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 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!

Dear everyone:

Hello! Sorry i’ve been away, but 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 says, if all goes well, it should come out this 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. and for me, it wasn’t even harder. i didn’t want to eat anything. i mean, 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. and i’ve stayed 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 hooray! 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). I mentioned in an earlier bog that I 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, I’m up on my 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 i 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 it to a small but very important step!

Which brings us to yet another piece of great news.  For the first time since the bone marrow transplant, she has made it on onto her growth chart.  She’s only gained .2 kg, but she’s grown 3 cm.  I attribute all of this of course to her peanut butter/peanut/cashew meals. she still needs her feeding tube, and in fact, we’re asked to grind up food and just push it through, in addition to the formula’s shes been getting.  She’s growing so much intellectually and neurologically still, that she can’t afford to lose calories or nutrients.  The last thing she needs is yet another thing to set her back, and set her aside from her peers. She’s working very hard at walking, running, and jumping.

Which brings us to another bit of news… she’s now going to see and orthopedist.  The orthopedist will set a baseline for her walking, and monitor its progression further. There is always a chance she’ll need leg braces, or even surgery, and it’s good to have someone on track the whole time.

Which brings us to the last bit of news. Whoever the orthopedist is, will be a person who thinks out of the box, and always reaches out for a hug.  Dr. K. Street, and Heartful Hematologist are always there with arms stretched out, even if i don’t offer them first. 

Oh, yes. one last thing. We met up with Favorite Nurse on our way back from Sloan Kettering (check-up, bloodwork).  It was the most wonderful reunion– not having actually seen each other in two years.

that propeller twirls!

After three years, Haley finally celebrated a birthday simply because she was born.  Medical repurcussions of the bone marrow transplant has made us all careful about celebrating anything about Haley too soon.  But while planning big sister Anna’s birthday party, Anna insisted that if Haley wasn’t going to have a party all her own, she would share the day. “She better like hello kitty, though,” was Anna’s caveat.  So be it.

The party was a joint Anna/Haley Hello-Kitty SlipnSlide party at Grammy and Gramps.  Many friends and family came around to slip, slide, and celebrate, and place was awash in Hello Kitty.  After three years, it felt good to sing to Haley other than Diana Ross, Bob Marley, or Mindy Smith. 

Haley also had her own celebration this past Friday, with a few friends and family.  Just as Anna had a hello-kitty cake, Haley had a Pablo (backyardigans) cake.  Thank goodness we had a graphic artist on hand to help with his facial expression.

Haley also went swimming for the first time ever (slip n slides don’t count as swimming).  It was wonderful– especially when she scraped the top of her toes against the bottom of the pool.   Before, such a  thing would have sent Haley into the hospital.  Even though she sees her scrapes as a bunch of boo-boos , i see a wonderful web of working platelets. 

Thank you to everyone who helped us celebrate– it was a wonderful “first” birthday for a 3 year-old who has lived about 3 years longer than she was supposed to.

There is noone who can sound off like my dear little Haley.  No matter how much noise there may be in clinic, i can always tell when she has arrived.  As you may guess, the scale is still a very scary object.  I like to believe that the intensity of her scream is a call out to me – “Hey Dr. G, I have arrived”.  No matter how stressful the day might be, the call of Haley brings joy to us all and lightens the mood.  What i find funny is tht the scale scares her so but i am free to examine her ears without complaint.  She actually helps! I think that she likes to have her ears examined.  Strange.  But that’s our Haley – truly a lovable, adorable little wonder.

I can see the joy that Haley brings to her family and their friends. This same feeling pervades teh halls of CNMC when she is there.  From the beginning she has been in charge and we all know it.  I don’t mind.  In the end, i still get what i want.

Over the years, i have watched this tiny little girl, who could barely hold my finger, go through a number of tests and procedures in order to diagnose her CAMT.  She struggled some through her transplant. I wasn’t concerned.  She is strong and was always in great hands with the MSKCC docs.  Then she returned to me a beautiful little girl.

I can’t wait to see who she will become and of course i can’t wait for the next visit where i know that i will give her yet another part of my heart.