I don't like to touch on it too much, because it's over but when something has happened in your life that forever changes the way you thing, look at and feel about anything and everything, it's probably worth grinding on a little bit. Also I said I'd post it, so here it goes. I don't want sympathy or petty, because as you'll see at the end. I was one of the lucky ones.
5 years ago it was discovered that I had the genetic mutations or chromosome abnormalities Monosomy 7 and Trisomy 8. Now when you have these genetic mutations or chromosome abnormalities it’s often tough to say what the eventual outcome of the situation will be and that’s a fair point. But in my case with the genetic mutations Monosomy 7 and Trisomy 8, which are 2 of the most aggressive and unfavourable genetic mutations, along with blood counts decreasing at an exponential rate over the course of years, revealed through repeated labs and Blasts cells (which are your Leukemic cells) increasing at an exponential rate over the course of years, revealed through repeated Bone Marrow Biopsy’s, along with numerous other cytogenetic abnormalities, it’s incredibly obvious where it was headed.
So anyways it was May 2009 and I came home from school for lunch. Sick Children’s Hospital in Toronto calls. They told me I have dangerously low blood counts and that I need to go see SOMEBODY right away. I said “Alright, I’ll be there in 4 hours, thanks for calling” They said " Now hold on a minute. You’re not coming here, you’re 18 now" So I asked to speak to my doctor who’s a world renowned oncologist/hematologist and had been following me for years. Anyways he refused to get on the phone with me claiming " I was no longer a patient there and that I was no longer his responsibility" Now this was a problem for me because at my prior appointment with this man we discussed how I would be turning 18 and that I would need to be redirected across the street to Princess Margret’s Hospital because that’s the adult sector. I signed release forms and filled out all the necessary documents so that it could be set up and facilitated, but yet it was never done.
So here I am 18 years old, listening to this on the phone, sitting at home on the couch with dangerously low blood counts, in need of immediate medical attention and yet I was thrown out on the streets, with no doctors, nowhere to go. At this point the situation was new to me and I didn’t know what these lab numbers that they read off to me meant, they we’re just numbers to me. After being told that there’s no one to go see in Windsor, I decided to get in my car, drive 2 hours to London and go to the emergency room. Now when a kid walks in the emergency room and says " Awww I think I have dangerously low blood counts and need to see somebody" It’s a rather confusing situation. I was some kid trying to reason with the triage nurse saying " Awww yeah, Sick Children’s in Toronto called, they told me I have dangerously low blood counts, but they also said I’m not their problem because I’m 18." Finally after pleading my case in the Emergency room and attempting to explain this rediculous situation they decided to draw blood of their own from me to access the situation. Once the lab results came back, they concluded I definitely had some major blood abnormalities and needed a blood transfusion. After reviewing my labs and giving me 2 units of blood they decided that I needed to see somebody because I was in obvious need of medical attention. I was given an appointment with an oncologist at the hospital ( London Health and Sciences Centre)
Dr.Kang Howsan-Jan was his name. To see what was really going on he needed to perform a Bone Marrow biopsy on me. Dr. Howsan-Jan told me that the Bone Marrow results were unchanged from the previous one. I said “Wait a minute? my last Bone Marrow Biopsy was probably over a year ago?” He then went on to diagnose me with Myelodisplastic Syndromes. He told me that I would require a Bone Marrow Transplant. If I didn’t find a match within 18 months I would develop Acute Leukemia. If a match still wasn’t found at that point then I would die. He told me that in the meantime there was nothing they could do for me. Theres was no medication, no treatment, not even any clinical trials available. So I go home and continue to live life just as I normally would. Now within 2 weeks if that appointment with Dr.Howsan-Jan I was living at the hospital in Windsor. My Hemoglobin was 52, my Platelets at 2, my Neutrophils at 0 and my White Blood cell count at 0.2. I spent majority of my summer living in the hospital in Windsor. I had thrush and mouth sores, I was losing weight at an exponential rate, I was in so much pain I couldn’t even move, walk, eat or drink, I was having nose bleeds, fevers, chills and bloody urine/stools. Doctors asked me who I had been seeing and who was looking after me. I told them “Aww basically no one” I then told them how Dr.Dror bailed on me and through me out on the streets and how Dr.Howsan-Jan told me to “go home” theres nothing we or anyone can do. Once again I was faced with blank stares and confusion. They looked at me and said “You’re dying…your body can not survive in the condition it’s in. You’re telling me this is your situation and you have no doctors looking after you or following you, let alone anybody treating you or intending on treating you?”
I remained in the hospital in Windsor for majority of the summer, dependent on blood products, IV hydration, IV nutrition and numerous other IV medications. Doctors in Windsor decided that I needed to go see my hematologist/oncologist in London because obviously something needed to be done. Finally when I was able to leave the hospital, even though I wasn’t supposed to because I was in such poor shape, but needed immediate medical attention I went back to London for an appointment. When I went to go to my appointment with Dr.Howsan-Jan in London, a man walked in the room, starred at me and then I proceeded to ask him who he was. He told me that when I come there, it’s a team of 6-8 doctors and that I would see whoever happened to be available. After we cleared that up he goes “Hold on I forgot your name, let me go check” This man knew absolutely nothing about me or my condition. I explained to him the situation and what had been happening since the last time I had been there. I described my symptoms to him and explained that things had gotten worse and these were not symptoms typically experienced in patients with Myelodisplastic syndrome. I begged him to repeat a Bone Marrow Biopsy because the status quo had obviously changed. He told me " No we know what you have, you’re going to need a Bone Marrow Transplant and in the mean time there’s nothing we or anyone can do. We’re not even going to bother setting up anymore appointments"
Eventually realizing the state I was in, realizing nothing was being done for me and that I was going to lose my life for no reason, I went to the states. I got my medical history and records to my physician when I went to the U.S and when I first met with my physician he didn’t even want to take me on as a patient. He told me “I will not be responsible for your death because these guys in Canada have not been doing anything for the last however many years” He explained to me that I should’ve been put on the Bone Marrow Registry years ago and then proceeded to ask me “How long have you been on treatment, chemotherapy and what not?” I looked at him with confusion and said “I’ve never received any treatment and they never intended on giving me any…and by the way I need chemotherapy?” He looked at me in amazement and said “Who was looking after you previously?” I told him Dr.Dror at Sick Children’s and Dr.Howsan-Jan in London. He could not believe it considering no doctors should have made these mistakes, let alone top specialists in London and Toronto. You see I was a kid and I never wanted to go to the States for treatment, but when you have guys telling you to go home there’s nothing we can do for you versus guys across the river telling you, come here, we’ll save your life. You don’t have to be sick and probably never did. What do you do?
When my friends were going to school, I’d wake up at 6 A.M, drive 2 hours to chemotherapy, do treatment for 8 hours, drive 2 hours home, go to bed and do it all over again. I spent about 6 months in Michigan doing various chemotherapy regimens. Unfortunately by the time I got to Michigan things had been let go for so long that chemotherapy was relatively ineffective for me and was never going to be the ultimate cure for me, but was just meant to control the disease and keep me breathing until I hopefully had the opportunity to get a transplant. Now I don’t think you understand. I had no insurance or medical coverage in the U.S. I was 18 years old, dying and meanwhile I was fundraising to save my own life. You had kids, random people scrubbing down cars so that I could afford to live another day. Not to mention my parents giving every single penny they had and selling their assets so that I could have the possibility of living. Kids, random people and the community did more to save my life than any of my doctors in Canada ever did. That’s pathetic. There were times where I would be in the hospital in unimaginable amounts of pain but I wouldn’t ask for anything because I could not afford it. I met a man in the hospital. He was in the room beside me and also had AML, without the genetic mutations Monosomy 7 and Trisomy 8 but less aggressive AML. Now he was older than me but technically in much better shape. One day we were talking and I met him, was a nice guy. I wake up the next morning and friends and family are outside his room crying. I asked my nurse " What happened?" She says " Oh ahh, his white blood cell count was low, he got in the shower, ran a fever, we couldn’t control it…he died" Do you know what it’s like to hear that? I mean here I am in a lot worse shape and I don;t even know if it’s safe to get in the shower. I don’t think people like Dr.Dror understand that they’re dealing with with human lives, let alone the lives of children. Once someones life is lost, they’re not coming back, they’re gone for good. I don’t think Dr.Dror understands that, I really don’t.
Anyways after 6 months in michigan I had gotten into remission. My doctor explained how I needed to go to Washington D.C immediately for my transplant because we cannot sit around on Acute Leukemia, especially in the case of Monosomy 7 and Trisomy 8. It took me about a week to get to D.C between communication and facilitation and by the time I got there my blast cells were at 25% and I had relapsed. They informed me that I could not receive my transplant. They said " Don’t worry about it, we’ll give you 3 more rounds of super powerful, high intensity chemo, drugs that are not typically used, drugs you might not even have acess too, that will take care of your blasts cells, we’ll get you into remission and you’ll get your transplant. So I did those 3 rounds of chemotherapy and after they were done, they performed a Bone Marrow Biopsy to see where my blasts cells were at. They concluded that my blasts cells were at 40-50%. Doctors informed me that if they didn’t transplant me I would die, but if they attempted, they might be successful. Eventually they decided to give me a myeloblative stem cell transplant, in which case the chemotherapy, radiation and immune suppression leading up to the procedure are at a much higher intensity. Finally that took care of my blasts cells and I was able to receive my transplant. I had to move 1000 miles away from home and live in a room the size of my bedroom, going through chemotherapy, radiation therapy, immune suppression, countless other procedures, deal with countless other drugs, medication, ill-side effects, an extra large catheter up my dick and not to mention the common side effects like hair loss, fevers, chills, nausea, vomiting, diahrea, GVHD. I could go on but the list doesn’t end.
Not a day would go by, not a minute, not a second where I wouldn't think to myself "If someone would have done their job and token responsibility this would have never had to be me" All the things I would have never had to go through, all the things my family would have never had to go through, my friends, loved ones. The saddest part is when you're lying in that hospital bed dying, making your last wishes, contemplating your life, knowing that it could be over soon and meanwhile the situation could have been totally avoided and then you begin to think and rethink, life, memories, accomplishments but even more and even worse you think about all the time you wasted, all the things you didn't do, about everybody you know, all your regrets. If I would not have went to the states I would have lost my life and died. There is no debating that and if anyone wants to, lets do it.
At least when someone passes in an unfortunate event like a life threatening illness your family, your friends and everybody you know had the satisfaction of knowing that everything that was done to save their life was done. Meanwhile nothing, less than nothing was done in effort to save my life. I would have lost my life if it wasn't for my family, my friends, supporters and doctors in the states. No one would have ever known that it never had to happen. Now I'm a reasonable man and I know you're thinking who's this kid to be saying this, he's a 19 year old kid with a high school education. He has no right to be saying this, there's no reasonable credibility here. This kids not a doctor, nor a politician, does he really know enough about what's going on behind the scenes to make a reasonable conclusion on this situation? The answer's most likely "No" But am I here saying screw Canada, screw this hospital, that hospital, screw this doctor, that doctor, screw the government, screw the Canadian Health Care System. No, and that's why I'm here, because Canada's one of if not the greatest country in the world in my opinion and we do have one of the best health care systems on the planet. We cannot have irresponsible, lazy people like Dr.Dror dealing with the lives of children. I'll give him the benefit of the doubt and let's say that no matter what the circumstances, no treatment, treatment, whatever, that Dr.Dror did everything he was supposed to, did everything he could and made all the right decisions from a medical standpoint. That does not disregard the fact that he did not put me on the Bone Marrow Registry, that he did not recommend or set me up with anyone to look after me and that he threw me out on the streets with no doctors and no one to look after me when i was in need of immediate medical attention as a child. Now this is not a small town doctor we're talking about. This guy is the Director of Marrow Failure and Myelodisplasia Program for the hospital of Sick Children, his Clinical Care activities include Staff hematologist/oncologist, sections of hematology and Bone Marrow Transplantation, his Areas of Specialty include Bone Marrow Failure, Myelodisplastic Syndromes, his Research Interests include Molecular and Cellular Mechanisms of Bone Marrow Failure Disorders, Mechanisms of Pre-Leukemia and Leukemia in Marrow Failure Disorders and Genetic and Clinical risk factors. So tell me this guy didn't know better, everyone knows he knew better, he knows that he knew better.
If I would have went home and listened to those fucking morons of doctors, I would have lost my life for no reason, but neither me or anyone of my loved ones would have ever known. Words could never describe how mad this makes me. To think that other people are losing their lives and meanwhile they don’t have to, but neither them or anyone will ever know. That thought could literally make me sick. Maybe I have no right to say these things, maybe I’m the idiot, but I’m past the point of giving a fuck. If no one see’s people dying for no reason, including children a potential problem then I don’t know what to think anymore.
But fuck that shit, it’s over now. All I can do is be thankful. I had everyone behind me 100% and I’m here now. All that matters. Also you’ll noticed I mentioned names and facilities. Some people might not think that’s a great idea, but fuck it. What’s the worst they’ll do kill me? Already tried that shit once…didn’t work.
Oh yeah…training. Went awesome.
A1. Pulley Chest Press - Increased Weight by nearest pin
A2. Pull Ups - Increased Reps by 2 reps
B1.Neutral Grip Chins- Increased reps by 2
B2. Push Ups- Increased reps by 10
B3.Split stance cable push - Increased reps by 2
B4.Split stance cable pull- Increased reps by 2