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\n Hodgkin’s Lymphoma is defined as a type of lymphoma, a cancer in the lymphatic system; Hodgkin's disease causes the cells in the lymphatic system to abnormally reproduce, eventually making the body less able to fight infection. Steady enlargement of lymph glands, spleen, and other lymphatic tissue occurs.\n
For a 15-year-old kid taking one of life’s biggest first steps, passing from middle school to the great unknown of high school, the concept of Lymphoma was not an easy one to consume. 11 years removed, and my life changed for the better in every way, this is my story; a story of despair, a story of awakening, and a story of triumph.
A brisk autumn afternoon, the year is 1994. My mother and I were enjoying a traditional football game at one of my new school’s biggest rivals home field. She noticed something was not right on my neck, a swelling that seemed to be abnormally large. My mom, being the consummate worrier she is, got me in to see the family doctor immediately. A simple infection, we were told, the swelling would subside within a few days. See this is what your lymph nodes do; they absorb and fight off infections. In the process, it is very normal for them to swell up and down while battling the infection. After a week or so had passed without change, we went to see an ear, nose and throat specialist. During several visits, we heard everything from a blocked duct within my cheek, to a strange malignancy not allowing the node to drain. We tried everything from lemon drops to tiny camera probes to resolve the dilemma, all to no avail. At this point, I could feel the seriousness of the situation changing from the doctors and more importantly, my parents…this was something more. The next stop was Children’s Hospital. There I went through a series of tests up to an including a direct biopsy of the node, which if you’re not familiar with a biopsy is a giant needle stuck directly into the lump. Still, no evidence of what could be causing the swelling. Under these circumstances, there was no other choice, but to remove the lump all together.\n
Now I hate to sidetrack, but if you have ever been to\n Children’s Hospital, you know the patients there are not in for any routine checkup. So currently, I am mentally fighting a battle on three fronts. First, I am scared to death of what is wrong with me. The fact that no one could tell me what was going on was as terrifying of an experience as I can remember. To see it resonate in the faces of my mom and dad only highlighted the matter at hand. Secondly, I was the odd kid at school who’s always missing class for some mysterious reason. This behavior makes it tough to gain any peer support at this point in my life. Lastly, the feeling of disparity throughout the hospital brought me to tears virtually every night. As wonderful as most of the staff is there, they cannot hide the helplessness you can see in the children’s eyes.
So, I go under the knife and they remove the entire mass and begin to study its content under microscope. No conclusion is reached even still. So, as can be imagined, the stress of not knowing anything is taking its toll on my entire family. All of the positive energy that remained was beginning to slip away. Many months had passed since that autumn day and we know nothing more.\n
Finally, the mass was sent off to the U of M medial center in Ann Arbor for analyzation. After a week or so of complete mental breakdown we got the call. I remember the night as if it was last night. My mom was to too emotional to even take the call…could you blame her. My dad was on the phone for what seemed like a week, and when he hung it up, broke down to tears. The next few hours of my life were among the hardest I believe I could ever go through. When you see the strongest man you’ve ever known break down, you know this is critical.\n Stage 1A Hodgkin’s Lymphoma was the diagnosis. In a matter of seconds, cancer went from being a word I didn’t even understand…only feared, to something that was very real, and threatened to take my life away and leave my family in ruin. At that very moment, through all my fears and sadness, seeing the way it tore through my family, I made a promise to myself to never again see them this way. I had no idea what was to come or how it would end, but I knew I was going to give it one hell of a fight.
Over the next few weeks I went through more tests and scans than I care to remember, up to and including a bone marrow biopsy. My dad describes this as one of the worst experience he’s ever seen in his life. I became a regular at the hospital and started to come to terms with what was really going on. It’s at this point that I met one of the greatest heroes in my life. A doctor in the Oncology/Hematology department of\n Children’s Hospital named\n Jeffery Taub. As it turns out, he was stricken with the same Lymphoma, and at the same exact age as me. He is a man who has devoted his life to helping kids in our special fraternity and making sure they get everything they need in their specific battles. In addition, he heads up the research on this disease and is the main benefactor of our golf outing’s donation. Most importantly, however, he looks and treats you as if you were a small piece of him. Because of his special case, he can personally feel and relate to your pain and fear. Other staff members made great impacts on me, but none to the level of Dr. Taub. He truly gave me reason to believe there was life beyond this.\n
The next turn in my journey was becoming educated about the disease, what kind of treatments were available, and what to expect in the coming months. Since I was diagnosed with Stage 1A, which is, the lowest of low grades of the disease, I was highly treatable with a very good chance of being cured. Chemotherapy was not necessary since the tests revealed it was isolated to the one node. However, I would require 4 weeks of radiation. Therefore, we went to see the radiologist, who was not located within the walls of Children’s Hospital the significance of which I will explain later. I was fitted and tattooed (three dots across my neck and chest which are still very visible today) for my lead blocks. The lead blocks kept the highly dangerous radiation waves from penetrating any part of my body other than the afflicted area. So from there, 5 days a week, my mom and I went down to the hospital and we waited in the hall playing checkers until it was time to go in and taste a small piece of hell. Since this was not a children’s hospital, after I was called into the radiation waiting area, my mom could not follow. I put on my hospital gown each day and sat in this room with a dozen or so male terminal cancer patients ranging anywhere from 50-60 years older than myself. Most of time they wouldn’t say a word to me, just give an eerie look, when they did make conversation, it was not pleasant as you can imagine. I could definitely feel myself getting mentally tougher throughout this process. When it was finally time to go under the machine and they cleared the room of all life, the worst part began. I was zapped off and on for 15 minutes by this loud sound and I could literally taste my flesh burning at times. I got increasingly ill each day and couldn’t even get out a bed or taste anything by the final week. Try to imagine having the flu or food poisoning for over a month straight. Vomiting, cold sweats, and a general lack of any type of energy were all part of my daily routine. To this day, I will never taste anything the same way from the permanent radiation damage to my taste buds. By this time, my entire school was informed of what was going on. Teachers and students alike were sending their sympathies and get well soon cards. I ended up missing over a month of school but worked diligently not to fall behind to the point of having to repeat the grade. This is the truly amazing part, the semester I was out, I achieved my highest grade point of my entire four-year high school career. Winning this small battle, gave me hope that there really was light at the end of the tunnel in my fight against cancer.
After about a two-month recovery from the radiation treatment I started to feel normal again. I was back at school and going down to see Dr. Taub on a weekly basis for blood tests and other exams. I was officially in remission from the disease, which is basically a 5-year period in which you are highly susceptible to a reoccurrence of the disease. As the weeks turned to months, and months turned to years, the visits and tests diminished in number and duration. Then, one bright sun shiny day in the summer of 2000, that 5-year mark came and went, and I became an official Cancer Survivor. My battle with the disease was over, but a new fight was just beginning. I still go down to the hospital (with my Mom) for a yearly exam with Dr. Taub, and while I do get a few funny looks about being the biggest kid on the block, I could really care less. I consider myself an inspiration to all those kids that see me down there now and it warms my heart to know that my presence gives each of them a small piece of hope to keep their spirits high. If and when the opportunity presents itself, I talk with some the patients and their families about going through what I did. It’s impossible to describe the relief to see on their faces to know they’re not alone.
It had been a long and winding struggle, but at the end of the day, my family and I were still standing. We had beaten the disease that I once feared, did not understand, and now have the utmost respect for. There are things that happen to a boy/man during the course of his life that shape who he is and what he can become. For me, this was the biggest moment of my life. I have a much greater appreciation for my life and the life around me. I have a much larger awareness of what this disease can do to, not only the one it infects, but those around you as well. More than anything else, I will never forget the many faces of this terrible disease. The faces of the patients who suffer, the faces of the families who love them, the faces of the wonderful medical staff who devote their lives to making a difference. It’s these faces that I will never put out of my mind and serve as my incentive to fight on.
This leads us to my gift.\n Justin’s Gift Golf Outing is not about me, or what I’ve been through, or even raising money for a good cause. This outing is about giving hope where there is despair, it is about helping other kids just like me and their families’ deal with the pain and suffering this disease brings. This outing is about my promise to one day never see my family or any other family go through that dire night again. This outing is about the faces and what it will take to see them come full circle. Most importantly, Justin’s Gift is about second chances at life. I was given that chance, and as my gift, I will not give up until I can give that gift back in return.
There are so many people I owe a lifelong debt of gratitude to for helping me through this time in my life that I could go on for days. However, a few special people will always hold a spot close to my heart for their efforts during this time. Obviously my mom, for always being concerned, it was because of her that we caught the disease so early and I love her dearly. My dad, for being the sail that kept the family afloat at its hour of greatest peril. He has and always will be my inspiration as a man. My brothers and sister, who may have been too young at the time to truly understand, but gave their undying love and support to me at all times. My late Grandmother, whom I lost to a similar disease a few years later, showed me what unconditional love was all about. I really do miss her. To my other grandparents, who each in their own special way have made a great impact on who I am today. To my godmother, she has been like an extra spine to me in some tough times. Last, but certainly not least, I want to thank Jeffrey Taub, my doctor. He has truly made a difference, not only in my life, but also in so many others that it would take a lifetime to ever pay him back. I just want you all to know that without people like you sharing your gifts for the world, gifts like mine wouldn’t be possible.
My wish in writing this account is that you will join me now, in whatever small way you can, in giving someone like the 15-year-old kid in this story, a real reason to believe.\n
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