I want to thank Norma for inviting me to guest blog. I regularly tell Max’s story, neuroblastoma in children, to new employees at Children’s Hospital of Philadelphia (CHOP), in addition to nursing students at the University of Pennsylvania.
In March 2001, when he was 10-years-old, my son Max came home from school complaining of hip pain. We thought it was growing pains. His pediatricians thought it was loose joints. Pain went on for months and finally they sent us to the rheumatologists at CHOP. The docs there thought it might be Juvenile Rheumatoid Arthritis and ordered an MRI to confirm their diagnosis.
But that wasn’t what they found. What they found was cancer. It was Neuroblastoma. And instantly my family’s world was turned upside down.
So how does a 10 year old react to being told he has cancer? He did what any of us would do. He started to cry. “Why are you crying, Max?”, asked the oncology fellow we first met with. “I am afraid I am going to lose my hair,” replied Max. The young oncologist confirmed that he would lose his hair. Max calmed down. The he started to cry again. This time he said that he was afraid he was going to lose his life. The oncologist made no promises, but told Max that he would do everything he could to make sure that doesn’t happen.
I pulled my son into my lap and told him that just one month earlier on 9/11, the people at the World Trade Center had no idea what was to befall them. They were proof that you never know what the future holds. You have to take life one day at a time. And he had plenty of role models … my Aunt Helen who had melanoma in 1953 and was told to go home and die. She now lives in Florida, age 92. And my best friend Deb who was battling ovarian cancer and who should have lost her fight long ago, was still here as well.
You could almost see the light switch go on in his mind. From them on, he decided to take his disease one day at a time.
After the five rounds of high-dose chemotherapy, Max underwent a stem cell transplant. At one point, we were told to prepare ourselves for the worst. An infection had landed him in the Pediatric Intensive Care Unit. But much to everyone’s surprise, Max made it through and was soon dubbed “Miracle Max” by the PICU nurses.
After more than seven months of intense treatment, Max’s doctors declared him “in remission.”
But it didn’t last long. By November 2002, it became apparent that the Neuroblastoma was back.
Once again, Max began chemotherapy. Unfortunately, there is no cure for relapsed Neuroblastoma, just a series of trials and off-the-shelf chemotherapies. Max took it all in stride. He continued going to school through these new treatments. He still did all the things he loved – he played video games, went to summer camp, and went to amusement parks to ride the most frightening roller coasters in existence.
Max was also able to celebrate his Bar Mitzvah with almost 200 of his closest friends and relatives in attendance.
Still, as you can imagine, Max’s illness had a huge impact on our family life. My daughter, Sarah, who at the time was 12, had to grow up very quickly. Family friends stepped in to help care for her whenever I was in the hospital with Max. My husband worked over an hour away from home and was often too exhausted from his commute to deal with what was going on with Max and Sarah.
In 2005, Max agreed to be interviewed for a local TV feature about Alex’s Lemonade Stand Foundation (ALSF). (He had met Alex Scott and her mom during his second round of chemo at CHOP.) From that point on, Max spoke about ALSF whenever and wherever he could. He hosted lemonade stands, and encouraged others to do so. He was very aware that several of his treatments were made possible by the funds raised by ALSF.
For six full years, Max lived relatively easily with his cancer. But by the fall of 2007, it was becoming obvious that Max was losing his battle. His doctor was running out of treatments and Max was running out of time.
In April 2008, at the age of 17, Max passed away at home, surrounded by family and his beloved kitties.
In Max’s memory, we created the Max Levine Fund for Neuroblastoma Research through ALSF. Who better than ALSF to help us find the most cutting edge research into treatments and cures for the disease that took Max, and Alex Scott from us. When his best friend Matt Schechter passed away from leukemia in March 2010, we expanded the mission of the fund to include all high-risk pediatric cancers, and renamed it the M&M Fund.
Please join us in this fight. You can donate to the M&M Fund for High Risk Pediatric Cancer Research. Your donation will go directly to the battle against pediatric cancer through Alex’s Lemonade Stand Foundation.