Michael Romano was diagnosed with Stage 4 Neuroblastoma on January 19, 1999 at the age of 4 1/2.
Neuroblastoma is a cancer of the nerve cells. The doctors gave Michael a 25% chance of survival and told us he would probably only live for a year. Our fight began. His biopsy at Hackensack University Medical Center confirmed that he did have an advanced stage of Cancer. We consulted with doctors at Memorial Sloan Kettering Cancer Center in NYC and a treatment plan was put into place.
Chemotherapy was the first big hit to this small little body. 5 cycles of it and loss of hair, vomiting, and transfusions. In May of 1999 Michael had his first surgery to remove what was left of his tumor. Dr. Michael LaQuaglia performed a miracle and removed everything visible to the naked eye. It was not an easy recovery and Michael spent time in the ICU unit. Michael began a therapy called 3F8's, an Antibody Therapy( which caused him much pain). In December he went inpatient to complete this therapy in the HOT ANTIBODIES which meant he was given radioactive materials. I think that could have been one of the hardest weeks. We couldn't even kiss or touch him for several days. He had to stay behind a lead shield all day long.
In between hospital stays he traveled back and forth to have his blood counts checked three times a week and was often transfused. He was unable to attend school because his immune system was weak. Despite his treatment, Michael pushed himself to play sports, worked with a home tutor and enjoyed his favorite teams THE NEW YORK YANKEES and Rangers.
God was good, and Michael showed no signs of disease. He was able to return to school and was seen at the hospital for scans every three months and times in between for blood count check.
In March 2002 Michael complained of leg pain. He was hit with a ball and we thought it was a "NORMAL" bruise. After immediately taking him to the hospital, we were given the news that no one wants to hear, Michael relapsed. The cancer had returned. We were back to the beginning, treatment hospital visits on a daily basis. He began more chemotherapy and radiation.
In September 2002 we headed to Childrens Hospital of Philadelphia where an experimental therapy was available. Michael once again became radioactive for several days. His body was full of cancer in many different spots. Six weeks later another miracle...NO EVIDENCE OF DISEASE!!! This put him in a position to be eligible for a Stem Cell Transplant( using his own stem cells). So on December 23 he was admitted to the hospital, hit with mega doses of Chemotherapy and on December 31, 2002 his cells were given back to him. A NEW YEAR and NEW LIFE! He spent 40 days in the hospital recovering.
Life was full of ups and downs but Michael never stopped. He didn't let CANCER interfere in his life. He was the strongest kid I'll ever know.
There were many decisions to make on what sort of treatment he would do to try and keep this disease away, the options became limited as time went by. He tried Oral Chemotherapy. A vaccine was grown from his own cells at Texas Children's Hospital in Houston and we flew back and forth every couple of weeks for his injections. Would this be the end of therapy? We had hoped so. More experimental therapy was given and some of it made him feel awful. He had pain in his feet and could barely walk, nausea, headaches and extreme fatigue. At times his white count would drop so low he would spend three weeks at a time in the hospital because he had nothing to help him fight infection.
In January 2005- the disease had spread once again, this time hitting his spine.He also had new disease in his lower jaw bone and many other places through out his body including his bone marrow. Radiation once again was a plan of action to rid Michael of this disease. We weren't giving up, there was HOPE and a life to fight for. Michael continued to play baseball, go fishing and LIVE.
He watched the baseball field "THE YARD" turn into a field of dreams, one that he was determined to play on and did. The summer of 2005 was one like no other. He celebrated his 11th birthday with a fishing excursion..what ever happened that day the doctors said keep going. We saw a tremendous improvement in his counts. He had an awesome summer and was able to travel. And didn't need a single transfusion for three months. Little did we know that would be that last summer with our Michael.
In September 2005 he returned to 6th grade. Two short weeks later Michael was admitted to the hospital on September 24th. He had difficulty breathing and was running a fever and needed to be rushed into the URGENT CARE at MSKCC.. He had pneumonia. This time was just as critical as the others, but he was weak. His body couldn't fight this beast of an infection. He slept for days, couldn't walk and needed oxygen to breath. Would he regain his strength? We still had hope, we were not going to give up. Because Michael was always the COMEBACK KID.
On October 21, 2005- Michael quietly passed away. In his short 11 years of life he touched so many lives. As he was laid to rest in his Yankee pinstripes, our family saw how much Michael was loved as his Mass was truly a Hero's send off. Our hearts ache every day as he is missed dearly. Our lives will never be the same.
On June 8, 2008 Michael would have been turning 14. He should have been part of the Class of 2008 from 8th grade at Midtown Community School, CANCER shortened those dreams.
So I ask you to please, join us in CELEBRATING MICHAEL'S LIFE and take part in the MICHAEL ROMANO MEMORIAL- Alex Lemonade Stand Foundation with hope that one day there will be a cure.
-Sharon Romano
What Sharon didn't mention and what makes me awe struck is that during Michael's nearly seven year battle with Neuroblastoma he somehow found the strength to live an extraordinary life. He donated his precious energy to raising funds for so many different charities, from designing Christmas cards for the Justin Scott Foster Foundation and NCCF to running in the Ronald McDonald House Kids Charity Run as well as ACS's Relay for Life. For Michael's ninth birthday he received so many gifts from family, friends, and well wishers that he chose to donate some to a shelter for needy children.
Michael was a true HERO. He faced the battle of childhood cancer with a courage and strength not found in most adults, and he did it with an illuminating smile that made everyone around him feel blessed just to know him.
Since Michael was called to Heaven he has become the Angel that guides his parents and his brothers to follow his legacy of giving. Sharon, Frank, Frankie and even nine year old Anthony have taken part in numerous fundraising efforts to benefit childhood cancer research and other families living the nightmare. They’ve been part of Relay for Life, The Make a Wish Foundation, St. Baldrick’s Events, The Polar Plunge and Chicken Dip to Benefit Camp Sunshine, and Alex’s Lemonade Stand Foundation (ALSF) to name a few. I know that Sharon feels a special connection to ALSF. Alex and Michael fought the same battle with Neuroblastoma, both receiving some of their treatments at the same hospital, Children’s Hospital of Philadelphia. Even more than that, Michael and Alex shared a determination to help others and to eradicate this horrible disease.
As Sharon mentioned Michael would have been 14 on June 8, he would have just moved up from the Bayonne Cal Ripken League to the older division, Bayonne Babe Ruth, and this September Michael would have been starting his Freshman year at St. Peter's Prep in Jersey City, NJ (following in his brother Frankie's footsteps). For those who may be unaware, both Saint Peter's Prep and Bayonne Cal Ripken/ Babe Ruth League have a strong tradition of "giving back" in ways too numerous to mention. Michael would have fit in beautifully.
Together, with student volunteers from Prep and members of our Ripken/ Ruth family, we will be hosting the Michael Romano Memorial Alex's Lemonade Stand on Michael's birthday Sunday, June 8 2008. Our event will begin at 1p.m. at The Yard @ Foot Locker Stadium, home of the Bayonne Cal Ripken League, located at 145 East 5th Street, Bayonne, NJ. In addition there will be citywide donation sites and canning beginning at 8a.m.
Please consider helping our cause. With a simple "click" on the Give Now symbol on this page you can make your donation, and remember no amount is too small. Anyone who is interested in getting a company involved in making a Corporate Donation, please contact me and I will send out all the necessary information. All proceeds from our fundraiser will go directly to Alex's Lemonade Stand Foundation, a nationally recognized nonprofit organization dedicated to funding childhood cancer research. All donations are tax deductible.To learn more about ALSF please visit their website at www.alexslemonade.org
Let's hope Angels Michael and Alex can continue to guide us all to follow their legacy of giving, and join in the quest to find a cure.
My Most SincereThanks for Your Time and Consideration,
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