Haley’s Giggle

A LETTER FROM HALEY TO HER FATHER
Dear Daddy:
This is a special blog for you.  On Father’s Day. On your birthday. Everyone should know what a wonderful and special daddy you are. It’s not easy to watch your little girl go through some tough things. It’s not easy to put your needs aside for the good of everyone else, not just me. It’s not easy to spend your day going between me, Anna, and work. It’s not easy to be a daddy. It’s not easy to be a daddy of a sick girl and a princess.  I knew you were already a wonderful father: the first 8 months of my life, you’ve always been so loving to me, playing with me, cuddling with me. But this these past few months, looking up, often through groggy and weepy you were there with me and Anna, no matter how little sleep you had or how much work you had to do.  You held me for hours while I was very sick. You rocked me in a very uncomfortable rocking chair for weeks. You stood over me, worried about me, cared for me, cared for Anna, never once complained, never once wavered. I will undoubtedly be told the story of my transplant adventure for the rest of my life, and a big part of that story will be that you were always there for me.
Daddy. I love you very very very much. You can see it in my giggle.
Love,
Baby Haley (and Anna-Boo)

Platelets: 211

Hemglobin: 7.5

Helper T-cells: 79

White Blood Cell: 7.3

ANC: 5.5

I don’t think I’ll ever get used to that nail/needle that has to go in her everytime they need to draw blood or give a transfusion. Haley’s low-energy diet didn’t keep her hemaglobin from dropping to its lowest. She slept through a lot of her transfusion, and seemed to have gotten enough rest to muster through the OT session. Although she has been tested and scored at the 10-month developmental level (physical, she’s right on mentally), she’s making great strides everyday. She’s doing a fast commando crawl, is climbing up to things, and, with a bit of help, took her first steps. The worrisome news today was that her helper T-cells halved from the last test a month ago. Big Picture Attending said that at that time, all of her Tcells were low. They will repeat the test on Tuesday. We’ll get back the results on Friday. I was thinking about the Tacrolimus that was given initially to combat the donor’s Tcells that they were unable to remove from the bone marrow. Maybe the Tacro is killing off her new Tcells. Ah well, a question for the doctors.

Clinic days are usually tough on Haley, and there are a lot of unpleasant touches. I take her back to the apartment, give her a bath, a long massage, and then danced for a long time with her my arms. She giggles heartily (what girl doesn’t love to twirl???). The day is washed away.

Guests over the past two days were: Ethan, Uncle Lenny, Sam, and Dian (another self-proclaimed princess).

Funny moment was Anna, who had the bag of carrots nearby. I had one in my mouth, and I asked Anna if she can get me another. She answered, “finish that one and I’ll give you another.”

I’ve been putting Haley on an low-energy diet today.  Being that we passed the morning mark, I knew that if she needed a transfusion, it would be in the after care hours or the ER, and I didn’t want that. She fell asleep soon after she woke up, which was a bad sign, but after her two hour nap, and a stroll outside in the cool air, she got some wind into her. She’s now sleeping again into the second hour. Unfortunately, she’s missing Oprah. Today is Day 90.  I’ve been thinking about the last ten entries, if they indeed are the last ten entries (I would like to continue through Haley’s transition back home, and at least until her red blood cell comes back. We shall see).  But I’ve been thinking about this blog, and how much it’s meant to me. For more than 3 months, it’s been my lifeline. It was the way I’ve been able to share this impossible undertaking with my friends and family. As bad (or downright unspeakable) or exhausting as some days have been, I would always want to write on the blog. Some have told me that they’ve become addicted to the blog. Well, so have I, not only to write on it, but to read the comments and those that make them.  

I think about the blog and all it’s meant to me, and whether it’s at Day 100 or Day 150, it can’t continue forever. And already it’s starting to make me sad. I don’t know where I would have been without this blog to process, share, communicate, express, and understand the bizarre world that we all here have been living in. People keep thanking me for the blog. But I am not to thank. The one to thank is the one who set this blog up in the first place.

David, thank you. 

Guest today was Dian. She will be spending time with Anna over the weekend, but was nice enough to give me a break with Haley today so I had time to do work (I actually started a job– I’m crazy). 

Funny moment of the day was sitting outside at an uncrowded cafe, next to a woman with a 3 month-old puppy. Haley and Funny spent a half hour just barking and giggling. When it was time to go, Haley waved bye-bye to Funny.