Most of you may not know that BEFORE my career as a photographer I spent seven years working for the American Red Cross and National Marrow Donor Program. I both recruited volunteers to join the Marrow program and coordinated unrelated stem cell transplants for people with blood diseases. When someone is diagnosed with a blood disease and regimens of chemo and radiation fail, the last hope for a cure is often found in stem cell and bone marrow transplants. If a match is not found in the patient's family they are forced to look else where for a donor. The National Marrow Donor Program registry houses hundreds of thousands of willing donors waiting to find their match. On a daily average there are 6,000 patients searching for donors. Over the course of those years I met MANY families that lost loved ones to blood diseases. I also witnessed the triumph of people that survived these diseases... never a dry eye when you get to witness patients meeting the donor who saved their life! And I have to say the people i was surrounded with at the NMDP changed mine!
So when I was asked a few days ago to shoot the Spady family there wasn't really a question. This family has been challenged this year. Not only has Kim fought breast cancer these past two years, Caleb was diagnosed with a brain tumor called a Diffuse Intrinsic Pontine Glioma ("DIPG") on April 3, 2008. See below for Kim's synopsis of his condition;
"Caleb has a Diffuse Intrinsic Pontine Glioma. We call it a brain tumor, but what it really is is cancer that is spread through the pons area of his brainstem. It is inoperable because the brainstem is the center of operations for the body – everything that goes out goes through that area. Dr. Warren explains the cancer by using this analogy: Picture a handful of sand tossed into a patch of grass. Now try to remove every morsel of sand without even touching a single blade of grass.
That is impossible, of course.
The only treatment that reliably knocks back a DIPG is radiation therapy. This is not a cure for the vast majority of children – it just buys them more time. After radiation is complete, the children have what the doctors call a "honeymoon". The honeymoon often lasts between 6 and 9 months. At some point, the cancer usually starts growing again.
Until that happens, though, there is nothing that can be done. The doctors have not found any way to get ahead of the cancer to keep it from growing and consuming the brainstem. That’s why Caleb isn’t on any treatment right now. There isn't anything available to him that has shown any promise.
After radiation is complete, the parents of a child with a DIPG always ask "What now?" It’s so scary to think that we are just going to do nothing but wait for the cancer to start growing again. We are invariably told "There is nothing now. Just go home and enjoy the time you have with your child."
On November 12th of this month they found out that Caleb's tumor is growing. Now, I spent a little over an hour with these boys and you would NEVER guess that this little man has such a monster growing inside of him - or that the family has faced such pain-staking times. They were full of life and joyful. JOYFUL.
SO ~ Here is where we come in. I took the pictures - here is the sneak peek.... They are going to need these pictures.... and we all know that Beth Jansen Photography can drain the pocket book. SO, I'm asking YOU guys (anyone and everyone) to donate some dinero for their 'pictures'. My goal is to raise $1200 (the cost of buying the digital prints). I will GIVE them lots and lots of pictures & digital copies and hand them the donated money from you to use towards Caleb's treatment, research, a night out... So, if you'd like to help out email infobethjansenphotography@gmail.com and let us know who you are, what you'd like to say and what you'd like to donate. 100% of your donation will go to the Spady's! Cortney will then contact you and the Spade's will get a the full list of donors! PEACE!
Tuesday, November 18, 2008
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2 comments:
Beth,
I have never met the Spady family, but I consider Kim a great friend. We met over a year ago through our shared love of cooking and she has been an amazing inspiration to me. You captured their family so beautifully! What a great gift these pictures will be to them.
Amy
Wonderful pictures! I know Kim and Ken Spady and you captured the family, beautifully.
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