All I ever wanted was a healthy child. Justin seemed to be the healthiest of all the nieces and nephews. He had the heartiest appetite, loved sports even as a toddler, and he was even referred to as the “bruiser.” He was such an easy baby. His laid back demeanor, and his warm smile could warm up anyone’s heart.
Although he was doing well in his last year of preschool and was his usual cheerful self, I noticed some changes that really bothered me. He started to have random vomiting throughout the summer of 2004. My husband and I thought it could possibly be food allergies, reflux, or a virus of some sort, so we didn’t worry too much at first. But, then we started to notice a change in Justin’s personality. At times Justin seemed irritable; his eyes clouded and at times Justin even seemed easily worn out. It wasn’t till one day on the Jersey Shore, that I remember and can never forget, my sister saying, “Justin doesn’t seem right.” I realized that she was seeing something I could not.
On August 17, 2004, I waited with Justin and his sister Jenna Marie, who was only four months old at the time, for the radiologist tech to say we could leave after Justin had his CAT scan. The pediatrician had ordered this CAT scan because he felt he couldn’t figure out why Justin had been vomiting for so many weeks. It was honestly the pediatrician’s last resort.
Little did any of us know or could we have ever been prepared for the results of that CAT scan. The results would lead to our family’s greatest challenge. We were told to wait in the lobby because the pediatrician would have to call me. When the call came in, the lady behind the desk called out my name. The kids and I walked up to her. On the other end, Dr. Fox asked, “Are you alone?” I answered, “Yes, why?” I remember feeling nervous, anxious, and irritable. I was in no mood to have someone beat around the bush with me. It was at that point Dr. Fox shared with me the news that Justin had a growth in his brain, and that he would probably need surgery. I told him I would call my husband and that we would get back with him. I wanted to cry, scream, fall to the ground, and plead for mercy. I remember feeling like life was standing still, but the world was going on around me. I remember looking down at Justin and saying, “Okay, I have to call Daddy.” My body felt hot. I was scared beyond belief. But, somehow I managed to keep my composure.
On August 25, Justin, then five years old, was admitted to Children’s National Medical Center in Washington, D.C. It was then they diagnosed him with a brain tumor. Two days later, he endured six hours of brain surgery. The neurosurgeon, Dr. Derek Bruce, successfully extracted his brain tumor; which was located in the 4th ventricle, resting on Justin’s brain stem. It was about the size of a small egg. How could this get any worse? The pain on his face was unbearable. But, it did get worse. The following day we were told the tumor was a malignant, stage 4, ependymoma brain tumor. We were told that the type of tumor Justin had would not respond to chemotherapy but that it would respond to radiation.
Fortunately, we were friends with the mother of one of Justin’s preschool classmates. Her father is renowned in the neurology world. They knew we needed guidance and support, and that we were stuck. Thanks to her father, she introduced us to a type of radiation we might otherwise not have known about–proton beam radiation. We weren’t told about this treatment. We had only heard about intensity modulated radiation therapy (IMRT). We looked into both options. We found out the advantages of what proton beam vs. IMRT were. Proton beam radiation delivers the optimal dose of radiation to the tumor target volume and minimal or no radiation to normal tissues and organs. As with the IMRT radiation, there would still be an exit beam hitting healthy parts of Justin’s brain.
Figuring proton beam therapy would be the way we would want to go, we decided that getting proton beam therapy at Massachusetts General Hospital in Boston would be the route we would take. Now all we had to do was wait to see if he would be accepted into Massachusetts General Hospital. Our insurance would have to cover the treatment. But, where would we stay for the almost two months? What about the commute between Northern Virginia and Boston? How could my husband continue to work and help care for our sick son and our four month old baby?
While we were waiting to hear from Massachusetts General, we kept busy by going to doctor, occupational therapy, and physical therapy appointments at Children’s National Medical Center. Justin had to learn how to walk all over again. His gross and fine motor skills were affected by the surgery. But within a few weeks, the staff at the hospital helped Justin walk without a walker. By late September 2004, we received the news from Massachusetts General Hospital that Justin would be accepted into the proton beam therapy protocol, assuming he could tolerate his treatments without anesthesia. The facility did not have any available slots for pediatric patients that needed anesthesia. We took our chances and expressed to Justin the importance of not moving during his upcoming treatments. Perhaps we were expecting a lot out of Justin. We just knew in our hearts that we wanted him to have proton beam therapy. So, we told our very supportive family and friends the great news. We made arrangements to stay at a hotel close to the hospital, and then we packed our bags. People are amazing during times of need. We received food from strangers, notes of kindness, and there were endless amounts of emotional and financial help. My husband’s coworker threw Justin a going away party. All the love humbled us.
On October 17th, we left for Boston. Two days later, he started treatment. Fortunately, the side effects were minimal. He was a bit fatigued, and his appetite was lessened, but overall, he seemed like the strong five-year-old we so adored. The treatment was interrupted with visits from Virginia and Louisiana relatives, almost daily trips to the mall, the circus, and even a Red Sox game. We tried to put as much fun and normalcy into Justin’s treatment.
On December 1, 2004, Justin had his last treatment–two short of what the new protocol recommended. We had decided the risks did not outweigh the benefits (for example, paralysis), as he already had 31 treatments rather than the normal 30. And by this time, after approximately six weeks of treatment, Justin was a little paler and skinnier, and his balance seemed more out of kilter.
We thanked our team of outstanding doctors, nurses, technicians, social worker, and school tutor, and we packed our bags and headed home in time for Christmas. It was bittersweet. On one hand, he was done with treatment; on the other hand, we were no longer actively doing anything to make sure the cancer would not return. Two years and three months have passed since treatment ended. It seems so long ago but the nervousness and anxiousness seems like yesterday. We still have reminders of how our lives have changed since Justin’s surgery, diagnosis, and proton beam treatment.
At the beginning of this year, we opted to have both of Justin’s eyes realigned. The brain surgery had left his eyes a bit cross-eyed and left him with double vision. That surgery was a success, but he will need to endure yet another surgery to bring down his left eye.
As Justin grows and becomes more aware of himself and the world around him, he is now beginning to ask questions about what he went through and what that means for his future health. “Where did I have my melon removed? Didn’t I have it removed in Boston, not DC? Are my eyes going to get better?” Furthermore, Justin is aware that he is slower than other kids because of his brain surgery.
The year following treatment, the Mid-Atlantic Chapter of Make a Wish Foundation granted Justin his wish for him and his family, and even his cousin, Jake, to take a Disney cruise. Approximately a year after his diagnosis, we were on our best family vacation ever. There was never a cloud in the sky, the weather was impeccable, and the cruise was amazing. It definitely put the finishing touch on our hardest year ever as a family. As a parent of a brain tumor child, that’s all we want for our kids–never a black cloud overhead and smooth sailing for eternity.
There is normalcy to life now, but we can never forget that long and dreadful time. Quarterly MRIs and visits to the oncology clinic are reminders of how everything could change, just like that. Statistically, there is always a chance his cancer can return. Every day I count my blessings and pray daily that he is forever healed.
To all that are met with this same challenge, my heart aches for you and your child. We have all learned empathy the hard way. But, somehow we know that we can all relate, and there is a special camaraderie amongst us. My wish for you, my prayer for you is that you find the strength to lean on the kindness of loved ones and strangers when you are weak, that you have the courage to let you and your child be scared, and that you embrace the unimaginable power of hope and love.
Written by Michelle Antonio-Martin
This story was written for the Childhood Brain Tumor Foundation, Germantown, MD
Dash: The Big Dog of Superheroes