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Rob VS PSC: A Fight for a Liver

$4,280 of $10,000 goal

Raised by 27 people in 2 months
In May of 2018, my husband of 11 years, Rob, was diagnosed with cholangiocarcinoma secondary to an autoimmune disease called Primary Sclerosing Cholangitis (PSC). People with PSC have a 10% chance of getting this form of bile duct cancer, lucky us.  Essentially, his body is attacking his own cells as if they were an intruder i.e. bacterium, virus etc. This caused bile to back up leading to this cancer.




Rob has dealt with autoimmune issues for the better part o his life; having his colon removed in 1997 due to Ulcerative Colitis, which our 11-year-old daughter also has. Rob is no stranger to the doctors or medications, but we now face a new obstacle: transplant. 



Rob is awaiting a liver donation, the only hope he has at a prolonged, quality filled life.  He has been doctoring down at the Mayo in MN.  Last summer, per Mayo protocol, Rob stayed in Rochester for 3 weeks receiving IV chemotherapy and radiation treatments twice daily.  He currently has a regiment of oral chemo taking it 2 weeks on and one off. 



These are not curative measures. Rob is seen by his team at Mayo, scanned and has labs drawn every 3 months to assess his situation.  He receives a "MELD" score, this score essentially shows how sick he is and what his prognosis will be should he not receive a liver soon.  At these appointments they are also looking for any spreading of the tumors.  If this were to happen, Rob would be taken off of the organ registry and we would explore a secondary path.



Rob is an accountant at a company he loves and has been with them for many years.  We have a soon to be 12-year-old daughter who is very knowledgeable and aware of what her dad is going through. Rob was an assistant coach for her basketball team the last two years.  He is an active member in his community and never shies away from helping others. He was an EMS first responder for years. What I am getting at is that he is not a bad guy, far from it, just dealt a pretty sh*tty hand.



We are starting a GoFundMe (as we had in the past) to help cover costs during his journey to a new liver.  We will use the funds for travel, food, medications, medical bills, and housing during the transplant process. We don't expect much and have been so grateful to all of those who have already helped.



It has been a very bumpy ride and will only continue to get worse.  Rob is a very private person, but he is suffering and even kind words are appreciated.

Thank you.
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Hey everyone, I don’t really have much to update. It sounds like Rob’s benefit is going to be very informative and fun! Many awesome people/businesses have donated for the silent auction, raffles, bake sale etc. Alena Raida is just killing it with getting things set up. I swear I bother that poor lady everyday asking what I can do, but she’s got it all covered!

Unfortunately, Delia won’t be at the benefit due to a school trip that she worked all year to go to.

Mark those calendars! May 31, 4pm-8pm at the Mt. Iron Community Center.

There’s also going to be live music and a booth set up with information (and from what I hear a nurse or two) about living donation.

I was thinking of making a bet with Rob on who is going to bawl their eyes out first... what kind of odds do you’d think I get?

Hope to see you guys there! You’re support means more to us than you know.
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Our local paper recently did an article on Rob, living donation, and the benefit. We were very impressed with the amount of information concerning living donation that was presented. It was well written and thought out. We really appreciate the chance to shine a light on living donation and bring about awareness of PSC.

We also found out that an ad for the Benefit will be placed in the paper every day until May 31st. Thank you very much to the friend that made that happen.

Unfortunately, the kiddo will not be at the benefit. She worked all year crossing kids safely in the mornings at school to be rewarded with a ValleyFair trip that just so happens to be the same day. We certainly could not deny her that.

I don’t have much for updates about Rob’s health. He had an oncology appointment yesterday. From what I understand he will continue with his regular chemo dose this cycle and we will keep an eye on his labs. His bilirubin did come down a bit to a 5.2 after his latest ERCP. He was pretty tired yesterday but we are contributing that to his recent vaccinations. He woke up his morning feeling better.

Rob and I are very grateful for everything and it’s very hard to express how amazed we are with our community and friends.

Thank you all so much.
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Some of our friends decided to put on a benefit for Rob! They are just too amazing!

Rob has been working at Fortune Bay for 19 years now (wow) and they will be generously providing the food.
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This is the picture Rob was referencing in his FB post. Bilirubin hit 6.5 on his most recent labs. As you can see the Jaundice is really becoming more obvious.

Please share the Mayo link previously posted and/or our go fund me link.

Thank you everyone who has or is even thinking about filling out the questionnaire to be a living donor. A lot of people will get ruled out in the first several questions. For example, although I have the same blood type as Rob, my medical history excluded me as a possibility. We don’t take this lightly and we know what we are asking is huge, just check out the link and/or share.


https://www.mayoclinic.org/departments-centers/transplant-center/living-donor-transplantation/gnc-20203911
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$4,280 of $10,000 goal

Raised by 27 people in 2 months
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