“And we can break through
Though torn in two, We can be one…
I, I will begin again”
Paul Hewson
New Year’s Day
WHEN SHE CHECKED INTO THE HOTEL last Tuesday – and knowing she was going to spend a dreadful Christmas holiday in a hospital bed – I was more concerned than I’ve been at any point in this almost two-year old leukemia journey.
Jenn was frail, gaunt, blank-faced and hadn’t really eaten anything of substance in three weeks.
Many of you have asked, inquired politely or simply followed this second trip into the gruesome world of cancer for my beautiful wife, Jennifer Ford Aparicio. We are eternally grateful that you care. But sometimes it has been hard to express how we’re feeling, especially when I’ve bumped into folks in the real world who ask “How is she today?” or the more familiar John Harbaugh refrain: “How’s our girl doing?”
As I wrote when this second cancer journey began in late September, sometimes you really don’t want to know how she’s feeling.
We’re doing our best to learn about leukemia, bone marrow transplants and graft vs. host disease as we go, and give you the most accurate information as we know it so that our friends, family and loved ones understand the reality of her path. Writing about it here also gives us a chance to tell the story once – so that we don’t have to do it a thousand times as folks ask one by one. As you’ve read, it’s very complex and there’s no elevator ride timetable that can accurately portray what’s been happening to her during this battle.
She’s home now after nine more days at The Hotel, resting and recuperating. The war is not over – we know better than to be overconfident – but there’s a legitimate chance that we may have finally fought our final battle before returning her to safety and a cancer-free future in 2016.
After her leukemia returned on September 29th, we were told in early October that a series of things needed to happen:
She needed to get into the hospital for chemotherapy to clear out the cancer and then hope that her initial donor, a 21-year old man from Germany who saved her life on June 26, 2014, would agree to send more lymphocytes to save her life again. If not, she’d need to go back to the bone marrow registry for a new bone marrow transplant from another donor.
Just 22 months ago, there were only two perfect matches for Jenn on the international registry. Now, there are NINE. It makes us feel that our 30-30 #GiveASpit Tour this summer at Major League Baseball parks and many awareness and bone marrow donor drives are working all over the world.
Sure, there were setbacks in October and November. And there was plenty of illness in December. Her appendicitis has somehow calmed down. Her blood sugars, volatile for a period of time, have normalized. Her appetite, all but gone for long stretches, is now slowly returning even if her stomach has shrunk. On Tuesday night at the hospital she said, “I’m feeling kinda hungry but I’m really full.”
Yes, many things we’ve seen and heard haven’t made sense on the long, strange trip.
We don’t ask “why?”
You can’t judge it when you’re living it.
On November 19th, her German donor/angel sent another bag of blood that set off the graft vs. host disease that the doctors were looking to ignite a cure for her cancer. Earlier this week, via a painful liver biopsy, her doctors confirmed that her extreme illness over the past month was indeed GVHD. Her donor cells attacked her body – as intended – and hopefully, attacked the leukemia that was looking to kill her.
She’s on a massive amount of steroids that will probably create their own sets of issues and side effects.
She came home on December 30th, just in time to see the ball drop and if this goes well there’s a real chance that we might never see another overnight on the 5th floor of the Weinberg Center at Johns Hopkins.
I’m obsessed with keeping her alive.
I’m focused solely on her surviving this nightmare.
Every single day, every single decision over the past 100 days has been about keeping her …