Saturday, May 14, 2005

Holding Out For a Hero

214 Days to Go

HEROES come in many shapes and sizes. For most of us, when we are very young, our first hero is a mom or dad (depending on which one actually kills the spiders in the bathroom, kisses away the owies, and can get the lid off the jelly jar). Then, most children move into the more civic-minded phase of holding up police officers and fire fighters as heroes. My dad was a fire fighter, so I was lucky enough to be able to combine the two. (But mom was the one who could get the lid off the jelly jar!) Then, I sort of skipped the pre-teen/teen phase of looking to sports figures and celebrities as heroes. Sure, I’ll admit I had a small poster of Scott Baio on the wall of my bedroom (Hey, in those days, he was a grade-A, certified FOX!) but I was never over-the-top for anyone like that.

One of the questions on my 10-year high school reunion survey was to list my hero. That, and the question, “Who is the one person, living or dead, that you would most like to meet?” …. Well, those questions have always been difficult for me to answer. There might be a celebrity or two I enjoy, or a historical figure I think it would be interesting to meet, but no clear-cut HERO figure has ever stood out for me. And especially to be asked to narrow it down to ONE. If I hail Jonas Salk for his polio vaccine, does that diminish Benjamin Franklin’s electricity? To say Ghandi was the greatest peacemaker of all times seems somewhat insulting to Mother Theresa, know what I mean? And while I might not be Catholic, I’m still not taking any chances by being disrespectful about the most important nun I’ve ever heard of.

Fortunately, the world of pediatric cancer is one place where it is not only OK, but wonderful to have more than one Hero. Having a few hundred or thousand to rally around you can certainly be uplifting at times!

First, of course, are the kids themselves. I know all of you are already inspired by these kids and all they go through, or you wouldn’t spend your spare time browsing Caringbridge sites and offering notes of encouragement. So, I won’t dwell on that except to say Kendrie is indeed my hands-down hero in this whole mess. Even when she’s whining about taking her meds, because I know she’ll eventually suck it up and take them each night. And she knows she will, too, but sometimes in life a little pre-medication whining is simply in order.

Secondly, where would any of our kids be without the medical staff that takes care of them, plowing along with our families through this un-chartered territory? Sometimes it’s even un-chartered for them ….. but if you are lucky and have doctors, nurses, nurse-practitioners, anesthesiologists, therapists, child-life specialists, technicians, radiologists, pharmacists, etc etc etc that you like as much as we like ours, its makes the entire journey a lot more bearable. We still have seven months of treatment to go and I’m *already* stressing over what I can possibly do or make or buy or beg or borrow or steal at the end to show all these people how much I appreciate what they have done for Kendrie. If any of you have any suggestions, please leave them in the guestbook --- I am all ears.

Thirdly, and what I want to talk about today, are the people who aren’t in the medical field, but who still feel called to HELP in some way. I had no idea when we began this adventure of ours, how many kind, caring, compassionate people there are in the world. It’s always been hard for me to ask for help. I was the kind of kid who would walk home from school before I would ask for a ride. As an adult, I’ve gotten better (ie, lazier) and asking for help isn’t quite as awkward, but I still hate to do it. I’ve learned, however, through our experience with leukemia, that there are people out there who really want to help and just need to be pointed in a direction. Others have a direction already and have done things for our family that I didn’t even realize we needed!

We have been helped by so many charitable organizations that I am almost embarrassed, except that each one has been fabulous and none of them have made me feel like they were offering charity. Perhaps that’s the mark of a truly great hero --- someone who does something for you without making you feel awkward or indebted. The least I can do is mention some of them by name and make public my thanks to all of them.

Supersibs!, whose mission is to honor, support and recognize brothers and sisters of children with cancer. Brayden and Kellen have gotten lots of neat care packages from Supersibs, and have been made to feel special during a time when they might otherwise have gotten overlooked. If you have a child with cancer who has siblings, consider signing them up for Supersibs. If this sounds like an organization you would like to support, please visit their website for opportunities. Brayden and Kellen are definitely heroes in their own right, considering how their lives have been spun and changed and oftentimes put on hold, through no fault of their own, and I think Supersibs! is a great organization to recognize that.

The Lighthouse Family Retreat If you’ve been following our website since last summer, you already know about our wonderful week at the beach courtesy of the Lighthouse. Their mission is to serve children with cancer and their families at a seaside retreat and help them to laugh, restore family relationships, and find hope in God. Words can’t describe how great that week was. I strongly encourage you to visit their website and learn more about the amazing people who have dedicated themselves to this ministry. Also, poke around the site a bit for some great photos of a *certain* family enjoying themselves last summer …. especially one extremely flattering photo of a certain someone, who shall not be named (Blaine) in a grass skirt and adorable coconut bra. Blaine and I hope to someday return to the Lighthouse as Family Volunteers, but I’m afraid the coconut bra picture might deem us (well, HIM, anyway!) as mentally unstable.

Camp Sunshine provides recreational, educational, and support programs for children with cancer and their families, and provides them an opportunity to develop friendships with others experiencing similar challenges, to participate in activities that promote normal childhood development, and to assist in their fight against cancer. Camp Sunshine has been a big help to us, not only allowing us to enjoy thier twice-yearly Family Camp Weekends and various family activities, but also providing us with a local area support group these past six months, which has been great for us, and also serving as a way for us to connect and keep in touch with quasi-local families who are experiencing the same things we are experiencing as a cancer-family. If you live anywhere near the Atlanta area, you should really check them out.

The Make A Wish organization, who facilitated Kendrie’s wish trip to Disney in February. Despite how it might have appeared in my journal entries telling about the trip, I do not hold Make A Wish directly responsible for the complete and total decline in manners and behavior my children experienced during their stay in Florida. I haven’t quite decided WHO exactly I *do* hold responsible, but I’ll let you know when I find someone or something to blame.

Give Kids The World, the amazing resort where we stayed for Kendrie’s wish trip ….. Give Kids the World (GKTW) is a 51-acre, non-profit resort that invites children with life-threatening illnesses and their families to spend a cost-free, week-long vacation in the central Florida area. Those are the “official” stats for the resort --- but what it really is, the spirit and kindness and generosity that was shown to our family there, can’t easily be put into words. After we volunteer back at the Lighthouse, volunteering at Give Kids the World is next on our list. Magical. Truly.

Here is a perfect example of a Hero born out of an otherwise intolerable situation. Grianne Owen’s son Killian passed away from leukemia --- determined to help battle on, in his honor, she came up with Coaching for The Cure. The idea is simple. At the end of every sports season, the team parent generally takes up a collection of donations from the parents to buy a gift for their coach. What "Coaching for the Cure" offers is a way to donate those funds in honor of the team coach. By going to the website and printing out the donation form, Team Moms everywhere can help "Kids Kick Cancer"! Coaching for the Cure accepts the financial donation in honor of the Coach and sends a T-Shirt and certificate to be presented to the coach by the team. Coaches help and inspire their youth and what better way to teach the invaluable lesson of helping others than by the example of giving! Coaching for the Cure has signed an agreement with Curesearch (formerly the National Childhood Cancer Foundation) to launch the idea nationally in January 2005.

"While survival rates have increased in the last forty years, 1 in 4 children (some studies show 1 in 3) diagnosed with cancer still do not survive. This is particularly intolerable when doctors are now saying it is possible to find a cure for childhood cancer in our lifetime if we have the funding needed to support the research being done. With your support, we can turn childhood cancer from a killer disease to a curable one! Please join our team and help us Kick Childhood Cancer! If you have kids who play on organized sports teams, this is a great way to help --- become a HERO yourself!"

CURE Childhood Cancer was founded in 1975 as a non-profit organization dedicated to conquering childhood cancer through research, education and support of patients and their families. "Until there is a cure for every child diagnosed with cancer - CURE will be there." This is a great resource for families with diagnosed children and I highly recommend you check out their website.

Candlelighters Childhood Cancer Foundation is committed to the mission of providing support, education and advocacy for children and adolescents with cancer, survivors of childhood/adolescent cancer, their families and the professionals who care for them. This is another great resource for parents of kids with cancer, or anyone looking for information. We received several free publications at the time of Kendrie’s diagnosis which helped us a lot, and you should visit the site to see what they have to offer.

As you might remember, we took part in the Leukemia & Lymphoma’s Society Light the Night fundraising walk in Atlanta last October, with our team raising close to $4,000. The Light The Night® Walk is The Leukemia & Lymphoma Society's nationwide evening walk to raise awareness of blood cancers and funds for cures. Participants carry illuminated balloons to celebrate and commemorate lives touched by cancer. Funds raised support the Society's mission: cure leukemia, lymphoma, Hodgkin's disease and myeloma, and improve the quality of life of patients and their families.

There’s a little bit of controversy within the world of pediatric cancer and the fact that the vast majority of funds raised by LLS go towards research to cure adult cancers. The same controversy surrounds the LLS’s other major fundraiser, Team in Training activities. I’m not going to quote the actual percentages, because it’s depressingly low and that’s not the goal of this journal entry. I understand the stink …. and naturally I wish more of their funds went towards pediatric cancer research. But I consider LLS to be a “roundabout” hero and believe that any money raised will help in some manner….. also, I think that knowledge gained through adult cancer research can hopefully be applied towards our kids, to help them fight their battles as well.

Another "round-about" hero, in my opinion, is the American Cancer Society, whose Relay for Life walks are currently taking place all over the country. Relay For Life is a fun-filled overnight event designed to celebrate survivorship and raise money for research and programs of the American Cancer Society. During the event, teams of people gather at schools, fairgrounds, or parks and take turns walking or running laps. Each team tries to keep at least one team member on the track at all times.

Again, the stink is that the ACS only donates a minuscule percentage of its funds to pediatric cancer research. Just like the LLS, the reasoning is that cancer strikes more adults than it does children, so the vast majority of the money should fund adult cancer research. I understand that, but as the parent of a child with cancer, it’s very discouraging. Again, that’s not what I want to dwell on.

I thought I would share with you some photos of our local Relay for Life event that took place Friday night. The elementary school that my children attend put together a team of teachers and administrators, and was kind enough to include Kendrie, another student at the school who had AML, a parent volunteer, and Blaine, as their “honorary” team cancer-survivor members. We had never taken part in Relay for Life before (shoot, I’ll admit it, before Kendrie got cancer I had never even heard of it!) but it was a very neat event last night and I’m glad we did it.

Now, I am not a particularly emotional person, but have to tell you how poignant I found the survivor’s lap to be. That’s the first lap of the walk, where survivors walk one lap around the track, to a continuous standing ovation from all the teams at the campsites. Naturally, I was running from one spot on the track to the next, trying to stay ahead of the walkers and hoping to get some good photos of our team. Our team was bringing up the rear (and I mean the VERY rear!) and when I saw them walking past, waving to the crowd, and saw how cute Kendrie looked, something just came over me and I welled up while I watched them walk past. In fact, for a brief moment, it occurred to me that half of the most important people in my life were walking a “Cancer Survivors Walk” --- how surreal is that? My husband AND my daughter. I’m sure I’m not the only one in that unique position, but it was emotional for me, nonetheless. For about half a minute … then I had to run ahead to get another photo.

But my opinion is that even though the ACS and the LLS often receive a bad rap in the pediatric cancer world for not doing enough to help our kids ……… the thousands and thousands of “normal” people who walk the laps, and run the marathons, and ride the bikes and swim the lakes and hike the canyons and raise the money ---- THOSE people are Heroes, too!

Along those lines, I have a few individual people I’d like to spotlight, and one more organization, but that’s going to have to wait for the next journal entry. I’m worried this one is so long I’m going to blow out the Caringbridge servers as it is.

Mainly, I wanted to let everyone know that we appreciate all that our heroes, known and unknown to us, have done to make our lives easier these past two years.

Hope you are all having a great weekend,

Take care,



Today was a pretty good day, although I was tired and grumpy from being out so late last night at the walk. Plus, mom bought me a blinky-light-necklace at the race last night and the cheap piece of crap didn’t work today. Ugh. And I was tired from doing that walk -- I don’t think I want to go back there ever, ever again.


Hey! Brayden found the battery that fell out of my blinky-necklace right before bedtime! How cool is that?? Now it works again! I LOVED that walk and can’t wait to go again and buy another necklace next year!

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