Thursday, December 08, 2005

7 SWANS A SWIMMING (oh, wait, wrong song)


7 Days to Go!

Not that you ever *want* your child to get cancer, of course, but if it’s going to happen, it’s great if it happens in Georgia. Well, wait, that didn’t sound quite right. Hopefully you understand what I’m trying to say. The whole thing blows, but I don’t think there is anyplace else in the country we could have gotten the same kind of amazing social support that we have received here.

It’s funny (as in ironic, not as in ha-ha) when you’re in the military and you think you know where you’re going and where you will live and what your next job will be, and you have a 3-yr or 5-yr or 10-yr plan for your career …. and then nothing goes as planned. There were two places we were supposed to go instead of Georgia, but like a giant-falling-domino-game-of-LIFE, and assignments that didn’t work out for one reason or another, this is where we wound up. Robins AFB, Georgia. And, it’s exactly where we needed to be. Fate? Luck? Divine Intervention? You choose… I already know what I think.

Not only is Kendrie’s hospital, Children’s Healthcare of Atlanta, Scottish Rite, ranked in the top three for cancer services by "Child" magazine, the Aflac Cancer Center was completely renovated and redone last year and is like the Rolls Royce of pediatric cancer clinics. Not only do they have arcade games and pinball machines and dvd players and personal tvs and games and books and magic screens and big screen TVs (even in the sedation rooms!) and child-size furniture and a stocked kitchen …. But the doctors and nurses and personnel have been wonderful to us. Most importantly, they have taken excellent care of Kendrie and treated us kindly …. We weren’t just another patient family, ever. I can’t imagine getting her treatment anyplace else, and thanks to Uncle Sam agreeing to let us stay here in Georgia for six years total (something that is unHEARDof in the military!) we won’t have to. Hey, you didn’t think we were staying here because we enjoyed the ants and humidity, did you? We're tough, but we're not that tough!

Medical bias aside, another reason we are so fortunate is the vast network of organizations in the Atlanta area that support pediatric cancer patients and their families -- socially, collectively, emotionally. Other families have become like extended family to us. I normally run into at least one family we know at clinic, often several. Sometimes we’ll meet for lunch beforehand, or go out for lunch after our appointments. If you’ve never appreciated the significance of peer-support, well, you sure would if you lived here and experienced this like we have.

My online group is great … hundreds of leukemia parents … they *get* it. But these other Georgia parents, some leukemia, some brain tumor, some neuroblastoma …. and others …. They get it as well. And even better, we get to meet and hang out and laugh and cry and pray and socialize and bullshit with one another, thanks to the organizations that understand what a benefit that is for us, and work so hard to make it happen.

So let me take a moment to thank 7 Super Social Supports and what they’ve done for our family (even before we realized we needed support!)

7SSS #1:

CURE Childhood Cancer --- the first group to reach out and help us .. our very first day in the hospital! Bringing us a Welcome Bag and inviting us to their weekly Open Arms Gathering at the hospital, I was still too "deer-in-the-headlights" to fully appreciate this at the time, but I sure do now. We also appreciate the fun events they plan for local families each year, like their annual CURE Family Picnic (photo above) and the Off-Treatment celebration they hold each year at Six Flags --- reserve our spot for the 2006 Celebration NOW!

7SSS #2:

The Lighthouse Family Retreat --- there just aren’t enough wonderful things to say about this organization and the people who run it. Begun in 1999, 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 explain how great this was and how great it was to spend time …. real, quality time, with other families. Families who became friends. We’ve been fortunate to attend twice, and have already begun saving our pennies so we can go back as a volunteer family in a few years. If they'll have us, that is. *That* might be still up in the air. :)

7SSS #3:

Another fantastic Atlanta organization run by wonderful people: Camp Sunshine. They have a Camp Sunshine House in Atlanta where they offer family support group meetings, spa nights (my favorite!) and all kinds of local activities. If we lived in Atlanta, we’d probably be there so much they’d issue a restraining order against us. As it is, we consider ourselves fortunate that we’ve been able to attend so many of their events; several Family Camp Weekends at Camp Twin Lakes, Middle Georgia Support Group Get-togethers, Big Apple Circus, etc. Next summer, I think Brayden and Kellen want to attend Sibling Camp … and since we are living here in Georgia a few more years, Kendrie will even have a chance to attend as a camper herself. Not that I think she’ll ever be that courageous, considering she still tries to sneak into bed with us most nights, but it’s good to know it’s there if she wants to!

7SSS #4:

“CureSearch unites the world's largest childhood cancer research organization, the Children's Oncology Group, and the National Childhood Cancer Foundation through our shared mission to cure childhood cancer. Research is the key to a cure.” Although it’s a national organization, CureSearch offers local happenings for families, fundraisers, and special events like the Quiet Heroes Luncheon I got to attend this fall, with 100 other mostly-local cancer moms. The photos above were of us at an Atlanta Braves game, tickets courtesy of CureSearch.

So as you can see, we are the fortunate beneficiary of some great Georgia support. There are other organizations that have helped our family as well, for which I’m grateful:

7SSS #5:

Supersibs! has made sure Kellen and Brayden haven’t been lost in the shuffle or overlooked during this process. Ok, who are we kidding? Of course they’ve been overlooked at times! But the trophies and t-shirts and cards and newsletters that they receive from Supersibs! do help them to feel less neglected. It has certainly helped balance the extra attention that Kendrie has received. Kendrie, of course, would deny that.

7SSS #6:

I don’t have a photo for Candlelighters, unless I go to my kids’ bookshelf and take a picture of all the smart, sweet, funny books about kids with cancer that I’ve received from them. As new books come out, like “The Amazing Hannah”, “Oliver’s Story” and “Chemo, Craziness and Comfort”, they are offered free of charge to cancer parents. Those books have been very helpful to Kendrie and her siblings, especially at the beginning of her treatment, and I appreciate receiving them. Let’s be honest, the “I’m a Kid and I’ve Got Cancer” section at the local Barnes & Noble isn’t that big …. so this was a real help for our family.

7SSS #7:

When Kendrie was first diagnosed and in the hospital, the social worker came to talk to Blaine and me about all sorts of things … supplemental insurance, educational programs, financial aid, counseling services … and near the end of the conversation, she sort of threw out there, “Oh, and don’t forget, Kendrie will be eligible for a Wish now!” A Wish? A WISH??? Like something those dying kids get????? I burst into tears …. who wants their kid to be eligible for a Wish? (In hindsight, I really think that lady should be trained to handle the situation a bit more delicately.)

But eligible we were, so we took advantage of the opportunity for our local Make-A-Wish chapter to send us to Disneyworld/Universal Studios … the very trip we had planned as a surprise for the kids, scheduled for the month after Kendrie was diagnosed. (Whew! Thank goodness we hadn’t actually told them about it! They’d STILL be whining about not getting to go!)

While in Florida, we stayed at the single most remarkable resort village in the world; Give Kids the World. You have to be on a Wish Trip to stay there, and you can only go once, although you are allowed to go back anytime as a Day Visitor. I’m not even going to try and put in words how much we loved this village. You can go back in my journal history to last February if you’re interested … but suffice it to say, when I grow up, I want to work at GKTW.

So, all this waxing nostalgic about the opportunities afforded our family by these organizations leads me back to a perplexing situation I have found myself in before …. How can I feel lucky that we’ve gotten to experience these things, and still stay grumpy (as is my nature!) about the cancer in the first place? The comment “Relax, enjoy, your family deserves these things” annoys me as well. We didn’t do anything to deserve these things, any more than Kendrie did anything to deserve cancer. And it’s hard to stay mad at cancer when I feel so blessed about the chances it has given us.

As grateful as I am for all these things, and these organizations, and the heroes who run them, I’d trade them all back. In a heartbeat. Except for the friends we’ve made. Those, I don’t want to give back. But that's it. Otherwise, back it goes.

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