Support Adam's Fight Against Cancer

Hi everyone! This is Adam's older brother, Jake.

As you probably heard, Adam was recently diagnosed with Stage IV Neuroendocrine Tumors. I’m here on Adam’s behalf to ask for your financial support as he receives treatment and works towards recovery.

2024 had been shaping up to be a momentous year for Adam, Beth, and the family. Their oldest was finishing grade school and beginning high school. Adam started his own business to expand his live musical performances and public speaking. But everything changed when Adam received his diagnosis this Spring.

Cancer is obviously Not Great for many reasons, not the least of which is the fact that cancer treatment is, shall we say, really expensive. Adam and his family are facing thousands of dollars of unplanned medical expenses while also trying to cover normal costs they've budgeted for, like their mortgage, bills, and tuition payments for their five kids.

To make matters worse, both Adam and Beth are facing significant losses in income as a result of Adam's diagnosis. Adam’s hospitalizations, along with the uncertainty surrounding his treatment plan, have made it impossible for him to book any speaking or musical events until next year, at the earliest. Meanwhile, while Beth has been able to use intermittent family leave to be there for Adam and keep the rest of the family on track, she’ll reach a point where that leave is exhausted. When that happens and she’s used up her PTO, any time Beth takes for Adam’s care will be unpaid.

Long story short: when Adam and Beth put together their budget for the year, the effects of cancer treatment were not line items.

Unexpected medical debt for things like cancer treatment is the leading cause of bankruptcy in the United States, and working-age cancer patients like Adam are especially at risk for financial hardship because of the effect cancer treatment has on patients' finances and ability to work (see the bit about Beth's leave and Adam's engagements above). Even patients who are able to avoid bankruptcy still face significantly higher rates of anxiety and financial stress.

We're here because we don't want Adam and his family to experience this. We don't want Adam or Beth to have to choose between things like paying medical bills, foregoing or deferring treatment, paying tuition for their five kids, or choosing what bills to pay. We want him to focus on getting better. And the good news is that his prognosis says he can get better! To do that, we're asking for money. Specifically, we're asking for your money. Would you like more details? We have them below!

What kind of cancer does Adam have?

Adam has Stage IV Neuroendocrine Tumors. They’re sometimes called NETs and used to be called carcinoid tumors. His primary malignant tumor was located at the terminal ileum (where the small intestine meets the colon). Doctors also found metastatic tumors in his liver and lymph nodes.

NETs are rare, poorly understood, and challenging to diagnose. Patients often show up with symptoms that are consistent with less serious conditions, and NETs are hard to detect with imaging. Usually, NETs go undetected until they cause painful complications, by which point, they’ve spread to other parts of the body. This is what happened with Adam. He went to the hospital when something didn’t feel right, and the initial tests suggested he had pancreatitis. It was only when his symptoms didn’t improve that cancer was suspected and his liver was biopsied. That biopsy confirmed his diagnosis.

Adam’s cancer is Stage IV because it has spread to another organ, the liver, from where it started in the ileum. Though NETs don’t begin in the liver, the liver is such a good environment for tumor growth that it’s one of the most frequent sites of metastasis.

What's the treatment plan?

Adam has already had surgery called a bowel resection to remove his primary tumor. Doctors removed ten centimeters of his small intestine (the ileum) and the first third of his colon, as well as the cancerous lymph nodes around his ileum. Adam likes to joke that it was a BOGO surgery because the surgeon also removed his appendix during the procedure. (The appendix attaches where the ileum meets the colon, so it had nowhere to attach to.) His small intestine was then reattached to his colon. The initial recovery for this surgery was about three weeks, but some of the effects will be with him for life.

Adam will also need liver surgery to remove the metastases on his liver. This will be a much more invasive and unpleasant experience. Our mom, a retired nurse, has said this is "probably the most painful abdominal incision you can get." Adam has found some levity in this situation, calling it another BOGO because they’ll also remove his gallbladder.

All of this is complicated by the fact that there are more tumors in Adam’s liver than are showing up on his scans. MRIs and PET scans have shown at least five cancerous lesions on his liver, but his liver surgeon has made it clear that in cases like Adam’s, this many lesions being visible on the scans means there are more that haven’t been detected. She said she expects to find at least ten during the surgery itself. To help the surgeons find these lesions, Adam is starting a six round course of infusion therapy that will hopefully make some or all of the lesions visible on scans before surgery. During surgery, doctors will ablate, or burn away, as many lesions as possible and try to cut out the rest. His surgeon anticipates Adam will lose between 15 and 20% of his liver in the process.

What is Adam's prognosis?

Adam's ultimate prognosis depends on how this next surgery goes, but the doctors on Adam's oncology team are optimistic. There are basically three possibilities.

Doctors can remove all of the cancer (most desired outcome)

If doctors can remove all of the metastases from Adam's liver, he will likely need nothing more than possible infusions and regular scans to check for cancer recurrence, but will otherwise be fully cleared to live a normal life.

Doctors can remove some, but not all, of the cancer (less desired outcome)

The good news about NETs (if there is such a thing) is that they grow very slowly. NETs are graded according to how fast they grow, and Adam's primary tumor was Grade 1, the slowest-growing grade.

So, if doctors can remove some, but not all, of the lesions in Adam's liver, he would receive regular imaging and monthly infusions for the rest of his life. The infusions would hopefully prevent the remaining cancer from growing or spreading. Adam's ultimate prognosis would depend on how he responds to that treatment, but it's effective in preventing tumor growth in something like two-thirds of cases for at least a year and a half. Given how new this infusion protocol is, these are very encouraging results.

Doctors can't operate on the liver (least desired outcome)

Because the cancerous lesions on Adam's liver aren't all showing up on the scans, it's possible that there are enough "invisible" tumors that the doctors will open Adam up for surgery, discover there are simply too many to operate, remove one for grading purposes, and leave the rest. In this case, removing the cancerous lesions would mean compromising his liver function so much that it would basically be nonfunctional. As you’re probably aware, livers perform a number of critical functions related to not dying, so a nonfunctional liver is a no go. As far as prognoses go, this would be in "cross that bridge when we come to it" territory, but obviously not great.

How much money does Adam need?

The short answer is that we don't know. Every cancer journey is different, and Adam and Beth's financial situation will depend on what treatment he needs, when he needs it, and how much work Adam and Beth will be forced to miss.

We picked $10,000 as an initial goal based on the idea that Adam's care will occur this calendar year. His out of pocket costs are capped by the calendar year. If he needs extended infusion therapy or if his liver surgery is postponed into 2025 for some reason, his medical expenses will increase significantly. The same is true if there are complications that require Adam and/or Beth to miss significant chunks of work in addition to what they're anticipating for Adam's second surgery. Obviously, we'd like to be able to give an exact dollar figure, but the best we can do at this point is our best estimate.

What will the money be used for?

Any money raised through this GoFundMe will be used to cover Adam's medical expenses, including lost income from Adam's treatment and recovery.

If we raise more money than Adam ultimately needs, any excess funds will be used to set up a fund at the kids' school for future parents who face devastating medical diagnoses. Since Catholic grade schools just don't have the same financial resources as other private schools, they're often not in a position to provide financial relief when families have to contend with sudden emergency medical expenses. A fund would help ease the burden on future families who face the same challenges Adam and Beth are facing right now.

How much should I give?

Any amount helps! But a good way to think about donations from a purely analytical perspective would be to ask how many people would need to donate at a particular level to meet our goal. We'd be successful if:

As you can see, every donation makes a difference, but how fast we reach our goal depends on the generosity of donors like you. In fact, what I would really love to do is increase our goal because people are being so generous. After all, Adam and Beth are facing a lot of financial uncertainty during treatment, and the more we can do to address that uncertainty, the easier it will be for Adam to focus on recovery.

An added bonus, if you've read this far:

You might know that GoFundMe takes 2.9% of all donations as a processing fee. So if you gave $100, Adam would ultimately receive $97.10.

But!

I think this is kind of a raw deal. So here's what I'll do. For everything up to our initial $10,000 goal, I'll cover the processing fee. This means I'll donate 2.9% of whatever we collectively raise so that everyone who donates can be confident their full donation will help cover Adam's expenses. In other words, if we can raise the full $10,000, I'll donate $290 to offset the fees.

After all, if there's anything I hate as much as cancer, it's late-stage capitalism.