“Maybe you have to know the darkness before you can appreciate the light.”
Driving on the 110 freeway through downtown Los Angeles during morning commute has to be one of my least favorite drives on the planet. People do this torture everyday. God help them and their blood pressure. I once declared to my children, as we were stuck in LA traffic, that they can move anywhere in the country and I would be happy to fly and visit them anytime, but never EVER move to the other side of Los Angeles County. They would get more visits from me if they moved across the country than 20 miles away! Perhaps in their minds this would be a good plan. Today’s traffic was no exception. It took 1 hour and 45 minutes to travel 30 miles. Yet, I would have sat in my car twice as long to travel half as far to hear the news we received today.
Our first 30 mile drive to Children’s Hospital Los Angeles occurred mid February 2004. Our second born son, Dylan, had been diagnosed with Neuroblastoma that Valentine’s Day. He was ten months old. The hospital he had been admitted to had wanted to treat the cancer with chemotherapy and radiation. Doctors felt that the tumor was too closely located near his spine to operate. In addition to his cancer diagnosis, he had presented with severe neurologic symptoms that had initially caused us to seek medical help. His eyes had started darting, his head tilted to one side, he stopped crawling, and his limbs jerked sporadically with uncontrollable tremors. This we soon found out was a rare side effect of the cancer, the disorder a mouth full of medical jargon, Opsoclonus Myoclonus Syndrome or OMS. His immune system was attacking healthy brain cells along with the cancer cells. The doctors did not seem as concerned about these neurologic side effects and thought that the symptoms of the OMS would go away eventually with the treatment of the cancer. Our first drive to Children’s Hospital was to get a second opinion.
Two weeks later after being admitted to Children’s Hospital, Dylan’s tumor had been removed surgically. No Chemotherapy. No Radiation. However, his OMS was not relenting. Each day we could see him worsening: his tremors, his eyes, his balance, and his agitation. Finally, all bodily control that he had developed in the past ten months had disappeared as well. Without the presence of the cancer cells, his immune system went into overdrive attacking healthy brain stem cells. We knew that the only specialist in Southern California treating this extremely rare disorder was a neurologist at CHLA. Dylan was in the right place to receive the treatment he desperately needed.
Dylan began an aggressive treatment regime which included daily steroid (ACTH) injections for two years and monthly IV (IVIG) treatments that lasted until he was six years old. In addition, every six months we traveled to The National Pediatric Myoclonus Center in Illinois where we found the only doctor in the country who was currently conducting clinical studies on OMS. The neurologist in Illinois would test his spinal fluid to pinpoint which cells in his immune system were overacting and prescribe specific targeted treatments to suppress those cells. The treatment plan was then implemented by the oncology and neurology team back home in Los Angeles. Back and forth on the 110 freeway and back and forth across the country was our life. Like many other parents I have met on this journey, we would agree that the effort, the traffic and the travel was well worth our child’s health and future prognosis.
Up to this point little had been documented about the longterm prognosis of children with OMS. We knew early treatment and suppression of the immune system was key to a more positive prognosis, and the doctors initially warned us that Dylan may never walk or talk. I don’t spend a lot of time reminiscing about this period in Dylan’s life, my life, or our family’s life. It was hard, to say the least, but it was also a blur. Balancing appointments, treatments, therapies, not to mention the activities of my other children, life was hectic. We were on autopilot for the most part, getting the job at hand done and moving on to the next task. However, I do remember very distinct pieces during this foggy time. Every mile stone was an occasion to celebrate, even if it was significantly delayed: crawling again at 20 months, walking at 24 months, and first words emerging finally at 30 months. He was the youngest child CHLA had treated with the dual diagnosis and by far the patient with the most severe OMS symptoms, a medical curiosity.
As Dylan and I walk through the familiar lobby today, past the fish tank and the roller-skate wearing elephant, past the elevators with animal names, past the bustling beach themed emergency waiting room, and finally to the tiger elevators to the 4th floor, all of the memories came flooding back. Dylan says that he doesn’t remember his treatments but his feet have memorized this path. “Mom, remember when they used to have McDonalds right down this hall…Remember the doctor with the pink hair…Remember the bridge we took to the other building.” He remembers. Maybe he doesn’t remember it all, thankfully, but he has enough memory to make him wary of his once a year check up at the oncology “life clinic” for cancer survivors. It is here that he is monitored for any residual symptoms from past treatments and possible reoccurrence of cancer.
Eleven and a half years after his initial diagnosis, Dylan has cognitive delays that cause him to learn at a slower pace, coordination issues that make him less agile than his peers, and speech delays that affect his articulation. However, he has exceeded all medical and neurologic expectations. Dylan is my miracle child. His doctors are amazed to hear that he can ride a mountain bike with gears off-road, he can swim and snorkel, he can snow ski, he participates in a baseball and football league for kids with special needs, all activities that were thought to be unattainable eleven years ago based on his diagnosis.
It should not have been a surprise when the doctor explained that he was recommending that Dylan’s yearly follow-up appointments through the life clinic cease after next year, but it sounded as foreign to me as if he had been speaking another language. What? No more Children’s Hospital? No more blood draws? No more scans? No more freeway traffic? After next year we can officially close this chapter in our lives. Our family has been traveling in this dark tunnel of cancer uncertainty for years. However,when confronted with the bright light of closure, I was left blinking from the glare. The glare of hope and relief and freedom. One more year. The light shines bright at the end of this long dark tunnel. I turned to Dylan and noticed tears in his eyes. “But what about the good doctors Mom?” Yes, leaving the familiarity of the tunnel, even a dark tunnel, is scary and the light ominous. “Son, they will always be there, if we need them.” Yet, I pray that we don’t ever need them again!
It is with a heavy heart that I dedicate this article in memory of Brooke and her loving family. I am grateful that Dylan is alive, but I cannot ignore the countless parents who are mourning the loss of their children at this moment. Sending prayers and love to all my fellow parent warriors. Hug your “littles” and “bigs” today!
I adore you, Rory. You are filled with Light and Hope. Thank you for writing.
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Your story is both touching and heartwarming Rory. I love how you are documenting your thoughts and feelings and sharing them with us.
I volunteer at the South Bay Children’s Hospital Thrift Store, right here in Redondo Beach, and we give a very nice, large sum of money, each year, to the Children’s Hospital. Every time I ring up another sale, I will think of you and your lovely family.
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wow, Rory, left me in tears reading this…takes me back to everything we have been through with Jesse and continue to go thru but also how far we’ve come…a different path than yours but a similar journey. I’m so happy for you and your family and Dylan. xoxo
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I love reading your posts! God bless you and your family. xoxo Love, Lynn
Beautiful news Rory. Give the little big man a high five for me. Love you all
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