Beauty and Strength

Earlier this week, I had the opportunity to spend a bit of time with a few amazing children. I’ve needed to blog about our time together since our playdate on Tuesday, but I’ve put it off. I’ve not felt I had the words to describe them… or the experience… or the impact that these kids had on me. But I can’t put it off any longer… I hope you will forgive me if my post is less than articulate. I’m going to stop overanalyzing what to say, and just say something.

I hope you are inspired and challenged by these amazing children… and their equally amazing families.

On February 20, 2006, a Chattanooga family lost their 2 year old little girl to a type of cancer called Neuroblastoma. That little girl’s name was Emily, and on this past Tuesday, I had the opportunity to meet her family, as well as five other families who are currently battling this horrible disease.

I want to take this opportunity to introduce you to five amazing children. I want you to really see them as I had the opportunity to see them on Tuesday. I want you to realize that without proper research and development of treatment… these children could suffer a fate like the one that Emily suffered. I just spent 20 minutes trying to figure out how to type that… how to talk about death in words that would somehow mask the horror of it all. It’s not possible. It IS horrible. I hope you all see that. I hope it changes you.

I’m a little bit in love with little Colin. I met him and his family last summer… and through that meeting, I have had the opportunity to learn more about Neuroblastoma. Colin’s mom, Mindy, has been so generous with her time as I ask question after question about this disease and about these awesome kids.

Colin is 3 and a half, and because his cancer was found early (at age 14 months a nurse noticed something during an exam… that “something” was a tumor the size of an adult fist!), his treatment has been very successful. As of February 2009, Colin has completed treatment and is considered NED (no evidence of disease.) Colin has the most amazing eyes. At not quite four years old, Colin has the eyes of someone much older and wiser. He’s already seen more than his share of struggles, yet he is surrounded by amazing parents and an adorable brother (and another on the way!), and it looks as if his path may be smoother from here on out. I can only imagine what he is thinking…

I was really excited to meet Peyton. Peyton is 3 years old, and has been fighting Neuroblastoma since 2008. He has dealt with a battery of treatments including 6 rounds of chemotherapy, stem cell transplant, and radiation. As of November 2009, Peyton had completed his treatment and is NED.

Peyton has a smile that rocks my socks off. He was very unsure of me at first. We met in a large group of people, and I didn’t have the time to get to know him in the way I generally get to know my kids… but once he dove into the fountains at Coolidge, I saw him transform. His smile was like a little gift, just for me. I’m fairly certain that as you look at the second image of him… you’ll find yourself smiling. Count yourself lucky, because I considered keeping that smile all to myself :)

Sweet Maddie has been a part of my life for years… only I didn’t know her, and she didn’t know me. Since my Austen was just a toddler, my friend Kathy has been praying for Maddie. She and Austen are very close to the same age. Kathy would regularly show Austen Maddie’s carepage, and when Austen saw Maddie’s picture on my computer, he knew exactly who she was! He’s “known” her for years now!

Maddie was diagnosed with Neuroblastoma in 2005. At this time, her disease is considered stable, but she has never had completely clean scans. Maddie is a beautiful 8 year old. She was hesitant towards me at first, but after a few moments, her hooded gaze opened up, and I feel like she gave me a clear view inside herself. I can only try to imagine what she must think of the world right now. It was so awesome to see her shed her hesitancy and let the Coolidge fountains work their magic on her.

Sarah is fiery and wonderful. I seriously wanted to tuck her into my camera bag and steal her away. This girl is tough. She is a fighter. At age 11, she’s been dealing with Neuroblastoma since she was 6 years old, and other than a brief remission in 2006, she has been in continuous treatment. She has been in and out of various types of experimental treatments, and thus far, nothing has beat the disease. But I’m going to go ahead and tell you what I think.. I think Sarah will beat it. Because like I already said… Sarah is a fighter. I snuck this stunningly beautiful girl away for just a few minutes and asked her to talk to me while I grabbed a couple of pictures of her. In response she said “You only get one chance. If you miss the picture, then oh well. I don’t like pictures anyway.” I think the resulting two images say so much about her. I refuse to believe that anything can take that spirit away.

At 13 years old, Tristan is the oldest “child” in the group. In August 2009, Tristan started having severe stomach pain. This pain progressed to pain in his lower back and stomach, and finally, in March of this year, Tristan was diagnosed with stage IV Neuroblastoma. He has 15 months of treatment ahead of him, including chemotherapy, stem cell treatment, radiation, and antibody treatments. Tristan’s story really broke my heart. I didn’t learn about his situation until after the session was over, and, honestly, even with his chemo-ravaged hairstyle, Tristan just didn’t seem sick. He joked and kidded with me when we spent a few minutes one on one. I was amazed when he told me that he is only 13, as he is taller than I am, and he has that dry humor that’s more often found in adults. He seriously appears to be taking this whole thing in stride, and while that’s admirable, it just feels so horribly unfair. He seems like such a big strong guy, so full of good humor. It angers me that he is having to deal with something so out of his control, and it humbles me to see him accept it with such an amazing spirit. I can only pray that his battle against “this Thing” (see his carepage to understand more) is as quick and painless as possible.

I haven’t had the chance to learn as much as I would like (and I do plan to learn much much more) about Neuroblastoma and the children that it affects, but Mindy (Colin’s mother) gave me some numbers that are sobering… particularly now that I have names and faces to attach to these statistics.

Neuroblastoma has a survival rate of 50%.

All of the kids pictured in the introductions above have high risk Neuroblastoma which decreases their survival rate to 30%.

There is a 60% chance that a child with Neuroblastoma will relapse.

If a child with Neuroblastoma relapses, their chances for survival decrease to 10%. I really don’t like those odds.

The statistics that I shared with you above have been the same for the last 30 years! 30 years of research and progress in the medical community at large, and yet there has been very little progress in dealing with this disease.

This is Wendy Ransom… Emily‘s mom. The adorable little girl is Emily’s little sister, Molly. Molly didn’t get to experience having Emily as an big sister, because this horrible cancer took that opportunity from her. This is such a devastating situation, yet Wendy and her family have not just allowed Emily’s death to wash over them and destroy them… instead, they have rallied, and are working to gather people together to fight against this disease.

I am so thankful to have spent just a few moments in the presence of these beautiful and strong kids. I needed those few hours to jerk me out of my personal safe zone. I’ve had 8 wonderful years with children who are healthy. I have had 8 years where my life has not revolved around fear of fevers and cell counts and scan results. I’ve been inclined to stay inwardly focused… to just be happy that it’s not my family.

But I looked each of these children in the eye… I heard their voices… I saw their parents and their siblings. These are not faceless statistics. These are families, in my community, who are fighting.

I’m going to fight with them.

I want to share just a few more images of these amazing children and their families.

I hope something in this blog post inspires you to help. Help by donating your photographic skills to a family fighting against Neuroblastoma in your local area. Help by donating something to the upcoming Pink Bandana Ball. (I have donated a session to the silent auction, and I plan to do anything else I can think of to continue to support this amazing group of children.) Help by Pinking it Forward. Help by financially supporting Emily’s Power for a Cure. In the past 4 years, this organization has been able to do remarkable things in the area of fundraising… help them do more!

I promise to keep my eyes open in the future. I could have been Colin’s mom or Peyton’s mom. I could be Maddie’s mom or Tristan’s mom or Sarah’s mom. It’s certainly easier to live a life that feels safe, and to ignore the struggles that go on around me… but I won’t let myself do it anymore. I’ve put faces on the statistics, and I will fight for them.

At any moment, it could be me needing someone to fight for my family, for my Austen and Addison. And I know from the tiny bit of time I spent with these 6 families today… everyone one of them would fight for me. Because they know what it’s like to be fought for. Because they know what it’s like to fight.

Thanks so much to these families for sharing a moment in their lives with me. It won’t be forgotten. I’m here, if any of you need anything at all. Please don’t hesitate to ask. I want to help.

much love.

-amber