I was made paraplegic by cancer in 2014. Now, I am cancer free, and have (mostly) overcome my paralysis! AMA about my ongoing recovery!
EDIT: 3:33am - hey, I'm going to sleep, I'll be back in a few hours though, and I will answer all questions I missed while sleeping. Like I said, as long as you guys are asking, I'll keep telling. :)
EDIT 2: 2/22, 6:21pm - holy DAMN guys, I had no clue this would blow up this big. I have answered most of the questions, with a few exceptions, like duplicate questions or non-questions, and I still have a handful of PMs to answer. Thanks so much for participating, everybody, I will still respond once in a while if anyone has any other questions, feel free to PM me and I'll do my best. I'd like to thank my doctors at Hopkins and therapists at KKI, without them I am NOTHING.
Hi folks, my name is Patrick Kavanagh. Recently, as I reflect upon everything I have been through these last couple of years, I realized that I have defied what I previously considered possible several times. Because of this (and coupled with crippling depression and loneliness) I wanted to do an AMA to talk about how I've conquered the impossible throughout my treatment. I'll start from the start, with my story:
Mid 2013, I'm 21 years old, and life is... Eh. I'm overweight, in a little bit of debt, trying to make a career for myself on a HS education and progress is slow. Some time in spring/summer, I got a weird sensation in my face one day. A strange tingly numbness in my lower lip/chin, on the left side. It was odd, but I thought maybe I had slept on it or done something stupid in my sleep, maybe some kind of inflamed nerve thingy, I didn't know, but I wasn't too worried.
It got worse. It began to flare up once or twice a week. Out of nowhere, the numb spot would flare up in excruciating pain, the worst I'd felt, all concentrated into a very small area in my face. It would last hours, or even all day. Doctors were stumped. Dentist was stumped. X rays were taken, exams were done, and nobody knew why this was happening until somebody suggested possible Trigeminal Neuralgia, which fit my symptoms perfectly. In the meantime, my back starts hurting. I didn't draw the connection between the two issues at first. Of course, though, both got progressively worse.
By late fall, I had to leave work. I could no longer leave home or drive most days, the pain was excruciating in my back. It literally brought me to my knees. Some days all I could do was SCREAM and cry in pain. I was trying anti-inflammatories, heat and ice alternating, TENS, massage, anything I could think of. Many days I would spend HOURS in the shower curled up on the floor with the hot water pointed straight at my back, with the shower's heat on full. It was the only thing that brought relief. Docs didn't want to prescribe pain meds since they couldn't identify the cause, but I had some I could borrow from my mom when it got bad.
New years eve, 2013, was a good night. I celebrated at home with family and my back/face weren't flaring up badly that day. I could actually walk. It was nice. The next morning, however, I woke up like I did most mornings, in terrible crippling pain. So I got up, dragged myself to the bathroom just across the hall from my bedroom, and hopped in the shower as per routine. I spent a few hours in there trying to let the heat do its thing but of course it did not help. I noticed a feeling of weakness walking between the two rooms, but thought nothing of it. Back in my bed, I fell asleep for a couple hours, and when I woke up, I was PARALYZED from middle-down. No feeling, no movement, no nothing. Done.
I called my dad, who sped home, my mom and sister showed up, and we got me in an ambulance. Long story short, the hospital they took me to didn't have the tools on hand to help me, so I was helicoptered to the nearby Johns Hopkins Hospital here in Baltimore. That was the best thing that could have happened.
They did CT and MRI scans of my whole body, and determined the cause of my anguish: a tumor had been compressing my spine, causing the pain and eventually compressing enough to permanently injure and paralyze me. They immediately brought me for emergency surgery to remove the growth. When I woke up and it was done, I received the news: My spine was not the only place with the cancer. It turned out, I had a softball sized tumor in my pelvis which started it all, and it spread from there, to my lungs, liver, spine, and skull. It was a deadly, aggressive cancer called Ewing's Sarcoma and there was a lot of it.
I began going through chemo. I would have a chemo treatment every other week. It would alternate between a 2-day infusion and a 5-day one. Yeah. Chemo for 5 days straight. Not fun. In the meantime, though, I'm told there is hope for my mobility because of how quickly the mass was removed after paralyzing me. At that point I could slightly wiggle my toes and feet but still couldn't feel them at all.
They sent me to a facility called Kennedy Krieger Institute, a pediatric physical rehab center. I was inpatient there, and would go between there and the hospital via a tunnel which connects them underground every other week for chemo, but aside from that, I spent my days in the spine gym at the rehab place trying to learn to stand up again, trying to learn to walk, or just do anything. It took months before I was even standing on my own, and I still needed a walker to even take any steps. I could sort of move but I still could not even feel the ground below me.
Fast forward, and I'm sent home after not being home at all for the first 4 months of the year. I could walk with a walker, but that was about it and I would still be back for chemo and radiation weekly. During this time, I continued to get better, until I could walk with a cane, and eventually even without one! Still couldn't really run, jump, or balance well, but I could finally get around! Throughout my physical therapy journey, I had slowly regained what I'd lost, and I could move and feel again, maybe 80% normally. It felt pretty damn great. I also finished my 36 radiation treatments and my 22 chemo treatments over the course of being home in 2014. Until...
Finally! In the fall of 2014, I was declared cancer free! In remission, anyway. Which meant my next step would be Bone Marrow Transplant, which, long story short, is a measure which hopes to eliminate my chances of relapse. The idea is that since my own immune system was not able to see the cancer as a threat, we would intentionally destroy my immune system, and "replace" it with a 50% matched donor. A parent is usually used for this. They need to be a 50% match specifically so that it is similar enough for my body to not reject it, but different enough that it will hopefully attack the cancer should it appear again, unlike my previous marrow.
That process began on December 6th for me, and I have been here at Hopkins since. Technically I'm at temporary housing in an apartment near the hospital, and I have appointments several times a week. I'm now past day 60 (out of an estimated 100+) of post-transplant, and I will get to go home again in another month or two.
So, Tl;Dr, since 2013 I have...
-Got out of my chair and walked anyway
-Diagnosed with cancer
-Changed blood types from AB to A (result of marrow transplant)
Here is a link to my proof as well as some pictures of me throughout the process: http://imgur.com/a/c0STg
I realize it is midnight EST right now, but I will continue answering questions so long as they keep rolling in.