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The Last 10 Months: a recap

Easter 2021 Dominic was 6 months and Dante just recently turned 2. We were excited to have just received our COVID vaccines in the weeks leading up and to finally get together with family in Ocean City for the holiday. Disclaimer: there is no known connection between the vaccine and brain tumors but I would be lying if I said the thought of that connection isn't extremely hard to shake. We had an Easter egg hunt on the beach and woke up to a trail of jelly beans from the Easter bunny. THIS is the last normal memory that I have but also (not knowing at the time) the first sign of what was to come. There was a moment in the bedroom that I handed our youngest son off to Mike and he fumbled him. Dominic fell onto the bed and I shot Mike a look like, “hello? Pay attention!”. We didn’t think much of it. This picture provokes so many different emotions for me – I feel sad that our life will never be the same and I feel a yearning for our life pre-diagnoses. I also feel joy knowing how much fun we had and to vaguely remember the lightness of life before this huge weight was put on us shortly after. Easter 2021 in Ocean City, NJ


Over the next few weeks, things progressed. Mike started losing more function in his left hand. He found his fingers sticking to the keys while typing and he was constantly dropping things. He eventually just couldn’t hold our kids safely. We went from thinking he hurt himself working out, to carpal tunnel, to Lyme's disease, to realizing there was clearly something more severe going on. We did what you *should absolutely not* do and that was visit doctor google. If you type in these symptoms, diseases like ALS are first on the list. Mike was scared. I was trying so hard to be positive but inside I was completely spiraling. Watching Mike experience these neurological symptoms (and just the mere thought of ALS) gave me PTSD from watching my mom deteriorate for years with a disease that closely mimicked ALS. My mom died in 2019 a few months after our first son was born. I thought – this can’t possibly be happening to us. Mike’s primary sent him to a neuro. Every neuro that he called said they couldn’t schedule him for months. Knowing what we know now, every day, week and month matter. He finally got in and though that first neuro visit was a terrible experience, it got the diagnostic process started. At that first visit, I encouraged Mike to share his fear of ALS so the doctor could hopefully put his mind at ease knowing the true unlikelihood of it. He did. He shared his fear as the doctor administered an EMG. The results were normal and she confirmed he does not have ALS. We took a breath. The doctor suggested Mike may have anxiety and didn’t show much concern after that. We think him asking about ALS to ease his concern actually backfired and caused her to brush Mike off as a hypochondriac. Mike knew this was something more. At our request, she handed us a referral for an MRI and said to come back in a month. Needless to say, she, along with the medical board, received a not-so-friendly- letter from me a few weeks later! The wait for an MRI was simply not doable as Mike was now experiencing what he called “brain fog”. At this point, he was extremely disconnected – zombie-like. We were able to connect with a family friend who works as a radiologist in New Jersey. He got us in to his center for an MRI that same day. We drove to Jersey, Mike had the MRI, and we got the results immediately. "This is not a normal MRI." Just thinking back to that moment and hearing those words, followed by lesions and emergency room makes me feel sick. The MRI showed two lesions and a ton of swelling in Mike's brain. We went straight to the ER. For the next week or so, the medical team believed this was a rare kind of demyelinating disease. We were holding out hope that this was an unusual, but resolvable reaction to the vaccine called ADEM. Anyway, after a hospital stay, high dose IV steroids, a spinal tap, more testing, a move to Jefferson and eventually a biopsy, I sat at my in-laws kitchen table and answered the call from Mike’s surgeon. I was eager for good news but the surgeon confirmed that these lesions were in fact, gliomas. A few days later, the genetic analysis came back and we learned that this was cancer. In this moment, we sunk. It felt impossible to be positive anymore. It was one punch in the gut after the next. The prognosis wasn't good, especially with the tumors being inoperable but we knew we were not going to let a doctor put a timeline on Mike’s life. We were going to do everything in our power to defeat the odds. I joined Facebook groups and communities for patients and caregivers. We read and read and read and READ. We went from feeling defeated to finding a new sense of hope. We’ve heard SO many stories of people not only living but thriving years and years after diagnosis. One of the common factors among those with success was a positive attitude. If anyone can fight the fight – it’s Mike. His dedication in every aspect of his life is unmatched – fitness, fatherhood, work. From that point, it was game on. Mike started working his butt off for hours each week at physical and occupational therapy. We went to talk therapy individually and together. We spoke with a child life specialist to help guide us in guiding our children through this. We got several opinions from top NO’s around the country, researched and met with a naturopathic doctor for complementary treatments. Mike’s first line of defense was radiation. Typical standard of care is radiation followed by a chemo called Temodar. We were puzzled because this was the treatment being recommended though we were told there was little chance of it being effective based on the pathology report. This is when we realized that we needed to educate ourselves and speak up if we wanted different results. Why the HECK are we going with a treatment that is already expected to be ineffective? “That’s standard of care” (SOC). Typically, you go through SOC and then experiment. However, it just didn’t’ make sense to us. We told the doctors that we wanted to go outside of the box and our NO supported that. In searching for clinical trials, our NO found an opportunity in Michigan. We spoke with the team there and our next step was to get a treatment regimen that was FDA approved for other conditions, approved through our insurance as it showed success in clinical trials for a brain tumor with Mike’s pathology. Insurance denied us. We appealed. They denied us again. Our consulting doctor in Michigan advocated for Mike and got him access to a newer, experimental treatment through the compassionate care program that he feels "has the potential to be a home run". This drug's job is to essentially block the genetic driver of Mike’s type of tumor. This is Mike’s current treatment and has been seemingly working wonders. He is almost 6 months into this treatment and his two INOPERABLE tumors were almost undetectable on his last scan!!!!! There are 6 brain tumor patients in the world on this treatment and Mike's case is being watched extremely closely by the drug manufacturer. Our medical team expressed how very rare this level of improvement is! The fight is not over but this is truly a miracle. MAY 2021:

POST BIOPSY:


Mike will continue to have a scan every 3 months for the rest of his life and I intend on writing to keep everyone in the loop of how he’s doing and how our family’s doing, and of course, to vent. For now, it’s time to freakin' celebrate!!

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