Spencer’s Journey with CF related Pancreatitis

TPIAT (total pancreatectomy with islet autotransplantation) and recovery for Spencer.

Hi friends and families - baseball, softball, Rhode Island, Massachusetts, Vermont, URI - and perhaps some gracious supporters we may not even know yet.

Summary

My name is Hiram Barber, Spencer's Dad. Over the last 2+ years, Spencer has been suffering with severe, very painful, cystic fibrosis related pancreatitis.

On Friday, September 29th, Spencer goes into a 10+ hour surgery, TPIAT. This surgery involves the complete removal of the pancreas, gallbladder, appendix and spleen and the subsequent transplantation of isolated islet cells from the removed pancreas back into his liver to maintain some level of insulin production. The surgery is a long-anticipated milestone, with a twelve month recovery. From there, the life-long journey with cystic fibrosis comes back into focus.

Simply, I am seeking your support to raise $25,000 to help with the costs of this portion of his journey - medical, pain management, surgery, recovery, travel, living arrangements and expenses.

Spencer's Journey in Detail

Shortly after graduating from the University of Rhode Island (URI) in '21 and just as he was heading toward Florida Institute of Technology (FIT) to pursue his MBA, Spencer found himself hospitalized with debilitating "crazy ass pain" from pancreatitis. We didn't know it then, but many months (and many pancreatitis attacks later) with the help of Mayo clinic, we found out the pancreatitis is being caused by cystic fibrosis, a genetic disorder that affects the lungs, pancreas and other organs.

Read Spencer's article “How Pancreatitis Led to My CF Diagnosis ” on the Cystic Fibrosis Foundation’s web site - from his first bouts with pancreatitis, to Mayo Clinic’s diagnosis, to working with his top-notch doctors in Minneapolis:

Fast forward to '23. Life was finally getting to a livable new normal on a very expensive, fairly new drug to market, TRIKAFTA. Living with me in Rhode Island, Spencer had re-started his MBA again as well as a part-time job while still adjusting to the new meds and routine. Unfortunately, this was short lived. What seemed to be working, simply stopped. After multiple hospital runs in June, we knew we had to get back out to his teams of medical experts in Minnesota. We left the ER in Providence, grabbed a couple of one way tickets to Minneapolis and found help with the hospital associated with his clinics.

The M-Health Fairview based medical teams and clinics rallied - and we continue to be so grateful for their life changing support!!

After extensive consultation with the leading experts, we decided the best course of action for Spencer was to be set up in a Minneapolis apartment - walking distance to his clinics and emergency hospital pain management support while awaiting a Total Pancreatectomy with Islet Autotransplantation (TPIAT) on September 29th. This complex surgery can offer him a second chance at a pain-free life, free from the complications of chronic pancreatitis. The recovery from this procedure is realistically twelve months.

Despite the constant pain and limitations caused by this debilitating disease, Spencer has remained hopeful, strong, and determined to overcome these obstacles. He is actually looking forward to tackling his next challenges - a lifelong journey with CF, but without the pain created by a failing pancreas.

Why We Need Your Help:

While Spencer has insurance coverage, the out-of-pocket expenses - copays, prescriptions, Minnesota based living arrangements, post-surgery care, ongoing travel to meet with his teams - are very significant. We are seeking support to raise $25,000 to help cover these costs as well as his lengthy recovery and then his ongoing medical journey with cystic fibrosis.

How You Can Help:

Your generosity can make a significant difference in Spencer's journey towards less pain, and improved circumstances to focus attention on the long-term effects of cystic fibrosis care.

Please share this GoFundMe page. Spreading the word is just as important as donating. Your continued support and involvement are greatly appreciated. We are deeply grateful for your generosity, thoughts, and prayers.

Thank you so much for being a part of this journey with us!

With heartfelt gratitude,

Hiram ('Dad')