006 - It Has Been Far Too Long

Please, Let Me Explain

Where Have You Been?

Hello friends. Due to a number of unfortunate circumstances, I have been unable to provide a detailed updates until now. My last update was in May of 2021, where I shared that Kaiser Permanente had denied the stem cell transplant for my highly-active RRMS. Let’s dive into what has been going on.

Roughly a month after my last update (June 28th), I suffered a seizure at home while Whitney was at work and Sloan was taking a nap. I remember getting in the shower but then I have no memory of anything after that for roughly twenty-five minutes. All I can remember is getting in the shower, and then waking up showered, dry, and fully clothed lying on the floor roughly fifteen feet from the bathroom.

In addition to this seizure, I started struggling with cognitive and autonomic issues. I had a hard time formulating sentences and I would randomly start profusely sweating, experience nausea, possibly vomit, become dizzy, and sometimes fall. Thankfully, with my previous MS relapses, I have not needed to take time off of work. This was different. My neurologist didn’t know what was going on, I was clearly unable to perform in my (now former) role, so I went onto FMLA and WAPFML protected short-term disability. I spent the next six weeks getting an EEG (negative for epilepsy), tilt table test (negative for POTS), sleep study (negative for sleep apnea), MS MRI suite (no new lesions), and various other tests via bloodwork — everything came back normal.

In August, I was returning to my baseline. This is just a thing that constantly happens with MS — you have ebbs and flows with your symptoms. I met with my neurologist and after her exam, she thought that I was doing much better symptomatically and cognitively. Then, I was laid off in September and I am unfortunately still unemployed. One step forward. Two steps back.

While I started to step away from social media during my medical leave mainly due to mental capacity, I was advised by folks who I trust to stay away from social media for a while. In my time away, I have learned that I am in a far better place mentally when the amount of time that I spend interacting with social media is limited. To all of my amazing friends, if I have not been good about getting back to you, or you wonder why I have dropped off the face of the earth — I am sorry. Just know that I am trying to share everything possible, and this is why I have not been as open in providing regular updates. I am doing way better, and I am starting to get back onto (the dreaded) Facebook, Twitter, and Instagram.

Monheim Party of Four

One of the biggest challenges of my MS is how it has impacted our family planning. Thankfully, we spoke to our doctors and got referred to a fertility clinic in Spokane. It took a while, but Whitney became pregnant this past Spring and Cohen Michael Monheim was born at 37 weeks this past October 4th.

Photo: Shay Carey Photography

Cohen has had an eventful first eight-weeks of life. Our five year old, Sloan, has brought home both Covid and RSV from preschool, with the latter resulting in a three-day stay at the hospital. He is so tough, so funny, and is thankfully off of oxygen now.

Cohen in the hospital with the smallest (and cutest) nasal cannula ever

What’s Happening With The Transplant & MS?

There is good news and bad news. First, the bad news is that I had another relapse this past spring, resulting in a new lesion at C2 on my spinal cord. I feel like I am getting to a point where it is hard to tell if I am experiencing new symptoms and having a relapse. At baseline (when I am feeling my best), I am numb and tingling from my belly button down, hands and forearms are numb, the right side of my face has decreased sensitivity, and I have double-vision from the lesion on my optic nerve. Now for the good news — this relapse and new lesion was a blessing in disguise. I now had symptomatic, or clinical disease progression, along with disease activity on an MRI — meaning that I had failed a highly-effective MS treatment for the second time. Where is the good news? This new lesion makes me an exceptional candidate for the transplant because I am young, otherwise healthy, and don’t have many other options for pharmacological treatments.

Do I feel like shit? Yes. Is it good that I now have 18 lesions on my spinal cord? No. Am I excited that this new lesion isn’t debilitating and it puts my insurance company in a position where I don’t really have other options? Absolutely.

Now What

Well, it is finally happening. I will fly to Denver for pre-transplant testing in two weeks and then I will come home for a few weeks. Once the test results are approved by my transplant doctor, final approval will be sent to my insurance company, then my Dad (my 24-hour caregiver) and I will move to Denver to start my transplant on February 13th.

Here is where I need the help of my community, friends, and family: the entire transplant will cost me between $35k and $50k out-of-pocket. This includes everything — medical bills, furnished two-bedroom house/apartment, transportation, food, and rehab/physical therapy. I have created a GoFundMe, where I am trying to raise $35,000 to help with the out-of-pocket costs — any remaining funds will be donated to the National MS Society and the Colorado Blood Cancer Institute.

One of my heroes, actress Selma Blair (Cruel Intentions, Legally Blonde) was diagnosed with aggressive Multiple Sclerosis in 2018, received a stem cell transplant in late 2019, and was just on Dancing With The Stars until she had to drop out due to injury. Above is the trailer to the documentary about her treatment.

Going Forward

You can expect weekly updates here where I will go into what the treatment calendar looks like, the experience of going through pre-transplant testing, and then the transplant! During the last appointment with my doctor, he made it clear that I needed to understand the risks of transplant — 1.5% chance of mortality during transplant, MS could relapse, and increasing my lifetime cancer risk by 2x or 3x. I am terrified to put it mildly. I never thought that I would be required to have a will or power of attorney as a thirty-six year old. I wholeheartedly believe that this is the best chance that I have to be a (somewhat) normal father and husband. Even if my MS relapses at some point, there will have been x amount of time without disease activity, symptom progression, and neurological damage. That my friends, is a win.

Until next week,

Aaron