little camping in southern Utah followed by a week long stay at Lake Powell. We have been looking forward to this for a long time.
We continue to live and love. Our spirits are high. Fuck cancer!
Love, the West family
Love you Nick. I will meet you again on this side or the other. ♥ ;_;
Thanks for the update. Sending much love your way. Stay strong! And be your own best advocates. Push back or forward wherever you have to. - Jeffrey
Thank you Jen for the update , Nick , you and your family are heroes of mine i love you all G
Thanks for the update. Nick: call me! Jen: You're a damn good writer in your own right. Love the pics. And, yes, Capitol Reef is an enchanted place. Was this a Torrey motel you are talking about? Much love, Jeffrey
If you wanted a trip to England, why didn't just say so? This sounds like international, globe-trodding ass-kicking. Your name wouldn't be Bond, James Bond, would it?
I love the detailed updates, sounds like some really good news, stay strong. Nick, if you get up here to work, I would like to meet you in person. Best wishes to you and your family.
Nick are you home now ? our up at the huntsman ? please let me know when you are up there as i work 5 minutes away and can visit you every f---y day your there if they will let me and id love too . I work for Bio fire right on reseach campas and im a driver around there (the campa all day so i would love to come up and see you as i've alwaysed whiched i had as much Brain poer from you i believe you have much to teach the Uncle of yours .
You rock as well as your sweet family . we send love and light and hey when can we hangout i can come over while your working from home and help you .................just saying , your uncle Gordy oh yea you where going to send me a couple of links to some interesting things we talked about when we saw each other at Darla's over A YEAR AGO get off your ASS and do so what have you been doing anyway HUH
With all the love and light and caring generated and God's miracles working together your in good hands west family . God is in the business of bringing families together and is doing so right before our eyes . I Love you . G
Go Nick! You look amazing! We all really miss you and will be happy to see you!