We are very lucky and we show our gratitude every day, today in particulary, to Hiltrud her donor and all the doctors, nurses, technicians, therapists, family and friends who has gotten Haley to where she is now.

We’d like to all resume our daily normal lives, but we’re realizing finally that such is not the plan for us, not yet anyway.

To honor the now known donor, Hiltrud, and her generosity to Haley and to our entirely family, we celebrated the “Day of Giving” for the 4th year in a row. The first year was to support Uncle Pretty in his inaugural head-shaving event to raise money for cancer-stricken kids. The second year was donating things to animal shelters, the salvation army, and other charities. Last year, Haley’s class (along with Anna) made a mural for the Hem/Onc clinic at DC Childrens. This year, we focussed on the doctors, nurses, therapists, and babysitters that helped over the years. On the theme of painting, which both Haley and Anna are into these days, we bought 20- 8×8 canvases, and taped them together to make one giant singular canvas. Anna and Haley then took opposite sides, and made a painting, entitled, “Night of Hope.” We took a picture of it,

then divided up the painting, to give all of the doctors, nurses, therapists, and caregivers that have helped Anna and Haley along these challenging but triumphant years.  We hope if you’re reading this, you do something for someone else and keep this “Day of Giving” in mind and do in honor of Haley’s donor, Hiltrud (who also got a canvas).

So many people called and emailed and texted. Thank you all so much- we have the best family and friends in the world.

The name “Hiltrud” is a name like “Minerva,” or “Minnie,” one that has run its luck. No one of our generation bears that name.  I looked it up. “Hiltrud” means”strength,” which is the same meaning as one of Haley’s names, “Gavriella” (Hebrew female version of the name Gabriel).  It gives the blessing, “may you go from strength to strength” very personal meaning. next step: to write to Hiltrud to find out what she likes to eat…

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.

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 parents say it’s a day they hopegoes 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 she was not going to be denied 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.  As Haley gets better slowly, you forget things, like 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!

Dear everyone:

This is Haley. Sorry i’ve been away from the blog. I’ve been busy, but I wanted to catch you all up. I’m happy to say, I’ve been healthy enough to stay away from hospitals. So healthy, that next month my mediport comes out!! And aside from blood tests here and there, and intense physical therapy with fabulous PT Jaye, I’ve been a fairly normal kid. I just realized that, though I’ve only surveyed the bellies of my classmates and family members, I’m likely the only one with a feeding tube.  I kinda like it, but mom and dad say, if all goes well, it should come out within a year. that’s a good thing, i know, since most kids on feeding tubes lose the hunger sensation, urge to eat, want or appetite, and chewing and swallowing mechanisms start atrophying. at first, i didn’t want to eat anything. everything tastes like chicken, and i hate chicken! but i still eat my way through matzo ball soup, and have expanded my nut repertoire from peanut butter to actual peanuts, and even cashews. with the feeding tube, i’m on and stay on the growth chart. and with all my nut-induced energy, i can finally jump and lift one foot off the ground without holding on or falling over. i still have walking issues, and digestive bugs that are bugging me, but i’m getting there!

in honor of my donor this holiday season, along with bestest big sister in the world anna, i donated lots of toys and clothes. and in honor of me being strong enough to help someone less strong, i helped paint a disadvantaged community center.

i hope y’all have wonderful holiday celebrations.and brendan, if you’re reading this, or your parents are reading this to you, i know what you’re going through. literally. but my money’s on you. here’s hoping a new year of strength and giggles to everyone!

love, haley

That is what Haley answers when asked what flowers smell like. In fact, if you ask her what peanut butter smells like, she’ll say chicken, too. This is because Haley has Anosmia (inability to smell), either total or partial. In an earlier blog, we suspected she couldn’t smell, and indeed that is what she was just diagnosed with.  Whether it’s the olfactory nerve itself got damaged or some other part of the process is not clear.

What is clear is that this is a major reason why it’s so hard to stimulate Haley’s appetite. Imagine eating with a cold.  You can taste salt, sour, sweet, bitter, but you cannot detect flavor. You can taste the sugar in ice cream, but not if it’s chocolate or strawberry.  When you chew food, the flavor molecules in the food get released, and as you breathe while you chew, you actually inhale those molecules.  The great thing about this discovery is that to stimulate her appetite, we ahve to think of different means. Visually she might be interested, but then she gets disinterested.  Luckily, we watch a lot of top chef, and know how to make an amuse bouche. Maybe Haley’s every meal is made up of 7 different amuze bouches.  of course, not sure how many ways one can combime  matzo balls soup, peanut butter, cashews, and almond milk.

We have a visit to Sloan Kettering soon, so more updates to come.

As for preschool, she loves it. Ironically, her favorite toy is the medical kit. check out new pictures of haley in school.  the glasses aren’t real.

There aren’t many sights as delightful as a child giddy at the mere thought of something. That was Haley, so excited for her first day of school.  She came fully-equipped: thermos of hot matzo ball soup, cashews, soy-free snacks, almond milk, and tonsand tons of diapers.  the new schedule is school,then physical therapy with the fabulous Jaye. Her day starts and ends with a few spoonfuls of peanut butter, and, too give her even more energy, at the ened of the day so she can’t burn it off, a blast of probiotic smoothie (through the feeding tube, god forbid she should actually want to put it into her mouth).  So far, her favorite thing seems to be playing a pink plastic ruler and singing into the mirror.  The worst part of her day is about an hour into the morning when she realizes she’s not going home any time soon.

Given the fact that she has never been in any type of class or group play environment for more than a half hour, she’s doing extremely well.  Her school so far is being very supportive, and willing to adapt to Haley’s needs.  We will be retesting her allergies, as well as testing her smell capabilities, and, now that we have found an orthopedist, will be going to her soon as well.  Haley wears orthotics now, and that seems to be a doing a great deal of good, so hopefully there will be no procedures in Haley’s future.  Hooray for this amazing girl, who made a small but very important step!