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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 Cal :)

After spending the entire summer in New York, The Murray family is heading back home!!! 

Finalizing our return home was a bit of a nightmare... pretty stressful few days, I must admit.  We finally got confirmation from Corporate Angel Network that a flight was available for us this Thursday morning. We were so excited... for those that don't know, Corporate Angel Network is an organization that provides flights to cancer families to and from treatment free of charge! The best part is you are flying on a private jet.. with usually one or 2 executives, that's it.  The only down side is we only benefit flying with them if the flight is "going our way" and  "IF" there is room. Flying on a jet is better than flying first class.... you are in a private airport, no craziness with crowds or security at all. So, to get the  "confirmation call" yesterday,  that we were now confirmed to be on the flight going out of New Jersey to San Jose on Thursday was a blessing. 

Well, that blessing was short lived and about 3 hours later, we received a call from Corporate Angel, letting us know the flight was now CANCELLED!! uhhhh, what??
 The company, which shall remain nameless, cancelled their flight so our free ride was  too :( . No one is to blame, the business had to cancel for whatever reason and we are just out of luck :(  
 It just sucked as we were now in panic mode trying to figure out a way home sooner than later. We had our hearts set on leaving on Thursday, so  I began searching for flights and even our "go to" Jet Blue airline was not going to work. Since we still wanted to fly out this week, all the flights back home were almost $500 per person... one way!! 

Once again, our trusted and the BEST social worker ever... Kate Yablosky of Lucile Packard Children's Hospital (LPCH) had emailed me to advise us  that our home hospital could provide Southwest airline vouchers to return home. I had totally forgotten about these vouchers as we have never had to use them before. When we were first traveling to NY in 2009, Ty was a toddler and we needed to have direct flights or he would go bonkers traveling all day/changing planes just to get to NY. Southwest does not have direct flights so we never bothered with using the vouchers before but now...looking at paying $1500 just to get home.... we gladly accepted them :) 

So this Thursday, August 13, we will be leaving the Ronald McDonald House bright and early.... our flight is 6:50 a.m!  We have a stop in Dallas, then get into San Jose at 12:20pm :)  So while we will be extremely tired that morning... we are beyond excited to FINALLY  BE COMING HOME!!  We get to be with our girls and be all under one roof. So grateful, so happy and so excited!!! 

Lots to do before we leave, we meet with Dr. Prince one more time tomorrow afternoon for any last adjustments and one more X-ray. If everything looks good , which we are anticipating it will be, we will get the green light to proceed with our plans home. Tomorrow is also the LAST DAY of adjustments!! Can I get an AMEN??
 Poor Ty has been struggling with the pain in his daily lengthening..... So we are hoping/expecting once adjustments are done, he will be able to start walking on his leg and be less depend ant on his crutches. 
 Once home, i will be busy getting Ty back in school, girls in preschool, Ty in physical therapy, getting another wheelchair ordered for Ty as we are returning the one he used here, and getting our home back in order. So I still will be off work another week to get everything squared away. 

Thank you for continuing to be so supportive of #TeamTy!! We could not have done this without all your support!! 

We received a generous donation, along with a gift card for Ty, from several  combined Units over at the Adult Probation Department last week.
We are so thankful.....
A  BIG THANK YOU to all who contributed and especially to  APD Probation Manager Jana Taylor, who was the one who had the idea to do something for us AND rallied her section to do something for us :) We appreicate it!  "Thank you" cards will be coming...for this as well as many other gifts Ty has received. We are officially behind  writing them....but they will be done... I promise!!!
 
With Much Hope,
Carmen  

 
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Comments

3 Comments

Diane Santino
By Diane Santino
Prays for a safe, uneventful return to your home and family!
Liz Moore
By Liz Moore
AMEN
Lisa Moore
By Lisa Moore
Awesome news!!! So glad you're coming home. Continued prayers for a full recovery. Ty, you can give Nana your autograph for me. I saw your debut and you rocked it!!!