Help Tim Fund Vital Brain Cancer Treatment

I want you to meet my husband Tim – amazing father of our three boys – Caleb (5), Nathan (3), and Matthew (1) – and the man I was lucky enough to marry seven years ago. On February 8, 2021, weeks after our son Matthew was born, Tim was diagnosed with a brain tumor which we would later find out to be cancerous. This is a very aggressive form of brain cancer (grade 4 astrocytoma) that has no known cure. This diagnosis was completely unexpected, devastating, and has significantly impacted our family life over the past year, to say the least.

As per the current standard of care, Tim immediately underwent surgery to remove the majority of the tumor, followed by six weeks of radiation and 12 cycles of chemotherapy. In addition, we have made dietary and lifestyle changes, and Tim is wearing a medical device on his head called Optune for 18 hours a day that uses electric fields to disrupt cancer cell division. Suffice it to say, we are fighting with hope and vigor for the best quality of life and for as much time together as possible.

The standard of care protocol mentioned above is proven to be effective treatment for brain cancer, but not forever, and is not a cure. Tim’s tumor is expected to mutate eventually and grow resistant to chemotherapy. Given the particularities of Tim’s tumor, a personalized peptide vaccine immunotherapy treatment is our next best step. The hope is that this vaccine will teach Tim’s body to identify and fight the cancer cells. Unfortunately, there are hurdles that come along with this decision. To maximize effectiveness, the vaccine must be customized to the individual’s genetics, and at this point, can only be manufactured and administered in Germany; furthermore, until the FDA approves this technology, it is only available privately at a very high cost to the patient (roughly $75,000, plus travel expenses). Our family is ready to fight this cancer with everything we have, especially to give our boys the chance to know and enjoy their dad well beyond his initial prognosis.

For those who wish to join us in the fight, our first request is that you would pray. We believe firmly that God has a purpose for Tim’s cancer, that He is able to heal Tim, and that He will provide for us no matter the outcome. Our second request is that you would share this GoFundMe far and wide. We would love your help in spreading the word! And our final request is that you give if you feel so led. We know you’ve all heard it before, but ANY amount helps! In addition, if giving frequent flier miles is something you’re able and willing to do this is also an amazing option in helping Tim get this treatment.

For those who want more details, please keep reading below so I can give you a better picture of all that we’ve come through and what lies ahead. Tim started some personal reflections of what happened when he was diagnosed a year ago. For those who are interested in reading, here is a link: https://livefortheline.me/. To God be the glory!

Thanks for all of your love and support.

Kate

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Diagnosis

Prior to his February 2021 diagnosis, Tim had experienced six months of relatively mild symptoms, including fatigue, blurred vision, and headaches. In the midst of raising two toddlers during a pandemic, working remotely, and supporting me (Kate) during my third trimester, it was easy to downplay or dismiss these symptoms. But in January 2021, Tim mentioned these symptoms to his primary care physician during a virtual appointment. His doctor wisely referred him to an eye doctor, whom Tim saw as soon as possible. When those results came back, the eye doctor called Tim over the weekend and suggested he go to Massachusetts Eye & Ear ER first thing on Monday morning. We dropped the kids at school, and I drove Tim to his appointment. With newborn Matthew in the backseat, I asked him to let me know when he was finished, naturally assuming that we would be back to pick him up later that day. We had no idea what was to come.

When Tim was released from Spaulding Rehabilitation Center, I picked him up there, and we immediately returned to Mass General to meet with the oncologist and receive the full pathology report. It was at that time we learned the diagnosis - Tim has an IDH mutant astrocytoma, grade 4 - a very aggressive form of brain cancer. The prognosis for patients with this diagnosis has improved over the last few years, but the doctors were clear in letting us know there is no cure at this time, and the prognosis varies from person to person.

Treatment

After recovering from surgery, Tim began what doctors call the ‘standard of care’ - which includes six weeks of radiation (Monday - Friday) in addition to daily chemotherapy. Upon completion of this initial treatment, he has continued with the suggested regimen of twelve 28-day cycles (5 days on, 23 days off) of chemotherapy, which he should complete in May. Additionally, Tim started using Optune – this is a medical device that he wears on his head 18 hours a day that generates electrical fields intended to disrupt further division of the cancer cells. This is an optional treatment which we’ve been thankful to be able to pursue. In the beginning we were quite concerned with the logistics and how the kids might handle the change, but Tim insisted he try anything that has the chance to better his prognosis.

At this juncture – having almost completed the standard of care - there is not much more doctors can coach you to do. There are a few things we are able to do at home – dietary modifications, taking supplements, and making lifestyle changes – that have given us a purposeful sense of agency. But still, every eight weeks, Tim returns to Mass General for a follow-up MRI; and a few days later we hear from the doctor whether or not the tumor is growing again. Our family is in a holding pattern, striving to embrace each day with Tim, but fearful of what will happen when the tumor no longer responds to these treatments and returns, most likely stronger and harder to treat.

Peptide Vaccine

Despite the darkness that haunts those with an ‘incurable disease,’ there are glimmers of hope to be found beyond the current prescribed care offered in the US. Extensive research is being conducted regarding brain cancer, generally speaking, and discoveries are being made worldwide each day. Furthermore, it is widely believed by doctors that the cancer is at its weakest right now, making this the best time to pursue various alternative treatments to outpace the tumor’s growth and resurgence.

We were encouraged by our team of doctors here to pursue a personalized peptide vaccine. The tumor found in Tim’s brain has a particular mutation – IDH – which not only extends his initial prognosis but also makes him a particularly good candidate for this type of vaccine. At risk of sounding simplistic, here is a very generalized explanation of how this technology works. Many of you by now are familiar with the Covid-19 vaccine, which teaches our immune system to identify and destroy Coronavirus cells; similarly, a personalized peptide vaccine would be manufactured using portions of Tim’s tumor (previously removed during surgery) and aim to teach Tim’s immune system to recognize the tumor cells and destroy them.

While not an approved treatment in the US yet, there is such significant support for this type of therapy in Europe that Germany has formed a nationwide program to deliver immunotherapy to those who suffer under this diagnosis. Using a combined treatment approach – radiation, chemotherapy, dietary and lifestyle changes, and an immunotherapy vaccine – is the strongest approach we can take to fighting Tim’s cancer.

We Need Your Help and Support

Pursuing this peptide vaccine creates a number of hurdles, yet we feel it is the best course of action to battle Tim’s cancer and hopefully give him more time with our family. The manufacturing process is expensive and complicated, and as previously mentioned, only currently available in Germany. For Tim in particular, this process would likely involve an initial two-week trip to Germany, with an estimated 10 additional injections every 4-6 weeks, in conjunction with immunotherapy infusions every 3 weeks here in the US. The baseline cost for the diagnostic testing, and the development and administration of the vaccine and immunotherapies is approximately $75,000. Tim’s estimated travel and lodging costs are $50,000.

We know we have to be realistic, but these treatments give us hope. We believe the science is there but unfortunately only available privately at this time. We are fighting for as much time with Tim as possible. We will do all we can to allow Tim to watch his children grow and to allow Caleb, Nathan, and Matthew to deeply know and experience their father’s love. And we are here, humbly, asking for your help!