Help Matt, Shelley & Max Navigate Cancer

Dear fellow Matt & Shelley supporters,

We’re reaching out with an update about the extremely challenging next steps on Matt and Shelley’s cancer journey.

First, a few nuggets of good news: We’re so happy to share that Matt’s cancer is officially in remission at this moment in time. This milestone is filled with relief and gratitude for everyone who’s played a part in creating the circumstances for Matt & Shelley to upend their lives so Matt can receive the best possible care at Mayo Clinic. We’re also happy to share that Matt has found a bone marrow donor and has begun the planning phase for the second half of treatment.

With this celebratory news comes the acknowledgment that this is also the toughest part of Matt's journey. Given that there isn’t a known cure for this rare & aggressive form of CTCL, remission is just the first step for Matt, and the remainder of Matt & Shelley’s 2024 and early 2025 will indeed be consumed by the more precarious stages of Matt’s treatment plan.

To fund this next stage of travel, medical care at Mayo Clinic, and quarantined lodging in Rochester, we hope to spread this ask far & wide and raise an additional $15,000.

Like before, we’ve been given permission to share details on next steps: Matt will undergo 8–10 rounds of radiation therapy August 9–19 followed by the evaluation and education phase of his bone marrow transplant. Matt will then likely be admitted to Mayo for in-patient chemotherapy — 4 high-dose rounds followed by another round of radiation in preparation for his transplant on August 21.

The logistics of what’s next are pretty daunting. Matt must relocate to Rochester for ~100 days, much of which he’ll need to stay in special housing. To prepare for the transplant, he’ll receive a massive dose of chemo to eradicate his bone marrow followed by a round of radiation, wiping out his immune system completely (as in he’ll need to get all his vaccines again!). This will be as painful as it sounds, and Mayo has clearly communicated the reality of the side effects he’ll experience (put simply, working will not be an option much of this time).

Because Matt will be so vulnerable to infection the first 100 days following the procedure, he’ll be fully quarantined — even from his animals — with the exception of his weekday visits to Mayo to monitor his blood counts and other vitals. He'll spend an undetermined amount of time in a safe medical-focused rental — this could be 30-60 days depending on how the transplant takes. The first 30 days post transplant are key: this is usually when the healthy transplanted cells start dividing and creating new bone marrow. Transplant patients like Matt are also vulnerable to graft-versus-host disease (GVHD) where the body rejects the transplanted cells.

Because of these and other factors like debilitating fatigue, Matt will need a caretaker. Our hope is that Shelley will have the means to quarantine and relocate with Matt to Rochester as his advocate and caretaker for the first shift of this extra challenging 100 days. She’ll then hand the torch to Matt’s mom, Kathy, who lives in Michigan — followed by some other folks whose circumstances allow them to quarantine and temporarily relocate to Rochester so Matt has the recommended care and support during this high-risk period.

After this ~100-day time period, Matt will finally get to come home to his own bed and begin the uphill battle of regaining his physical strength and building back some immunity.

Matt is long ago out of PTO and will need to go on a medical leave soon, during which he’ll receive just a portion of his earnings as an insurance benefit and be responsible for costly insurance premiums plus the cost of temporary housing in Rochester, which is around $2800 a month. We continue to pursue grants and are working with our social worker to secure any possible financial assistance — thanks for sending any leads our way!

We are deeply grateful for every form of support you have all given Matt & Shelley. We hope hearing the word remission did for you what it did for us — and that you recognize you’ve played a role in getting them here. We’re about halfway there. Thank you all sincerely for being part of this.

Original details

Matt and Shelley’s 2024 has arrived with big, unexpected changes. We're setting up a support base to get them immediate financial help as they plunge into an exhausting and expensive journey.

On Friday, February 2, 2024, Matt was diagnosed with a rare type of cancer called Cutaneous T-Cell Lymphoma (CTCL) by the Frauenshuh Cancer Center at Methodist Hospital. He and Shelley were quickly referred to the Mayo Clinic to connect with a larger team for what was suspected to be a very rare and aggressive subtype of CTCL. Matt underwent additional diagnostic tests and biopsies, including a painful bone marrow biopsy, to confirm pathology.

As of Wednesday, March 13, we've learned that Matt does indeed have the aggressive form, Primary Cutaneous CD8 Positive Aggressive Epidermotropic Cytotoxic T-cell Lymphoma (CD8+ PCAETL), as confirmed by Mayo Clinic hematologists and pathologists. Matt's biopsies also show Mycosis Fungoides (MF) cells, so an additional diagnosis is still up in the air right now.

This is not the news we hoped for, but Mayo was ready with a treatment plan. Matt's diagnosis is very rare and the treatments are difficult, so it required many doctors, dermatologists, pathologists, and hematologists to confirm. This is scary of course, but we're happy to share that Matt's cancer was caught very early.

Both Matt and Shelley, along with other family & loved ones, will be spending a lot of time in Rochester, MN at Mayo Clinic. They're headed there this week for Matt to begin a chemotherapy regimen called CHOEP. The goal is to tackle his more aggressive cancer with stem cell therapy and chemo onsite at Mayo to prevent or slow metastasis.

We’ve been given permission to be frank about the reality of Matt & Shelley’s circumstances: this is a very big and a very uncertain ordeal.

And it arrives on the tail of a long series of very big and uncertain ordeals. The financial strain of the covid pandemic was devastating to self-employed small business owners like Shelley who were unable to work for months on end. Matt’s employment was also impacted, and his job search lasted more than a year before landing his current position in 2023. Both have been working tirelessly to get back on track.

Shelley, who is herself a cancer survivor, is no stranger to the role of caretaker — having spent more than a decade caring for her mother through her rare heart and lung illness and palliative stages. Matt is in very good hands — but here’s the deal: Shelley also has complex, painful, degenerative conditions that make her current pace of work untenable. Realistically, it’s been untenable since 2019, and the consequences to her health have become unsustainable. She’s exploring options to take a leave from her career as she travels to Rochester to serve as Matt’s advocate during a precarious and medically vulnerable time. Unfortunately, there are extremely limited options for paid leave as she’s self-employed.

We’re worried this additional nugget will call into question our credibility, but you simply can’t even make this stuff up: Immediately on the heels of Matt’s initial cancer diagnosis came the news that Max, Matt’s beloved dog of 10 years, also has cancer. Otherwise healthy, he needs surgery in the near future.

Matt has medical coverage through work, but his out-of-pocket expenses are high (he may also be responsible for the cost of his premium while on medical leave). He'll be taking an intermittent leave of absence from work for his treatments and recovery. There's some support in place through short term disability, but this will only cover 50% of Matt’s salary. Matt and Shelley are exploring every possible benefit to get help covering medical expenses, travel and lodging.

Those who are boots on the ground when it comes to mutual aid are renowned for their stubbornness when it comes to accepting help in return. These two are no exception, but I have explained the rules to both Shelley and Matt: you accept help when you’re the one who needs it.

So we hope to raise $25,000 as a start — to ensure their housing is secure, to cover deductibles/copays that began piling up in October 2023, and to help with travel costs that began in February.

And the simple truth is we may need to raise more funds in the future. We just don’t know what happens next.

Matt’s spirit has been unbreakable. This is a painful condition and his discomfort has only worsened since he began seeking treatment last October. But even in his most miserable moments (Do. Not. Look up bone marrow biopsy needles), he has been the superstar darling boy of the cancer center. Other than the extremely rare and aggressive cancer thing, Matt is in perfect health, and time is on our side.

Thank you from the bottom of our hearts to everyone who’s already offered support to this very special family. Our sincere hope is that only those who can do so comfortably will donate funds — but that this will be shared far and wide. Thank you for sending it along.

Follow Matt's medical journey on CaringBridge