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