The good news came in droves today. First, I checked my email and read a note from our local Congressman's (Representative Elton Gallegly) legislative counsel. I wrote a letter to Mr. Gallegly a couple of weeks ago, asking him to support the "Creating Hope Act," which provides market incentives for pharmaceutical companies to develop new treatments for children with “rare” (I use that term loosely!) pediatric diseases such as cancer. Only ONE new pharmaceutical drug to treat ANY TYPE of pediatric cancer has been developed or approved by the Food & Drug Administration since the 1980's. This is because the pharmaceutical companies are reluctant to develop drugs for supposedly "rare" pediatric diseases such pediatric cancer because it requires investing in products that are unlikely to cover the high costs associated with their research, development, marketing and distribution. The Creating Hope Act will hopefully help facilitate more research and development of new pediatric drugs. You might remember that just before Ryan's transplant, his relapsed leukemia had become chemotherapy resistant, meaning it wasn't responding to any of the known drugs that are being used to treat it. Lucky for us, the combination of radiation treatment, super high dose chemo and the transplant worked and he is alive and healthy today. Many kids, too many kids (in my opinion, even ONE kid is way too many kids), aren't that lucky. They get to a point where the current treatments just don't work anymore. There are a limited amount of drugs available to treat them. That is just heartbreaking. Please put yourselves in their parents' shoes for a moment and I think you will find yourself in a desperate place, wishing that there were more drugs available out there to save kids' lives.
Anyhow, I had a great conversation with Ms. Daly (who is Mr. Gallegly's legislative counsel in DC) early this week, and today she sent me this email:
"Dear Ms. Compton,
Mr. Gallegly has agreed to cosponsor the Creating Hope Act. He wanted me to thank you for contacting him. He asked if you could keep him appraised of Ryan's progress.
Also, as we discussed, it would be helpful if you would forward any information you receive on legislation impacting pediatric cancer to me. My contact information is below.
Thank you."
I was ecstatic. Today, I also read the following Facebook post from an organization called "Kids V Cancer:" "We have 43 members of Congress signed on as Sponsors for the Creating Hope Act!!! Your emails are making a difference!!"
YAY!!! If you are an out of state family member or friend reading this and would like to email your Congressional Representative asking them to sponsor the Creating Hope Act, I would soooo appreciate it!!! I can help you with the wording if you'd like. Just email me. Here is a link to a webpage where you can look up and email your Representative: https://writerep.house.gov/writerep/welcome.shtml.
Please check out this video featuring Dennis Quaid as he clearly explains why the Creating Hope Act is so important:
I actually just wrote down a lot of what he said in the video and used it verbatim in my letter to Representative Gallegly (and even in this post). I will post that letter on this blog in case you are curious enough to want to read it and possibly copy some of it and send it to your Representative as well.
The next batch of good news came in the form of a phone call from a social worker that I've been trying to contact for a few weeks regarding Jasmine and Teresa. I recently learned that the Department of Children and Family Services has a special program called the Independent Living Program. Most of you already know, but for those of you that don't know, Teresa, Jasmine & Manuel are our nieces & nephew. We have had legal custody of them since 1998 and 1999. The ILP program provides a LOT of resources for foster and guardianship youth (ages 16-21), including life skills courses at a local community college focusing on education, skill development, career development/exploration/training, referral to available mentors, daily living skills (including financial management, budgeting, self advocacy, etc), financial resources workshops, and housing information; college/university and financial aid resources; help with high school graduation costs, education funds, clothing funds (work uniforms, interview clothing), and so much more! The reason why I'm posting so much info about this here is because I'd like to share this resource with others in case you know of foster/KinGap kids/families who can benefit from this program. Anyhow, today the social worker signed Teresa up for the program. Jasmine will be able to also sign up once she turns 16 next year. I'm so excited about all these resources that are available for them. I was also in foster homes when I was a teenager and back then, none of these services were available. It was pretty hard starting off on my own without much help or direction, so I am amazed and grateful that these services are now available for foster youth.
One more thing about my conversation with this kind social worker... I shared with him about Ryan's situation and found out that his sister is currently preparing for a life-saving bone marrow transplant--- at CITY OF HOPE also!! I was happy to share a bit about our experiences with Ryan and to offer him encouragement. I told him that his sister and their family were in good hands at City of Hope. One of their siblings was a match and will be donating the marrow. We also talked about how lucky Ryan was to be able to find a perfect match from an unrelated donor, given the fact that he is of mixed race (50% Mexican-American, the rest mixed European and a sprinkle of Native American), and about how we desperately need to educate others and recruit them for the National Marrow Donor Registry. There are so many misconceptions and fears about donating!! This prevents people from registering to potentially save a life, just like Ryan's donor did last year. I would donate marrow in a heartbeat if ever called upon to do so.
I'm know I've mentioned this before, but Jason and I both registered shortly after Ryan was diagnosed with leukemia in 2007. Sadly, before then, we didn't really know anything about the registry. Back then, we were under the impression that frontline treatment would cure Ryan and that he wouldn't need a transplant. We registered because we learned about the registry and the fact that we could potentially save a person's life as donors. We had also seen our son endure the first of many, many spinal taps and bone marrow biopsies, at the tender age of 22 months. We figured that if he could endure that like a champ, we could donate marrow for someone. Nowadays, most donors donate by a process called "peripheral blood stem cell donation" which doesn't involve surgery. Here is a little video from the Be the Match Foundation (National Marrow Donor Registry) regarding the donation process:
Speaking of which, Ryan's one year anniversary is coming up soon and we are really hoping that his donor will want to meet us. We can't wait to thank him in person!
Finally, the third batch of news came when Ryan's wish grantor, Alex, of the Make a Wish Foundation called me this afternoon. He told me that Football4Wishes, an organization which helps grant kids' (who have faced or are facing a life-threatening illness) wishes through the Make a Wish program, had decided to sponsor/grant Ryan's wish to visit Disneyworld next year!!!!!!! Football4Wishes is an organization founded by the wife of a SVPD detective who sadly lost her husband to cancer in 2007. Her husband, Gary Galloway, was a police officer and detective for 30 years and he investigated child abuse cases; he was also a child advocate. I immediately got chills/goosebumps (which persisted throughout the afternoon) as Alex told me all about this and about Gary Galloway, and I struggled to not cry once again because of the profound kindness of strangers, and the fact that Ryan's story has come full circle in such an incredible way. Since day one, our PD family has been there with us, supporting us, and throughout Ryan's ordeal they remained by our side. Now that the worst is behind Ryan, here they are again, at our side, this time rallying around him to help celebrate and make his wish come true. I cried when I told Jason the news and he is the one who said that Ryan's journey has come full circle.
...Football4Wishes hosts an annual event called the Gary Galloway Memorial Flag Football Game, in which the SVPD plays against Ventura County firefighters and they raise funds to grant a child's wish. This event is open to the public and it starts at 11 am, with police and fire vehicles and equipment demonstrations. The game starts at noon, and there will be a half time show. There's a bbq throughout the event, which ends at 2 pm. Here is the flyer for the event:
Additional information can be found on Facebook on the Gary Galloway Memorial Flag Football Game page and also the event page.
Ryan's wish has been at least two years in the planning. Initially we had hoped for him to be able to have his wish come true last year after he completed frontline treatment, but when he relapsed and began treatment again, it was difficult to fit in. I am really glad that we did not do an emergency "rush wish" for him last year when he was really sick. I can only imagine that it would have been stressful and bittersweet. We had hoped initially that his trip would be a celebration and now that he has completed relapse treatment and he is doing much better, that will come to fruition. We can't thank Football4Wishes, Alex, the Make a Wish Foundation (Tri Counties Chapter), the Simi Valley PD & Ventura County Fire Department enough for doing this for Ryan. It is simply difficult to express our gratitude in words, something that has happened to us more than once on this journey with Ryan.
I was about to wrap this post up, but I want to share one more thing. More good news, this time about our dear friend, Candace, whom we helped organize a bone marrow drive for last month: the doctors and medical staff at CHLA have found two umbilical cords from which they can use stem cells!!! These umbilical cords are a match for Candace! There is still now bone marrow donor for Candace on the registry, however, the umbilical cords will be able to provide her the life-saving stem cells that she desperately needs for her transplant. Her family and friends (including us, of course) are feeling extremely grateful and relieved for Candace!!
[Ryan and the girls, with Candace and our cousin, Rudy, last weekend, after dinner]
Okay, if you are still reading this, WOW! Thanks for hanging in there with me and thanks for stopping by. ♥
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