Haley’s Giggle

March 15, 2007. The most gloriously uneventful bone marrow transplant.  We were singing the abc’s and bob marley while Dr. B. administered the marrow through a syringe.  Then we watched some NCAA tournament basketball. It was the start of a new beginning for Haley. We are grateful for every doctor, nurse, family member and friend that had and continues to give so much to Haley. Most of all, and on this day, we are especially grateful to the donor, who until today, has remained anonymous. Tomorrow we call, and hopefully find out who it is. Stay tuned for the reveal of the year!

It’s hard to believe that two years have passed. It’s hard to believe how many transfusions she’s needed, how many hospital bracelets she’s refused to wear, how many times we have sung “the train song”, how many times someone has said to us, “only worry when you absolutely have to.”

To celebrate this day, each and every year, Haley will be spending this day giving to others. Today was a day filled with everything Haley loves– family and puppies. First, she and Anna visited her Grammy who had surgery.

Auntie Lori, Auntie D, and Uncle Pretty were there too, along of course with Gramps and Pippie.

Then the girls went to an animal shelter to donate some puppy snacks and play with the puppies/kittens. If anyone could understand what it feels like to be trapped in a cage, even for her own good, unable to touch the rest of the world, it’s haley.  We almost went home with a one year-old Rottweiler, who was the Haley’s favorite.

It was time to go after a short while, but it was clear that the puppies got as much out of it as Haley and Anna had.

This weekend, Uncle Pretty and friends shaved their heads to raise money for pediatric cancer (www.stbaldricks.com), and they’re still accepting donations.  Thanks also to Scoots, Tank, Jakie (though your hair was really short to begin with!), and Doni VW… oh, and the guy cutting your hair who did it at the end. how cool are you guys?!

It’s late and the only thing that is making noise is the tv replaying some college bball.  Haley is thrilled for the maryland terps to be seeded number 10. This year, Haley will be doing the picks. All of them. No one try and sway her, ok?

Today was the second anniversary of Haley’s ATG dose (that’s the medicine that completely wipes out the bone marrow, and was to date the cause of Haley’s worst day).

Just wanted to share this day with you all, since it’s as far from that day as possible.

Two days until march 15th, Haley’s bone marrow anniversary (aka her second birthday), and the day we are allowed find out who the donor is.

Check out the new pics from our recent trip up to Sloan, and meet the new doctor, Nice neurologist!

This trip to the Sloan team had a specific goal: to give Haley another CT scan, and see what if any changes have been for the past two years. The cause for concern was the little “injury” that the neurologists spotted two years ago immediately following Haley’s transplant.  They said that it was an injury that is common among kids with low platelets (and also preemies).  What they didn’t say was what kind of injury and where it was.  (or they did and I had forgotten because they told us it was nothing to worry about, so because there were so many other things to worry about, I let this slip out of my mind).  Haley has calcifications by the periventricular disutribution (where you make spinal fluid). Major calcifications in that area can cause a number of things, from heart failure to cerebral palsy.  This injury was not caused during the chemo/transplant or as a result of either. This injury was caused by the fact that she had low platelets, and occurred either at birth or in utero, when her platelet count was too low to prevent such an injury.  This injury was the point of concern, as Haley’s walking has been at issue, and it was unclear if her “movement disorders” were acutally a result of that injury or any other neurological cause.

We’re happy and grateful to report that the CT scan showed the exact same injury, not any bigger nor more prolific. This means that while there has been “injury,” the damage does not appear to be related to her walking issues (or her intermittent body shaking).  Clearly, there is a movement issue, and as the neurologist said, it all starts with the brain.  Nice Neurologist did a few cognitive/intelligence questions to determine any issues in that way, and concluded that Haley is advanced for her age when it comes to cognitive function and her injury should not cuase any future issues. Nice Neurologist asked if we would be OK with the diagnosis; the truth is, it was all I could do not to hug him.  The only thing going forward is to give Haley alot more physical therapy, and to introduce occputional therapy. She will be fitted with orthotics, which shoudl at least minimize any weird hip development, etc.

Since we’re on a roll with good news, Haley has ained two pounds in 3 months. OK, as far as feeding tube kids go, it’s not a lot of weight gained, and they would like to see her gain a lot more.  She’s also gained in height. But we’re in the right direction. So hooray for bacon, which we firmly believe is the cause for her hefty success.

On the two year mark of starting her chemo, Haley was seen by none other than Dr. B (he’s usually not there when we come up for a visit).  Awesome Nurse was there too. As always she wowed them with her charms and giggles. Aunt Bea came to spend the day, and of course we had the pleasure of being with Lori, Len, Sam, Jonah, and Alex, who make us always feel welcome.

There’s so much more to the visit, but this entry is long enough. The hunt for a new PT continues, and now it is paired with the hunt for an occupational therapist as well.  But we are not complaining. For the first time in a very long time, we consider Haley a very lucky girl.

An ode to bacon was promised. still working on it…

By the way, in case anyone remembers, it was excatly two years ago today,  March 5th 2007, when Haley’s chemo started.