Hi, my name is Sheila Stewart, and I have been honored to meet a young man named Trevor Wachsman. I am stepping up and out of my comfort zone to ask people that are looking for someone that needs a help up, to take a moment and read this young man's story of courage and his will to keep up a fight. The rare cancer obstacles he has endured and came out of since the young age of just 2.. The support he has, in return, given to those suffering like him, and now his struggle to get the medical care he needs to take care of the side effects of treatments 25 years prior, and is in need of shelter. His promise and strength to never give up is by far the most inspiring life I have ever met. Please, take a moment and know it won't be a moment wasted. This extraordinary young man is now faced with what we all fear the most and he needs YOUR help TODAY!! Please read. Here is his story in his writing. Thank you so much for your time and donations. It will make the biggest difference in this warriors life! Amen! Please help and share Trevor's cry for help. Let's get him more than his needs met!
Plea To Survive & Pay It Forward:
This is my story of a lifelong battle with multiple cancers and the late effects that surround the cancers as well as the treatments. This is about my will to survive despite everything I have faced and will face. As you will read to understand, I battled rhabdomyosarcoma behind my right eye at 2.5 years of age as well as bacterial spinal meningitis. With only 3% chance of survival I beat my 1st cancer battle thanks to a rough trifecta of surgery, chemo, and radiation only to end up facing a dollar bill sized acoustic neuroma brain tumor 25 years later. Which then opened pandora's box in every horrific way, resulting in approx 22 major medical conditions to battle everyday.
Some of the worse current and long established late effects that have crippled me for nearly 8 years:
-Crippling Cancer Related Chronic Fatigue CRF
-Severe Abnormal ADD
-Chronic orbital pain
-Traumatic Brain Injury
-Loss of an eye
-Eye Floaters in remaining eye
-Loss of hearing in one ear
-Severe facial nerve damage & palsy
-Difficulty with Speech and eating
-Major dental problem from radiation
-Severely depleted testosterone & other hormones
-Full body nerve damage
-Short term memory lapses
-Inability to have children
These medical issues have cost me everything I have…...family, friends, schooling, career and basically the chance of any quality of life…. In order for me to truly paint the full picture I have to try and include each piece because every part is essential in completing it like a domino set where one missing piece can stop the whole flow completely. I realize how busy people are, but I ask every person reading this to take the time to read it. This story isn't just about me nor is the purpose soley about me, it's actually about my struggle to create awareness about my health conditions in order to help change aspects of treatments to prevent future pediatric oncology patients the horror of walking in my footsteps. Please stop and imagine this is you, walk in my shoes to try understand what everyday is like.
Tomorrow you wake up....By the time you open your eyes your right eye or where your eye used to be is already in pain. You try getting up an moving and even though you just slept for 8 hours you feel like you have had the flu for months your so tired. The alarm on the phone is going off but it fell off the bed and you can hear it but in frustration you can't find it because you can't locate sounds anymore since you only hear out of one ear.
You finally find it and make it to the bathroom to have to deal with bandaging the painful gaping horror that use to be your eye. People understand the importance of eye contact as humans yet can't imagine how affected and effected people are when dealing with a person with one eye. People look at you very differently, the world around you just sees you as an oddity.
Your mind is racing with literally non stop thoughts and oddly having Laser focus but that Laser focus shoots with each thought and direction creating ADD on steroids. Ironically your brain is still trying to live and think about anything and everything involved in surviving while your own body serves as your worst enemy. Your mind and body aren't working together at all.
Mind constantly bombarded trying to relive memories of anytime in life that was good or positive because you haven't had a single happy memory in nearly 7 years. Remembering friends and family and just having an existence. Trying so hard to hold onto the hope that I'd get to do those things again, people dream of riches and travel, I dream of just waking up and doing school and or work and having people in my life again to have some purpose.
Stumbling around lethargically trying to make sure the one and only living creature in your life gets fed and walked. Imagine actually knowing that it's nearly 100% possible that not one single human walking this earth is thinking about you in any manner at that time. You can go weeks without physically speaking a single word and even when that word comes out it's often towards your one true friend your service dog.
Now take into consideration there's no telling what time it is when this starts actually takes place because your fatigue and sleep are so thrown off and impossible to keep a schedule so it may be midnight when your day starts today then 9am tomorrow or 3 pm or 7pm or 3am, no telling or controlling it but guess what the entire world around you has a schedule that exist everyday that every other human is going by.Most days even bothering trying to eat at set parts of your day regardless of times, you struggle to eat because you can't chew with the majority of your mouth, and you have almost half dozen adult teeth that despite how hard you take care of your teeth, they have completely just fallen or crumbled out and cannot be fixed. Good news is you are extremely self conscious about eating in front of people because of facial nerves palsy but your never around anyone anymore so it doesn't matter.
Now wrap your mind around this epic thought and feeling truly, imagine knowing you have no schooling, no career, no home, no family in your life, no friends, no relationship or significant others of any kind, no coworkers or fellow students. You have NOBODY, your dog has been your everything and is the only love you feel or seemingly share with and her age and health are absolutely coming quickly to an end as well. Soon that one and only other life will pass also and at that point you will stand upon this earth truly alone.
Because your career and schooling crumbled to your health issues your Financials have completely been so destroyed you can't get a bank account or even basic cell phone plan. You had perfect credit now you have stacks of debt and inability to pay anything. Your health that crippled your career and schooling and took friends and family away hasn't been fixed, not only has treatment not fixed the original problems but as time has gone on new issues have spawned and untreated.
Everything you have ever done or tried is being taken away because either the effects of cancer or the treatment. You chose none of this, matter of fact this started at 2 years old! These aren't caused by choices or mistakes you made in life, you have NO CHOICE OR CONTROL.
Doctors push you away because your complex, people can't fathom the idea of being sick and not just going to the doctor an get treated and healed. That doesn't happened in your life, your like the red headed step child an nobody wants to deal with conditions they can't fix.
On top of that insurance has given you the scarlet letter literally your entire life and made your preexisting conditions cloud you from coverage. Then somehow despite 22 major medical issues each one on its own classified as a noted disability yet 3 states multiples times turn you down for any assistance somehow.
The American Cancer Society won't help in any manner because they only do things for patients during the actual treatment of the tumor, they are fully aware of what's happening as a result of treatments but they don't care somehow and aren't willing to help you at all. You reach out to government, churches, nonprofits, news,radio, anyone and anything to try and find someone willing to help to only realize your story isn't worth the current world's time because it doesn't sell.
You truly know and see that there is zero sign of anything existing in your future. You have nothing and nobody on or in your life anymore. And to the few people you know in life anymore you're just a burden because of everything I explained. And everyone fairly has there own struggles and especially now more than ever where people are so self centered that they post every little thing they do or say, nobody has time to or desire to understand or worry about your time on this earth.
Life we all know isn't fair, but despite everything you have survived, you have beat one of the harshest childhood cancers, you have had one of the rarest brain cancers and survived multiple brain surgeries, you have had major traumatic brain injury, you have beat bacterial spinal meningitis, you lost an eye, you lost control of half your face, you lost half your hearing, you have chronic eye pain, chronic migraines, chronic fatigue, chronic nerve damage, issues eating speaking and major dental problems, your hormones are all low or depleting, you have short term memory gaps, severe ADD, PTSD… You have pushed and pushed through all of that with the previous belief everything happens for a reason, you believed your nightmare would help others not to follow in your footsteps and that you would be able to help others. Instead your survival or even reason to survive is running out or gone and your chances to help anyone is gone. This is your reality....
I guess maybe least if i shared with everyone even though this is my deepest darkest most painful parts of me exposed, I hope being an open book will help pediatric oncology somehow someday. My hope is to establish awareness for myself and in turn also helping those to come. One of my biggest issues is I have never been able to establish any amount of people trying to more or less think tank because every person or doctor in my past that tried taking my issues on in anyway of helping just always realized it was to much for one person in any aspect of helping at this point an abandon me. But I don't blame anyone from this, I completely understand it's more than anyone can or want to deal with I assure you, I face it because I have no choice nor have I ever had the choice to choose a life without all these nightmares.
Shockingly it's always become worse, last year I found myself evicted from my apartment, car on repo list, all bank and credit cards closed and or maxed without anything or anyone in Birmingham Alabama. A year earlier I had moved to Birmingham to volunteer myself for research under a doctor I had followed an hunted down that was coming to Children's Of Birmingham to lead a study on late effects of pediatric oncology. It was something that previously required almost a year of doing anything and everything possible to make sure I had funds to move there for 6 months. The research team had believed that they would be able to send me through every specialty group at UAB to address the laundry list of late effects I was facing from my multiple cancers.
But as usual my luck would have that and I found myself there longer as they struggled to figure out any treatments. Suddenly every account and card was maxed trying to stay there and quickly lead to everything going into collections and destroying my credit. The doctors threw in the towel on me as well so again after years of trying to find medical aid from research doctors I found myself without anyone or anything.
Miraculously out of the blue a family member I had not been in touch with in a long time randomly came into the picture and was expressing concern about me. They explained California had many programs designed to help people with disabilities. As well as California offering its own medical insurance that I'd actually qualify for and be completely covered for the very first time in my life.
I've been denied insurance my entire life because of pre-existing conditions and turned down for disability 6 times in three states as well any other assistance programs despite over 22 major medical conditions. They explained they wanted to help me get out to California and once here I could get enrolled into all these programs as well as finally have insurance so I can have my first primary care doctor because I've always just had specialist or entire teams.
Before leaving I was already Medi-Cal approved and the plan told to me was get me there, they would help with cost of temporary housing for 3 months in a hotel or apartment. Explaining i could finally have help and seen by cancer research doctors at Cedar Sinai. I was told I deserved a chance for what I've had to endure. For the first time in years, it sounded like I had a chance to get better and actually have the chance to live again.
After making it to California getting I struggled badly with my normal medical issues that crushed my life and caused all of this. It took a few weeks to apply for the variety of assistance they had explained id qualify for and finding the correct cancer research doctor at Cedars Sinai. Well Cedar's explained to me how insurance bills because I've never had it, I had to have a PCP primary care physician refer me first to get it in.
A week away from this first PCP doctor's appointment, completely out the blue, my family member was seemingly frustrated with all these government systems not happening fast enough or at all like they expected. I had expressed concern originally because my entire life I have fallen through the cracks and not ever being covered by any type of assistance despite the effort and shock of every health provider or 3rd party assistance group.
A part of me is becoming taken back by the fact it seems like the worse thing I did was want to survive and beat my illness because my ability to show I won't stop apparently has worked against me somehow because I feel as it makes people or agencies feel like my health isn't as bad as the doctors report despite the medical clear cut evidence, it feels like my desire to not give in is held against me.
Then then shockingly, without warning I was told “sorry I'm no longer willing or able to to deal with this.” Meaning the following morning I'd wake up with my service dog over 2000 miles from anyone, funds, food, shelter, and still growing sicker by the day. We were forced to try and cram into my car with all my belongings to try and survive with no resources. We were officially homeless and due to my medical issues and the service animal not even shelters would help or take us.
This went on for month with some help eventually and sporadically coming in from a handful of old friends and or select family. After over 3 months of trying to get into Cedars I was at the oncologist two days before Xmas and they broke it down that clearly my multiple referrals to Cedars didn't matter because the insurance I had simply wouldn't cover my medical needs because like the American Cancer Society that would never assist because although everyone was clearly uptodate on the reality of the severe late effects I was facing, I didnt currently have a tumor.
An in terms of my coverage there was no way to bill for these medical needs and the request for insurance to get me into Cedars Cancer program that I came across country for was denied. To throw added insult to injury during this time because of the places I had been having to stay I developed staph infections as well as some time of fungus or bacteria from mold of some kind.
Again I find myself alone without any resources or even chances of treatments with no ability to even know if the next day would have food and shelter for us. California because California is 1 of 5 states that allow doctor assisted medicine to end life if health conditions are to much. I've never wanted to give up but with having nothing and losing any hope I had it's something that doesn't sound as harsh in my head as it will to everyone else and with all my medical issues I would qualify, the true component that killed me about this thought was simple, the only thing I have refused to do in my life is give up and not keep trying and this would be me giving up finally.
I happen to reach out to an old friend and my old boss Matt Meyer at VW Audi Of Huntsville where I had been working right before I had my brain tumor in 2010 when this nightmare began. He expressed concern and was trying to figure a way to help me get out of this situation and to find help. If my belief in things happen for a reason still ring true, he actually out of nowhere was going to be flying into California no more than 25 miles from me in two days and wanted to meet with me.
With cost and no way of support in anyway from anyone in California it was clear I couldn't stay there so the idea of getting back to where I grew up in Savannah Ga in hopes of finding a way to get medical help and assistance with still having the hope I can find treatment to allow me a chance to go back to school and finish so I can have a career in pediatric oncology and make my goal of helping bring awareness and support to these kids who share in my cancer battle from such a young age.
But coming back to GA also meant back to no health coverage at all for any of my medical needs not even the basic meds I had been on for years. So my journey and struggle are far from over and the last thing I have ever wanted was to be asking for help but as anyone can read and my records will show this is all been out of my hands. I am far from someone wanting or trying to take advantage of anyone, the government somehow has discarded me my entire life. I turn 36 Feb 21 and if I can't find help and support getting medical handled and basic food/ shelter covered long enough to hopefully find medical help for the issues that have robbed be of my life before it's to late.
I know all of this is a lot I assure you I know all too well it's more than anyone wants or needs. Matt believes in me and he feels that if people actually saw my whole story that they would want to help in any manner to help me so I can have that chance to pay it forward as well. The whole story with much more detail and stories is going to be pasted below for those of you that truly want to read and understand my journey which I pray sheds light on the need for awareness & research for pediatric oncology. Also first below you will find my personal mission statement I wrote when entering into my radiation therapy program before the late effects caused my medical withdrawal and slow steady destruction.
My Personal Radiation Therapy Program Mission Statement
"My Mission Statement in this Radiation Therapy Program differs greatly from my fellow classmates. Radiation Therapy isn’t a subject I am just reading and learning about, instead for me it’s a way of life. Radiation is my reality, it has defined me. This career choice chose me over twenty five years ago whether I knew it or not.
Physiologist will tell you that if you think back to your first memory, it will most likely relate to your adulthood. Supposedly the earliest that memory comes into play is a little after three; well mine was when I was approximately two and half years old. I remember being fitted for a foam helmet and having little Smurf Stickers applied to it by medical personnel. This was right before going into some kind of machine for these treatments.
Well those medical personal were Radiation therapist and they were putting me through my Radiation Therapy Program to battle my cancer behind my right eye. I recall how scary the machines and treatment were to me as a child but how much the therapist helped by showing me care and support throughout my treatment.
I was given less than a 3% of beating my cancer; the radiation therapy was responsible for defeating my cancer. Radiation Therapy saved my life and that’s a fact that cannot be disputed. Now flash forward almost exactly twenty five years later to March 28, 2010 when I ended up in the ER with handful of odd symptoms.
After a MRI scan of my head, I found out I had a dollar bill sized acoustic neuroma brain tumor. Now the true irony sets in as I find out the treatment that saved my life as a child had now twenty five years later created a brain tumor that may kill me. Numerous brain surgeries and dozens of other surgical procedures later and I am tumor free.
I survived again but this time I didn’t escape as easily, I lost the vision in my right eye, the hearing in my right ear and partial facial paralysis on the right side of my face. On top of that numerous surgeries and procedures have failed and I live in pain every day because of the cell damage the Radiation therapy gave me twenty five years after the treatments.
People always ask me if I hate what Radiation has done to me or regret having these treatments. The answer is NO, I wouldn’t have made it to 2010 without it, I would have died in the hospital as a child. Am I happy with the side effects I have experienced? Of course not but hands down the good outweighs the bad, I am alive, maybe not problem free but alive no less.
I have spent over ten years volunteering my time at pediatric oncology camps throughout the country, and I personally went to these type of camps as a child. What a child who battles cancer goes through is beyond most people’s imagination, yet almost every kid I have ever met battling this demon we call cancer has the highest spirits out of most kids I know.
This relates to my mission statement for Radiation Therapy because I have a true empathy and understanding for what these kids must face. I know how hard it is and how there life will be defined by this disease. Win or lose their life an there families live is forever changed.
My goal or mission is upon graduation of this program to work in a children’s oncology unit and as I administer these radiation therapy treatments to these children I will devote my life to trying to make this process easier for them to handle, even if it’s the slightest bit. If I can make even one child’s experience with Radiation therapy easier than my life is truly complete. With my empathy and understanding I feel the role I will play as there Radiation Therapist will allow my patients to feel more comfortable and help me guide them through this difficult time."
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No Child Deserves To Walk In My Shoes
Here are two interviews done years ago in 2011:
My story began at the age of 2, I had a rare form of childhood cancer by the name of rhabdomyosarcoma behind my right eye. Multiple surgeries and treatments were implemented unsuccessfully before another horror was introduced. While fighting the cancer, I also developed bacterial spinal meningitis which abruptly halted the race to cure the cancer, because shockingly as dangerous as the cancer was the meningitis posed an immediate clear and present danger. Luckily I beat the bacterial meningitis and then the decision to implement a new protocol of specific combination treatment of chemotherapy (vincristine) with high dose Radiation Therapy (IRS-II, REGIMEN 23). The overall chance of survival was approximately 3% and even that wasn't clear because this treatment was truly the first phase, so no data or known history of its effectiveness existed. The only thing my parents knew, was it meant a chance of me surviving. I recall being fitted for a foam helmet and having little Smurf Stickers applied to it by a radiation therapist before starting my first treatment. I recall how scary the machine and experience was, but how comforting the treatment was from the therapist during it all. Upon the completion of the Radiation Therapy, the cancer was successfully defeated. It came with sacrifices though, primarily losing most of the vision in my right eye due to right optic nerve damage. Truthfully little was known about future prognosis and quality of life to come. The fact of the matter was I was alive and no matter what was to come, I at least had a chance to fight that next battle.
Some part of me has always been a fighter, always pushing through the challenges as they come, no matter how large they are. It is safe to say I never wanted to have my life revolve around cancer, to ultimately be defined by something that nobody wants or ask for. But regardless these life-and-death challenges taught me at a very young age how to fight through whatever battles life would hand me, or so I believed….
The challenges and things I have been forced to accept or deal with as a result of cancer have been numerous and seemingly never ending. After one of my first cancer treatments at Mount Sinai Hospital in New York City my parents and I crossed through Central Park where a US Army Blackhawk Helicopter had just made an emergency landing. The chopper was sectioned off, and hundreds of spectators gathered around to try and get a closer look. Seeing my excitement my father walked up to the crew and explained my circumstances. To my astonishment the crew decided to let me have a private tour of the chopper. I will never forget the moment when the Army pilot put this giant helmet on my small head, made bald from all the chemotherapy already taking effect.
From that point on, all I ever spoke of was the US Army pilots and their helicopters and jets. Soon after that impressionable experience I decided that I wanted to be a US Army pilot. However, not too long after making that choice, my family had to let me down softly and explain that pilots were required to have 20/20 vision. Even though this news broke my heart, I was nevertheless determined to be part of the military. I thought I wanted to help serve and protect our country. Everything in my life that interested me was military-related, and I knew this was my calling from a very young age.
I am sorry if it seems I am back and forth but this is the way to explain in the best I can from my perspective. Cancer has become a common household word. Cancer doesn't care about race, age, sex, economic standings, or anything else...It will come after however, and because of this, we all seem to nowadays know someone whose life has been touched by cancer in some way shape or form. This overall awareness today is so much different than it was for me and all the other young adults of my age group and above us, from when we grew up. Today we see ribbons and signs about awareness everywhere. It's not the erie unspoken word it once was, in the past it was almost like having the scarlet letter. Being a child and growing is hard enough on its own and lord knows kids are rough on each other for anything deemed different. So now take a child who may physically have even the slightest alteration to their body that's visible to others combine with the fact nobody spoke of cancer, so there's no explanation or understanding of why a child has these differences to other kids.
Early in school, I was picked on, laughed at because of these differences. Back then I didn't even really understand how to react to something like that, so it made me shy and timid. The only thing that ever helped early on was attending a pediatric oncology camp. The camp I attended back then was Camp Rainbow sponsored by the Medical College Of Georgia. Following the completion of my cancer treatment, we moved out of the north down to Savannah Ga and for years had to do follow ups at the Medical College Of Ga. They brought me into the camp and it was something I cherish, it was a place where judgment did not exist. You could have no hair from chemo, be missing a limb, have speech issues, or a wide variety of other complications from cancer treatment and yet not one kid looked at another like something was wrong. My summer camp sessions never were long enough and were short lived overall because that camp had a policy about only being able to come X amount of years off treatment. I want to mention these camps because of a few reasons, but this first one is simply because of in a timeline it was part of the start of my childhood and a portion of the beginning of the strength inside me developing.
Anyway elementary school was definitely a challenge, don't get me wrong I had friends and made them well because if I could get comfortable I wasn't shy at all and people were drawn to me. I struggled because of the location of my cancer behind my right eye and the combination of many early surgeries and heavy radiation to a young developing skull left me more or less blind in that eye, also caused it to at times become lazy and my right temple was pushed inor say underdeveloped. All stood out big time and from as far back as I could remember I had severe migraines and nothing that would cure them. Early on I was very skinny then I became fairly heavy and never really was very athletic because I had always remembered all the doctors saying all the things I probably wouldn't be capable of as I grew up, so I gave little effort in athletics. To make things harder I had to watch my mother fight colon cancer and relapse numerous times as well as having a tough battle with rheumatoid arthritis and fibromyalgia.
Entering middle school I was at first very awkward, then I suddenly began to have that drive to define the doctors and began bringing that desire to attend West Point back. Physically I started working out and exercising early in 6th grade and actually fairly rapidly started to transform in many ways. I was doing a little better overall with school and being shy or timid. I was terrified to look people in the eyes due to fear of something looking wrong, so I always kinda looked away and avoided groups. I could handle one on one talk where I could control the angle people saw me, and as often as I could I had sunglasses and or hats on. I began to be very social yet still had people I was embarrassed to be around because of looks and comments made about me. My confidence did get beat overall though in many aspects as I pushed myself. I played football which was something they never figured id do. Even was 1 of 3 captains on our team which was an incredible change.
My desire for West Point grew stronger by the day. In middle school I became obsessed with West Point and made it clear to friends and family that attending West Point was my goal. I knew that if I could achieve admission to West Point, then I would have the honor of becoming an Officer. It was almost impossible to find me not wearing something from West Point and my room was covered with posters of the academy. My father flew me up in the summers to his home in the NYC area and he would take me to visit West Point almost every year, even taking me to a few of the Army vs. Navy football games.
Throughout my high school years I continued to focus all my efforts toward my West Point dream. I worked tirelessly to achieve high academic and physical fitness standards necessary to gain admission to the military academy. My uncle even contacted two friends – a US Senator and a high-ranking military officer – who, after listening to my story, agreed to write me recommendations. I seemed to be moving steadfastly towards my goal until one memorable day when I had a visit from our college counselor. I noticed that the counselor brought a large book on West Point, so I took it home for the weekend. Well, over that weekend after going through it, page by page, I came to the section entitled disqualifications. There it was, clear as day: a cadet must have 20/20 vision, no ifs, ands or buts about it. My world came crashing down. My mom came home to find that all my West Point clothes and posters were dumped in a trash pile by the road. The one dream that had given me hope and focus as a child was suddenly ripped away from me.
Like so many childhood cancer survivors in my circumstances, cancer defined my childhood no matter if I wanted it to or not. Today I am very open about my cancer and my experiences but again back then most people had no idea what I had survived; they just saw the physical effects but had no idea what caused them. All though cancer left a very noticeable flaws in my appearance and created constant heartache and teasing, it also drove me to become physically and mentally stronger. It is safe to say it's still not easy for a child fighting cancer. Thirty years ago we were shunned and nobody acknowledged as it is today with bracelets and ribbons and support groups.
After the major let down with West Point, my focus was gone and I struggled to figure out what I wanted. To make things worse, I was about to be yanked from the school I was attending and worked so hard to stay in. Due to some family issues I was taken out, which made things much worse because now the comfort I had built in the environment I had been in and was gone and nothing felt right and I was more shy than ever. The only thing I had in my favor at this point was physically I had grown much bigger and stronger than most because I saw that least then some people would choose not to ridicule me.
I knew I had to get back in my previous school, so I set appointments with the headmaster of my old school and went in and tried to negotiate a way to work off tuition and come back. That didn't work, but I was determined to find a way because whatever momentum I had created so far at school would be taken away if I didn't stay on the path I was on and especially when my West Point dream already crippled me inside. Never in my life have I felt I deserve a handout or help and I will go to any end to do something without asking anyone for help. I had a best friend whose family truly felt like part of my family. I adored his whole family and looked up to his father, I even in ways felt a fatherly connection to him. I don't know how I got the nerve to do it but I set an appointment to meet with him at his business without his knowledge. I explained to him my thoughts and feelings and desire to try and succeed and what this all meant, and somehow got the courage to ask him for a loan to go back to my previous school. As I said I truly can't say enough kind things about my friend and his family, but his father agreed to help. We couldn't get me back in there but he managed to get me into a great military high school.
I graduated from there but became overwhelmed and lost in the fact nothing seemed to drive me like West Point did. September 11th 2001 was right around the corner and when it happened, like so many all I wanted was to be able to enlist and go fight. I tried every angle to get into any branch or service, but no matter my capabilities or my physical fitness or testing would overcome the disqualification that the cancer left me always facing. Although it had been a very long time since I had lived in NY, I still inside always thought of it as my true home because the earliest years of my life I remember the most of was the time I spent basically living in Mt. Sinai Hospital in New York.
I had no course or plan anymore and was somewhat lost, I did know I missed the north incredibly. So without any thought really I ended up picking up and moving to Baltimore MD. Baltimore is a time in my life I made some of the best friends I have ever known and my confidence was created and formed on so many levels even despite cancer as usual playing its part in destroying dreams. I want to say this, I was lucky and growing up our family was friends with Dr, Ben Carson at Johns Hopkins family.
One of the best things my Uncle ever had me do when I was a child, was read his book “Think Big” one summer that I was up in NY visiting my family when I was a child. Honestly I think it literally may have been the first real book I read at the time. I looked up to Dr. Carson and his struggle and his amazing achievements in medicine especially with pediatrics. Well I was able to go speak with him when I got to Baltimore and he informed us of a surgery to correct the lazy eye that we never had any idea about.
Following this surgery I for the first time had the confidence to look people in the eye and it altered me in a positive manner in so many ways. And that summer I found a wonderful Children's Cancer Camp up in Maryland that I was able to start volunteering as a counselor during the summer and it probably was the thing I cherished most that I had ever done. Yet job wise because of not continuing into college I worked about everything you can imagine….sales...restaurant...personal trainer...private security...internet business...armored truck driver/guard….kiosk business...club security.
But nothing meant anything to me until i found out i could get into firefighting. I was previously told I couldn't but now I was told I could. An as usual the big kicker, so at almost the very end of fire academy, I struggled to pass certain test because my mask couldn't seal and oxygen leaked heavily out my mask, this was because the flawed right temple indenting that was a result to undergrowth of parts of my skull from having surgery at 3 years of age as well as the heavy radiation during such an essential growth stage, so yet again my next dream squashed.
Thankfully, I did not have any major medical issues since my cancer 25 years earlier, but beginning in 2010 I began to have some odd medical symptoms. For a few months I was experiencing vertigo and migraines headaches that were increasing in intensity and frequency. One night in March 2010 my pain became so unbearable that I reluctantly decided to go to the ER. I had avoided getting checked out earlier because I had no health insurance. Furthermore, I knew that I could never have adequate coverage because, as a survivor of childhood cancer, I was a walking bundle of pre-existing conditions and thus uninsurable and unknowingly walking into the start of a medical debt that would cripple me.
An MRI of my brain was ordered and it was revealed a I had a dollar bill-sized acoustic neuroma tumor wrapped around several nerves on the right side of my face. Physicians said that the tumor was caused by radiation treatments that saved my life 25 years earlier. I was told that I needed to go to the University Center in Birmingham, Alabama ASAP, and I was scheduled for brain surgery within twelve hours. I underwent two extensive brain surgeries in the next few days.
To remove the tumor completely neurosurgeons had to sever my right facial, auditory, and optical nerves. Again, I survived but this time with more residual damage: 100% blindness and deafness on the right side of my face, as well as facial paralysis. Residual eye socket and eyelid closure problems gave me frequent and prolonged migraine headaches and intractable pain, leading to dozens of follow-up surgeries with no real relief. The inability of my eye socket to heal so that I could wear a prosthetic eye was due to my childhood cancer treatments that permanently damaged the tissue.
But I felt truly lucky…I had survived and I wanted to make sense of it all. It suddenly occurred to me that the dreams I had of serving in the army to protect our country were not gone; they were just changed. The battlefields had been altered. I realized that I could help in the fight against cancer and, more importantly, in the battle against childhood cancer. I decided that even though I had never gone to college, I would obtain my degree as a Radiation Therapist and specialize in treating pediatric oncology patients.
Months later when I was released from the hospital and supposed to be on six months of bed rest, I enrolled instead in general education classes in a local community college with the goal of completing the qualifications necessary for admission to an accredited radiation therapy program. So, unable to speak due to my surgeries and with half my face bandaged up, I started college for the first time in my life.
As terrified as I was about my ability to succeed in the classroom, I spent the next year laser-focused on my education and ended up finishing all the general education classes needed for a Radiation Therapy Program. Not only did I accomplish this first step, but I did it with a 4.0 GPA and National Honors. During that year I missed weeks and weeks of classes each semester, undergoing dozens of follow-up surgeries, all stemming from my two previous cancers.
Unfortunately only a few semesters in and less than a year out of the last brain surgery I lost my fiancé. At that point I ended up getting a service dog she was German shepherd who has become my everything. I decided then to focus on school and leave the thoughts of a relationship to the side until I finished school. From that point on, it was up to my dog and I until things were on the right path. Except as explained that only led to more and more health issues, thus 8 years later I’m still alone and now because I can’t stomach thinking anyone would want to be with me, nor would I want someone to face the battles I face along with me, it’s unfair in every aspect.
Unlike most Radiation Therapists, I’d have first-hand empathy and understanding for what these kids must face. I know how hard it is and how their life will be defined by this disease. Win or lose their life and their families lives are forever changed. My goal was to work in a children’s oncology unit and as I administer these radiation therapy treatments to these children I will devote my life to trying to make this process easier for them to handle, even if it’s the slightest bit, even if only one on one. From 2001 I spent thousands of hours volunteering my time at pediatric oncology camps throughout the country, and I personally went to these types of camps as a child. What a child who battles cancer goes through is beyond most people’s imagination, yet almost every kid I have ever met battling this demon we call cancer has the highest spirits out of most kids I know. And later on I had the opportunity to volunteer in a pediatric endoscopy ward.
Unfortunately my battle was still uphill and after a year into my radiation program and having a cover story written about me by the medical society that governed radiation therapy, I faced new threats. One of these was personal in nature and resulted in my leaving the program halfway through. There is no transferring of credit in a Radiation Program and to top it off I now owed thousands in loans that I didn’t have anything to show for.
If that wasn’t bad enough around the same I had been experiencing ADD (attention deficit disorder)-like symptoms and short term memory losses I had never had. I was passed around by doctors and psychologists saying nothing was wrong for nearly a year, until the breaking point when it became out of control. I had decided to take 5 classes I didn’t need just to stay in school while figuring out the next program and suddenly I couldn't finish one assignment.
The details are lengthy, but in short, after a long search I found someone who could clearly define and see a perfect storm had been created from my treatments, cancers, and meningitis that led to severe ADD and short-term memory losses. Then to make things worse, sudden and absolutely uncontrollable chronic fatigue, called cancer-related fatigue began. But this is another of many issues that is less known than the cancers that cause it, and it has crippled my life in every aspect. The ADD and fatigue caused me to spend over a year searching for answers and doing research because no one could or would help.
I'd never wish a future for anyone in this world to be a path like what I've experienced, but at times I wish the doctors, pharmacist, and psychiatrist could step into my shoes and experience it. I face scrutiny if I need medications because of everything I am facing, I don’t want meds, but I have no choice. I’d give anything to have answers and to be off all meds. My quality of life has dwindled to nonexistent, it seems.
I realize now I represent a class of young adults who have survived childhood cancer and who face the daunting prospect of having further medical problems arising out of past cancer treatments. People like myself would be relegated to a lifetime of virtually no meaningful health insurance coverage and would have to face the likelihood of huge debt for uninsurable medical expenses throughout our lives. This on top of lack of information and or research out there in regards to adults who survived these horrific childhood diseases are more or less alone because so few medical professionals no matter how specialized truly know how to help treat us as we age. I never in a million years would've thought our medical societies would basically turn there back on people like me but that's what the last few years of my life has become.
So following my recovery from the brain tumor, I had began having major issues with fatigue, and everyone believed it was due to all the procedures I had recently undergone and that it would go away as I move forward. Being only 28 at the time they believed this would subside, yet it continued to not so finally an Endocrinologist was willing to see me at UAB and they saw I had very low testosterone for a male but very low for someone of my age but because of the tumor and how young I was nobody wanted to do any kind of hormone treatments and quickly nobody was willing to do anything but say it would get better. Overtime it started getting worse and worse.
Then out of nowhere I started having short term memory issues and ADHD like symptoms which was very odd because I had never in my life had issues with these things. I tried to find someone to look at it but again I can't even begin to tell you the nightmare of finding specialist to look at me when I have no insurance then even worse I have such a complex medical history most people I found either didn't know anything about the stuff I was going through or they didn't want to be bothered. I was bounced around and seemingly left on my own, I begin realizing I had to become my own guide and learn everything as much as I could about treatments I had and find anything I could about others like myself or studies and research to get ideas that maybe would interest any of the medical staff who saw me.
After a year of being told there was nothing wrong and I didn't have attention problems I was medically pulled out of school and a gentleman named Dr. Bryson came into the picture and was able to put pieces of my puzzle together and figure out the perfect storm brewing in my head was a mix of the late effects of the radiation and chemo combined with the bacterial spinal meningitis on top of the brain surgeries causing all these issues.
As this was all going on the fatigue had been growing worse and worse, and nobody could figure out why. Everyone always tried to make it as if I was making it up, I know my body better than anyone else and I started feeling like the actual life was sucked out of me. No matter what I did it gradually grew to that and as much as I tried to fight it it got to where nothing I did could combat it.
As I sit here now I literally am fighting myself with this, one part of me is trying to make sure I tell you everything but the other is having an insane issue holding concentration to keep this together because I know I have sat here and said so much an more than anything I fear you may not have read everything and that would be my fault for how much I have written. So I am going to try and say the last bit and avoid filling everything in here, I have had no luck with the fatigue, I have seen Endo, Oncologist, GP and everyone is clueless, my test all show all my hormones are out of whack and low but basically because most of my stuff is none of the norm nobody knows what to do and since none of these Doctors really have much of a connection with me they don't do anything but try and point me to someone else.
I am now at the point that every day is a struggle to just make it through the day with my fatigue, I am beyond desperate, I am so scared because all I want is my life back, I just want to feel normal.
I don't wake up every day and with joy look into my mirror and see the gaping hole in my head, or hear my cell phone ring and walk in circles to find it because I can't identify which direction a sound comes from. I don't enjoy the fact that age 34 I'm already having short term memory loss, forgetting where I put things, Walking into the parking lot and having to go row by row because 20 minutes ago I went to the grocery store and then came out and couldn't remember where I parked.
I can't stand knowing in my head what I need to do and mapping it out but yet my body and mind allow me to go down ten other paths still. Or if I look at a screen to long or drive to far, I become almost catatonic. I can't stand the fact everyday no matter what sleep or medicine, I have some unexplained pain in the socket where my eye use to be, the socket that I'm forced to cover and spend my life wearing bandages on and dealing with the way people look at me and the comments.
How about the fact I can't eat or drink in front of anyone, because I'm embarrassed by the way I am forced to chew or I should say attempt to chew, or even smile for that. And to top it off I go from someone who spent two hours in a gym 6 days a week and trained in KRAV MAGA as well as school and attempting to create ways to earn income since all these things I have wrong heavily impact not only my quality of life but my livelihood.
Never in my life have I been a loner, yet now I avoid everyone, I don't want to be a burden with my constant issues and a black cloud of never ending medical nightmares, and even worse being told and treated like the things I'm now loving with are in my head. Not a day goes by I want nothing more than to be normal again, I once believed I could one day at least function like a normal person again. Instead I'm exhausted every second of my life, I spend more time hurting in places that people tell me I don't hurt, I'm told to do more activity because it helps energy, yet I struggle to have energy to function. we are on this planet once, everything I've lost as a human, the largest part of the population will never know or experience what that feels like.
Part of me is happy most people don't understand how I feel because Id never wish this on anyone, no matter friend or enemy. I truly believed my move to Birmingham would be the start of bringing my life back, a chance to feel good enough to go back to school, go to work, have friends, have a relationship, and obtain even the smallest bit of the quality of life we are all originally granted, and as I've told everyone from the start, I did and do pray that whatever is learned from my life, maybe at least one child is spared a life like this.
I've lost enough personally, see enough death amongst friends and or family to know how precious living is, but is it living if your quality of life is stripped down to this. I never have been suicidal nor will I ever. It's not in me, I fight to push forward everyday, no matter what comes, but my life and world has been dominated by a disease that controlled me for 34 of the 36 years I have spent on this earth, and we all know all too well the life expectancy of a childhood survivor is cut shorter already.
I just never thought whatever I have left would come to a life like this. I am in no way an angel or perfect, I've made mistakes and gone through good and bad times growing up, but every decision I made no matter good or bad do I regret because they all molded me to who I am, and the person I am is someone who wants to see people happy, wants a peaceful life for myself, and for anyone else, I don't have malice in my heart to anyone anymore, it's not worth it. I can't change my past, just like every other living creature walking this planet. But I can try to make sure everything I do is with good intentions and in hopes I can either experience some form of happiness or give that to someone else. I have never hated the cancer that destroyed so much of me, or the treatments that cured me at any cost. Because they to are so important in who I have become, but more importantly to the people I have had the chance to to know, the ones I'd never know without the cancer. It's made me stronger and enabled me to fight, even when I feel like curling up into a ball and accepting defeat.
It's ironic, modern medicine has destroyed nature's evolution, in the past the weak did not survive, in order to try and stop the genes or characteristics of a creature that made them weak, so the future offspring didn't carry it on. Yet our medicine now stops nature's plan and allows us to survive and have a fighting chance, even though nature itself is against us. If cancer is truly one of many weapons that nature use against us in battle, and that we encounter, throughout a lifetime which is our Never ending war to survive. Then with any war, we know fatalities and injury are inevitable. But so many of us like myself, refuse to accept nature's path, and we fight extinction.
The marvels of modern medicine are beyond amazing in many aspects, yet like everything else we know, are capable of flaws and uncertainty. Take radiation therapy for instance, cancer is one of the most evil things we know of on this planet. Well what do you need to stop or kill something that evil and hard to stop?? Something that's even capable of being classifieds as deadlier than the cancer right? Few things in existence that we can say undeniably are classified in this category. Radiation....The fallout from bombs which irradiated large areas of populations plague generations and affect every living organism for truthfully a time frame, we may never truly know. We strive to build weapons that harness this power to destroy in order to for good or bad reasons eliminate any form of life. So what better to fight cancer with, if cancer could wear rubber support bracelets, it would be that of awareness against radiation.
So we harness this extreme force and beam it directly into living beings, in order to destroy the cancer. Great idea....that's not me being sarcastic, it is truly a great idea. But the big picture is that you can't expect to take this substance that you basically hired as the ultimate killing machine to irradiate the cancer, not come with some unwanted effects effects and or casualties. You can't blame radiation for what it naturally does, we want it for that exact deadly trait.
So it comes down to a very simple question, if living life currently is more important than the road ahead which truly will have unknown ramifications to each and every organism that's treated with radiation. Guess what? Most people choose life, we only walk this planet once, so however long we can prolong it, it's our nature to do this. I for one obviously know this from experience, I would have died before the age of 3 if not for radiation, so no matter how many people ask me if I'm against it, my answer is now and will forever be no. I wouldn't have any future or life without it. Ironically that very treatment is what spawned a massive brain tumor in 2010. So what once defeated my cancer battle, brought that very enemy back in a second attempt to kill me, maybe again this is nature still trying to balance things out or foil any further transmission of genes it's defined as unworthy to survive.
I know I am rambling on here but I can't expect any other human to know exactly what my life is like because no matter how many characteristics any one one of us shares with another, we are all undeniably different and how we react to any situation or treatment varies more than we'll ever know and it's not something that's predictable because no treatment guarantees anything with 100 percent certainty. I can say the amount of radiation I received was higher and incapable of blocking or being able to be strictly defined, but this is in no way the fault of any radiation therapist or doctor, but simply the point we were in technology.
It doesn't help the situation when you have have to use this beam to blast into a tiny 2 year old skull, a skull that's trying to form and create, and grow. And no matter what the thought, there was no way to to refine that beam small enough to eliminate the tumor behind my right eye without irradiation of the entire head taking place. Today our treatments are amazingly more accurate, with the ability to deliver a beam that's size and depth is exact to each individual tumor. Thus minimizing the the harm done to healthy cells.
But my original point is still this, minimize is is the key, again we want a true killer of life to stop our enemy which is trying to kill us, by eliminating the cancer. As long as we want understand a huge truth, radiation isn't something that can truly be harnessed and controlled so well that we can use it for good and believe that same evil force won't share it's havoc with innocent cells in our body. But like so many choices about life, we we go to great extent to keep living if given the choice, as we should.
No matter what your belief is, we all are given the opportunity to live once upon this earth, so many take for granted so many things in our lives, because we were born with them. I don't want to be pitied or want handouts because of what my cards have dealt me in life. I never do or will consider my pains pains and losses to be more or or less than anyone else's, we all have battles throughout the war to survive life, sure some battles may be seem better better or worse.
But as I said, we are all so many very different, and the way we see or handle them, will vary on many aspects but in the end, they are all still the same fight to survive this life. I truly believe there so many others that face similar fights as I have, an that relate to my experience. Medical situations such as major illnesses are not anyone's choice, so it's unfair to be treated and viewed like less of a person because we need help medically with any form of treatment.
I may not have a medical degree but I've beyond put in my 10,000 hours studying and researching and understanding my disease and treatments as well as spent the larger portion of my life as a patient, plus I know my body better than anyone. So I will say that attending medical school doesn’t necessarily teach about things I'm facing or other patients and survivors experience. And when doctors say that it doesn't exist, they couldn't be more wrong. This was proven after the research doctors at Childrens Hospital confirmed all the issues I had been facing and that other doctors just disreguarded because of lack of research.
I have spent so many hours learning about the lack of research as I’ve battled my effects with seemingly no answers from our medical system, and seeing the giant loopholes I know now more than ever there is no excuse for the lack of answers. If we can so strongly support awareness overall now and in certain cancer prevention, one common area that’s important to every type of cancer that’s severely lacking is the survivors. And childhood cancer is the group that needs this the most, because every child who survives like myself, will face battles no matter how big or small medically for the rest of their lives and the further out past diagnosis and treatment they live, the less is known and less is done to help.
People who never face a battle with a disease can’t ever understand what it feels like, and that’s not meant in a derogatory way by any means, just a simple fact. The focus can’t just be on the person during treatment, the entire future from the moment they are cured is the most important time. Because the way we all handle the later effects of each type of treatment is the only way to improve the protocols for future patients and to understand and help those facing later effects.
Nothing is worse than seeing doctors and having them tell you nothing is wrong or you’re imagining it. They say this because from their medical knowledge that they learned or have experienced they haven't seen a reason that explains a sign or symptom. And that's in part to another major flaw is that even the research doctors and people who learn about the effects or changes in treatment fail to communicate with the medical system at large. Communication within the medical world is severely lacking and the quality of life of for patients is paying the price.
Now everything I have tried to do has finally reached the end, everything is caving in financially and I can't get a footing to get ahead, to get treatments to help me get back to work and school, and to actually have meaningful relationships of all levels and I feel as if my ability to fight has been extinguished. So as a last ditch effort, I am hoping somehow, some way, someone will believe in me and want to help me so I can go forward and pay it forward as well. I can’t even begin to get a footing to try and pay back normal bills, let alone major medical expenses, school debts, and so on. I have never looked for handouts and it kills me to be doing this but I can’t physically or mentally handle this anymore. I fight to get through every day and so little of my life is in my control anymore; my medical condition rules my life and holds me stuck in neutral, and my quality of life has become nothing. I want a chance to be able to devote every ounce of energy and time I have left in getting awareness out and finding true funding for research to help survivors do just that, SURVIVE.
And one thing I hope to achieve before it's to late is bringing to light the special type patch I had to create that's taken me thousands of tries with so many different variables to solve the needs of covering my right orbit over the years. These would be able to assist many variations of children's eye disease as well as many adult disorders or injuries.
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