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In Honor of Ty Jacob

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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

GREAT NEWS!

great check up from Dr. Prince!

great check up from Dr. Prince!

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We met with Dr. Prince today and he was very pleased to see how much Ty has improved since our last visit with him one week ago. His X-ray looks good and we are almost at the point where Ty should be in the "lengthening" process :) In fact, Ty is doing so well, he wants to add a few more cm to give him a little more length as his   fractured bone is producing great new bone growth!! Ty is able to bear some weight to his foot ( more on the toe area) but still cannot get it completely down. Some more adjustments were made to Ty's leg brace and we already started the "extensions" today. Ty did perfect... hardly flinched and just had to squeeze my hand in the process. I swear Ty is such a strong kid...he continues to amaze me. 

So the plan is another 2 weeks of extensions and we meet with our Doctor at the end of the extensions on August 12. If all continues to go as planned, we get to GO HOME!! Woo hoo!! Looks like August 14, may be the " day" we get cleared to leave... HOPING to get a ride with Corporate Angel Network so we don't have to deal with the airport craziness with Ty's wheelchair, brace etc....
**Harald.. Harald?? can you help us out again?? :) Harald is a pilot we met on our very first flight to New york in 2009!! He continues to follow Ty's story and we are hoping a flight will be available for us through Corporate Angel this time around. Just thought I'd get his attention through Ty's page too :)  

Ty is excited to finally go home! Of course, we are still not sure on how Ty will adjust being back in school. I think Ty is supposed to begin school the same week we return home??  I am not sure if he will only be able to attend 1/2 day or be able to attend all day. He is still taking strong meds ( narcotics) and he is still a little slow in using his crutches. I am concerned that sitting for long periods of time will get his ankle/foot stiff so it will be more difficult to just get up and move as class goes to recess/lunch etc. I am hoping his buddies will stay with Ty as he adjusts to his new normal and help him out as he struggles to keep up with his friends walking/ running :( I think I am more worried about school than him at this point. I still need to go to the school and talk to his teachers, the principal etc... before school starts so they know what they are dealing with when they see Ty wearing this big brace of his leg!  
 But we will take it day by day.... I am also so afraid of other kids being mean to him cause he does not have a mean bone in his body ( unlike his mommy :) ) and I just hope he can speak up to the people who may pick on him... cause you know this mama bear will!  

Ty continues to be involved in physical and occupational therapy 3-4 times a week. He is definitely improving but can get a bit frustrated when he is unable or rather does not want to do a certain exercises :( . Ty will have to continue with physical therapy when we return home, so not sure where he will be doing that yet... hoping we don't have to drive to Stanford 3-4 times a week....may have to adjust my work schedule once again. 

Ty and Scott were interviewed by Channel 11 news here in New York while I was gone. Basically a segment they are doing about the Ronald McDonald House and the people living here.... it is supposed to air tomorrow morning. They will be sending us the clip so we will be able to share at a later date. Ty asked me today " Are people going to want my autograph once they see me on T.V."?    haha... of course! 

 On another note, I was able to attend the Band of Parents (BOP) " Cocktails for a Cure" event this past Monday evening. BOP is a non profit foundation that solely raises funds for neuroblastoma treatment here at Sloan Kettering Cancer Center. Scott and I have been members of BOP since 2009 and although our primary focus is with Unravel Pediatric Cancer Foundation in California ( www.unravelpediatriccancer.org).... we will always support BOP. BOP has funded trials that TY has benefitted from personally... such a fantastic foundation. Everyone involved in BOP has a child with neuroblastoma. Cocktails for a Cure was such an amazing event!!! It was held on the rooftop of the "The Dream" Hotel  which is in midtown NY, and had the most beautiful views of the City. I was fortunate enough to attend with some other warrior mamas ( representing Maui, Florida, Louisiana) and one dad (Portland) from the Ronald McDonald House as well Barbara Zobian from Candelighters :) Just a reminder on how we all are coming from different backgrounds and lifestyles yet cancer is what binds us together.  It was nice to get away from the house and have a few cocktails :) Hoping they raised a lot of money for our NB kids. If you would like to contribute, please go to Bandofparents.org for more information on how you can do so. 

As always, thank you for your continued support! WE are extremely grateful for your continued calls, texts and caring bridge messages here and on Facebook. I read them all to Ty daily :)

Asking for continued prayers for Ty's complete healing of his leg, and we get the green light to return HOME in 2 weeks!! Bonus if we are able to fly with Corporate Angel Network too!! 


With Much Hope,
Carmen 
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Comments

6 Comments

Cyn Hoang-Davis
By Cyn Hoang-Davis
That is great news! Thanks for always sharing. Gives me hope. Much love to Ty!
Chantone Najar
By
Good job, Ty! Hopefully you all will be home soon... And when I see Ty I will definitely ask for his autograph!
Anne Costa
By Anne Costa
Counting down those days right with you! Great job TY...so proud of you...you will be running circles around your friends soon enough! Can't wait to see your interview...I'm sure even more little girls will be swarming all over you! :)
Hugs n kisses!
Anne & Noah
Lisa Moore
By Lisa Moore
Awesome news!!!
Ty can I have your very first autograph?
Deb whalen
By Deb whalen
Just let me know how I can support him.
Wendy Cova
By Wendy
Carmen such amazing news!! Ty is a warrior indeed. What an amazing little guy you have. So happy to hear the amazing news. Hoping 8/14 is the day on your angel flight. My prayers forTy continue. I know school is another worry. God bless you all.