Haley’s Giggle

This is not the face of a sad girl, this is the face of a fabulously goofy giddy girl completely spent after her special day.  Three years ago, her life was filled with chemo and hospitals. Today, it’s mostly about sparkly shoes and peanut butter.  The festivities got off to an unusual start when, over the weekend, Haley took out her feeding tube. Earlier on in this process, I would have flipped out and rushed her to the hospital. After all, I never actually replaced a tube before, nor did I remember how to do it from watching a nurse one time. Out of shear fear of going to an ER at night on a weekend, I did it myself. So far so good, though the tube likely has to be replaced with a new one.

Today, we honored Haley’s donor with  a Day of Giving. At her preschool, with her family present, Haley gave back to her class, bringing in (purple) grapes, and giving out (purple) pom poms and (purple) cookies. Haley and her classmates made a giant painting to be donated to National Children’s Hospital in DC. Anna was the art assistant. Uncle Pretty came to help celebrate the day and talk about shaving his head (that’s him on the left) to raise money for pediatric cancer research. 

Then we went to an animal shelter, where Anna and Haley donated mounds of doggie biscuits and rabbit food, and spent some quality time with puppies, bunnies, and kittens. There was one grumpy chiuahua, 5 lovely lab mixes, 4 pitbull mixes, and one very old mix-mix.  Haley bonded with a lab mix named noel, Anna snuck in extra biscuits to some of the puppies who were sitting quietly. Schneider was on hand to help with the painting and help feed and pet the animals, and share in the “day of giving.” The great day was topped with a fun-filled visit by Grammy and Gramps. Throughout the day, dozens of phone calls, emails, and texts came flooding in, from her wonderful aunts and uncles and cousins and friends, as well as her doctors and nurses. Thank you all for your continued wishes to Haley’s health. It truly means the world to us.

Hi everyone! It’s Haley. Mommy says it’s dumb to start a blog by apologizing for not writing a blog entry in a long time. My sister Anna says it’s not nice to start a blog with the “d” word in it. So i’ll start with my favorite outfit, especially my sparkly purple shoes.  cute, yes? all is forgiven, yes? Good! cuz I’ve been wrapped up in quite a few things. literally.

This is me with Jaye at physical therapy. I play with her three days a week, and once a week, she wraps my legs in kinesio tape. sometmes she starts at my lower back and wraps it across my thigh all the way to my knees. Sometimes it’s from my toes to my thighs. It’s a special way to wrap with the tape, and lucky for me Jaye knows what she’s doing. She tells my Mommy that it helps to realign my muscles that still want to go the wrong way. I keep it on because I love Jaye, and she tells me to keep it on and athletes wear it so i know it’s cool. Mommy makes sure I keep it on because I walk much better when it’s on, I can twirl around almost really fast now, and I can almost walk up the stairs without holding on.  I also can type my own name on a word document, deftly commandeer my Mommy’s Nintendo DS, and forward my Mommy’s cellphone to foreign destinations, all of which i credit the kinesio tape.

Next week, if you can believe, is the three year anniversary of my bone marrow transplant. Many people remember it– and they say it was a tough time. soon, when i can’t just write but i can read this blog, i’ll read about how tough it was. luckily, i’m too young to remember or read. My mommy says it’s a day she hopes goes by uneventfully for the rest of my life. And this year it will … except for Uncle Pretty who will shave his head for it, Anna and me who will get to hug some puppies in animal shelters because of it, and everyone around me who will help me do some happy purply things in celebration of it.

After two and a half years of carpenter nail- thick needles, countless blood draws and line flushes, Haley’s mediport is finally out!  After having  quality time with Auntie Lori, Uncle Lenny, Sam, Jonah, and Alex, we arrive at Sloan even before the desk attendants do.  There were two other patients there, also waiting for procedures. But as bad as it is to deny your already thin kid any food or drink for the 8 hours prior, this is one place that being the youngest matters most: because the kids are fasting, usually the youngest ones go first. Had there been a 1 year old, he or she would have gone first, pushing back Haley. At that time, the playroom wasn’t open, so promised Haley as soon as she was done with the doctors, we could play for as long as she wants.  And aftter two hours, and successful procedure, the first thing Haley wanted to do was ride her favorite green tractor in the playroom. Problem is that the anesthesia didn’t wear off yet, so her ability to stay on the tractor, let alone drive, or even keeping up her own head, but i was not going to deny her the pleasure of the sloan playroom.  And even when an improv group ran a session in the playroom for the other kids, still woozy from the anesthesia,  Haley couldn’t resist trying to twirl across the make-shift like a ballerina along with the other kids.  That playroom was the perfect antidote for what she went through.  I forgot that without the mediport, finding a vein for an IV always proved difficult, and this trip brought that all back into sharp focus.

But despite future sad interactions with the phlebotomist, and although she’s in a lot of pain right now (they reopen the first incision when they inserted the mediport, so it’s often through scar tissue), and more so since she’s allergic to a lot of painkillers, it is a happy day. No more mediport means the doctors are confident in her success thus far.  No more mediport means no more rushing to hospital anytime she has a fever over 99.5.  No more mediport means one less artificial orifice. No more mediport means no foreseen ongoing medication. It’s most definitely a happy day.

Hope you enjoy the latest photos (most are in the “long climb out”) album. Have a look!