I clearly remember the day I got the news I had Von Hippel Lindau (VHL). Both my brother Josh and I were both diagnosed with this disorder when the genetic testing came back. I was six years old and Josh was ten. We were both far too young to understand what it meant, but we would soon learn how it would change our lives. Though, we eventually found that the real journey for both of us started later in life — when it really started to affect us. As kids, we had no clue what that meant for us, as it turned out, the rough road ahead was just the beginning.<\/span><\/div>\n
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We both faced hard situations and have overcome different types of cancer and many surgeries. Dad was a big influence in both of our lives. Seeing him go through all those dangerous surgeries, year after year, gave us the fighting attitude we needed to get by in a life like ours. Unfortunately, that didn\u2019t really make it any easier.<\/span><\/div>\n
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I\u2019m not sure what a \u201cnormal\u2019 childhood looks like, but my entire youth revolved around seeing my father go in and out of hospitals. His life was basically one surgery after another. His will to fight was unbelievable. Seeing him go through all of what he had to face in his life was inspirational. He basically raised two kids by himself, needing to play both the mother and father roles, and had to overcome all these health issues at the same time. He was a good man and a great father. He helped me out all the way until the day he passed away in 2016. <\/span><\/div>\n\n<\/div>\n
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My father was a perfect example of how a parent should be. He loved us unconditionally and would go to the ends of the earth for us if we needed it. He gave his life to raise his two sons, though as it turned out, he actually ended up dying twice. The first time he died, he was on an operating table. He claimed to have seen Jesus, of whom he asked to stay alive to take care of his kids. He said he remembered floating above his body, and that he could hear the doctors on the other side of the room discussing his case. Fortunately, resuscitation worked and they were able to revive him.<\/span><\/div>\n
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I spent most of my 20s, and these first three years of my 30s, in and out of hospitals. It all began with that genetic test when I was six. That test confirmed that I had this rare and disabling disease. The disease started to manifest when I was ten. My first experience was having a laser surgery to remove a tumor from my eye. My first major surgery was a lumbar surgery to remove a tumor from the spinal cord when I was eighteen. My dad accompanied me on most of my surgeries, including these two, and helped me recover from all of them.<\/span><\/div>\n
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During the time of my first spine surgery, Dr. Russel Lonser was the head neurosurgeon at the NIH. As it turned out, this spine surgery would be both very intensive and difficult, mainly due to the location, and how it needed to be done – and Dr. Lonser performed it. <\/span><\/div>\n\n<\/div>\n
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According to the doctor, he had to split my spinal cord in half since the tumor had been wrapped around the cord. Before the surgery, this started causing issues in the form of the right side of my stomach starting to go numb, and an unbearable amount of back pain. <\/span><\/div>\n
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The surgery to remove the tumor was a success, however I woke up with ataxia in both of my legs and each hand. Ataxia basically means that one is not able to control their extremities properly. Mine was accompanied by sensation\/temperature issues, and back pain which has continually increased to this day. I still suffer from side effects from this surgery. This was also the first time I had to re-learn how to walk (it would not be the last), and it still affects my balance to this day. <\/span><\/div>\n
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During the time before my first back surgery, and after, I was working at KISW with Ricker. Ricker was 99.9 FM KISW\u2019s afternoon disc jockey for the greater Seattle area. I was basically his intern, and if it wasn\u2019t for radio and being in the music industry, and around the music I loved, I don\u2019t think I would have gotten through the things that I did. Ricker has been a big influence on my life and loyal friend to this day. I have always been lucky to have a good bunch of friends, and especially my brother, who all helped me out a lot.<\/span><\/div>\n
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The next decade would be full of surgeries. All in all, my current count for surgeries is something like this: four kidney, three partial adrenal gland, three cervical, two lumbar, and one brain surgery. While many people with this disease have it worse, it\u2019s been pretty bad for me.<\/span><\/div>\n\n
A month before my 30th birthday, around mid-June, my dad had successful brain surgery. A week after this surgery, his doctors were getting ready to discharge him — which meant he needed to resume the blood thinners required to keep his transplanted kidney alive. This is when things went south. He was having intense headaches and talking\/acting very strange the night before things went wrong. He had a massive stroke that affected the entire right hemisphere of his brain. <\/span><\/div>\n\n
The next few weeks he was on life support. At first there were good signs of him achieving a full recovery, but unfortunately, things did not improve at all. His recovery had basically plateaued, and he was unable to get back to where he started before the stroke. This was in mid-July of that year, and he was showing no signs of getting better. My brother and I had to make the decision to follow his wishes and take him off of life support. <\/span><\/div>\n\n
We removed life support and he passed away mid-morning of the 23<\/span>rd<\/span><\/span>. He was cremated three days later on my 30th birthday. He had been through so many surgeries just fine, and he had always recovered, so his passing was a shock to me. My life was forever changed and I would never have a chance to talk with him again.<\/span><\/div>\n\n
After he was cremated, and we had flown back to Washington state, we had a celebration of life BBQ for him. We weren\u2019t sure what to do for a memorial, but we chose a park he loved and an activity that he did as long as we could remember. It was really nice to see all of our friends (dad\u2019s, mine, and Joshua\u2019s) come out to support us and remember him.<\/span><\/div>\n\n
At the time, I was living in Renton in the same apartment I shared with dad. It became too much for me to deal with over the next six months. Being in that apartment led me to panic attacks, nightmares, severe depression, and constant feelings of guilt. I felt like I should have done more, and that maybe if I had, the outcome would have been different.<\/span><\/div>\n\n
To this day I still feel bad because I did not spend much time with him after he had surgery. I was working on the East coast at the same time that we went there for his operation. I was doing overnights — trying to keep my job while juggling being there for him. I feel like if I had paid closer attention to things with him, maybe I could have prevented something. I know realistically that I couldn\u2019t have changed anything. Part of the grieving process is guilt, and I definitely felt that stage very clearly.<\/span><\/div>\n\n
After my dad passed away I went back to the place where we were living and stayed for another six months. During this time I went back to work and suffered through daily and constant increasingly bad back pain until needed another back surgery, of which left me disabled and taking long term disability. I was eventually at my breaking point and had to get out of the place that had so many memories. I soon moved to Silverdale, in with my girlfriend and her son, and found that the next 2 years were a shit show health-wise. <\/span><\/div>\n\n
I was dealing with hormonal imbalance, having a brain tumor slowly grow – which was affecting me in ways I did not know. On top of that, I was experiencing pheochromocytoma symptoms, which mess with your body\u2019s chemicals. That tumor was causing anxiety — which lead to panic attacks, high heart rate, and night sweats. I ended up having the kidney surgery first, because that was a requirement before the doctors felt secure enough to perform brain surgery. This was all done in the span of two months. It was very stressful not knowing if I would be alive in a few months. Then, even after all of this, things started to get really bad. <\/span><\/div>\n\n
One of the tumors in my brain or spine area was causing me terrible symptoms. <\/span><\/div>\n\n
Unfortunately, there were so many tumors that could be the culprit, one of the NIH doctors actually told me that picking one to remove would essentially be gambling with my life. There was no way to know which tumor was causing all of the issues I was having at the time. Thankfully, there was a clinical trial that one of my doctors suggested I try. I ended up moving out of Silverdale, but before so, I got on the clinical trial for an experimental drug called PT2977, and that has brought me new hope. Thankfully, I can say that this trial has done good things for me already.<\/span><\/div>\n\n
Getting on this drug trial was a task in of itself. The head Urology\/Oncology doctor at the NIH, W. Marston Linehan, M.D. had tried to convince me to get on a phase one trial for this drug, but I resisted. When it made it to stage two, I kept on bugging the NIH to join, and eventually I was successful. The second stage finally closed because it reached the state where the formulation needed to get reworked.<\/span><\/div>\n\n
I\u2019m very lucky to have been accepted into this study and that easy was truly a blessing. I think my dad was looking out for me from above. For the first time in my life, I find myself looking forward to what the future holds for me. This was particularly great for me because I know for a fact people have judged me for my health disorder, and I couldn\u2019t get a good job because of it. I have been spoken to negatively because my health didn\u2019t live up to their standards. All of this added up and I have dealt with depression, and continue to have a hard time coping with things. However, currently, things seem to have gotten a little bit better, and I have hope for the first time after getting on my drug trial. It really helps that I have always had a good support system in my life. <\/span><\/div>\n\n
My dad was really my main support system, and we both lived together while helping each other out. It was a good thing for both of us. That life for us was really different from now. The emptiness I felt inside not having a dad around was like being consumed with cancer all over again. Losing a parent changes you, and you don\u2019t really know how until it\u2019s too late. The grief just eats away, and I don\u2019t think it ever goes away — but it does get better with time. Even still, I have moments where I cry out of nowhere when something reminds me of my dad.<\/span><\/div>\n\n
One very important thing I learned, and it took me awhile: like dad would always say – girlfriends\/boyfriends\/wifes come and go, but family is always going to be there for you. My brother has been good support for me as well, and we have been through a lot together. He\u2019s a good guy and he deals with all this bullshit too. I find myself having hope, for the first time, that we both can enjoy the rest of our lives healthily in peace.<\/span><\/div>\n\n
I guess my entire reason for writing this is to get people to see my perspective on life and tell a bit of my story. The takeaway I would like for people to get from everything I\u2019ve shared is that life is short — so don\u2019t sweat the small stuff, and enjoy it to the fullest. I spent the majority of my life fearing the weight of VHL will eventually crush me, but thanks to this drug trial, not only do the rest of my fellow VHL patients have a glimmer of hope, so do I. The more time you waste, the less time you have to live. I have known too many people who tend to dwell in the past and it consumes them. Forget all the petty stuff and focus on what matters: your family and the ones you love.<\/span><\/div>\n
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