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!
UPDATE and IMPORTANT INFORMATION TO SHARE !!
Jan 22, 2014 12:32amSo sorry for not updating since October but as they say, no news is usually good news!!! I have ALOT of important info to share so hope you are patient and read through it all :-)
Ty recently had his quarterly scans and PRAISE THE LORD.... TY remains NED ( NO EVIDENCE OF DISEASE)!!! After receiving our results from Dr. Twist, we spoke about moving Ty's scans to every 6 months and only doing MIBG and no more painful bone marrow procedures or MRI's. Scott and I are definitely on board with moving scans out to every 6 months as we know having such frequent scans also increase his risks to developing a secondary cancer or health problems later in life. Of course, I am a bit apprehensive as having quarterly scans is almost like a safety net for us, rather me...If Ty were to relapse, we want to catch sooner than later..... However, Ty is now almost 6 years out of diagnosis and now almost 4 years out being NED!!! Again, thank you GOD!!! WE are blessed and so so lucky to be in our situation... We will have one more scan in April then officially go out to every 6 months after.
Our appointment with the orthopedic surgeon also was this past November and his left leg is a little over an inch shorter than his right :( While he can still run and play like everyone else... we know that in a few years ( possibly when he's 9 or 10) we may have to stop the growth on his left leg as it may pose more serious health concerns later in life. His left leg is too weak to put a rod in to help grow but there may be another way to lengthen his leg through his thigh. We have options and know there is also a top notch ortho surgeon in NY and will of course, get a second opinion when the time comes. Pray for Ty's leg to grow on his own and we don't have to do ANYTHING.
I also wanted to share our official date for Arms Wide Open Childhood Cancer Foundation SECOND ANNUAL ROCC ( Running Over Childhood Cancer) 5K family fun run!!
Please save the date and mark your calendars for MAY 18- it will be held at the Gilroy Sports Complex and we are hoping to at least double the amount raised from last year!!
IF you are able to volunteer to help for this event, please contact me via email Carmen@awoccf.org. We will have jump houses, face painter, balloon twister, food and hoping to do some small carnival type games. In addition, I am also planning to have baskets of different items to raffle off as well. If you would like to donate or have a connection with businesses who want to sponsor this event or donate items, please contact me. Items can include jewelry, sports memorabilia, tickets to sporting events, trips, wine,spa items, toys, electronics, gift certificates etc... we will gladly accept any items!!!!
Or if you would like to make a basket to donate...that would work too!!! WE appreciate all your help and need it to make it just as successful as last year! I will be giving out more info regarding registration in the coming weeks.... Also I would love to HONOR any local children who have or had cancer at this event. Please contact me if you know of a child you want to have recognized. These kids deserve something special!!
On a final note.... my heart has been heavy these past few months...as I recently learned of a local 6 year old girl from Gilroy who was diagnosed with DIPG ( inoperable brain tumor) this past October. Her name is Jennifer and her family calls her JLK. As soon as I heard what type of cancer she had...my heart dropped. Being in this cancer world, I know DIPG is the absolute worst one you can have... the survival rates suck and again, no freakin research goes to this type of " rare" type of cancer...I have never met Jennifer nor do I know this family. But I think because she is Ty's age and Ty now " understands" what cancer is and does.....just makes my heart ache for what Jennifer is feeling.
This little girl is dealing with such a cruel disease. Even though neuroblastoma ( Ty's cancer) has horrible survival rates as well... there are many surviviors out there, which gave me some HOPE. Even though all his horrific treatment, I believed and had faith.... DIPG is known to have a 9 month survival rate... and you are truly lucky to make it over 2 years living with DIPG!! WTF?!? How is this acceptable??? why isn't their more of an uproar to save our kids??
I have been following JLK's journey since November and have so much respect for her mother....She is quite real in her writing and you can feel her pain through her blog. I keep thinking of Ty, while reading her posts... I know I know, we went through so much with Ty but he was a baby and thank God, only remembers some of his treatment...mostly treatment in New York. I cannot imagine having him go through this treatment again at this age....Please keep JLK in your prayers. Visit her blog or facebook page www.love4JLK.org.
I am also sharing a short video produced by the the truth365.org, which has 15 cancer warrior and angels speaking in their own words of childhood cancer. We know a few of these kiddos personally and I am proud to be part of AWOCCF ( which helped produce the video as well!)
Please share on Facebook, twitter and email. There is also a Petition at the end of the video which only takes a few seconds to sign!!
With Much Hope,
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