Michael's Story
A Truly Brave Jersey Boy
On June 8, 1994 God blessed our family with a beautiful son, our second child. Michael always had a "special" personality. He attracted people like a magnet.
In January, 1999, at the age of 4-1/2, Michael had not been feeling well for a few weeks, complaining of stomach aches. We were back and forth to the pediatrician numerous times before something very serious showed up. We went for an Ultrasound and it showed a large mass. We were told our son had Neuroblastoma, A cancer of the nerve cells. At Hackensack University Medical Center we had a CAT scan. They were sure it was Nueroblastoma. Michael hadn't eaten in weeks and he lost 6 pounds in about a month. When a biopsy was done, a broviac was also placed into his chest to administer Chemotherapy. When the biopsy results came in, it was confirmed at Stage 4, and that his expected survival rate was only 25%
We went to MEMORIAL SLOAN KETTERING CANCER CENTER in New York City and met with Dr Cheung- the world renouned Neuroblastoma Specialist. Our options were broadened and the survival rate was much higher. In January, we began Chemotherapy, we knew then it was going to be a long journey. After the first round, his blood counts began to drop and near the second round, Michael began to lose his hair. We shaved his head while he was in the hospital to make it a little easier for him. He was soon completely bald, but very cute. He wasn't embarrassed by it, and rarely wore a hat.
After five rounds of Chemo we were awaiting the biggest day of our lives, surgery to resect the tumor. The day before the surgery we met with another world renouned Doctor, Michael LaQuaglia also from MEMORIAL SLOAN KETTERING CANCER CENTER and he stressed how life-threatening the surgery was. Michael's tumor was near his aorta and vena cava. We spent the longest 8 hours, waiting for Michael in recovery. The end result was the surgeon got everything he could see or feel.
Michael was unconscious when we saw him in recovery, it didn't even look like him because he was so swollen. We were scared, but HE knew we were there for him., I asked him to squeeze my thumb if he knew we were there, and he did. Michael spend 5 days in the Intensive Care Unit at New York Hospital. They couldn't believe how fast he was able to sit up and play in the bed. That's our sport I told them.
He is the most cooperative child you could ever imagine. Never needed sedation for scans and always lies still on the table. After another round of chemo. He made it home just in time for his birthday but he wasn't feeling his best. He looked the worst he had in the six months since diagnosis, he was frail and so weak. We had to hook him up to TPN (an intervenous nutritional supplement) so he could get some nutrition.
In June we began Antibodies at MSKCC. The first round was unbearable for him, he didn't know what to expect and the pain was very bad. There were medications to control it, but the suffering was awful. He continued to be a good sport. He was so sad and very emotional.
The team of doctors decided to Harvest Michael's marrow in July. Prior to that, we had to give him shots to boost his white blood cell count and again he was a trooper. He even helped us push the syringe. Michael ALWAYS helped take care of his Broviac, we would clean it and he would flush the lines so they didn't get obstructed- pretty amazing for a 5 year old. He even helped the nurses draw his blood from the line.
The antibody treatment continued and in September he had radiation to his abdomen 2 times a day for seven days. They were long days for him going back and forth to the hospital from the RMDH. Michael was beginning to miss his family. He also couldn't attend Kindergarten. He had a home tutor for 7 months. He spent many days receiving blood transfusions. Long days of being in clinic tired him out.
The next big step was the "Hot Antibodies" We were admited to the hospital and for the next week Michael became radioactive. I think that was the hardest week. We couldn't even kiss or touch him directly. He had to stay behind a lead shield all day long. But He always woke up with a smile. When we were discharged we had to go to the RMDH for 3 weeks until he received his marrow back.
The Doctor was sure we would be back in the hospital for Christmas with a fever, but Michael fought so hard we never had to go. His platelets were very low and he needed many blood transfusions afterward. We still continued antibodies and prayed for a HAMA (a HAMA is when a body starts to create it's own antibodies to fight the disease and doesn't need the outside help any longer). The pain from the treatments only got worse. The hardest part were his emotions, the medications gave him very little control. It was really sad and upsetting some days.
Michael was able to go back to school in March, he was thrilled. He spent more time out of school than in, but that's OK. The doctors removed his broviac in April and he was able to swim over the course of the summer, Something he hadn't been able to do in a year. All we had to face now, were scans every three months. So far all of his scans have been negative. Then on August 5th, we got the call we were waiting for. Michael had gotten a HAMA- we cried and Michael jumped around with excitement. It was finally an end to his terrible pain and misery. We finally saw the light at the end of the tunnel.
Michael is now on Accutane as maintenance for the next six months and that too is not easy, he gets headaches and his lips chap and skin becomes dry but it sure beats the pain he faced in the past. What makes him our hero is his ability to have a smile most of the time and be concerned about other children more than himself. He told me when he was first diagnosed that he would be the winner when his treatments were complete. Well Michael you are our Winner. We love you for all you've gone through and for helping us be strong. Without the intelligence of Dr. Cheung, and his team, I don't know where Michael would be today. He is presently in first grade and having a hard time adjusting, I guess for what he's been through, he's entitled. He loves playing baseball, soccer, basketball, & flag football with his two brothers Frank and Anthony.
Michael and his brothers Anthony and Frank
For Michael's incredible bravery and successful fight against the cancer monster, the JSF Foundation bought him his very own BMX bicycle, a pair of In-Line Skates, a Skate Board, a helmet and all the pads to keep him safe, a "Heavy Hitter" baseball bat with his name, hand carved in it and of course the "Bravest Kid" Trophy. Michael was presented with his award LIVE at the JSF Foundation's Annual "All-Star Music Celebration III" held in Livingston, NJ. For more information about the "All-Star Music Celebration III" click here. The night was filled with positive energy and Michael seemed to love the whole thing. Michael, keep up the fight and the bravery, and enjoy all of your gifts, you deserve them.
