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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

Going back to NEW YORK....

Christmas 2015 - Isabella, Siena and Ty

Christmas 2015 - Isabella, Siena and Ty

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As usual, I am lagging on updating but wanted to have everything confirmed first before posting...

Ty and I will be returning to NY the last week of February... yes, just me and Ty. Scott will be staying back as it will be a " short trip"  (flying out Wednesday and returning Sunday) so our twins will have him here with them. They really had a difficult time adjusting without us last summer when all 3 of us were gone. I am the one going with Ty since he asked me to be the one to be with him during the procedure. Even though Scott and I both have always been there with Ty for every procedure/ surgery, I just need to be there. But It will be tough to be away from the girls again.... even if it's only for 5 days. 

 The initial plan was to remove the entire external fixator brace last November/December... BUT the top of his leg just isn't growing as quickly as it needs to. To remove the frame too early means all the progress Ty has made would be lost :(

The good news is that the bottom part of his leg is ready to get the "ring" removed but not the top. So we decided to go ahead and at least get the bottom part of the frame removed in February and have some adjustments done to the top of the rings to help the bone start growing faster. In addition, Ty may also have another procedure which takes some of his bone marrow and have it injected into his leg, which has shown to help bone growth in other patients. This is something I will be speaking to Dr. Prince about to see if its a viable option for Ty. Ty will be under anesthesia  to get the bottom portion of his brace removed so getting the bone marrow shouldn't be an issue for him. 

Needless to say, Ty is very disappointed as he still will have part of the frame on for a while longer :( I don't blame him at all... this is something that has not "gone to plan"  when we decided to lengthen his leg.  I hate that Ty  always feel "different" and stared at everywhere we go... it sucks.
He is truly such a strong kid... and even though I tell him daily how proud I am of him, he struggles and having this brace on for 7 months now is not fun. He can't play soccer and is limited on what he can do. Praying it will only be for a couple of more months... God, he deserves to just be a normal kid again. 

But we continue to make the best of this situation... it could be so much worse... as friends of ours continue to relapse, die or struggle through treatment...it's just heartbreaking. i just realized it will be a YEAR  since Ty last had scans!!! Last February was when he last had his scans and he was due in August  to get them again but since he has the metal frame, we can't get them done. It's kinda scary... I've been stressing a little about the lack of scans but there is nothing we can do till the frame is removed.

I am asking for prayers  for Ty  to remain NED and for his leg to heal quickly. Praying we remove his entire brace in February after all.. that his bone growth is able to make the progress he needs by the time we get to New York!  What a gift that would be for Ty :)  I still have HOPE! 

With Much Hope,
Carmen 



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Comments

4 Comments

Soledad Uribe
By Soledad
I'm prayer that it completely comes off soon Carmen. He's such a brave boy to be admired by all. Prayers also to you on your trip. Have a safe one and hope you get to enjoy NY while you're there also. Hugs and kisses to you guys.
Wendy Cova
By
God bless you, strong boy. God is healing you day by day, I know he is. All my best, Wendy Cova
Anne Costa
By Anne Costa
Oh man we will miss you by a week! We fly out 2-17 til 2-20 :( would of love to see you two! Will be praying for the brace to be removed cause Ty's leg is perfect! Love, hugs, and kisses!

XO
Anne & Noah
Chantone Najar
By
Ty is such a strong little boy... Love him so much... He is such a fighter ... No matter if the hits keep coming... He continues to fight. You and Scott are such amazing parents. Hugs!