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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.

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 4 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

LOOOOOOONG OVERDUE UPDATE!!!!!





Team TY family and friends....


I truly apologize for not updating much sooner...I realize it's been 9 months since my last update! Damn you Facebook! It's just so much easier to update Ty's progress and his life via social media :) 
Better late than never right?? 


First I must say a BELATED THANK YOU to you all here on Caringbridge! Thank you to all  who helped make our SECOND ANNUAL ROCC " RUNNING OVER CHILDHOOD CANCER" 5k family run last May,  a HUGE SUCCESS!! Those who donated items, volunteered their time to help at the event, registered or made any type of contribution... we truly appreciate it all and we could not have done it without all your help! Total raised for pediatric cancer research.....$20,000!!!  


$10,000 was sent to the JLK tumor fund through Lucile Packard Childrens Hospital for DIPG research. Jennifer Lynn Kranz was a vivacious 6 year old girl who life was stolen by DIPG on February 12, 2014. As I have stated in previous posts... I never had the opportunity to meet Jennifer, but she has made such an impression on my heart that I think of her and her family often.  I was also so honored to have Libby Kranz, mother of Jennifer, speak at the beginning of the race and I was able to meet the rest of her beautiful family that will forever ache for Jennifer.  Libby began a 501 (c) 3, non profit called UNRAVEL  late last year and in a few short months, they have raised hundreds of thousands of dollars and tons of awareness for childhood cancer. Very proud of Libby. She is grieving her daughter's death yet still fighting to find a cure.... many of us would not have the will/ strength to go on, but she does.

Big news to share with you all......
I am very proud to announce that I am officially on the executive board of the UNRAVEL pediatric cancer foundation :)
It was a  very difficult decision to resign from my position at Arms Wide Open Childhood Cancer Foundation (AWOCCF), as I had been president of the West Coast Chapter for the past 2 years. Of course, every one who finds out I am no longer with AWOCCF, want to know  " Why?".... so I would like to take this opportunity to explain. 
First, let me say that Dena ( founder of AWOCCF and fellow NB mom) and I remain good friends... nothing happened to make me want to leave AWOCCF.
 But by living on the West Coast, it really made it so much harder to be on the phone for board meetings, especially after returning to work full time last year. I kinda felt disconnected to what was going on in the foundation as I was missing out on many telephone calls and meetings. No one is to blame, well maybe the 3 hour time difference :) between California and NY.  

So when Libby called me and asked if I would be part of UNRAVEL, I was  very surprised.... and flattered. Libby and I had kept in touch via text after the ROCC run and I always admired the way she has handled everything thrown at her.  She definitely has a vision of what she wants Unravel to be and I like her idea about trying to focus more on the west coast hospitals and research. She already had her board formed and they were doing great things.  I thought how I was "alone out here" in AWOCCF since AWOOCF is based on the east coast. So I relied heavily on volunteers ( friends and family) at my yearly event :). After weighing the pros and cons, and especially after getting Dena's blessing, I knew what I wanted to do. I feel like in these short few months that I have been involved in UNRAVEL, I feel more "involved" in the fight against pediatric cancer and it feels good to part of this amazing group of ladies ( and Tony :) at Unravel. To be sitting in actual board meetings, being responsible for things that need to get done for the foundation, has me working many extra hours outside my regular job :) Something I never really had to do at AWOCCF, since all the stuff that needed to be done was on the east coast and the board members handled it out there. So, I am busy but I love it. I will still promote AWOCCF and the TRUTH365, as they continue to do FABULOUS things for childhood cancer research and assist families going through this cancer journey. But I  also will speaking a lot about Unravel and the events we will be doing in the future. 

Which brings me to the next bit of news. Unravel is partnering with the She.Is, Beautiful 5k/10k run in Santa Cruz on March 22. If you are local and are able to run or volunteer please sign up at www.runsheisbeautiful.org and register under "Team glitter". You will be asked to create a fund raising page and proceeds will go to Unravel which will fund the Treehouse project at UCSC which is focused on defeating pediatric cancer by using genomic data.. We  are already over 300 runners and we have some fantastic raffle prizes. 

Now an update on  Ty! Ty just turned 8 years old, in second grade and loves basketball, especially the Warriors. He is doing well and has his scans  starting tomorrow. The difference in this set of scans is we have waited 6 months since the last time we were at the hospital. This is the LONGEST he has gone without being scanned and its definitely a mixed fear/blessing. Ty has complained of leg pain here and there and my heart always just drops, when he tells me that. But theres usually a reason behind his pain.... but I know I will always think " relapse". Just something I live with now and try and enjoy "now".  Ty will be getting his bone marrows and MIBG injection on Wednesday and Thursday will be his actual MIBG scan. Results on Friday afternoon!  Please pray for Ty to remain NED and there are no complications. 

We are also returning to NY in February for a second opinion on Ty's left leg. Now that Ty is getting older, we are finally seeing the late effects of what the treatment to save his life is doing to him NOW. Ty had 27 rounds of radiation to his left tibia and an experimental procedure to get rid of the remaining NB in his marrow. As a result, his left leg is growing much more slowly than his right. We need to get more options than what Stanford is offering at this time. Stanford can only slow/stop the growth of his right leg... which means his right leg growing wide, which would look odd as he grows up. Ty is definitely aware of the difference in his legs and it bothers him so much:( I will go more into what he is feeling on my next post and will update more on  our upcoming New York trip after we are done with scans. I don't want this update to be too long. 


So right now I am asking/needing for lots of prayers and positive thoughts for Ty as we head back to Lucile Packard tomorrow. NED. NED. NED!!  


With Much Hope,
Carmen
** If you are on Facebook please make sure you   "like" Unravel Pediatric Cancer" FB page too!! and check out the webpage
www.unravelpediatriccancer.org**
I promise once you start reading Libby's blog, you will be forever changed.....  #love4jlk   
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Comments

4 Comments

Hillary Waldeisen
By Hillary Waldeisen
Carmen, wow, you are awesome! So proud to hear of all you continue to do. Congrats on your new position and I hope they know how lucky they are to have you. When will you guys be in NY? I'm hoping and praying you get the answers and treatment needed for Ty's leg. I love the photo of him and the girls. They are all growing up so fast! Give Ty a squeeze from Lucy :) Xoxo
Ned Putt
By Ned Putt
Thank you for the update Carmen and all of the work you do in fighting pediatric cancer. Prayers for Ty and all of your family....NED, NED, NED...
Cheryl Rivera
By Cheryl Rivera
Prayers always for Ty and the rest of your family! Keep fighting my little Derek Jeter fan! !
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Wendy Cova
By Wendy Cova
Carmen, God bless you and your family and sweet Ty. NED NED NED NED NED NED. Unravel made a great decision w you. #love4jlk
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