2019 Town of Babylon Supervisor's Cup Recipients
Alec
Alec is 17 years old. He was diagnosed with ADEM on October 11, 2018, 14 hours after his ER admission on October 10th. After further research and symptoms, it was determined that he actually has Acute Flaccid Myelitis, which is very similar to ADEM, but a bit worse. AFM is that thing that had showed up on the news a while back that reporters are referring to as "the new modern day polio". Alec has been in the hospital now for over 140 days. About 6 days prior to his hospital admission he was teaching a karate class. Alec is a first-degree black belt and lived a pretty average life of an almost regular teenager. (Alec does have an extensive medical history but has defied odds to spite it all) Anyway, as a result of the AFM Alec now suffers from Critical illness myopathy and critical illness neuropathy, in addition to suffering complete respiratory failure and was completely paralyzed on his left side, from his left eye to his left foot and everything including his left lung in between. He also now has an autonomic dysreflexia which causes his blood pressure to spike extremely quick and, as a result, could cause stroke. After an intense course of steroids and several rounds of IVIG, Alec’s paralysis began to diminish. We were told he was getting better but not to expect much. I am pleased to announce the Alec is now walking and no longer wheelchair bound (wheelchair now only for when going longer distances). Alec is still currently trached and we are beyond hopeful that this will not be a forever thing. Yesterday marked one week that he has been without ventilation. During the night he is hooked up to humidification through his trach, and during the day he goes between the speaking valve and trying a "cap". I am also pleased to tell you he no longer has a feeding tube and I am working diligently to get some pounds back on this sweet child. Every day is a new struggle and he is working his tail off to get better. The paralysis is and most likely will remain on the left side of his neck and his left shoulder, which was the initial onset point of this dreaded disease. In addition to all of this, the Critical illness Neuropathy has created a mild hydrocephaly in his brain. There is still a very long road ahead but look how far he has come. And I am beyond thrilled and blessed to know what a miracle it is to still have my boy. And that is it... each morning when we wake our hearts are just filled with gratitude. Since day one... Alec and I have just been requesting prayers, anything additional is a bonus. But if while you are considering him and even if you don't as you share his story could you just ask everyone to add my sweet brave boy to their prayers at night. We thank you in advance. There can never be to many prayers.
Jack
Jack Robinson was born October 14, 2008 unfortunately that’s not when his fight began. While Jack was in the womb a sonogram picked up that he had an oversized bladder. Although the bladder reduced in size, the damage to his kidneys was irreversible. At 6 months old Jack went into cardiac arrest and was then placed on dialysis because his kidneys were failing. At 14 months old Jack received a kidney transplant. The donor was Jacks mothers’ cousin Laura, she was a 99% match almost perfect. Because it was an adult kidney going into Jacks tiny body his kidney was placed in the front of him next to his liver. After a long 5 hour surgery Jack now had a new kidney. This was no simple surgery, the Surgeons had to build special tools for Jacks tiny organs. They removed both of Jacks kidneys and had to relocate his liver to put the kidney in place. After a week in the hospital Jack was ready to go home, but not without rejection medicine and a very strict diet.
Things were good for Jack for a while and then it happened in 2015, another mother’s nightmare. Jacks body rejected the new kidney. His body shut down and jack was in a coma for 10 weeks. While in the coma Jack was on dialysis, he was filled with anti-rejection medication and steroids to stop the rejection. Little jack went from being this thin little boy to a bloated overweight sick child that couldn’t walk without getting out of breath because of the steroids. Simple tasks like walking from the car were a chore for jack so playing, running, riding a bicycle was next to impossible. Jack, now 7 was in and out of the hospital on a daily basis. He has had countless minor surgeries and numerous kidney biopsies.
Weekly blood work 15 medications a day and countless trips and stays in the hospital was the norm for Jack. While other 7 year olds were enjoying their childhood eating candy and French fries Jack was taking medication getting blood work done and drinking water. The potassium and sodium in a small order of french-fries would put Jack back in the hospital to much Chocolate gives most 7 year olds a belly ache it puts jack in the hospital. When a normal child of 7 gets a stomach flu, its few days drink some Pedi lite or Gatorade and off they go. Not Jack. It’s a trip to the ER then admitted to the hospital for fluids for a week. This is how it went day in and day out until October 2016.
In October of 2016 a surgeon at Morgan Stanley Children’s Hospital preformed a risky and life changing surgery. An 8 hour surgery was performed to repair Jacks bladder. Jacks bladder was reconstructed making it smaller, the ureter tube connecting the bladder to the kidney was originally attached to the bladder in the wrong spot causing reflux. The surgeon removed the ureter and attached it to the top of the bladder where it belongs. While performing the surgery the surgeon discovered that Jack ureter tube was so diseased that it could not be used. Fortunately for Jack, the ureter from the left kidney was still attached to the bladder and was removed and put in place connecting to the kidney. Jacks struggle did not end there. He was sent home form the hospital with a catheter and a bag to contain his urine while his bladder healed. Jack had a tube from his body to a bag that contained his urine he had to carry around for a month. Wearing anything other than shorts was impossible. Jack was too embarrassed to leave the house. Because his bladder wasn’t working properly and fear of more damage to the kidney Jack had to be catharized every 4 hours. During the day at school Jack would have to go to the nurse’s office where the school nurse would cath him. At home, his mother would cath him when he woke up, before school when he returned from school and after dinner before bed. This was Jacks routine for the rest of 2016 and most of 2017.
In 2017 Jack received a blessing, Jack’s bladder went to work. His kidney was now functioning. Jack was taken off steroids. He lost close to 50 pounds. Jack was able to play, run, and swim. Life was good for jack for a while. But make no mistake, Jack was still a very sick child. He had to drink 2 liters of water a day, take 10 medications a day, blood work monthly and still on a very strict diet. However, life was a lot easier for about a year for Jack.
Towards the end of 2018 Jack started getting sick again. No more energy, his legs hurt all the time, he just wanted to sleep 8, 10, 12 hours a day. Some days Jack wouldn’t even get out of bed. Around Thanksgiving, Jack was getting sick more and more. Some days he would say he’s ok because he didn’t want to go to the hospital when we knew he wasn’t. Just before Christmas Jack started vomiting. At first it was sporadic we thought it was just a bug. Then Jack would vomit once a day every day, sometimes from his medication, sometimes out of nowhere he would be running to the bathroom to vomit. The Drs said his new kidney is failing and he needs a transplant. Jack’s immune system is shot and simple colds and viruses linger for months not days. Now it’s back to the hospital for days a time for fluids and IV medications because he kept vomiting them all out. Now Jack has to be very careful when taking his meds so they stay down. He has to drink 3 liters of water a day just to keep his kidney functioning.
Jack is currently on the kidney transplant list at Morgan Stanley Hospital and by the middle of March 2019 he will be on the transplant list at Cohen Children’s hospital on Long Island. We will soon begin looking for a living donor for Jack with hopes of the transplant being performed during the summer of 2019. #TeamJack #winningisallJackknows
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 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