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! 


Latest Journal Update

good and bad news

I just realized I have not updated in almost 2 months..... 

But for the most part, things have been going quite well for Ty.  We had HOPED to return to New York late this month or early November to have his external fixator removed but that's not going to happen :( 

Ty's last Xray showed the bone growth near his ankle is still not growing in as fast as it should be. When Ty had this procedure done, they basically fractured his leg in 2 places and that is where we "lengthened" his leg. The trick to lengthening his leg is to have the bone start "regrowing" in these places, which would give him added length. Crazy... I know. But to have his leg start producing new bone growth means Ty needs to be bearing more of his weight on it.  He depends so much on his crutches  ( where he cheats by not placing his leg down when he walks:) ) . I will have to say, he has definitely been walking unassisted a lot more and doing so much better in physical therapy! 

So we are really HOPING we will return to New York in December... get his brace removed and get cast placed on his leg. One step closer for Ty to finally be able to be a "normal" third grader who can run around the playground with his friends and most importantly play soccer. He is so tired of people constantly  staring at him..but he has a good attitude overall. I am so thankful for his friends at school, who treat him the same as always... they love him just they way he is! 

I know this is Ty's page but I also wanted to ask for specific prayers for my sister Silvia. Silvia suffered a brain aneurysm last Saturday evening and is currently in the Intensive Care unit in San Jose. She ended up having a "subarachnoid hemorrhage" which is bleeding from a damaged artery at the surface of the brain. This bleeding often causes a sudden, severe headache and it is a type of stroke which COULD cause permanent brain damage..... 

Right now, Silvia is recovering slowly... but is in pretty good shape considering what could have happened. She could have died or be permanently disabled as a lot of people who suffer this type of aneurysm do. While she is still has a long ways to go to fully recover and these next couple of weeks is crucial in her recovery.....We are so lucky she is alert, like one of the nurses said " It's not a sprint...it's a marathon." 

We would be very appreciative of continued prayers and positive thoughts for Ty's continued healing in his leg, as well as for my sister's continued recovery with no permanent brain damage.

With Much Hope,
15 people hearted this



Nona Carter
By Wandell Gilliland Carter
Praying for your family's needs. Stay strong, God does hear our prayers, as you know!
1 person hearted this
martha chavez
Oh Carmen, sorry to hear about your sister. I'll be praying she recovers soon with no permanent damage. Praying for Ty as always. Let me know if you guys need anything. God bless you all always and prayers for your entire family.
Michele Chase
By Michele Chase
prayers for Ty and your sister
2 people hearted this
Anne Costa
By Anne Costa
Sending prayers and love for you all!
Anne & Noah
1 person hearted this
Barbara Zobian CandlelightersNYC.org
By Barbara #candlelightersnyc
Oh Carmen, first Mom and now your sister, you really do deserve a break...sending love and offering prayers for your sister's complete recovery. So sorry to hear about the setback for Ty, I know he will be successful, just taking a little longer. Waiting to see you in NYC in December..love you
erica demasi
By erica demasi
I'm so sorry to hear about your sister of course our prayers are with her and Ty