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.

In Short:

So, Tl;Dr, since 2013 I have...

-Become Paraplegic

-Got out of my chair and walked anyway

-Diagnosed with cancer

-Beat 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.

Comments: 345 • Responses: 46  • Date: 

hopkinsthrowaway191 karma


I'm writing this right now while bored on overnight shift at Hopkins! (throwaway for obvious reasons) I go through that tunnel to help my patients in Kennedy Krieger all the time! I love the mural down there. I work mostly with the younger pediatric patients though, so I surely haven't seen you. I'm so sorry to hear you're having such a rough time, but you're a total badass for keeping fighting through all these treatments, and you're in the best place in the world to help you. I bet you're getting pretty tired of Baltimore though!

Feel better soon. Never give up.

Oh wait, it's an AMA, I suppose I should have a question. Are you tired of seeing all this snow yet? Have you gotten to use the video games? Eating something better than jello, I hope?

Bring on the sunshine through the windows, all the better to take new first steps in!

Sick_Boy_Paddy74 karma

Ha. Well, having been diagnosed on Jan 1, 2014, and I didn't go home till April, I so I got to skip that winter, and being in for transplant has allowed me to skip a lot of this one as well. Still, though, the snow is kinda bothersome. Currently I'm in the Hackerman-Patz building, which are apartments attached to the Orleans garage. When I go to my appointments during the week I do have to go through the garage, though, and it is COLD. Shit, I'll wear two sweatshirts and a blanket and everything but I think somewhere between having no body hair and being 100 pounds offset all that. Insofar as games, I haven't actually played much, but I did come prepared, that's for sure. I have my PS3 and TV, a Vita, two PSPs and a gameboy. Also my netbook and USB n64 controllers for emulators. I also brought a few borrowed Xbox 360 games from friends to play on the 360 in the hospital rooms in Bloomberg. Like I said, though, I've hardly touched most of it. Back at KKI though I played a lot of Wii bowling in the spine gym. Lol.

And insofar as food, yeah, I'm doing okay now! December-january there were maybe 3-4 weeks straight where I ate NOTHING while in the hospital but I've been doing better since recovering at Hackerman. I'm eating tortilla chips and queso right now. :p I ate a lot of peanut butter and scandi shakes throughout my treatment. And cheeseburgers. So many cheeseburgers.

hopkinsthrowaway41 karma

So THAT'S what they added by the Orleans garage! Now I know! I'm glad to hear you're doing well and eating well. The dietitian in me says I hope you're still sneaking in some healing vegetables in between those delicious good-weight-gaining recovery cheeseburgers :)

Sick_Boy_Paddy47 karma

Heh. Of course! For me, when I have no appetite, it becomes "craving first, health later", which means if I have a craving, even a ridiculous one, focus on satisfying that, I have to capitalize on every opportunity I get where I can actually eat, and WANT to eat. But usually, when I'm feeling more normal, and have a regular appetite again, that's where actual nutrition gets swapped back into higher priority, since at that point I know I'm going to eat SOMETHING either way, so it may as well be something good.

clush7 karma

My girlfriend is an audiologist at Kennedy. Small world.

Sick_Boy_Paddy4 karma

Thank her for me! I LOVE KKI SO MUCH! You should be super proud of her for working in a place like Kennedy. Her work has indirectly and directly touched so many people's lives in a way more profound than you or her could possibly know. Her specialty may be audiology, and it's true that the therapy and treatments are the real reason I can walk now, but they call it a team for a reason, and a team cannot function without all its parts! I guess what I'm saying is that her role in that big picture is no small thing!!

Im_Dorothy_Harris79 karma

In order to protect other personal information about yourself, you REALLLLY might want to cover up your medical record # from your hospital paperwork featured in the album.

As someone who works in the field, depending on who the rep is who answers the phone, someone could access a lot of information about you with just your name, DOB, and MR#.

What's your favorite color? (Since I have to ask a question to avoid being deleted by the bots.)

Sick_Boy_Paddy4 karma

Blue, and fuck. I suppose it's a bit late for that... Oops. Thanks for the heads up.

jtopper77 karma

In the UK, all this treatment would be free on the NHS. How much is it costing you, and how are you paying for it?

theshadowhost25 karma

my understanding is that if you are under 25 then you can stay on your parents insurance so his parents insurance might have been able to cover it when he couldn't work.

countykerry17 karma

insurance here likely won't cover that treatment 100%, though.

Sick_Boy_Paddy3 karma

Not usually, but our insurance is really really good. :)

AlexWIWA70 karma

Please tell me how you overcame paralysis. My fingers are paralyzed and I hate life.

Edit: This subreddit is fucking ridiculous and deleted my comment for no question mark. Happy now, ama bot?

Sick_Boy_Paddy2 karma

Im sorry to hear about your fingers! For me, hardcore physical therapy and neuroplasticity was the key. How does one paralyze only their fingers? Sounds like one hell of a condition you've got there.

VivaBeavis40 karma

Hey man. Although my cancer diagnosis was different than yours, it sounds like we did a lot of the same things at hopkins. I was diagnosed with leukemia with the Philadelphia chromosome, and had a half match transplant in the clinical trial. I'm not from Maryland, so being able to stay at Hackerman was a big selling point to go there. Are you on the top floor in the apartments? I had to take one of the studios when I first went down since everything on the top floor was booked. It was such an upgrade to get the apartment with the little kitchen and washer and dryer. My only complaint was the little couch in the living room. I guess they picked it for some kind of modern design look, but for me, when I'm sick, I just want a big comfy couch to lay on and watch tv. If the couch is ugly, it seems to make it even more comfortable. I'm guessing you go to 5th floor IPOP every day for your blood work and treatments. Do you know Ms. Tammy that does your vitals? She was always so nice to me.

How are you feeling at this point in the recovery? It sounds like we took the same types of things..cellcept, prograf, antiviral,antifungal,antibiotics, etc. Are you experiencing any gvhd? My transplant did not go smoothly, so to this day, I still deal with gvhd. It took me tons of steroids to help get it under control, but that takes a toll on your body and joints. This Wednesday is actually the anniversary of the day I got my transplant, and I'm excited because this is the first time I don't have to get my hips drilled for the bone marrow biopsy. I'll bet they are a favorite of yours as well.

At any rate, feel better brother. I don't have to tell you that this isn't an easy process, but it sounds like you've already faced the worst of it. Wear your mask when you go outside, although I wasn't the best at doing that myself. If you need someone to talk to, I'll definitely be a friend to talk to than can relate to your journey. Feel free to reply here or pm me. If there has been one big positive I can pull from my experience with cancer, is that it brings out a real sense of humanity in people, from caregivers, family, friends, and especially other patients and their families. I hope that has been your experience, and I'd like to offer the same to you.

Sick_Boy_Paddy3 karma

I actually do my appointments in Bloomberg, on 11. Pediatric oncology clinic. :) its awesome to meet someone else who has been through treatment here, and even stayed at Hackerman! That's awesome. And congrats on your own recovery, I hope you're doing well these days!

SARK-ES111782117 karma

Congrats on your recovery! Hopkins specializes in half-match related-donor transplants and has an ongoing clinical study for them. I felt they were trying to push me into having one that I didn't need (my leukemia was undetectable due to a new trial drug). Did you really need such a risky transplant? What was the likelihood the cancer would return?

Sick_Boy_Paddy26 karma

First, thank you, and congrats to you as well. I was definitely really worried about the BMT, whether I needed it or not, and I debated with myself for some time over it even after having gotten it already. Still, Ewing's is something that has a high recurrence frequency, a large percentage of folks who get it, will get it again. Because of that, and the large amount of damage it can do in a very short time even before detection, I decided to give it a go.

sn0wkitty11 karma

Congrats on your recovery! What did the bone marrow transplant procedure entail / what was it like? What is your day-to-day life like now that you're in remission?

Sick_Boy_Paddy16 karma

Well, the BMT is a huge ordeal, it began with testing and typing me and all my family members to find a proper match, then a series of scans and tests, over the course of several appointments. Then, I get admitted, and go through 6 days of hardcore immunosuppressant meds and chemo, day 7 I get full body radiation, and then they extract the marrow from my dad. It has to be done little by little, from different spots on his back. Its pretty painful and you have to be put out for it. After that, I literally got his marrow through my central power port line that I use to get IV meds and normal blood transfusions. Didn't even feel it. After that I continue on anti-fungals and immunosuppressant, and all sorts of stuff to prevent infections and keep my immunes at bay so the donor's can go to work. Transplant is usually a 100+ day process, I'm around day 65 or so right now. :) still recovering, still keeping an eye on it. Currently my day to day is a lot of rest, some eating, a bit of time with the girlfriend, and hospital appointments. After remission, but before transplant though, my daily life had some more video games and music stuff and kitty cuddles.

dirrty_307 karma

Hey I wanted to reply to your comment so you could see this. I know you said that it'll be hard to find a job, but after all the shit you've been through I think you deserve an early retirement. Have you thought of writing a memoir? Book+ Movie deal=$$$

You could even tell your story to a ghostwriter

EDIT: Forgot to ask my other question: Why the fuck didn't they order the full body CT scan much earlier? Are you upset about that? Have you asked your doctors that?

Sick_Boy_Paddy4 karma

Haven't seen my former primary care docs since diagnosis. I've dealt exclusively with my Hopkins team since then. I agree it should have been the first thing. I wish I had known.

I don't know about a published book, but I have often thought of writing my life down. A lot of interesting things have happened to me, after all. I'd love to retire early, but my career in music is my passion and I won't be fully happy till I'm back on stage doing what I love with my friends and mentors. :)

parkleswife10 karma

you look good!
was your donor one of your parents?

congratulations on all your successes in this huge journey.

Sick_Boy_Paddy29 karma

Hey, thank you so much! There are quite a few very very ugly pictures, but I've left those out. :p Yes, my father was my marrow donor. Because of the need for a 50% match, biological parents are often the best choices since they're a 50% match by default. Siblings often work too, but in this case my sister was actually a 100% match! Meaning her marrow would do me no better than my own had.

I'm among the first handful of patients to use the BMT treatment for this specific disease, and so far they say I've done really well, progressing ahead of schedule. My case data will be used in a study regarding the long-term effectiveness of the BMT treatment to keep the Ewing's from returning. This is the 2nd study I've participated in since my diagnosis.

Helping medical science has to be my favorite and most important accomplishment throughout all of this. The other stuff may sound more miraculous, but that's personal stuff. None of those miracles benefitted anybody but me, but the opportunity to be studied and maybe help some future sick kids has inherent benefit beyond anything I'll ever do.

parkleswife9 karma

so interesting.

how are you feeling? how's your physical energy and how are you doing emotionally/mentally?

you are a total badass.

Sick_Boy_Paddy15 karma

Emotionally and such, MUCH better for the moment. I've had some really difficult depression through this. More than a few existential crises, too, that's for sure. Currently, though, the light at the end of the proverbial tunnel is clearly visible so I'm happy.

Physically, I'm a tad weak. Before transplant, so Pre Dec 6th, '14, I could walk without a cane, but still used it anyway, I could stand on one foot, I could jog a little bit and even hop an inch or so off the ground. Any kind of real running and jumping was still impossible though. Since the intense treatments associated with the transplant, though, I lost a lot of weight and couldn't eat for a few weeks, and I laid in bed most of the time so I got weak again. Currently I'm working my way back to where I was very quickly though and will probably surpass it in coming months. :) it is looking like I will recover more-or-less fully!!!

daily_kiwy8 karma

What do you like to eat? Are you on a specific diet or are you allowed to eat whatever you want?

Kudos and keep going!

Sick_Boy_Paddy14 karma

Thank you! I kinda have two modes. When I'm feeling sick, or nauseous, or otherwise am without appetite, I hone in on cravings. Any time I get a bizarre craving for something, I seize the moment, because I know if I don't, there's a possibility that once the craving passes, I might not end up eating anything that day at all. However, during more normal times when I'm doing better, I eat normally. Either way though, I don't need any special diet. :)

mikeman356 karma

Hey Pat, it's your sister's boyfriend. A friend of mine saw this and sent the link to me. I think it's pretty cool. My question is this: What/who has been the biggest emotional/moral pillar for you during all this? Congratulations on your recovery, I can't wait to hear more from EATK!

Sick_Boy_Paddy4 karma

Haha! I was wondering when someone from "real life" would show up! Haha. Too fuckin' cool, man. To answer your question, I'd probably have to say Cassandra. We have been through a lot together since high school, and she probably has the deepest understanding of how I've felt throughout. Not that my friends and family aren't able to do so too, but keeping up with my social life has been nearly impossible in the state I'm in, and as much as they've done for me through this, my folks aren't 100% on the same level of understanding. Whenever I've had big choices to make, or doubts about anything, she has offered clarity over and over again. I also think a lot about my sister, despite not seeing her or talking much. I have always thought that she has had more to deal with than anyone else in the family. I'm really happy that she as been able to stay with me here at the apartment sometimes. I miss her so it has been good. :) As for the band, thanks. I worry about the amount of time which has passed, but I think it'll be a big payoff. I'm excited for a few pieces in particular.

apopheniac19896 karma

Hello, Patrick! We've had some similar experiences. I've thought about doing an AMA before, but I don't have the patience for it.

In 2004, two days before my 15th birthday, I had a rare condition called Transverse Myelitis that left me paralyzed from the chest down. It happened very abruptly, in the course of about half an hour, it went from a minor pain in my left leg, to an extremely intense, burning pain everywhere below my chest. As quickly as it came on, it stopped, but I tried to stand up and my legs gave out underneath me.

It took two days and a doctor who had seen a TM case during his residency at the Mayo Clinic to figure out what was wrong with me. They sent me to a hospital in a larger city for treatment, which I responded extremely well to. During the next six months, I relearned to walk as I slowly healed. In the past ten years since it happened, I've made a near perfect recovery. I still have a lot of muscle atrophy in my left leg, which is visibly smaller than my right leg, and I get some nerve pain there if I sit for too long. Other than that, I'd say I'm almost 100% recovered.

There were a couple days there where no one knew what was wrong with me, and during those days I thought I'd be paralyzed for the rest of my life. At age 15, I didn't really know what do with that information, so I was mostly in denial about it. My question then is: was there a time where you didn't know if you'd ever be able to walk again? And how did you deal with that information emotionally and mentally?

e: fixed minor error

Sick_Boy_Paddy3 karma

Wow. Congrats on your recovery, your story is very similar to my own! I think that because I could trackcmy progress pretty objectively, I believed if I would not ever walk again, I'd at least come close, and hell, to me, if I had never gone past the walker or the cane, I'd have been fine with that. Close enough, right? I'm glad I did recover the ability to walk, though. :)

MydoglookslikeanEwok4 karma

Hi there, Patrick. I read your story, and because I'm a nursing student studying oncology right now, my questions have to do with your treatments. First of all, I am so sorry that you had to endure such a long time - about six months, it looks like - with excruciating pain, every single day, culminating with paralysis. I really am sorry that happened to you.

My questions have to do with treatments...

What were the names of the chemotherapy and immunosuppressant drugs you had to take, and what side effects did you, personally, experience? Did you ever have any vesication - when the chemo drug infiltrates out of the vein and into the surrounding tissue, and destroys it? I hope not. Professors always warn us about chemo meds, and to STAY ON TOP of them, checking the IV site ALL THE TIME to make sure that vesication never happens.

What are some of the things that your nurses did that you appreciated, and what are some things they did that you wished they didn't do?

I've been reading your answers to other people, so some of my questions were answered already, but I just wondered - when you get a craving for a certain type of thing, who gets that food for you? If I was your nurse, I would understand that if you actually wanted any food, then I should get that food for you NOW, but logistically, how does it work? If I was your nurse, I couldn't just leave the hospital and drive to Sonic or wherever you like your cheeseburgers from. Who gets them?

Sick_Boy_Paddy3 karma

Well, in terms of treatment, my chemo meds were Vincristine, which caused some vocal weakness, as well as the typical hair/skin loss, nausea, etc. And there was also Ifosfamide, which was brutal on the nausea and fatigue, and actually caused severe psychological side effects like terrifying hallucinations and panic/anxiety, but when we slowed down the infusion it helped that and I didn't have that problem again. There were other drugs mixed in but those were the big ones. Right now I'm on Sirolimas, ValAcyclovir, and Micafungin as my post transplant stuff.

As for food, the hospital's cafeteria isn't bad! They can send up meals any time of day up until 6:30pm, but after that, there are many restaurants in the hospital open. Some even 24 hours. When I was feeling up to it, I'd go off floor on my own, other times my parents would retrieve the food or take me to get it. Sometimes my girlfriend or other visiting family would bring me cravings I asked for. I'm lucky to live nearby!

IUsed2BHot4 karma

Hey there, Patrick! You are an amazing young man, and I mean that in the truest sense of the word. Not like, hey, I have an "amazing" new lip gloss. Here is a healing picture of my doggy that I hope will brighten your day:http://i.imgur.com/gvLoMKR.jpg I would like to send you a little care package. Is there anything special that you would like? If you PM me your contact info, I would like to send you a hand-knit hat to keep you warm. Keep up the great work, man - you've got a great attitude!

Sick_Boy_Paddy2 karma

Awww! That's so sweet! I love animals. My cat is my best friend and I miss him tremendously. Hats are a popular gift for me! I love my hats and can never have too many. Feel free to PM me and I'll do my best to remember to get in touch! Right now I'm still catching up on AMA questions, and I have a few other PMs to get to, so if you hit my inbox I'll definitely get around to it soon. Thanks so much for your encouragement. Your kindness is flattering. :) all the best.

Chris221104 karma

How do you ask a question on these things? Is it this box?

Sick_Boy_Paddy2 karma

Good job, you've figured it out. What would you like to ask? :)

ChildishGambinoFan3 karma

Howdy. What did it feel like to regain feeling in your limbs?

By the way, I'm sorry if this inappropriate but you really suit short hair

Sick_Boy_Paddy3 karma

Not inappropriate at all! I loved having long hair but once I lost weight, the short hair and baldness never bothered me, aesthetically. :) The feeling came back very very slowly, gradually. And it was almost like it worked from bottom up, like, I felt my feet first, then thighs, but my middle and insides were still a mystery. It would definitely come bit by bit. Its really bizarre and difficult to describe, but my "new" feeling and "new" motor skills developed in such a way to WORK like the old ways, but it FELT... Different, new. It was like, I could walk again, but it feels different from how I remember. Like I said, the sensation is very hard to place. I am told this is an effect of neuroplasticity, meaning basically that certain cells and nerves are kinda "reassigned" or repurposed to pick up the slack from the damaged cells/nerves.

frickboop3 karma

Hi, I don't know if this is rude to ask, but I just had a friend who was recently paralyzed in a similar fashion from osteosarcoma... And his funeral was last weekend. What advice / comfort can you offer to his wife, friends and family, as a survivor of a similar situation?

Sick_Boy_Paddy3 karma

Not rude at all. It would be an honor, in fact. It hurts to hear that your friend did not survive. To his family, first and foremost, I offer my deepest condolences. Losing family is not easy, as I know much too well. I don't know a lot about his illness, but I do know sarcomas are deadly and ruthless. It is an extremely aggressive disease, and though I have accomplished all I have, and overcome, the credit is not mine alone. Luck played as big a part as medical science did. For me to have all of this disease in so many vital places and organs, there are about 6 different ways I could have very easily died if we had caught it even a month later than we did, and god only knows how many times I could have died since then. The fact that this man fought and lost, from my perspective, does not mean that he was not strong enough or even that his treatment was not good enough.

To the children, I'm not sure of their ages, but I hope they can grow up knowing that their father was extremely brave. I know he must have been, if my own fear can be any indicator. I hope that even in his absence, that they can always take honor and pride in being his children. They will certainly inherit his tenacity in their own lives. And to his wife, I cannot imagine what she is going through. The only thing I can compare is my girlfriend, my own high school sweetheart, whom I love dearly. My biggest fear has always been leaving her behind. I can deal with cancer. I can deal with paralysis. I can deal with sickness and weakness, and pain. I can even handle death, if not for her. What I CAN'T handle is the idea of leaving her. It may be hard to see the light at the end, and everybody grieves differently, but I hope that in time they can honor him by living on, and making his strength their own. It is hard to find an upside, but again, if my own experience can be any indication, hopefully they can find comfort in the peace he has found, and the freedom from his pain and suffering.

nomigraine-nopain3 karma

What would you like to do once you are out of the hospital? Do you think this experience change your career path at all?

Sick_Boy_Paddy3 karma

For a time, I thought it would change, yes. I am a musician, a songwriter and vocalist, and before I was sick I was getting my first gigs finally, doing some fun rock opera stuff, recording with my band, and I had a job teaching voice to beginners. For some time while sick, however, I couldn't sing at all. One of the chemo drugs I was having regularly, Vincristine, causes mild vocal paralysis, so I could talk, but singing was out of the question. My voice doctor showed me via an internal camera what was happening, and it appeared one of the vocal cords was vibrating asymmetrically to the other one. I was worried it'd be permanent, but it wasn't. When the rock opera I was a part of came back around for more shows last year, I was able to perform with them! It went great and made me very happy to finally sing again. I'm also still in the midst of trying to finish the record I set out to make before I got sick. We have all drums and bass done, about half the guitars, and only one song with finished vocals. I plan on finishing it when I go home this year, and then taking it to the stage ASAP! I have some really valuable connections here in Baltimore so all I have to do is say the word when the time comes. I can't wait :)

thewonderfullavagirl3 karma

What does one do to control the eyebrows from falling out in the shower? I didn't realise you could have any control over it at all.

Sick_Boy_Paddy3 karma

Hahaha. See, when chemo makes your hair fall out, what it actually does is more like loosening the hair from the follicles. It still needs a bit of force to actually fall out. So, like, when I got my first haircut and started chemo, the hair still on my head would stay on my head, basically until it was touched. If I were to run my fingers through the hair, I'd end up pulling out a big handful of it without even feeling it. But if I didn't touch it, it would stay... Sort of. Laying down in bed and showers and and stuff would eventually cause it to fall out. Same with the brows, all I had to do was avoid rubbing the eyebrows, and they would mostly stay. In the shower, I used a shower chair most of the time, so I could easily wash without the water washing my brows away. :p

bfdnumb3 karma

in december '12 I had a snowboarding accident which left me with two fractured cervical vertebrae and eventually in the ICU, temporarily quadriplegic for 2 weeks and then a lot of recovery after that to get where I am now. What did you tell yourself to will yourself to walk again? Thanks for this AMA

Sick_Boy_Paddy3 karma

Holy DAMN!!! That's incredible. For me, it was simple. Willpower had a lot to do with it, for sure, but most of how I was able to heal had to do with the physical therapy. All I knew is that bit by teeny tiny bit, I was recovering. And I told myself if I kept going, that maybe one day I could be independent again. What was your biggest inspiration in making it through your injury?

ByTheBeardOfZeus0012 karma

I'm curious about some of your early symptoms. Did you have an obvious increase in the number of eye floaters present in your vision over time? I have read that is something that can accompany this type of condition.

Sick_Boy_Paddy2 karma

Strange! No, I had never heard that, although I wonder if I'd have noticed if I were looking for it. I'll ask my doctors about it, that sounds fascinating!

OTrainbow2 karma

I work as an occupational therapist in an inpatient rehab and recently we have had clients who are much younger than we normally experience. How do you deal with the emotional aspect of what you experienced? Any words of encouragement for some individuals who are dealing with a new disability? Also when you are feeling healthy please think about doing some public speaking or even just making visits to your old rehab! Nothing beats a success story and I have seen how motivating it can be to others. I wish you all the luck on your journey and thank you so much for doing this AMA, I know that inspirational stories such as yours helps therapists such as myself stay hopeful!

Sick_Boy_Paddy2 karma

Emotionally, it has been tough, but having things and people I care about has kept me around. The younger patients were a big inspiration to me. I have known many young kids who have had it way worse than me, and the way I see it, if they can do it, so can I. We empower each other I think. To anyone newly living with disabled life, I'd say don't be discouraged. There are so many things happening and there are more and more options for us being developed every day. I don't think we're far off from being able to treat these cases with near-total success. And even if there is no chance for recovery, that does NOT mean no chance at life!

LifeSaTripp2 karma

Have you tried cannabis?

Sick_Boy_Paddy2 karma

Yes. Lots. It helps. Lots.

rdeleon932 karma

Wow, that is amazing. I'm glad to hear things are looking up for you and I hope you are back to 100% really soon!

Funny though, I had a good friend when I was going to elementary school back in Texas who had the same name as you. I think his last name was spelled with a "C" though and he went by P.J. Also, we were the same grade and you're just over a year older than me. I always wondered what happened to him after I moved away.

Anyways, how is Baltimore? I've only ever visited there once or twice and never really got to explore the city. I would definitely love to go there again sometime in the next several years and if you happen to still be around I would gladly buy you a beer. Fuck cancer, you damn well deserve one.

Sick_Boy_Paddy3 karma

Hey! That's funny, I actually have a friend up here who has my same name as well, spelled with a C. I live close by Baltimore here in MD, so I've been coming to the city my whole life. I do like it, a lot of people think Baltimore is very dangerous, but most of it isn't very. I've been coming up independently for concerts and such since age 16 or so and never encountered an unsafe situation. City driving is OK, at very least, it doesn't suck as hard as D.C.

As for beer, I love to try new things, and I'll drink anything, but I do find myself partial to Belgian wheats, like Hoegaarden and the like. I had a couple bottles snuck up to my apartment for the Superbowl recently, despite not even watching it. :p

ruetero2 karma

Your Fuck Cancer shirt rocks. Have you worn that in public? Do people have ridiculous reactions to the profanity? Obviously I'm a horrible person and the most interesting thing to me is your shirt...

Sick_Boy_Paddy2 karma

Hahaha. I love the shirt. An old friend sent it to me, she got herself a matching one. Her professors weren't always happy about it apparently, but no other complaints. I wear mine mostly at home so I can avoid the looks, but hell, so long as I've got the bald head, I doubt anyone would give me shit about wearing it in public.

mustyh2 karma

When you found out were you distraught or did you have some kind of inspirational 'I've come this far, can't give up now ' ?

Also what advice would you give to anyone who has cancer and how would you suggest a doctor to break the news to someone?

Sick_Boy_Paddy2 karma

To me, it was fairly simple, actually. The idea was, the first thing I had to decide would be "do I want to live?" And since the answer was of course, "yes", then I would make decisions from there. I knew that even if my survival could not be guaranteed, that if there were ANYTHING that could possibly be done to help, that I'd do it. All I've done is follow my doc's instructions, and it has not steered me wrong. As far as breaking the news goes, I liked how it was broken to me. Plainly and straightforward. Detailed. The biggest fear comes from uncertainty, so knowing and having an understanding of what my circumstances and options were was vital. I encourage any patient receiving a cancer or similar diagnosis to ASK LOTS OF QUESTIONS until they are satisfied with the information they have.

IamtheCarl1 karma

In your album you mention not having eyebrows sucks. Is that purely an aesthetic thing, or is there some purpose to them that we take for granted?

Sick_Boy_Paddy2 karma

Both! I also lost the lashes too, and the primary function of brows and lashes is to keep stuff out of your eyes! So I would get dust in my eyes a lot, especially when my dad would drive the wheelchair too fast. Haha. Also, I think it just made me look like a baby, or a skeleton or something. Haha.

mudra3111 karma

I dare say you look better with the shaved head, but I'm sure you're ready for your luscious locks again.

So is this a genetic thing? Things like this scare the shit out of me: "I felt a tingle in my face one day." God, I just started getting a tingle feeling in my throat! Not to mention, one of my friends found out he had leukemia after he felt abnormally winded on a run. HIS CARDIO GOT WORSE SOMEHOW AND HE HAD CANCER.

Basically, what are the chances of this happening to another person and how can we catch it early?

Sick_Boy_Paddy2 karma

Well, Ewing's is a unique cancer. It is not hereditary, not environmental, and not due to exposure to any specific substance. It comes about from a fluke error in cell reproduction, which is then allowed to reproduce although it shouldn't, and that eventually becomes tumor mass. Keep in mind by the time I felt the symptoms in my face from the tumor in my skull, it had already spread through my pelvis, lungs, liver and spine. The only thing that tipped me off to its presence was the pain I felt in my face and back. However, the tumors in the other parts of my body were unnoticeable because I couldn't feel them! It could have caused my liver to fail at any time and I'd have never known. The pelvic one could have caused me to need to amputate my right leg. I got very lucky, and other Ewing's patients don't always get lucky.

My best advice is to LISTEN TO YOUR BODY. If something doesn't seem right, do not waste any time and do not rest until you know why.

andyb1231 karma

I pray for your strength and speedy recovery. I had a minor scare with a benign tumour recently, I could only imagine how you must feel. You are one tough cookie, keep fighting, don't lose hope.


I'm sure there were black days you considered giving up and taking drastic measures to end the pain, what kept you going?

What helped you feel normal in the hospital setting? I know that can be dehumanizing at times, you can feel almost like a lab animal.

Finally, did they give you a wheel barrow for your monstrous brass balls, or did you have to supply your own?

Sick_Boy_Paddy2 karma

Seriously? Front page?! Holy shit!! Wish I'd known, I'd have woken up WAY sooner!

Well, first off, thank you, and good on you for getting checked out when you noticed something was wrong. I'm glad it turned out to not be a threat to you. I've dealt with some severe depression lately, but I've never actually felt suicidal, because there are at least a few things and people I could never bear to leave behind. However, sometimes I did wish I didn't have to fight.

Living in the hospital has been tough, but doable. Pediatric oncology nurses are magical. They're a special breed. I'm fortunate to have never felt dehumanized. Hopkins and KKI are both incredible places, my treatment has been top-knotch.

Jareth861 karma

Having lost your hair has now given you a golden opportunity to wear wigs. What hair style / color are you going to chose, and why?

Sick_Boy_Paddy2 karma

Hah! I have often considered a wig, but I know my hair will come back (again) eventually. If I wore a wig, I'd go long and brown just like I used to wear it. Long hair has always been most comfy to me, and it would keep my head warm! I usually keep it between shoulder and mid back length, but it has gotten to my belt level before. I like to donate when it gets that long. :)

weary_dreamer1 karma

I usually wouldnt pry about this, but since its an ama and im curious...what does the financial picture look like? Do you have insurance?

Sick_Boy_Paddy2 karma

YES! I'm so lucky to have good insurance through my dad. I have had friends who had NO insurance and have had to pay for treatment out of pocket, and it is no small feat. Luckily I get disability as well to pay for transportation, car payment, food, gas, and toys every once in a while. If I did not come from privilege, my story would be very different I'm sure, and thats something I never want to take for granted.

nessamctastic1 karma

I had non-Hodgkin's lymphoma and my infusions were all 5 to 6 days long. A week in the hospital is no fun.

Have you checked out Stupid Cancer? There's a con happening in April and I highly recommend going. If you check the website you can find a local meet up happening.

Sick_Boy_Paddy2 karma

Hey! Congrats on your recovery. :) I have indeed heard of stupid cancer and have info from my social worker on it. Thanks for the recommendation, I didn't know there were such gatherings! I will look into it!

falconsbeliever1 karma

You mentioned in an earlier comment that you sometimes had trouble getting yourself to eat other than your cravings for cheeseburgers etc. Did you or your family/doctors ever consider medical marijuana as treatment for this?

Sick_Boy_Paddy2 karma

I do take Marinol, a synthetic cannabinoid, but I myself have been vaporizing and using edibles too, at least when I'm at home. Our med law in Maryland JUST passed, so it is written into law now, but the system isn't set up fully yet. The state will issue several grower permits, and those state sanctioned growers will provide product to dispensaries, however they haven't gotten the grower permits issued yet and still no dispensaries. But within a year or so I think it will be possible, yes. And thank goodness.

jakesowner1 karma

How did you react when you became paralyzed? I lost most of the movements on 1 finger in an accident with a saw and felt pretty bad for a few days at first, I can't imagine how you felt when you discovered that you couldn't move your legs.

And to end in a good way my questions, what was your felling when you started to move at all for the first time after the paralysis?

Sick_Boy_Paddy2 karma

I was scared. I was so terrified that my life would be over. However, two hours after waking up from the spinal surgery, I was able to wiggle my big toe! It was then that I knew I could make it, if I put in the work and listened to my doctors and therapists. :)

GL_HaveFun1 karma

Good luck! I assume since you're 60 days out they know that your immune system took the graft? Any signs of GvH show up yet? I had an allogenic stem cell transplant in 2011 and I've been dealing with GvH ever since - here's praying you don't have too many problems with it! Biggest tip is to watch your lungs!!!!!! I had slight difficulty breathing and it went under the radar until we finally did a pulmonary function test and my FEV1 was 36%. GvH caused me to get Bronchiolitis Oblterans. So not that there isn't enough for you to watch out for, just make sure you do PFT's and watch for signs of difficulty breathing. Shoot me a message if you ever want to, I feel we might have similar experiences to help each other.

Best of luck! Prayers and Good vibes!

O right, ama...umm... how is the depression going? Are you just ignoring it/dealing with it/waiting for it to leave because you know it's temporary or are they sending you to shrinks like they did me (best help I got out of a dozen or so psychiatrists was the Chaplain at the NIH...that guy was incredible).

Sick_Boy_Paddy2 karma

WOAH. Shit. No, no gvhd for me, not at this time, and I am indeed officially grafted. Im sorry to hear about your struggle with GvH, I've only heard about how badly it can fuck you up. And thanks for bringing up the lungs, too, I have indeed been warned of that and I will definitely ask at my next appointment about a minor cough I've been having. For me, the depression has been ongoing. I've been through lots of other stuff since years before diagnosis, but it has obviously been at its worst since being sick. I have occasionally discussed it with a professional, but I have done okay with it via talking things over with myself, and sometimes my wonderful girlfriend. Mostly, I was worried that even if I survived and recovered, that by the time I make it out of this thing, I would no longer be able to do what I love, I used to be terrified that I'd never do the things I loved again, but lately I've seen that I most certainly will be able to resume life sooner than later :)

f1rewhispers1 karma

Hey Patrick,

Firstly, I'd like to start off by saying how inspired I am by you, and all the other survivors of horrible diseases. It truly takes a strong person to make it through to the end, and you did just that so kudos from a stranger~ My question to you is something I can't answer for myself, even hypothetically. The past few months I've had severe back problems, and a pilonodil cyst that's been recurring almost every month. This has effectively made it so that I cannot sit, or stand, or walk, for days at a time. I'm in the same position as you in terms of needing hot water and other forms of pain relief. Many times, when it gets really bad, I almost begin to wish I just couldn't walk anymore so that I wouldn't have to feel it, so that I could try to move past it (ironic huh?). So my question to you is, in that moment where you lost the ability to move your legs, what did it feel like? Was part of you a little happy that you weren't feeling all the pain you usually felt? Obviously you didn't want paralysis, but given the amount of pain you dealt with on average, did it at all ever feel like the lesser or two evils? And to those reading who finding this line of questioning offensive, I'm truly sorry. I didn't mean it like that

Sick_Boy_Paddy2 karma

Great question! Your thinking is not far off. I'm sorry to hear you've been hurting. Have you been able to isolate a cause? When I finally woke up paralyzed, I still had back pain, sadly, but my legs stopped hurting. Believe it or not, I was not immediately panicked. At that point, we were assuming my back pain was from some kind of inflammatory disease, so I thought maybe I was just so swollen that it was cutting off circulation or something. I actually watched an episode of mythbusters on Netflix before finally calling my dad when I couldn't get anything to work. I've never actually told anyone that part! Hahaha.

Anyway, yeah, the point where I was finally relieved was post-op, after having the spine tumor removed that night. I had surgery pain to deal with, but meds helped that, and when I finally recovered from the surgery, I still couldn't move or feel so well yet, but not having the constant back pain was indeed a huge relief. I used to say that I can deal with cancer and paralysis, because my pain and symptoms are being managed, but I could never go back to living an existence in nothing but constant crippling pain. I really hope you can get some relief for yourself too, asap. Have you had MRI and the like?

WeirdAlMaykovich1 karma

Hey, Fellow Cancer survivor here!

I was 11 years old when I was diagnosed with Hodgkin's Disease Stage III-B on April 23rd, 2002. I as well had both Chemotherapy and Radiation, but it was more like 5 months of chemotherapy, (One straight week per month, then allowing my body to build my blood levels back to normal over the next 3 weeks, until the next round, X5) and 4 Months of going to radiation everyday (Except weekends... I think? It was a long time ago). Chemotherapy was the hardest on my body, feeling tired, sore, and unable to talk due to one harsh chemo drug that dried out my throat so much, it left open sores for a few days. I felt hope in those weeks off, because I slowly felt like a healthy human again. I can only imagine the struggle you faced when you lost mobility and I am so happy you had a supportive family when you were going through this. Radiation was seemingly the easiest, but I still felt the effects of fatigue, but it wasn't as bad as the chemotherapy.

I have so many questions for you, since I don't really have many people to talk to anonymously about this... so if you want to PM me, I would love to hear more about your battle.

So my question is, how did the combination chemotherapy and radiation at the same time effect you? Especially with physical rehabilitation in the mix, how did you feel?

Anyways, you sound like a very strong person, and I am glad there is one more survivor in this world!

Sick_Boy_Paddy2 karma

Hey, first off, a big hearty congratulations on your own recovery, that's incredible! Your description is pretty familiar to me. Your chemo plan sounds like it was even more aggressive than mine, I had mine more frequently, but my counts were usually able to bounce back in time for the next one, at least until mid way through my overall chemo, it took longer for me to recover counts sometimes. Doing radiation and chemo simultaneously did not affect me much, luckily, and you're right about radiation being easier. The chemo was the hardest for me. Currently, though, I'd have to say some of the stuff I've been through from the Transplant has been even harder than when I was on chemo. Felt a lot sicker, a lot more often. Unable to eat for WEEKS which had never happened before. Still dealing with some of it, but I'm getting there!

PilgrimProgress1 karma

Where do you think you would be without the physical therapy team in particular? Do you think it was a big part in the rehab?

Sick_Boy_Paddy1 karma

Absolutely. Physical therapy IS the main reason I was able to walk again. When I was inpatient at KKI, I would wake up at 9am, do 2-3 hours of PT, then a lunch break for a couple hours, and back to the gym for another couple hours. It was about 3-6 hours of PT a day for a couple months, and that got me into the walker from the chair. I went home using the walker, and from there it was all me. I didn't have help from PT, but just being home and wanting to live my normal life, I think is what got me through. I remember the first time I walked without my walker. It was amazing. The very next day I got myself a cane. :) Without PT though, I don't think I would have had the headstart I needed.

LiterallyFuckPandas1 karma

Are you God?

Sick_Boy_Paddy1 karma

:p hah, no, probably not, but it sure sounds like I must have pulled a few divine favors, wouldn't you say? Alas, medical science is to blame here. :) and a small dose of REALLY not wanting to die or remain stagnant. :)

Creature-teacher1 karma

Incredible story thanks for sharing!! I'm always curious about how you feel physically during Chemo, are you sick to your stomach? Bones ache? Fatigue? So in other words..what's chemo really like??

Sick_Boy_Paddy2 karma

For me? I felt tired, weak, and sick to my stomach. Like having the flu, all the time.

freebirdisdabest-8 karma

Im not reading all that crap. Good TL:DR.

Do you still masturbate, or has cancer fucked with you about that?

P.S. Good job beating cancer. If you are still at Hopkins in a few months when the MD blues start running, I got a dozen larges for ya on me.

Sick_Boy_Paddy19 karma

Hah. I knew I'd get this one sooner or later. At first, and for a majority of the journey, I couldn't really feel anything dow there, so no. Self-catheterization was (and still is) how I have to pee. I can feel now, and via meds and exercises, I will not need catheters at all very soon. As for masturbation, yes, it is indeed possible now, but I don't really ever do it. I imagine that will change when I'm 100% home and done with treatments.