Katie & Ellie: One Year Later

I've been spending time with the Whatleys now for almost a year and a half. While documenting their family- and a handful of other families here in RVA- I hope to give a more accurate perspective of pediatric cancer to those with an "outsider's" view. But there's no way I could do this without their willingness to invite me in to their journeys. And I continue to be blown away by how they've graciously shared with me some of the most private and painful moments that a parent can endure. On February 2nd, Ellie- their youngest- underwent a bone marrow harvest to extract the cells needed for Katie's upcoming bone marrow transplant. During the procedure, they punctured her pelvis over 100 times in order to draw the healthy baby marrow that would hopefully save her older sister's life. I was there when they carried Ellie away for the surgery. And I watched helplessly as Amanda fell apart- first in the arms of their doctor (who also later admitted that she had to take a moment to compose herself before going into the OR)- and then into the arms of her husband. It all felt surreal, almost like I was on the set of a movie. Maybe it's because we rarely see these kinds of moments that tend to happen behind curtains and doors. There are the "safe" places to go and fall apart, to scream into a pillow, to pick yourself back up before you face your children again. But all bets are off in this situation. The risks and stakes, both, were so high. To this day, I will never forget those few minutes in that hallway.

The next day was transplant day, and Katie's re-birthday.

Katie had written on the back of her hands because at one point during her preparation for her bone marrow transplant, she was so worn down from being poked and prodded and feeling miserable, she refused to talk. She wrote basic sentences, and the words "yes" or "no" on her hands and knuckles.

"She stood in the storm and when the wind did not blow her way, she adjusted her sails."

After the transplant was finished, I took my camera to the car and came back to have re-birthday cupcakes and coffee.

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Almost one year to the day later, I met Amanda, Katie, and Ellie up at clinic following one of Katie's routine clinic visits to take a few quick pictures. It's been a rollercoaster year for them, as you might imagine, but as of the last biopsy, Katie's results showed 100% donor cells. Ellie's cells did exactly what everyone was hoping and praying they would. And though Amanda (or any cancer parent) will tell you that they will never be able to relax (even after treatment is "done" and there is no evidence of disease) there are those intermittent exhales of relief- short, sweet, and yet, incredibly nuanced. A Hickman line is removed. Permission is finally given to go swimming. Weight gain. New hair. A clean scan. Hope is there, in some capacity, perhaps waiting for the moment you don't think you can hold your breath any longer.

It was important to me that Dr. Wiedl (the girls' doctor) was part of the shoot, too, so she joined us after she finished with her last patient that day.

At the end of the session, the four of them stood together in front of the Hematology/ Oncology Unit for one final round of pics, and once I had gotten what I needed, Amanda turned to give Dr. Wiedl another hug. Then the tears came again.

And for a second, it was almost like we were all back in that hallway last year.

But this time, amidst the runny mascara and muffled sobs were smiles. And two sisters who, after looking on for a few seconds, scampered off down the hall, giggling.

#rva #mcv #bonemarrowtransplant #bethematch #courageforkatie #childhoodcancer #leukemia

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