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Recipients

2018 Town of Babylon Supervisor's Cup Recipients

James


James came home from his dad’s on Father’s Day weekend complaining of pain in his groin. I looked and there was nothing. I thought he had rough-housed with his dad and pulled a muscle. We took a hot shower and went to bed. Three days later he complained again. This time when I looked there was a lump. I thought he might have a hernia. I called the pediatrician after hours line and they said to bring him in the next day. We were told immediately it was not a hernia, but instead swollen lymph nodes. I asked right away if this could be cancer because my sister had Hodgkin’s Lymphoma as a teenager. I was told that generally these things are an inflammatory response to an infection but was given the number of a pediatric surgeon and told to call if things didn’t clear in a few days. They didn’t and we called. From that point, things sort of fell off the track. Once we were referred out to them the pediatrician kind of let them take charge and the surgeon put us on two rounds of antibiotics. Our first blood test was normal and a sonogram just confirmed swollen lymph nodes. The pediatrician wanted a biopsy. The surgeon did not. The radiologist suggested a CT Scan or MRI. The surgeon didn’t want to subject him to more radiation. Three weeks went by with no improvement. Finally, the pediatrician said not to continue with the second round of antibiotics but to come back in and either see them or the surgeon immediately. We did and everyone was concerned. The pediatrician sent us to an infectious disease specialist also affiliated with the same local hospital as the surgeon and he backed up the surgeon’s claims. The pediatrician asked for more bloodwork and another sonogram. The sonogram showed that the lymph nodes had tripled in size in 3 weeks and the bloodwork was no longer normal. Since it was a Friday we now had to wait until Monday for the biopsy. The biopsy which should have taken 20 minutes took 2 hours and we were called two days later. The surgeon said he was “befuddled” because while he had “removed a lymph node it wasn’t lymphoma, so how did it get there? Had it spread?” I hung up the phone and called Memorial Sloan Kettering Cancer Center in NYC because I didn’t want someone “befuddled” handling my child. Since the biopsy was done at the local hospital we now had to wait for the finalized pathology report and slides before we could go to Sloan. While waiting they sent us for a CT Scan. This local hospital told us that he had Rhabdomyosarcoma. When I asked which kind, they said they “couldn’t type it”. I asked if it had spread and they said there was a “local extension”, so Stage III and that it wasn’t in his blood or bones. (I had asked if it was in his bones because he would complain of pain in his back and cry at night and they were telling me to give chewable Motrin.)

 

We got the slides, pathology report, CT Scan and went to Sloan. Within 10 minutes the doctor told us that this local hospital was “blowing smoke up our ass”. James had the alveolar type of Rhabdomyosarcoma (aRMS) and that it was Stage IV, metastasized. The said it was in his bones and asked if he was complaining of pain. They said it did not start in his groin, it had spread there, that it had either started in his foot or his calf but wouldn’t know for certain until they did a PET Scan. Since it was a Friday they did a PET Scan and MRI and scheduled him to come in Monday for surgery to have a port implanted, do a bone marrow biopsy and take testicular tissue to freeze because the chemo can make him sterile. There has been some promise with making Sperm from testicular tissue so we opted to try it. We were sent home with Morphine for the bone pain. James was 6 years old. The morphine stopped working by Sunday night. He was screaming in pain by the time we arrived for Surgery Monday morning. 

 

On Tuesday they sat us down with the results of everything. They told us that because it was in two channels, his bone marrow and his lymph nodes, it was one of the most difficult cases to treat. They said it was widespread in his lymph nodes, abdomen, in his bones, 80% in his bone marrow and possibly in his lung. They said there has only been one long term survivor of what he has. He is expected to survive 3 years on average and has an 8% chance of surviving 5-6 years. When I asked what else we can do, I was told pray. So, we are treating him in an effort to buy time and praying for a medical breakthrough or a miracle. James turned 7 in October.


Aiden



   Aiden was your typical 12-year- old boy who played baseball, ran cross country, and loved to play flag football with his cousins and two younger brothers. Then one day in late September, Aiden woke up and he was unable to walk. After numerous rounds of bloodwork, ultrasounds, MRI’s & bone scans Aiden was finally diagnosed with Complex Regional Pain Syndrome (CRPS previously known as RSD) in October of 2017. CRPS is a disorder of the central nervous system that sends non-stop pain signals to different places - usually the limbs, and it causes excruciating pain. In his case it is his knee that is affected. Aiden spent the end of September, October, and November in various hospitals and a rehab center. He has been in a wheelchair since mid-October. In addition to CRPS, Aiden also has Allodynia which is a condition that makes his nerves hypersensitive. He has an extreme skin sensitivity where even a slight breeze or hair brushing his leg causes horrific pain. CRPS is a disease that is not well known and for that reason many doctors have great difficulty treating it or even making the correct recommendations to patients. Aiden has been examined by specialists in a few different states. We are hopeful that Aiden is on the right track and with the right people working with him he will be able to return to the things a 12-year- old boy should be doing.


Autumn Arlene 

Autumn Arlene was born in June 2015 with what everyone agreed was an adorable bottom lip. Doctors told Autumn’s family to monitor it throughout the first year of her life. Shortly after her first birthday we all noticed she had not "grown into it." As some mentioned may happen. Countless doctors’ visits later Autumn was scheduled for her first MRI. That same evening our hearts were shattered when we received the call saying she needed a biopsy immediately. Our world came crashing down in November 2016 when Autumn was officially diagnosed with a Fibromatosis Soft Tissue Sarcoma. The placement of Autumn's tumor at this point is very involved and her team of Doctors were unable to operate without shrinking it first. 

And so began our battle...


She immediately started an oral Chemotherapy. This form of treatment was done at home every night for 3 months. We had some very bad days in between, but she trooped through. She kept smiling through all the boo-boo's and weekly trips to Cohens Children's Hospital for bloodwork to make sure her blood counts remained good and that her kidney and liver functions were keeping up with her little body. She did amazing. 

Her first scan was set for March 2, 2017 and we prayed with everything inside of us that this form of treatment was working and the tumor was shrinking, or at the very least remained the same. We picked up every lucky penny, never stepped on a crack, used up every birthday cake wish, our thanksgiving turkey wishbone, shooting stars, you name it whatever we could do, we did!

However once again, our family's hearts were shattered when we received the news that not only did the treatment not work but the tumor had grown significantly. Autumn now has a mediport surgically placed in her to receive IV Chemotherapy treatments. We are now on our fourth different treatment path and remaining hopeful. We have coupled her most recent chemotherapy with a new procedure in hopes to freeze the tumor from the inside out.


For over a year now our family's world has been turned upside down. Autumn has brought so much joy into everyone's life she's ever entered. Her spirit is contagious.

 The medical bills have been and will continue to roll in. Donations are so greatly appreciated to help our family through what is without a doubt the hardest time of our lives as we stand behind our littlest member for the fight of a lifetime.

Every time we feel we've faced the worst day ever, we're proven wrong. But together as a Family we remain hopeful. This will not defeat us, this will not define us. We are strong, unseasonably strong, #AutumnStrong


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Phone : 631-889-4551
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