Haley’s Giggle

Haley has rejected Grammy’s meatballs. For those who don’t know about Grammy’s meatballs, they are irresistable (except to one notable vegetarian, and even to her they smell good). I mean, they’re legendary in the backstreets of Silver Spring, MD. And Haley wouldn’t even take even the tiniest bite. This of course is not only devastating to Grammy, who lives to feed her family, but it is yet another food not eaten by Haley. I thought tapering off the Tacrolimus would do her good,but so far, no results on either the eating (or walking).  So please, anyone with an idea, please bring it forward. She desperately needs to gain weight. I’d take an ounce at this point.

To mark the occasion of Haley’s one year anniversary, my brother (uncle pretty), his best friend Scott, and a few others shaved their heads to raise money for St. Baldrick’s (they raise money for kids with cancer, and Haley was included since her disease was pre-cancerous. At a small ceremony in Chinatown, Scott presented a plaque to Haley, to honor her bravery. But because it was way passed her bedtime, Dad, Gramps, and Uncle Pretty were there to receive it). Shaving his head was particularly hard on my brother, since he’s in the middle of hockey season and needs his ”good hockey hair” (read: long, wild, and messy) to play well. So, thanks, Uncle Pretty, for doing this. You’re still as pretty as always. Thanks to Scott for arranging this all in Haley’s name, and thanks to the other random people I don’t know who saw Haley’s story on  the St. Baldrick’s website and decided to shave their heads in her honor. And to Pumch, Yair, and Jhorse, who also shaved their heads to raise money for St. Baldricks: sorry y’all got mistaken for some skinheads the other day, but it’s for a good cause.

Big hugs to dave in new york and josh in new zealand.    

Dear Haley:

You were born in a storm.  Your face was so black and blue from all the bruising, that the nurses thought you weren’t getting any oxygen.  Six hours later, the doctors put their arms around me and said they were doing the best they could, but they didn’t hold out much hope.  You weren’t supposed to even make it past Day 1.

And here you are, a new Day 1.  The only Day 1 that now counts. You are here because of the doctors at Sibley who kept you alive until you got to Georgetown’s ICU, the doctors at DC Children’s who diagnosed you correctly with CAMT, the doctors at Sloan Kettering who did not miss a step from moment one of your transplant, and of course all the nurses who spend countless hours attending to you, administering love with every cc of medicine.

Mostly, Haley, you are here because of you and your own strength.  I think of the eventful day at the hospital this time last year– all the fears and anticipations held in a single syringe full of new bone marrow cells. We sang the ABCs and Bob Marley. We watched a college basketbal game that day through the bars of your sterilized crib, while your family, friends, doctors, nurses, and the world around you were all praying for your survival. But in the end it was all you– so much strength and resilience in such a tiny little body.

Watching you go through everything with such grace, there’s not much by way of advice or wisdom anyone can impart. There is one wish, though, sweet, giggley Haley: that there is never another time in your life that requires so much strength, but if you ever find yourself in a tight spot, know that there exists in your more strength and light to get through anything.

Happy (new) Birthday, Haley. We all admire you so much and love you even more. We can’t wait to watch you grow.

This time last year, Haley was on her day of rest– she had just finished all of her crazy chemo regimen, and she was waiting — marrowless, defenseless against the smallest of viruses, hooked up to more medicine than I’ve taken in my lifetime, vomiting constantly, looking pale and being too weak to flap her arms at Dr. B.– waiting for the next day, when she would be given a second shot at life.

Today, Haley got very sick, 103 temperature, but it is no longer life-threatening. We don’t have to rush her to the hospital and douse her bloodstream for 3 days with round-the-clock antibiotics. We can just give her tylenol, kiss her goodnight, and check on her as a normal parent would a sick kid. 

Today is the last day. This is not the last day of Haley’s medical hurdles; to be sure, there is still a long way to go. But it is the last day of sanitizing toys with boiling water and vinegar. It is the last day of keeping the bag of extra medical supplies in case of an emergency. It is the last day that all the HEPA air filters will run (though I think we might keep on around, just for cleaner air).

It is the last day of a terrible year that luckily she will never remember. And most importantly, this is the last day of any doubt that the CAMT, even a trace of it, is lurking inside her somewhere.

Here’s wishing a great Last Day to Haley, and a year from now, to Dave up in New York and to Josh in New Zealand. Here’s hoping this new year goes by as quickly and painlessly and with little to remember.