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Rob VS PSC: A Fight for a Liver

$1,580 of $5,000 goal

Raised by 22 people in 26 days
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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Rob will be heading down to the Mayo next week for a couple of days of appointments. He will have scans done to assess if the cancer has spread or not, among other consults.

Thanks again to everyone for helping us out so much. I’ll be sure to update after we know more.
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Woke up this morning to see several donations, thank you guys so much. I am going to try my darndest to keep you all updated.

So, something pretty awesome happened last week...

Delia has been playing basketball for a few years now and we are pretty certain this has helped her (and us) deal with our new reality. Last year she was able to play on a traveling team, Northern Lights, based out of Superior, WI. They had practice once a week and tournaments in the cities on weekends. It was an amazing opportunity, but once Rob received his cancer diagnosis we told her playing for them wouldn’t be in the cards this year.

Maybe it is?

To start with, a couple of awesome ladies offered to help with travel and hotel stays if Delia were to make a traveling team. I don’t want to name names since some people are hush, hush about such things. This got us thinking about it.

I had also remembered that last year it was mentioned that scholarships of some sort may be available to any girl who can’t pay the initial fees, because Northern Lights never wants a girl to miss out because of financial issues.

Rob emailed them and asked about that...

We received an email from Adam of Northern Lights telling us that if Delia makes the team (tryouts in March) we won’t pay a dime.

It’s ok, we cried a little too.

We are a basketball family and regularly watch games together, Rob even goes with us to the YMCA if he’s feeling up to it. Not to mention he helped coach Delia’s basketball team the past two years! This is such a huge gift to Delia and to us! Now Delia just has to work her little butt off to make the team! ; )

Just wanted to share that with all of you.
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Just some very cute pictures of Delia with Rob. Delia will be turning 12 in April.
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$1,580 of $5,000 goal

Raised by 22 people in 26 days
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DK
$100
David Kingsbury
22 days ago
MR
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Myya Roethler
23 days ago
RM
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Ryan McKeon
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GL
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Garrett Lamppa
23 days ago
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Sarah Squillace
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SW
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Scott Williams
23 days ago
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Mike Lombardy
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Rick Anderson
24 days ago
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Peter Miller
25 days ago
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