Noah’s Journey with Primary Sclerosing Cholangitis and Bile Duct Cancer
August 26, 2019 - Noah, now 31, was diagnosed with the rare liver disease Primary Sclerosing Cholangitis (PSC) and Ulcerative Colitis, a related disorder, in 2001 at the age of thirteen. The only cure for PSC, also called Walter Peyton’s Disease, is a liver transplant.
After living and working in Osaka, Japan for 5 years, Noah was let go by his employer in December of 2017 due to his health concerns and has been unable to work since that time. Noah and his wife Rena moved to Bismarck, North Dakota to live with Noah’s family in January of 2019. It was clear by that time that Noah needed to be closer to his medical team at the Mayo Clinic in Rochester, Minnesota.
While being evaluated for liver transplant at the Mayo Clinic in June it was discovered that Noah has metastatic bile duct cancer (cholangiocarcinoma). This complication of PSC makes a liver transplant impossible. This setback is, of course, a major disappointment. Noah has been sent home to Bismarck to start chemotherapy soon.
Chemo was delayed due to severe jaundice which began in May. It was treated with bile duct stents which have been effective, but Noah needs to return to the Mayo Clinic every 10 weeks to have the stent replaced.
Surgery may be possible at some point, but radiation is not an option due to the potential destruction of liver tissue.
Here is a link to information on bile duct cancer (cholangiocarcinoma) from the Mayo Clinic’s website:https://www.mayoclinic.org/diseases-conditions/cholangiocarcinoma/symptoms-causes/syc-20352408
Many friends have expressed an interest in helping; some even wished to be tested to be living donors for the liver transplant. Others inquired about offering financial assistance. All who offer help, assistance, prayers, and support have touched us with their generosity and kindness.
A benefit account for Noah has been created at our credit union that can receive checks:
Benefit Account Noah Bicknell
Capital Credit Union
204 W. Thayer Ave.
Bismarck, ND 58501
This CaringBridge page is also linked to a GoFundMe account for those who prefer to donate online.
Noah and Rena have health insurance which will cover his treatments, prescriptions, and transportation costs to and from the Mayo Clinic. Rena is working for a small company in Tokyo via the Internet but will miss workdays while she is caring for Noah.
Costs for Noah include insurance premiums, deductibles, and related out-of-pocket expenses, meals and lodging while in Rochester, future trips to Rochester for stent replacements, and travel, lodging, and meals for his caregivers.
Noah and Rena remain positive and resilient, and Noah's recent Facebook post included the following advice for moving forward:
1 - Enjoy all that you can.
2 - Don't panic.
In that spirit, we wish to thank our family, friends, and Noah's medical team who sustain our spirits with their care. Noah's brother, Seth, has decided to return to Bismarck to support him during his treatments. This gives us all a real boost and new energy. Thank you, Seth!
Our gratitude also goes out to CaringBridge. We encourage all to support them, and to seriously consider becoming organ donors.
Wishing you all the best,
Noah, Rena, Seth, and Sue Bicknell