Our Story
Our son, Jake, was diagnosed with ALL (Acute Lymphoblastic Leukemia) in February 2012 when he was 7 years old. Jake was initially treated locally at St. Barnabas Hospital in Livingston, New Jersey and then at Memorial-Sloan Kettering Cancer Center (“MSKCC”) in New York. The doctors told us that more than 90% of kids with ALL go into remission within one month of standard chemo treatments. Jake was not part of that 90%. Following several months of chemotherapy which did not result in a remission, Jake’s doctors recommended that he receive a bone-marrow transplant.
Miraculously, our then five-year old daughter, Lily, was an exact bone marrow match for Jake and would be his donor. Leading up to the transplant, Jake had to receive several rounds of high dose chemotherapy and something called total body irradiation where effectively the entire body receives doses of radiation to prepare for the transplant. On August 7th, 2012, which we now call Hero Day, our brave daughter Lily walked into MSKCC and literally gave a piece of herself to save her brother’s life. On the next day, August 8th, 2012, as Lily’s bone marrow dripped into his veins, Jake was, in a way reborn.
After the transplant, Jake spent two months in isolation in the hospital recovering. Jake’s transplant was a success and he came home in October 2012. In the days, months and years following Jake’s transplant, he returned to school and camp, played organized sports and did all of the things that he loved to do. He returned to a very normal and happy life.
Jake’s cancer had been in remission for more than 4 years when he was very suddenly diagnosed with a brain tumor on December 22, 2016 at the age of 12 after experiencing headaches. An MRI had revealed that Jake had a massive, cancerous tumor on the left frontal lobe of his brain. The tumor was so large that the doctors needed to operate the next day. The neurosurgery team at MSKCC performed an operation on Jake to remove the tumor on December 23, 2016. The surgery lasted almost 10 hours. Jake’s neurosurgeon removed as much of the tumor as possible but she told us that this was a very aggressive and invasive tumor and that it was impossible to remove all of the cancerous cells from the area. Jake recovered well from the surgery and was home within a few days. Tests later showed that Jake had Stage IV Glioblastoma – an incurable disease that is at the top of the list of the most aggressive and deadly cancers. The doctors believe that the tumor was likely caused by the radiation that Jake had received leading up to his bone marrow transplant – an extremely rare side effect. In the weeks and months that followed, Jake received a variety of treatments at MSKCC including 35 rounds of radiation, chemotherapy and later immunotherapy.
In the fall of 2017, an MRI revealed that Jake’s tumor had started to come back. After realizing that there were very limited treatment options remaining for Jake locally, we decided to pursue a clinical trial. After countless hours of research, travel and parental advocacy, we found an innovative clinical trial at the University of Alabama-Birmingham which utilized an oncolytic virus (in this case, a modified version of the herpes simplex virus) to attack the tumor directly as well as to stimulate the immune system to recognize and kill tumor cells on its own. Fortunately, Jake qualified and was accepted to the trial and he spent almost three weeks in Birmingham in October 2017 receiving and recovering from the treatment. At the time, Jake was one of only a handful of children in the country to receive this treatment.
The treatment successfully fended off the tumor for more than a year during which Jake lived every day to the fullest and we built more memories as a family. We went on Jake’s dream trip to Hawaii and also travelled to Los Angeles, Boston, Philadelphia, the Catskill Mountains, Cape May and Lake George. Jake was invited to Yankee Stadium to spend time with Aaron Boone, was invited to Fenway by the Red Sox and sat in the Red Sox President’s seats, and became the honorary captain of our town’s high school baseball team which went on to win the conference and county championships. During that time, Jake was even featured on an ESPN segment during Sunday Night Baseball. Jake became a Bar Mitzvah in December 2017 and we threw him a big party to celebrate this achievement and to celebrate his life. Most importantly, Jake saw the birth of his brother, Luke, who was born on October 12, 2018. Jake’s smile when first meeting his new brother could have lit up the entire hospital. We had decided to have Luke to create a miracle out of a nightmare and to give Jake another legacy to carry him far into the future.
Over the course of this time period, Jake began to have physical side effects from inflammation in his brain resulting from his treatments and his disease. He lost the ability to use his dominant hand and his right leg also weakened, making it harder for him to walk. He also had trouble with speech and short term memory. None of this stopped Jake. He just adapted and kept going.
Jake continued to decline physically in the fall of 2018. An MRI in December 2018 revealed that Jake’s tumor was back yet again. Our treatment options were even more limited this time but we had prepared for this day. We reached out to doctors at a hospital called Roswell Park Cancer Center in Buffalo who were running an adult clinical trial which used a promising cancer vaccine called SurVaxM. The doctors agreed to seek compassionate use approval from the FDA for Jake to receive the vaccine. By some miracle, we received the approval within one week during the government shutdown. We knew this was Jake’s last hope.
By this point Jake could no longer walk and was in a wheelchair. He persevered through 4 trips to Buffalo for his vaccine shots and never complained. Unfortunately, the cancer took over and the treatment couldn’t help Jake. We cared for him at home for several months until he passed away peacefully surrounded by family on April 11, 2019.
Throughout both of Jake’s cancer battles, he remained unbelievably positive. Jake never once complained or asked “why me?”. He smiled and laughed through every treatment and challenge, and often reassured us that everything would be okay. His strength, courage and positive outlook were and are an inspiration for our family. Jake inspired our entire community who embraced and supported him in various ways. Jake never gave up and lived his short life to the fullest. He is the very definition of a hero.
In addition to everything else, Jake was a medical pioneer. His participation in multiple clinical trials and experimental treatments will help pave the way for future treatments for children with his condition.
This journey has really opened our eyes to the very limited treatment options available for pediatrics with difficult, rare cancers particularly in the clinical trial space. Pediatric cancer research continues to be severely underfunded when compared to adult cancer research. We found dozens of innovative options for adults with brain cancers but only a handful around the country that are available to children. We believe that this situation is unacceptable and we intend to do our part to change that. With Jake as our inspiration, Trial Blazers for Kids focuses on delivering hope to children like Jake and their families by funding innovative pediatric clinical trials which may help provide cures, extend lives and improve treatment options for pediatric cancers. We hope that you will help us to honor Jake’s life by helping to make a difference in the lives of other children facing similar challenges.
