Close

CaringBridge Is Funded by People Like You

Make a donation to CaringBridge

Honor Ty Jacob with a tax-deductible contribution to CaringBridge today.

Click here to make your donation.

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.

Please keep Ty in your prayers so he can remain No Evidence Of Disease (NED)!

Our son Ty was diagnosed in May 2008 with stage 4 neuroblastoma. He was only 16 months old at the time and has since 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, he has countless blood and platelet transfusions, countless MIBG,CT, and x-rays, as well numerous bone marrow aspirates and biopsies.

Ty is our little fighter and has never shown any signs of slowing down, even throughout this entire ordeal. He is so strong and continues to "power through it" with a smile on his face. We are blessed to have such a wonderful, loving, and active little boy and know he will beat this cancer! 

Ty is now 8 years old and had been receiving his treatment through Stanford Hospital in Palo Alto, California. However, due to the last part of his clinical study closing, we were referred to Memorial Sloan Kettering Cancer Center in New York to receive an antibody called 3F8, which has  shown promising results. 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, provided he was HAMA negative. While in New York, Ty also endured an experimental treatment on his lower left leg, which still showed active disease in February 2010. The procedure involved a small incision made in his left leg and then 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!

As of April 7, 2010, Ty is officially "no evidence of disease" and Ty finished the 3F8 protocol in March 2011. We made about 15 trips to New York over the course of two years.

Please keep Ty in your prayers so he can remain healthy, happy, and remain no evidence of disease! 

 

Latest Journal Update

Getting Better....

Ty is doing great! The pain in his leg is very manageable... he has not been needing his pain meds as often and appears to be doing well overall. He still will have moments of sharp pain here and there, but it usually will go away just as fast so he does not require anything. 

I have been meaning to update on a very special day Ty was able to participate in last Wednesday. Barbara Zobian from Candlelighters was able to work her magic and made contact with an extraordinary person who is now our friend ( Stephanie Jacobson of the New York Red Bulls soccer team). She gave us the opportunity to attend a game and be treated as VIPs! We were seated in one of the sky boxes and were given all you can eat and drink ( yes, I had a couple of glasses of wine :)  had our own waitress who got us whatever we wanted! It was such an amazing experience for Ty and us, to watch his very first professional soccer game! I didn't think Ty would last the entire game... I wasn't sure if the pain would be too much or if he would feel uncomfortable. We stayed for the entire game. He loved everything about it...He was cheering on the Bulls, eating lots of snacks and was waving his red bull scarf. 

He was given the opportunity to go down to the field and watch the players warm up but he declined. I know Ty is still self conscious about his brace.... which is why he did not want to go down to the field. He later told me he regretted his decision and was sad he was not able to to meet the players. Little did he know, he would be invited BACK to MEET the players and watch them practice in a few weeks!! Which would be a much better personal experience and they would get to know Ty and hear his journey. So when Stephanie told him that he was invited back for a practice, well, that was priceless:) He is so excited and is looking forward to that day. 
 
We can't thank Stephanie enough.... to top it off, she even gave us a ride back to the Ronald after the game, which we so appreciated. BEST.DAY.EVER.

Ty has been involved in physical therapy (PT). His therapist, Lauren, has recommended Ty attend at least 2-3 times a week. While, we were there last week for PT, we ran into a few of the therapists who first worked with him on the inpatient side. They were so surprised to see Ty using his crutches so well and how much he has improved overall:) IT really is amazing to see him now  and compare him to where he was last week... it's just incredible. I thank God daily for Ty's healing and progress. It's still a tough road though... the daily "cranking" of the rods to lengthen can be tough on him but it's over pretty quickly. We try and have him use the IPAD to distract him but Ty has always been one to want to WATCH everything that is being done to him.

We had our first visit with the doctor ( well with his assistant ) as Dr. Prince is out of the country this week. But she indicated everything looked great! She was able to show us on the X-rays where the bone is already growing ( which is exactly what they want) and she said all the pin sites looked good. We are looking at being here till at least August... things can change of course but if Ty stays on schedule with the lengthening, I predict thats when we will be able to come home. 

I will be retuning home next week. I need to see my mom.... and my girls. My mom is back at home ( at least tonight she is)... last time I updated I said she was home and she ended up back in the hospital that night!  While I know this is the right thing to do, I feel incredibly guilty leaving Ty :( . He is very sad I am leaving and does not want me to leave.... he understands why but still doesn't like it.  I told him he could call me anytime and we would FaceTime as much as he wanted. I am hoping he will do fun things with Scott while I am gone and won't miss me too much. I will say this will be the longest I have ever been away from him... and I think it will be much harder on me than him. I probably will be home for at least 2 weeks... and no I will not be returning to work during that time :) 

Please continue to keep Ty in your prayers for his leg to be completely healed, for confidence in himself, and for my mom to remain home and feel better. 
Thank you all who have sent care packages for Ty! Oh my goodness.. he has received a lot of packages and cards! He loves reading the messages and has been busy looking and wanting to use everything at once! We need to get more organized with all his stuff in this room :) 

It's getting better... Praise God, he's getting better. 

With Much Hope,
Carmen
heart
14 people hearted this

Comments

5 Comments

Lisa Moore
By Lisa Moore
Awesome! So glad to hear the great news. Keep up the healing Ty!
Stephanie Williams
By Stephanie- one of his west coast "old" nurses:)
So glad to hear that brave big guy is doing better, love his smile!
Beti Carrillo
By Sra. Carrillo
Praise God! I am happy that Ty is doing so much better and that he is having amazing experiences.
Barbara Zobian CandlelightersNYC.org
By Barbara Zobian CandlelightersNYC.org
Best day ever for the best boy ever! So thankful that Ty was up to having a great time at the Red Bull Stadium...I can't wait to hear about his next adventure with the team.
Love,
Barbara
Wendy Cova
By Wendy
Praise God!!! Carmen, so glad for your sweet boy. He is amazing and so is our God who loves him and all of us so much. God bless the Murray's.