Haley’s Giggle

We had physical therapy finally!  PT woman observed Haley for an hour.  Although Haley is behind physically by at least a half a year, PT woman was happy to see that it was only physically, since at that critical timein development, cognitive function is in part linked to physical development (think like the experiences a kid has while walking will create new cognitive experiences when she is exploring and learning nwe things).  To help Haley walk, I would normally get toys that are also walkers. Problem is, they are all too short (most kids walk at a much younger age, and when they are much shorter). The other problem is that, even though haley doesn’t weight much, she bears a lot of weight on a toy that can’t handle it. But necessity is the mother of invention, so perhaps a fewMacguyver-esque adjustments are in order.

Despite the less frequent tacrolimus doses, Haley’s eating has not changed, though, and that remains a big isue going into this next year. We get to drop the Tacrolimus level by .2 ml Friday (.2 ml= one tiny drop), and hopefully it will come with an increase in appetite.

Her red blood cell count was a a little on the low side (it’s dipped down below 10), so heartful hematologist is keeping an eye out for that.

One year ago today, Haley was taking her last doses of chemotherapy. Today, our friend Dave is going in for a bone marrow transplant too. My wish to you, Dave, is that you get through it with as little pain and complications as possible, and that you will be sitting here, like us, looking back at everything a year from now and declare yourself disease-free. We love you very much and are sending the warmest hugs your way, each and every day.

Below is a special entry written by favorite nurse.  Haley was lucky with all of her spectacular nurses, but as you can read below, there was a special bond created between her and favorite nurse. There’s a picture of the two of them in the photo gallery: favorite nurse is the one sporting the required yellow gown. Haley’s the other one. ^_~

One of the most important things you learn as a pediatric oncology nurse is to not get “too close” to your patients.  It is not recommended that you see the family outside of the hospital, call to check in on your days off, stay late after your shift is over, or constantly think about them when apart.  I firmly believe in these guidelines, although sometimes it is absolutely impossible to follow them.  For example, when taking care of baby Haley.
I knew about Haley before she ever came to the inpatient unit.  Everyone was talking about “the adorable baby from D.C.” that was coming in for transplant.  It was by chance that it was my turn to take an admission on the day that Haley arrived.  I was so excited to finally meet who I had heard so much about. Of course, Haley did not disappoint.
I have never, to this day, met such a happy baby.  Her attitude was contagious.  When I close my eyes, I can perfectly envision her with a huge grin, flapping her arms, and doing this accelerated breathing / laugh that could make the hardest of people melt.  She made coming to work exciting for me.  I couldn’t wait to see her every time I walked into the hospital.  It did not feel like a job when I was with her, rather a playtime to lift my spirits.  I would ALWAYS walk in the room to find her in a good mood while modeling the cutest outfit I had ever seen.  We had this connection from the very beginning that cannot really be explained in words.
I not only fell in love with Haley, but with her family as well.  They welcomed me as part of their team from day one, which was such a good feeling.  The hugs, the food, the sweatshirts if I was cold, the funny Anna stories, the coffee, the Mindy Smith songs, the welcomed advice, and the overall friendship, meant more to me then they will ever know.  Haley is incredibly lucky to have so many good people in her life that fought so hard for her. No one would understand unless they personally witnessed the daily trials and tribulations that occur during such a trying period. I will forever be inspired by parents who can endure this experience with the grace that they did. 
I think that Haley spared me from witnessing some of her hardest hours.  Coincidentally, I was not working on most of the days that Haley was feeling her worst.  I seem to have missed the fevers, the nights of no sleep, the central line pulling out, and the visits to the POU (pediatric observation unit) or ICU (intensive care unit).  There was nothing worse then seeing her upset. It was so difficult to do things like dressing changes, because her expression was as if I were hurting her feelings by inflicting pain. Nothing, however, seemed to break her spirit.  I know that there were days when she felt awful, but when I think back, I only remember her smile.  Although I am glad that she will never remember the bad, it makes me sad to know that she won’t remember our countless fun days either.  I guess we will just have to stay in each other’s lives and create new happy memories in the years to come.
I think of Haley all the time and I know that she will have an incredible life.  She has already proven her extraordinary strength time and time again.  It is unbelievable that someone who had been in this world for under a year could have such a profound impact on my life.  People always ask me how it is that I do what I do for a living.  If they met Haley for even five minutes, they would understand why I love it.