A Request for Help
YOU can help save Hailey
…and the thousands like her around the country
On June 6, 2007, our daughter Hailey Jaye Meltz, then 20 MONTHS old, was diagnosed with an inoperable brain tumor called a Pediatric Low Grade Astrocytoma or “PLGA” (also referred to as “JPA” or Juvenile Pilocytic Astrocytoma. We will use PLGA throughout this letter). Currently, there is no cure for this tumor and the treatments that do exist are outdated, toxic, and ultimately torturous to the thousands of kids affected.
Brain tumors are the #1 cause of cancer death in children, and the #2 overall cause of childhood death behind accidents. PLGA’s are the most common type of childhood brain tumor, yet sadly, funding and research for better treatments and an eventual cure lag dramatically behind other cancers. There is hope, but your generous donations are desperately needed to speed up progress toward PLGA SPECIFIC RESEARCH as the race against the clock has begun and time is something these forgotten children and their families cannot afford.
We, the parents of Hailey and her older sister Faith, are writing this to assist fundraising efforts to change the outlook for our family and the thousands like us around the country. We plead for your financial support in the search for kinder, gentler treatments for these kids and a 100% cure. According to experts, with new scientific advances the acceleration of research to find more effective therapies for PLGA is quite realistic, but... read more -->
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Friday, August 29, 2014 - 9:52am
I know we haven't posted in a long time. Mostly, to be honest, because it feels exhausting to sit down and type about what's going on after all this time. All in all things haven't been too bad. All the usual things are happening with Hailey (some good and some bad), but unfortunately her MRIs have not been great over the last several months, ending with yesterday's results. The quick summary is she has been on Affinitor since February taken by pill from home each day (which has been nice) with regular trips to Madison for port flushing and bloodwork (we kept her port in for now just in case). She no longer has a feeding tube. The MRIs show that the tumor has been slowly growing over the last year and is now 20% bigger than a year ago. So we are back to analyzing and making the difficult decision whether to stay with the treatment she's on and give it more time, or switch to something else again. Not sure what we are going to do yet. Gathering lots of feedback. Been here before. It's always scary because while she is doing well from a symptoms standpoint at this time, we never know when the tumor will start pushing on something that can cause major problems. That's where we're at. Back to square one again in many ways. We'll see what comes next...
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