Circle of Support for Don
Organized by: Friends and Family
That guy in the picture? That's Don. Don has been kicking cancer’s butt for 19 years. In 1997 Don was diagnosed with having Neuroendocrine tumors. Neuroendocrine tumors are tumors that are formed somewhere in the endocrine system…in Don’s case, we didn’t know where exactly the original cancer formed, but we did know that it had drastically spread to his liver with no option of being surgically removed. Chemotherapy was his only option. Over the next several years there were times of tumor growth and there were times of tumor stabilization, but after 14 years of chemotherapy and other treatments introduced along the way, he hit a road block. His body was no longer responding to treatment. The tumor growth was starting to inhibit the blood flow through his liver, leaving him vulnerable to blockages and possible ruptures in other organs. The liver he had was very literally killing him. His only option left was to get a new liver.
Don was approved for a liver transplant in early 2011. After only a few short weeks on the transplant list, we got the call that there was a new liver waiting for him. He went in for surgery and during the transplant, they discovered a golf ball sized tumor on the tail of his pancreas. This was the tumor that had evaded all previous scans and was the culprit for spreading the tumors to his liver for all these years. They were able to successfully remove the affected portion of the pancreas and in May of 2011, he was essentially cancer free for the first time in 14 years.
At that point, we had four and a half glorious years of not worrying about the dreaded “C” word. Of course, he still had more than his fair share of doctor visits, a bout of organ rejection and more medication than you can imagine. But it was four and half more years of birthdays, holidays, grandbabies being born, vacations and graduations. Four and a half more years of having our friend. Four and half more years of being a family. Regardless of the outcome, we will always be thankful to Don’s organ donor for allowing us that time.
Unfortunately, in November 2015 we learned that Don’s cancer was back. It has made its way back to the liver again. We don't know exactly what caused the cancer to return. It could be that there were miniscule cells leftover in his body after the transplant that eventually grew into tumors. It could be that his body is somehow predisposed to this type of cancer. All we do know is that we need to fight it. We’ve worked extensively with the University of Nebraska Medical Center, Immanuel Cancer Center and the University of Iowa Cancer Center to figure out the next steps to take.
After being down so many different treatment paths, what could possibly be left? PRRT Therapy. Peptide Receptor Radionuclide Therapy
(PRRT) is a form of molecular targeted therapy which is performed by using a small peptide that is coupled with a radionuclide emitting beta radiation. What??! Basically, this type of therapy is a form of radiation that specifically targets the type of cancer Don has. In basic terms, this therapy was essentially made for this type of cancer. Approximately 80-85% of patients enrolled in PRRT therapy show some sort of receptiveness to the treatment. Those are great odds for someone with this stage of cancer.
To get this treatment, Don will have to travel to the University of Basel Hospital in Basel, Switzerland. You might be asking yourself, “Why Switzerland? Can’t he have this treatment done at a ‘regular’ hospital in the USA?” The short answer is, “yes and no”. PRRT therapy is not currently FDA approved in the United States. The U.S. is currently conducting a PRRT clinical trial in Texas, but this clinic is nowhere near as advanced as the hospital in Basel. In addition, the U.S. is only authorized to use 1 type of radioactive drug in their trial, whereas Basel has been successfully using 2 different types of radioactive drugs in their therapy as a standard of care for over 15 years. Having the availability of the second drug makes for a much more versatile treatment plan. It allows the doctors to mix the blend of drugs and cater the therapy specifically to Don.
We’re working to get to Switzerland right away. (UPDATE: On July 27th we were notified that Don has been accepted for treatment in August) The treatment consists of 3-4 trips to Switzerland over the next 9-12 months. Each round of treatment costs approximately $11,000 (not including travel expenses). Since this treatment isn’t approved by the FDA and would not be covered by insurance, the cost of this treatment would need to be paid for upfront and out of pocket. The investment is great, but the reward is greater. The reward allows us to be together for just that much longer. Through this fundraiser we’re hoping to raise enough to offset a portion of these out of pocket expenses. As you can imagine, asking for financial help is awkward for everyone, but any tiny bit you can give would be amazing and all donations will be appreciated beyond belief.
It’s important to note that PRRT won’t cure Don’s cancer. The main goal of the therapy is to kill portions of the tumors and stabilize the cancer to prevent it from growing any further. This therapy would buy us several more years. We know that surviving 19 years after a cancer diagnosis is already rare. If you would have told us in 1997 that we’d have 19 more years together we would have been ecstatic. But now, here it is 19 years later and we’re selfish. We’re not ready to be done. He’s not ready to stop fighting. We’re not ready to stop fighting. Let’s show him that nobody fights alone.
In addition to our Crowdrise page we’re also hosting a fundraising event on Saturday August 27 from 5:00 – 9:00PM. The event will be held at The Firefighter’s Union Hall at 6005 Grover St. Come out to support Don, visit with friends & family, enjoy food & drinks, music, a silent auction and raffles – it’s sure to be a great night! (Tickets available at the door)
*Don is also a US Navy veteran, a husband to one, father to two, "papa" to three, beloved family member & one heck of a friend.