My Brave Soldier
by Monique Johnson
On January 12, 1993, I received a special gift from God. It was beautifully wrapped and filled with love. The first moment that I saw my gify, I knew that it was special, I would not realize until much later how truly special my gift really was. On this day my son Master Miles Alexander Johnson was born.
Miles is definately a brave soldier. At the ripe age of four months old, he was diagnosed with Hydrocephalus (water on the brain). He had officially had his first surgery in which a VP shunt was placed in his head traveling down through his navel to releave the water pressure. After the surgery, things were a little better.
Miles began to cry less and eat more. I would say life was getting back to normal until Miles began to walk. Once he began to walk, it became painfully obvious that ther were still problems. Miles constantly fell. According to Dr. Garrow (one of Miles' many doctors) everything was fine, but I as his mother knew better. It wasn't just the constant falling, I also began to notice his right eye was going outward. Since Dr. Garrow insisted once again that everything was fine, I sought an Ophthalmologist who advised me that the problem with Miles' eye could be corrected with muscle surgery. Miles had eye muscle surgery in November 1995, it was successful.
Miles continued to fall and for some reason as the days progressed, his condition worsened. In December 1995 he fell one to many times and had to be admitted to Jersey City Medical Center for observation. While there, they performed a series of tests, including a CT scan. The CT scan revealed a tumor, we had a four-day wait until a MRI could confirm the findings. I will never forget the day I stood in the hallway in the hospital as the nurse and Dr Garrow walked down the long hallway, my stomach began to fill with butterflies. The results would be the words I never thought I would hear. Somehow I had convinced myself that there had to be a mistake. I would wake up and this nightmare that had become my life would be just another bad dream. I was painfully wrong. The MRI had confirmed their suspicions, Miles had a brain tumor and unfortunately what would come next was even more unbelieveable. They couldn't help me!
They would have to refer me to a neurosurgeon. I couldn't believe what I was hearing, not only was my stomach turningt but I started feeling cold inside and I had a big lump in my throat making it hard to swallow. I was numb. I couldn't cry, talk or move, all I could do was stand there and stare at the walls in that long, bright hallway. The world seemed to just stop. Everything was at a standstill.
A week later I met Dr. Carmel, a pediatric neurosurgeon at University Medical Center in Newark, NJ. I was advised Miles needed surgery immediately because it was a very large tumor. On December 18th, 1995 he had surgery. The surgery lasted 8 hours, these were the longest 8 hours of my life. As my family and I sat in the waiting room, I was filled with so many emotions that I just wasn't comfortable in one spot.
The surgery was successful because my son's life was spared ant the tumor was now under control but yet on the other hand it was unsuccessful because it wasn't completely removed. Miles spent his Christmas and his New Year in the hospital following the surgery. His recovery took a month, but Miles stood firm.
After being discharged from the hospital in January 1996, Miles began to develop signs and symptoms of shunt failure. We would soon find ourselves back in the hospital for another surgery to revise the shunt. During this ordeal we were referred to Dr. Ann Nepo, Oncologist from the Vallerie Fund Children's Center for Cancer and Blood Disorders. I was soon advised that there was a chance that Miles would need Chemotherapy, but not right away. Miles continued to receive follow up care even though the tumor was stable.
In October 1996, I was advised that the tumor had started to progress. Miles was surgically outfitted with a mediport medicath to begin Chemotherapy. Chemo began; he tolerated it well, besides the difficulties with nausea and vomiting. Miles's eye movement improved, he did less toe walking and he even improved on his balance.
In July 1997, Chemotherapy was stopped due to an allergic reaction. During this time the tumor was stable so Miles was just followed by routine check ups and MRI's every three months. Some aspects of Miles recovery became better, while others deteriorated. During this ordeal, instead of being depressed and feeling down. I began receiving literature from the various foundations and began to educate myself on brain tumors. Along with this, in October 1996, I formed a group named "Miles 2 Go", in honor of Miles. We first began by participating in the Valerie Fund walk Relay, which we are currently active. The organization also holds toy drives for Christmas (helping underprivilaged children) and a Bowl-A-Thon. We have approximately 100 members and my goal is to one day incorporate "Miles 2 Go" and help as many other children as we possibly can, hopefully starting with support groups for parents of children with this disease.
On February 26th, 1998 Miles' MRI showed tumor progression. Only this time the tumor appeared in the fourth ventricle and it was spreading fast. On March 6th, 1998 Miles had another eight hour surgery. This tumor was a pilocytic astrocytoma. After the surgery, Miles was lethargic, ataxic and unable to walk without support. On March 25th, 1998 an MRI showed a dilated fourth ventricle. On April 2, 1998 Miles had a shunt placement and he wasn't able to walk without support. Miles began to have more complications and on April 15 and the 22nd, the MRI's proved palsy in the right eye. Due to this Miles had another shunt revision, on April 29, 1998.
This surgery was unlike others, Miles did not seem to bounce right back frim this surgery. On May 4th, 1998 his neuralgic static's worsened, he was lethargic and had developed cranial nerve palsies. He was unable to smile or eat properly. On May 14th Miles began radiation, which seemed to take a toll on his fragile body. He was nauseous, vomiting, had no appetite and very weak. Radiation lasted for six weeks. Miles went through this ritual on a daily basis. On June 24th, 1998 the radioation was complete and he was able to say "he made it through". at least this phase.
Through the grace of God, Miles's condition improved greatly and the tumor decreased in size. It was a slow recuperation process but I tried to make life as comfortable for him as I could.
In December, 1998 Miles began to have symptoms of lethargy; drooling and retropulsion (walking backwards). As time went by he began to complain of headaches and dropping food on himself when trying to feed himself. Then on March 17th, 1999 another MRI showed dilated ventricles. Miles was once again hospitalized for emergency surgery for a shunt revision. He again showed signs of improvement, but past experience taught me to not get overly excited; always expect the unexpected. We continued to follow up with the neurosurgery, neurology and oncology, as well as, the quartly MRI's. We were also introduced to gastrontorology and endocrinology because of precocious puberty.
In September 1999, as a follow up MRI showed signs of tumor progression. Miles began chemotherapy again. Miles would soon be taken out of school and placed on home instruction. Miles has had complications with chemotherapy, as well as low blood counts and constant transfusions of platelets and hemoglobin and respirtory illnesses. Throughout these trying times, Miles has rallied the support of many people.
Maury Povich did a show dedicated to children in which, Miles and other children from the Valerie Fund were special guests. The family of this years NBA Championship Lakers MVP, Shaquille O'neal has come out in support of Miles. The O'Neal family held a benefit in honor of their mother who died of cancer and they invited Miles to be their special guest. Miles has participated in the Valerie Fund's Fall Fantasy of Fashion (fashion shows) sponsored by the Mall at Short Hills, where Miles stole the show. Most recently, Queen Latifah paid a visit to our home—she did a show on Miles and his illness because of a letter that I wrote to her about Miles and how much he adores her. To check out Queen Latifah's home page, Please Click Here.
Today, in July 2000, Miles still continues on chemotherapy and countless physician's follow up visits. He's still receiving home instruction and weekly transfusions. People say good things come in small packages, and I can truly say that it's true. When I look at Miles, I see my "good" thing in a small package. Miles has come a long way from all of his medical complications without one complaint. He goes into the clinic with a smile running and jumping and he leaves the same way. No matter how many finger sticks, or blood pressure checks he endures, he bounces back and keeps on going.
During this time in his life Miles has been surrounded by a great abundance of love. He's touched the hearts of everyone he has come in contact with. Miles has touched the heart of Shaquille O'Neal and his family, as well as, formed a special relationship with Queen Latifah. Now do you see why my son is a "brave soldier", with the support of family, friends, teachers, social workers, nurses and doctors, I am hopeful that Miles will be victorious against his bout with cancer.
He is a real trooper, fighting the good fight everyday of his life. Everyday is a battle, but as long as Miles is wrapped in God's arms, no harm will come to him. People often ask me how he does it? People have asked me "what type of child is Miles?" I tell them that Miles is a Godsend, without him, where would we be? He gives us joy and happiness everyday of our lives. We have all been blessed, just knowing and loving Miles.
It never occurred to me until now. Just sitting here telling you about my son, my constant source of joy, it has just come to me. The only thing that I haven't said is: Miles, You Are Awesome!
Miles wanted a computer for his "Bravest Kid Dream Fulfillment" award. And because Miles continues to show outstanding bravery throughout his treatments, and never mutters a word of disapproval, we have given him the Bravest Kid Grand Prize Trophy and his very own Pentium 233 computer with a large screen monitor, a computer work station, computer games for children his age, a color printer and lessons from a private teacher to show him how to get the most from his new computer. Enjoy everything Miles, You deserve it.
Special thanks to Luis and Scott from NETWORX computer service for their generous donation of the computer system. Call NETWORX for all your on-site computer needs at: (201) 909-0515. Sales, Service, Networks & Maintenance
