Ty Jacob’s Story
We have created this site to keep our friends and family updated on our son Ty, who has been battling neuroblastoma since May 2008.
Our son Ty was diagnosed in May 2008 with stage 4 neuroblastoma. He was only 16 months old at the time and endured seven rounds of high dose chemotherapy, an Autogolous Bone Marrow/Stem Cell Transplant, 27 rounds of radiation and had surgery to have his tumor removed. In addition, to receiving countless blood transfusions, MRI, MIBG and CT scans.
Ty had been receiving the majority of his treatment through Lucile Packard Childrens Hospital at Stanford Hospital in Palo Alto, California. However, due to the last part of his clinical study closing in 2009, we were referred to Memorial Sloan Kettering Cancer Center in New York to receive an antibody called 3F8, which has shown promising results for children suffering from neuroblastoma. From March 2009 to March 2011, we flew coast to coast for his treatment. The 3F8 antibody is an extremely painful treatment that Ty had to endure once a month, if he was “eligible”, (which blood tests determined), to receive the antibody that month.
Ty still had disease showing in his left leg, even after 9 rounds of the antibody. So our oncologist recommended Ty to have an experimental surgery on his lower left leg, which he believed would get rid of the remaining cancer. The procedure/surgery involved a small incision made in his left leg and injecting liquid nitrogen in the area, to freeze the disease.This process is commonly used in bone cancers but not on neuroblastoma. Ty was the third neuroblastoma child at Sloan Kettering to receive this procedure which was successful.
On April 7, 2010, Ty was finally declared "no evidence of disease” (NED) and Ty finished the 3F8 protocol in March 2011. We made about 15 trips to New York over the course of two years.
Ty is now 8 years old and even though has remained NED for the past 5 years, he is now dealing with the “late effects” of the cancer treatment. Ironically, the toxic treatment used to save my son’s life, is now responsible for serious health issues. He suffers from high frequency hearing loss, 8 adult teeth never formed, and he has a high chance to be diagnosed with a secondary cancer; such as leukemia in the future ( due to all the chemo he received), as well as possible heart and lung issues.
Most recently he had major surgery to correct the deformity of his left leg caused by high doses of radiation used to fight the cancer. It was a very invasive surgery and Ty remained in the hospital for 10 days as he was in a lot of pain. In addition, he is also in the process of “lengthening” his left leg as it is very slow growing due to the radiation hitting his growth plate. By having one leg shorter than the other, this began to cause his back to hurt. He now has to wear an “external fixator” device on his left leg, and is slowly being lengthened daily by us “turning” the knobs on the brace. The brace itself is rather large and Ty is very self conscious about it. Even though it is only temporary ( has to wear it for 4-5 months), he does not like it. He just wants to “ be a normal kid” again and play his favorite sport in the world again which is soccer. He misses home ( California) as Ty also has to remain in New York until mid August as he is still being monitored by his surgeon bi-weekly as well as receiving physical therapy 3-4 times a week.
Ty is a proud big brother to his 4 year-old-twin sisters and loves to swim and all things sports, especially his favorite soccer team, Barcelona. In addition to soccer, he loves the San Francisco 49ers and the Golden State Warriors. He also enjoys hanging out with his friends and playing video games.
Please keep Ty in your prayers so he can remain healthy, happy, and remain no evidence of disease!