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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

BIG NEWS FOR TY.... WE ARE RETURNING TO NEW YORK

X-ray taken at Sloan

X-ray taken at Sloan

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I know I have been lagging on updating Ty's page. First with the most important news regarding his scans this past February.......
Praise the Lord....Ty remains NED!!! Now we wait for another 6 months for next round of scans.

Now  to update regarding our consultation we had with the orthopedic surgeons at Sloan Kettering this past month. First, let me say we are EXTREMELY relieved and happy we went to get this consultation in New York. We feel both doctors ( Dr. Fabbri and Dr. Prince) have many years of experience. They both took a lot of time to explain and shared their experiences in these type of cases. We are very confident in our decision and feel Ty will receive great care from these doctors. So after our meetings and  some more case conferencing.. both doctors agree Ty needs to have corrective surgery on his left leg sooner than later.
*** To give you a better understanding of what Ty is dealing with daily.... take a good look at his X-ray above taken in NY. Ty is standing completely straight. 
Quite a disturbing picture right?? Also because Stanford never did an xray like this and only offered to stop the growth of his right leg.*****


The reason to do the lengthening now is because of the spine and because he has so much a difference already - 5cm/2 + inches.  This is right at the edge of doing an appropriate and safe lengthening with good function of his knee and ankle and resuming sports/activity as soon as possible.

As of now Ty's plan would be:

Surgery #1:  straightening the tibia bone by cutting and re-aligning it; and lengthening the tibia bone a total of 6cm; slight lengthening of his Achilles tendon (because it is already tight). Dr. Prince would try to do all of this with the internal device but cannot make any promises so the external device is possible.  But he was fairly confident he could place the internal device :)This is a big surgery and he would probably be in the hospital for at least 1 week afterwards.

The lengthening would take about 75 days (between 60-90 days) from the day of surgery and Ty would need to see him every 2 weeks. He needs to do daily therapy to stretch out his knee.  

Surgery #2 (just after lengthening is done ~90 days):  "guided growth" of the top growth plate of the left tibia with plates and screws to prevent further worsening of the growth deformity; remove a couple of screws down by his ankle to allow more therapy and activity.  This would be a smaller surgery and he would be in the hospital 2 days after surgery.

After the lengthening and second surgery are done we can go home and he can usually resume full walking by 1 month later without crutches, then 2 months later if the bone looks good....then he can usually resume sports. 

At some point we would have to discuss what to do about the rest of his growth. He  still has another 6+ cm to grow in the other leg that we have to decide what to do.  We could either stop the growth on the other leg or we could do another lengthening several years in the future. Either way he would have several years of uninterrupted activity and sports with minimal effects and minimal curvature to his spine. 


So that's what my little guy is facing this summer. Yes, I know this is the best course of action and bottom line Ty needs this done as the unevenness in his legs are now affecting his spine. We already have our pre-admission surgery appointment scheduled on June 9 with his surgery date on June 11... We will be back in New York for possibly 3 months, hoping it will be only 2 though :) 

Flashback to 2009, when we lived in New york for over 2 months while Ty received the 3F8 antibodies and radiation. We considered ourselves "New Yorkers" then. It wasn't that bad for us as we all remained together. But now  we have our twin girls, who just turned 4 years old. We have decided not to take them with us as we will be living in the Ronald McDonald House. While the RMH is a beautiful place, it's not very practical to have 5 people in a room with only 2 twin beds and a couch :( For those of you who haven't met our Siena and Bella, they are VERY ACTIVE and quite sassy. Ummm... they are also high maintenance, can throw some serious tantrums and need to run around. The other issue is the RMH house is full of  cancer kids with low immune systems and we cannot risk our little ones getting a cold and possibly infecting another cancer child. To keep them cooped up in a room is just not going to work.  Ty will be needing physical therapy daily and may not be in the best mood while his little sisters are running around and he cannot. We also realize the girls will still need US as much as possible, and being away from them for possibly 3 months, is just not fair. So, Scott and I decided to split our time this summer and for the first month or so, I will be in New York with Ty  while Scott stays back with twins. Then Scott can come up with Ty the last month. If it looks like we will be there the third month, I can return to be with Ty and Scott can go back to California.

Will it suck to have my family broken apart  this summer?
 abso-fuck-in-lute-ly :(

Is this surgery the best thing for Ty right now? Absolutely! 

 
So we will make sacrifices.... cause the end result will be so worth it!  

We have many "positives" in our situation too. Those of you who don't know, Scott and I both are Probation Officers in Santa Clara County and our coworkers are pretty kick ass!  We are lucky enough to work for a Department who do care about their employees... they truly do.  I know we all complain about our job at times...about our co workers, what we are able to do as PO's anymore, our job overall.
But  when Ty was first diagnosed and I basically left my job on that Friday May 2, 2008 not to return until almost a year later... I was covered. I continued to receive a paycheck, I was able to be assigned to a "part time"  PO code while I was away ( so not to burn so many vacation hours), and the most humbling most gracious part of all??? I received OVER 2000 DONATED VACATION HOURS FROM MY PROBATION FAMILY!!!  This still brings a smile on my face and am so eternally grateful to those who donated their precious vacation hours so I can care for my son and not worry about financial stuff. The good thing is I STILL HAVE OVER 1000 HOURS of vacation time that I have in a separate account that I refuse to touch... to be used only for Ty and God forbid his cancer returned. So, I am not worried about work, we got it covered :) Thank you to all my co workers who have always been so supportive.


So even though my family will be apart for a few months, it's truly nothing in the grand scheme of things.... Ty's leg has been such an issue for him and it's only getting worse. Ty has recently began complaining of back pain too... he also HATES the way his leg looks. He always says it bothers him that his knee keeps hitting his other knee. In the back of my mind, I always think if there is some other kid(s) at his school making fun of him and his leg??  He always denies it and stated he would tell me if that was the case. Oh my, heads would roll... I tell you. Yes, I have no problem checking a second grader :) Ty knows I have no problem addressing one of his peers ( in a nice but stern way). My handcuffs may fall out of my pocket and tell kids who are mean to others will go to jail!  I kid I kid... haven't had to use that tactic.... yet :)
But seriously,  I am the most protective mama bear and will not have Ty made fun of because of his cancer treatments... 

Oops, I've digressed... I just hate this entire situation.  I still can't believe how fast this is all happening especially when Stanford told us we didn't have to make a decision until he was 9 or 10 years old?? Geezus... What if we listened to them and not have seeked out another opinion??  Can you tell I am still annoyed with our orthopedic surgeon at Stanford?!?  

Ty is having major surgery in 6 weeks..... 6 weeks!!!! He won't be able to hang out with his best buddies ( Ryan, Garrett, and Jorge) and his sisters. Praying he is not in a lot of pain and he continues to kick ass and recover much faster than Dr. Prince predicted :) His sisters are going to MISS him like crazy!!! Even though they argue all the time, they play so well together and he is the " peace keeper" between the twins and is truly the best big brother to them. I am going to miss him so much when I am back in California.. this will be the longest I have ever been apart from him, it's just nuts. 

What does Ty think about all this?
Well, he seems to have a very positive attitude and the one question he did ask the doctor after hearing them explain everything was... " Do I need to use the mask before my surgery?"  Prior to being able to lay still on his own for scans, Ty would have to use a mask  which was used to administer the anesthesia to have him fall asleep. The issue was the anesthesiologist would add flavor to the mask so it would be easier for kids to use, but it backfired on Ty. He has  always had an extremely sensitive nose and he hated the " flavored smells".  So that was his biggest concern. Dr. Prince immediately said they could administer it through an IV, which meant a " poke" and Ty said "I'm okay  with that".  He just hates medical masks...  At of all the things to be worried about... the mask :)

I tried to explain the process and what was going to happen to him later when we returned to California. Again, Ty took it all in and said, " Will this finally make my leg straight and will I able to run just as fast as the other kids??" I said " yes" your leg will be straight but it may be sore so we need to do daily exercises in NY. I wanted him to understand as much as he can.  That he will not see his sisters for a couple of months but that mommy or daddy will always be with him. Ty was happy with this explanation and said he just wants his leg to "match" his right leg. I also let him know, we were going to do lots of fun stuff in NY before his surgery and after, as he gets stronger.  I don't think Ty knows exactly what to expect because I also have no idea what to expect from this surgery and recovery.... So  kinda going in blind here.... We aren't dealing with chemo or antibodies.... which we are so grateful for :)  

So  that's going on with my little man. I know this update was very  lengthy and may have jumped around a few times. Sorry about that.  So if I appear preoccupied at work... my mind is honestly still processing it all. It is a little surreal knowing Ty is going in for major surgery to correct the deformity  in his leg  because of what the cancer treatments he needed to save his life did. IF we had better treatments in the first place, we wouldn't be going through this crap now. Our kids deserve better.  

I will start updating on this page and on FB much more often... as we are getting ready to prepare to live in New York and of course how his surgery and recovery goes. 

Thank you all for your continued prayers, postivie thoughts and support!! Team TY is asking for special prayers and positive thoughts to get through  these next few months! 


With Much Hope,
Carmen 

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Comments

11 Comments

martha chavez
By martha chavez
Great to hear Ty has this option. Although it sounds like a lot, as you said.. it will be worth it. Always here for you guys and will be praying all goes well and for s speedy recovery for Ty! You guys are awesome 😊
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Bernie Rocha
By Bernie
Carmen and Scott,

Happy to hear that Ty has a viable option to fix his leg. The X-Ray is straight crazy and I can't imagine how Ty has been playing like that these past few years.

I know it will be hard to be away from your little ones for a couple months, but I'm sure they will be in good hands with Daddy Scott. (Maybe now you can live the single New York life you always wanted and snag Derek Jeter!) I kid.....

On a serious note, I am here if you need anything or just want to vent. I still remember getting the text from you that Ty was at Stanford in May of 08'. You had left our Gang Unit reunion early the previous day because you said Ty was feeling sick. Such a long journey full of lows and highs, but Ty and your family have made it through like champs.

Positive thoughts for a successful surgery and a speedy recovery for TY!
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Ned Putt
By Ned Putt
Carmen and Scott, just shows how great you two are as parents in getting a second opinion for Ty. Now he will be running faster than all of those other kids in no time. Thoughts and prayers for you, Ty and the rest of your family.
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Diane Santino
By Diane Santino
Praying (and I just got on this site) for TY's surgery to be a success and the separation from your family is not too painful for anyone!
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Coyolxauhqui Anhder
By Coyo — last edited
Carmen, Ty, and family: we will be praying for all of you, for the doctors to so their best, for Ty's speedy recovery, for peace if mind for all of you, for guidance, strength and faith! We love sweet Ty and we will keep all of you in our hearts. I'm pretty sure we can get a group of 2nd-grader bodyguards too ;).
Much love to you.
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Stephanie Perera
By Steph Perera
So happy you guys have a good plan for Ty, but sad he will have to go through more pain. We will be praying and cheering him on this summer!!!!
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Grace Murray
By Grace Murray
I won't be able to help much with caring for Ty but I can spend more time with the girls in Gilroy if you need me. When Ty comes home, I can help with his exercises.
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Kathy Vance
By Kathy Vance
Carmen, I'm just shocked at Ty's situation, meaning how come Stanford did not see this? It's so upsetting because I put so much trust in Stanford and their doctors. But I'm happy that you saw these NY doctors and especially when you did. I hope the healing goes well and the time goes quickly. Sounds like you've got some good doctors.
You didn't mention it but it looks like the hip would be affected by this also. I can't believe Stanford didn't do this kind of an x-ray.
I haven't been on Caring Bridge for a few years but I'm going to be following you and Ty.
Kathy
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Nona Carter
By Wandell Gilliland-Carter
Ty is such a brave little man!! God Bless him. Continued prayers for him and his surgery,his doctors and for you, Carmen, and Scott. Your plate is full, like overflowing. Keep the faith, as you know , God will see you through this.
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Liz Moore
By Liz Moore
That is a long process, but necessary. I will be praying for all of you and the doctors and the other medical staff.
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