Haley’s Giggle

I’m going to start today’s blog with todays’ guest, which was favorite nurse. She hasn’t seen Haley in about 3 weeks, and I wanted them to see each other before we went back. We had a wonderful time, and favorite nurse got to see how Haley is growing and progressing developmentally. It must be nice to see a patient, who for a big part of their time together was so sick, smile uncontrollably and seem to be thriving despite all that has happened to her. It was wonderful for me to see them together as well, outside the hospital, without the barriers of mask, glove and gown.  I wanted to say thank you, but how do you say thank you for the two months she took care of Haley as she would have her own daughter? Went through Haley’s treatment, hour by hour, and often stayed past her shift until she was comfortable to leave Haley for the day?  I’m not allowed to get her a present, but it was recently her birthday, and I made that the excuse. I will be getting her a picture frame, and every year, I will send her a new picture of Haley. Hopefully I will still be sending her pictures when I’m too old to remember how painful this all was.

Funny moment of the day was Josie (Alex’s nanny who was taking care of Anna today) who called me to tell me that Anna’s playdate was “attacking” Anna with violent and dangerous licking.

And this is another reminder for everyone of you to write a little something about Haley. Feel free to read other’s comments if you need ideas. And if you want to send your message to me directly, please do so at jordana.well@gmail.com

Hemaglobin: 11

Platelets: 184

White Blood Cell: 9

ANC: 7.3

I was expecting to get another Tcell level today. The Attending decided not to do it, since doing that specific test alone needs three vials of blood. And since Haley’s problem right now is her red blood cells, they wanted to make this transfusion last as long as possible. So, we will have to wait until we return to DC to find out what the Tcell level is. The discouraging news today was hearing the Attending say she doesn’t think the earlier numbers were right. She thinks they were too high and that the tests must have been faulty. I discussed with her the possibility of the Tacrolimus impeding the Tcell production, as that was its function in the beginning. She said it is probably the case, but the dangers associated with Graft Versus Host Disease (GVHD) are far greater than having her Tcells come in large numbers. They will not decrease the Tacro level until at least month 6 (when the risk of GVHD goes down a bit). So we are stuck with low Tcell levels, but at least they made a showing. I wish we were returning with a sense of when her Tcells and red blood cells will come back. It’s a little discouraging, but she’s as giggly and charming as ever. So I looked at her today, and tried very hard to be Big Picture mom. It was a struggle, but it was a nice break from Oh My Gosh My Poor Baby mom. I’m not sure I fooled Haley, but she smiled at me anyway. I made the first clinic day back in DC for next Wednesday. That should give us a few days to reacclimate and taking a breather from the hospital, any hospital. In addition to being seen by our hematologist, we will be returning to New York once a month for our check-ups with our transplant team.

We had OT and PT today. There was one point where Haley was frustrated that she couldn’t get to a toy, and she started screaming. I wanted very badly to pick her up, not to appease her, but because it sounded like she was in pain. I explained that recently, everytime Haley or Anna cries, I think they are in pain. The PT pointed out that this feeling is common among parents of transplant kids (or kids who have undergone major hospitalizations). She said it was like post traumatic stress disorder, like coming home from a war and jumping every time you hear a car backfire. I’m sure it wil pass.

The movers came today to collect our lives for the past 4 months and transplant it back to DC. We don’t move move until Sunday, but this is only time the movers could come. The The apartment that Haley is in, aside from a few large items, looks the same. The room in Lori’s home look very bare. I put Anna to sleep there tonight, and it didn’t feel like the same place. reality of going home, with so much uncertainty, has not yet sunk in. I’m already so emotional, I can’t imagine what I’ll be by the end of the week.

Guests today were: Sandy and Arnie (they own the place Haley has been staying at. They were very quick fans of one another).

Funny moment of the day was when Anna said to me “Mommy, I want to believe in.” I said ” you want to believe in what?” She said, “I want to be leavin’ to go to washington.” that was her first joke ever told, and I thought it was a pretty funny. This is a reminder to please submit a comment to Haley this week, so she can read what you wrote to her for a long time to come. if you don’t want to send it via the blog, please email me at jordana.well@gmail.com

Haley is status quo. We go get her Tcell level tested tomorrow. The results will come back on Friday.

 I don’t know if I will be ending this blog on Day 100, or go beyond that. I assume you would want to know how the red blood cells and Tcell things work out. But I would like to make a request to each and every one of you that are reading the blog, whether or not you make comments, or have ever made a comment. I will preserving this blog for Haley, so that she can read about the experience she doesn’t remember.  It will mention a few people by name, but it will not refect those who have been with her through these virtual visiting hours. I would like to know who has been there reading about her, concerned about her, having her in their thoughts and prayers, writing in support of her, and wishing there was more to do than just read along. To that end, I would like to ask each and every one of you to submit a comment to Haley directly. It doesn’t have to be long, it doesn’t have to be funny, or witty. It just has to be from you.  The only thing I ask is that you sign with your full name (or your first name, and relationship to her).  I will then save it for her.

 I  will repeat this request throughout the week, so even those who don’t read it everyday won’t miss the opportunity.

Guests today were Aunt Tova and Aunt Bea.

Funny moment of the day was how I shopped with Haley at a baby store: We stood outside for 45 minutes while the owner brought us our merchandise from which to choose.