Category: Guest Blog

This is MY Treatment

It is difficult to imagine who I would be today without cancer. The carefree teenager I was when diagnosed quickly learned to navigate the waters on the edge of life and death. Everything before cancer was easy: sports were easy; studying was easy; family, friendships, and relationships were easy. Life was easy. Even taking a breath was easy and required no thought or effort. Cancer and its treatment, for me, required ease to become a conscious effort.

In 1994, the year I turned 16, radiation destroyed my Hodgkin’s Lymphoma. Now, as a 41-year-old male, I don’t have to worry about Hodgkin’s anymore. At this point, I worry about tumors and damage caused by my treatments.

While radiation destroyed my cancer, it destroyed other parts of my body as well. Some effects were immediate, while others took, and continue to take time to develop.

During treatments, I had the “common” side effects of radiation. My skin was burned in places, and the smell of dead and dying skin will never leave my memory. My mouth, esophagus, stomach, and colon all were burned, scarred, and eventually developed sores and ulcers. My lungs are scarred, my thyroid is destroyed, along with my spleen. My spinal cord accidentally received too much radiation in one part which caused me to have some short-term side effects (L’Hermitte’s sign), and longer-term ones where my nervous system just doesn’t always relay information the way it should.

Even though 25 years have passed since my treatment, the side effects are still with me. Having no thyroid requires a daily dose of medication; the lack of a functioning spleen means I catch most of what I am exposed to, especially with young kids in school: colds, the flu, stomach bugs, pneumonia, and active tuberculosis are but a few on the list of diseases I have “caught.” My heart and cardiac system are checked often to make sure my heart valves continue to work properly. There already have been some cardiac scares, and there are some electrical conductivity problems that have manifested themselves. The problem, however, is that there is no simple answer as to if and how the radiation caused this. Some doctors are convinced, others are unconvinced and many of my ailments remain unexplained.

I have to conduct self-breast exams, as well as testicular exams, and lymph node explorations. I have to examine my body for any lumps, bumps, or anything else out of the ordinary. No matter how far I have come since my last day of radiation therapy, it takes a millisecond to be thrust back in that doctor’s office where I first received my diagnosis. The fear can be suppressed, but I have still not been able to make peace with it. Nor have I been able to make peace with the fatigue that can take over my life. It comes and goes and has become my “common” side effect. The long-term effects are evident in the multiple secondary cancer scares I have had: testicular cancer, thyroid cancer, skin cancer, leukemia, lymphoma relapse, and lung cancer. All require testing, further testing, monitoring, or treatment for it being something else. 

I am alive thanks to radiation and I am destined to forever worry about the consequences of my treatment. I am one of the few very lucky ones. Neither my cancer nor my treatment killed me. But there is a price to be paid. I am always reminded in subtle, and not-so-subtle ways that I survived and should, therefore, not complain. Maybe it was the time when I was treated, but having cancer was something you shouldn’t talk about, especially if you survived; I somehow became convinced that my silence equated gratitude, and my silence was the price I paid to be kept safe from the effects of my treatment.

Both cancer and my treatment continue to have lasting effects on my physical and mental wellbeing. I have had my peaks and my valleys; I have collapsed while throwing up blood from the bleeding ulcers in my stomach, and I have crossed the finish line after a marathon. I can be scared, and I can be brave. I can dread the future, and I can be hopeful for the same. There is no such thing as a carefree life, although I will continue to seek out those moments where life seems perfect and I am free, if for a second, of fear. It is in those moments where I find the courage to keep going, take the dose Synthroid, submit to another scan, have more bloodwork done, breathe and wait for the results to come.

I am a son, a brother, the husband to a beautiful wife, and the father of three beautiful children, I am a survivor who hopes that we can find better ways to treat pediatric cancers.

A Friend, A Wreath, and HOPE

I’ll never forget it.

I think it was a Saturday and Cannon was unexpectedly admitted to the hospital. I called Melissa to ask if she wanted visitors and she kindly declined as there was still testing to be done. We kept in contact and several days later: the unthinkable.

Neuroblastoma.

A type of childhood cancer. How can this be?? This young mother had just moved from Scotland, married a wonderful man, had Cannon and was 9 months pregnant with twins. All in a span of 3-4 years. Now this? 

After the shock wore off, Michael and Melissa went into warrior mode. They found the best treatment for Cannon, traveling all over the country. Friends in Orlando did what we could to support the family. Cannon’s older sister, Olivia, became like a family member to us; we love her dearly.

We all wanted to support Cannon and the Wiggins family in their fight against pediatric cancer, but many of us weren’t sure how. Then in 2014, Michael and Melissa founded Cannonball Kids’ cancer (CKc) Foundation to fund pediatric cancer research.

My family’s way of honoring Cannon was through the purchase of a CKc wreath that was being sold on social media. I vowed that this wreath would be outside our door until Cannon hit the momentous five-year mark of being cancer-free. The wreath has only been taken down during Christmas when our Christmas wreath watches over CKc’s special place in our home during the holidays. This round object with its ribbons and gold glitter has so much meaning. It represents the fight of a little boy whose parents never gave up hope. It represents a community coming together to help a family in need. It represents all children suffering from horrendous childhood cancers. And, at the same time, it represents HOPE. Hope that someday these terrible diseases and these family’s sufferings may be eradicated.  

May 20, 2019 will be a celebratory day! It is the day our CKc wreath comes down in honor of Cannon being cancer-free for five years!!! I will miss seeing Cannon’s wreath and all that is represents, however I will be filled with joy and thanking our Lord for watching over our little fighter!”

Why I Must Be An Advocate for Change and Education

I had the pleasure of representing Cannonball Kids’ cancer (CKc) on Saturday, September 15th, at the first-ever Golden Warrior Festival in Apopka, Florida. This wonderful event was created to raise awareness of childhood cancer, and to beautifully recognize the brave warriors currently battling various childhood cancers in their community.

Day after day, these brave children face things that no child should ever have to know. They routinely undergo treatment that is unfortunately not able to be tailored to their specific illness, and they face the harsh side effects of medications designed to eradicate cancer in an adult many times their size. As I watched these extraordinary children experience each activity that was planned for them, they were so grateful, and so full of joy despite all they continue to face. It was truly such a blessing to witness them be able to simply be children, to see them smile for photos with their favorite superhero or Disney princess, to have their face painted, to enjoy cotton candy or a snow cone, and truly enjoy time spent with their families – I am absolutely in awe of these amazing children and the love and support of their families.

The coming together of this community to provide education on childhood cancer, and to rally around these amazing warriors was truly something to witness. In one afternoon, hundreds of eyes were instantly opened to the harsh realities of childhood cancer, and the dire need for change. All in attendance were able to see firsthand that that most unfortunately, childhood cancer is not rare. It does not pick and choose, it does not discriminate, and it continues to deliver devastating diagnoses on a daily basis. It takes events like this, foundations like CKc, and people who are driven to change the status quo, to make a difference. Being able to share CKc’s mission and accomplishments with members of this community, specifically the goal to create options together, when no more options are available, was incredible.  

This event had such personal meaning to me, as our family was not given the option to fight cancer. After our son Maxwell passed, we learned that he silently battled neuroblastoma in the three months we were blessed to share with him. There is no doubt in my mind that if we were blessed to have Maxwell with us much longer than we were, we would have fought as hard as we possibly could for him to beat this horrible disease.

While we truly feel in our heart that there is no blame, often hindsight is 20/20, and we can now look back and see that Maxwell exhibited some symptoms that would indicate the presence of neuroblastoma. It is understandable that physicians often times avoid immediately linking these symptoms to a possible cancer, because it would cause panic to the family and oftentimes there is no cause for concern. In our case, Maxwell had a protruding stomach – it was almost barrel-like. It was never identified as a potential issue; instead we were praised for our evident success in his feeding. Babies do not have developed abdominal muscles, so a large amount of babies do have large bellies. Maxwell also would sweat profusely. When we pointed this out, our concern was dissuaded, we were thankful when the concern was simplified to explain that sometimes babies just sweat, and it does not mean that there is an underlying issue. Only in hindsight can we identify the need for education on the telltale symptoms of neuroblastoma – and, just like any other disease, it is always better to be safe in ruling out this disease than not, as we will forever wonder what may have been if we were able to identify it, and fight, in an effort to save Maxwell’s life. Instead what started as a high fever weeks later led to an emergency room visit and discharge with a diagnosis of a ‘virus’ only to lose our son less than 48 hours later. Our family is forever changed and living daily with the devastating reality that our son is with God, instead of in our arms.

The never-ceasing love of a Mother for their child makes all things possible, and was what gave me the strength to represent CKc for this event. My heart went out to each warrior family that I had the privilege to meet, and as they shared their child’s stories with me, I was able to share Maxwell’s story with them, and explain how much CKc has come to mean to me. Our lives have been forever changed because of pediatric cancer, and now the fight is mine to continue for my son. Maxwell is my “why” – what drives me to volunteer for this extraordinary organization. I must be his voice; I must be an advocate for change and education. I know that I have found the perfect place in CKc to do these things and so, so much more. The Golden Warrior Festival was a huge success, and CKc was recognized for its help making such a wonderful event a reality. The positive feedback we received, the sincere interest in what we do, the individuals and families asking what they can do to join the fight, and the pride that I felt representing CKc for this event, was immeasurable. It truly was an experience that I will never forget. I did it – and you absolutely can, too!

CANNONBALL KIDS' CANCER FOUNDATION,
POST OFFICE BOX 547797
ORLANDO, FL 32854
(321) 325-5392
INFO@CANNONBALLKIDSCANCER.ORG

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