I was all set last night to do a “True Story Tuesday” post about the day we had (which was very surreal); I had uploaded pictures and was thinking through how I wanted to do it. And then, I visited a friend’s blog and read her post, and the wind was totally knocked out of me. A sweet young man named Jack fought neuroblastoma years ago; when I started following Caringbridge sites, he was already finished with treatment and NED(no evidence of disease). His mom made the decision to close down his CB site in 2007, although she continued to do email updates for quite a while whenever Jack had scans. But it’s been over 5 years now, and Jack was considered to be living the cure. WAS. This weekend, after persistent leg pain, it was discovered that there was something lurking in Jack’s leg. The biopsy yesterday confirmed the devastating news that the NB is back. When I read that news on Kristie’s blog, I felt like someone had punched me in the gut. Just two weeks ago, a feisty young lady who attended both Lighthouse Retreats with us was confirmed to have a relapse of NB, and as I type this, I feel sick to my stomach. I realize that cancers like breast and prostate have far greater numbers of people who are diagnosed with them, but did anyone ever stop to think about the unfairness of just counting numbers? Kids are only considered kids (and therefore pediatric cancer patients if they should be so unlucky) for 18 years. The potential number of years that an adult could be diagnosed with any cancer type is up to 60-70, depending on lifespan. Of course there will be more adults diagnosed, but in that brief timespan of childhood, ANY cancer diagnosis is beyond horrible. The time and innocence lost in the midst of treatment is irrecoverable. And in cases like Jack’s and Sarah’s, the only thing certain about the near future is that it will be filled with things that NO child should have to face.
So, the only true story that I can focus on right now is the very real need for a cure. And, with the lack of funding paired with the continued budget cuts, that translates into an even greater need for CARING. These precious children are our hope and our future, and they deserve every chance that we can give them to beat this beast. One absolutely wonderful organization that does amazing things in so many ways is CURE Childhood Cancer headed by the incredible Kristin Connor. Another worthy place to park any charitable donations is Rally Foundation. Of course, while the donations don’t go towards a medical cure, one of my very favorite support groups is The Lightouse Family Retreat; the heart healing that they provide is priceless. Another group that does wonders for the kids themselves is Camp Sunshine; our buddy Tyler loved that place so much.
There’s a very special thing going on right now, though, and I would love for anyone who reads this to not only consider it themselves but to pass the link on to at least 10 people. Back in January 2007, a precious little girl named Catie died from complications of treatment for medulloblastoma, a brain tumor. She was 4 years old, but she left behind a hole as big as the ocean. Catie had an amazing sense of humor and loved to laugh; probably her most coveted possession was her hair, for the brief time she was able to grow it between the end of treatment and relapse. Isn’t she beautiful?
Catie LOVED Christmas, and she especially loved a mischievous little elf who came to visit and was constantly getting into trouble at her house. After she died, her mom, Jenny, wanted to do something that would keep Catie’s spirit alive while helping other sick and hurting children. She ultimately came up with “Elves From Catie“, in conjunction with the Host an Elf folks. For $20, you can purchase an elf that will be delivered to a child at whatever children’s hospital you choose. Stop for just a minute. Try to imagine your child having to spend Christmas in a hospital room, perhaps even in isolation due to lack of an immune system. And then imagine the joy on your child’s face if they were to receive a special elf friend who could keep them company through the lonely hours. Yep, Catie’s elves are special, just as Catie was and is special. Take a look for yourself; I feel sure you’ll agree!
I know this wasn’t a funny post, but pediatric cancer just isn’t. Having to treat children with protocols developed for adults because there just isn’t any money to do research specifically for kids? Not funny at all. Spending Christmas in the hospital while your friends are waking up to Christmas lights and Santa-cookie crumbs? So far from funny that you just can’t get there from here. Please help. Together, we CAN make a difference, and that is the REAL true story. Thanks.