Support Alex Jarvis' Family in Their Time of Need

Friends and Family,

This is something I never thought I would have to do, but I am here setting up this Go Fund Me because I desperately need help to set my family up for success in my absence. There is a lot I want to say, so I apologize in advance that this will be lengthy. But I would never ask what I am asking without giving the whole story. A story I haven’t been willing to fully share in black and white online to the world.

Everyone knows that I was first diagnosed with stage 4 metastatic melanoma in the fall of 2017. I had an over 6 hour surgery to remove about 30 compromised lymph nodes in my neck. I received immunotherapy infusions every 2-4 weeks for a full year before being declared cancer free. Being cancer free wasn’t without challenges - complete fertility loss, cancer related fatigue, chemo brain all made me a very different person than I was before cancer. But I was cancer free. Until the summer of 2023.

For about nine months, my oncologist had been watching millimeter size spots show up on my scans that were all too small to biopsy. Finally, we were able to biopsy and confirm what we had suspected - cancer has returned to my chest/lungs. I started an aggressive 12 week double drug immunotherapy regimen and then dropped to a single drug immunotherapy. Quickly, we realized this was way tougher on me than the first time. Fast forward 3 months in - I go for scans expecting to see some improvement. Instead, I had 10 brain tumors.

While immunotherapy would still be needed to treat cancer throughout my body, I needed brain radiation. So the week of Thanksgiving 2023, I had three days of brain radiation. Jill and I were hopeful this would put me back on track and tried to focus on our family. Did I mention Hayley was only 6 weeks old at this point? She had a blow out in the lobby of my last radiation session.

December was a blur - 2 ER visits due to medication issues, lots of headaches from brain radiation and swelling, but slowly recovering. However, during a clinical visit with my oncologist at Ohio State she sent me to the Emergency Department to get a brain MRI for my headaches. That led to a 5 day hospital stay that changed everything.

While in the hospital, I was monitored around the clock with brain MRIs and CTs checking for brain bleeding and swelling. At some point it was recommended I do an initial spine MRI. And then another. Then one morning a doctor said to me words I could barely pronounce, but now is part of my daily vocabulary- he said “We suspect you have leptomeningeal disease”. Leptomeningeal disease or LMD is when cancer gets into your brain and spinal fluid. It is terminal. If you google it - survival rates show weeks to months. Spine MRIs and a spinal tap confirmed LMD. The clock was ticking.

The only thing that gave us hope was I was passing neurological exams like crazy. Everyone was impressed. My main oncologist explained that people don’t happen to see LMD on a scan like we did - people get diagnosed after strokes or seizures. So she was hopeful that this may not be the real deal. Still, starting in January 2024 I was told it wasn’t safe to drive and that every day without a stroke-like symptom or a seizure, was a win.

In March we did more scans and the spots in my spinal fluid had grown and there were more. I definitely had LMD. But it wasn’t too far advanced. I opted to do an aggressive whole brain and spine radiation for 11 days. (While still doing immunotherapy infusions monthly - that never stopped). My radiation oncologist said they hoped the radiation would stop progression for 6 months up to a couple of years. Whole brain and spine radiation has been the most taxing thing on my body thus far. Afterwards, my headaches, nausea and drowsiness were ever present. And due to permanent spine nerve damage I have back pain that can’t be relieved, my legs started to have muscle spasms. Those are just the biggest issues, but everything was affected from short term memory, taste buds to how I pee.

The further we got out from my whole brain and spine radiation, the better I started to feel. As good as you can feel while walking with a cane with crazy lower back pain and painful foot spasms. But I did get to enjoy the summer with my family and my summer scans showed some minor improvements and some minor set backs - hard to tell that close to treatment what was actually working. In August though everything started to get worse. My legs swelled so bad the skin would break open and “weep”. My feet felt heavy and back pain was worse - at one point I went for a spine x-ray “hoping my spine was just fractured” and that could explain the pain. But no it wasn’t fractured. No med changes helped anything. I started having double vision in my left eye and my oncologists moved up my next MRIs.

The day after my MRIs I suddenly couldn’t use my left foot. I couldn’t lift my left leg. And my left eye would barely stay open. Clearly all major neurological issues. I went to The James at OSU as usual and stayed a week. I don’t really remember the first two days as I was in and out of consciousness. Jill tells me she really thought I was going to die because of just how much I was sleeping. There it was decided my treatments would have to change and I needed more spine radiation. I was discharged while still barely able to walk and see. I started using a walker and wheelchair and an eye patch.

I had spine radiation and met with my trusted melanoma oncologist I first met 7 years ago. Things hit differently when your world renowned oncologist cries with you and your wife. When your oncologist tells you that now the clock is ticking. We decided to switch me to a targeted therapy - chemotherapy pills a total of 12 I take daily. She said there’s a 70% chance this will help with cancer throughout my body, but only a 50% chance it will help in my brain. If it doesn’t work, she said I will likely have weeks to months left. If it does work, she said we won’t know for a while and even then it may work for 6 months, a year.. If I am one of the lucky few maybe 3? As we all cried, she talked to me about writing to my daughters before my mind goes. And to make sure I have all of my affairs in order for my family.

Jill and I left that appointment and sat outside. I told her I needed a goal.. I said I wanted to make it to January. I wanted to make it to Delilah’s 5th birthday on January 1st. In the two months since we had that talk, I’ve had some major improvements. I am still using a walker or cane, but I’ve regained a lot of strength in my leg. My leg swelling has finally been relieved which has been a major factor. I feel very confident about making my goal and beyond. From the outside, I am improving, but time will tell what my scans show.. And for how long.

All of what I wrote above leads me to say this - I know my time is limited. I have a terminal disease. Whether that is 6 months or 18 months. I will not get to see my children grow up. I will not get to enjoy what the next few decades had in store. The past year has drained us financially. We only had about a year after paying off my first cancer diagnosis/ surgery/ treatment before I was re-diagnosed. I tried my best to work throughout all of this and my work was incredibly accommodating, but I haven’t worked since September 19th. I am no longer receiving paychecks. And even though I filled out my application for disability / early retirement through the State Teacher Retirement System and my doctors have filled out everything they needed months ago (confirmed by the organization again last week), my application is sitting on a virtual pile of other applications waiting to be reviewed. No one can give me a time frame or what my official financial “offer” will be. Probably somewhere between 40-60% of my monthly wages.

My reality is I have no idea how long I will be around and I need your help. But more importantly, my family needs your help. There will come a day (most likely uncomfortably soon) that I won’t be here anymore. And Jill, Delilah and Hayley won’t have me to rely on. This is not how I had expected things would play out for our futures.. But this is my reality. I am giving my family 100% of my love, attention, devotion for as long as I can. But I can’t assist financially. I am scared for what the future holds without me… I know there is little I can do, but I can ask for help. If you are able, please help me set them up for some success. This has been extremely damaging to all involved and I need one aspect of life to be a little easier.

To my wife Jillian, I’m sorry you have to go through this. I’m sorry you will have to experience life’s hardships without me. If love was enough, I’d never have anything to worry about.

To Delilah and Hayley, you’re all I’ve ever wanted. The biggest disappointment of my life is that I won’t be able to watch you two grow up.

And to everyone who read this all and is willing to help and share, thank you.

Alex Jarvis