Haley’s Giggle

It takes a lot of creativity to let Haley get out and experience life without life experiencing her. For example, she can go to Central Park, but must be out of sunlight (most newborns should be anyway, but the chemotherapy makes sun exposure even more dangerous), must not touch the ground, can’t be out if the air is too stagnant, and of cousre can’t be near too many people. She’s allowed to go to a playground, but she’s not allowed to climb on anything. For a year. No swing, no slide, no jungle gym, no sandbox.  For a year. A year. How will she be socialized if she can’t go to the playground? Seriously. Think of the things the child learns to do, physically and mentally, on a playground. Think of the sanity for both parent and child that a playground provides.

As for me, I’ve adapted quite well to the no-store-with-Haley rule.  I’ve stood outside the Starbucks at 7:30 a.m. waiting for the first person with a kid in a stroller walk in. I hand them enough money for whatever they want, and offer to pay for the both of us so long as they get me a coffee.

I was in shock when I read that my favorite sanitizing spray only elminates bacterial germs, not viral germs. So now, I will be spraying first with my favorite spray, and then I will wipe down with a clorox wipe. Of course, there’s also now a commercial on TV that shows a kid moving about a house, and suddenly the kis is filled in with all these colorful viruses that he passes along from object to object in the house. I resanitized the apartment after that.

There were no guests today.

Funny moment of the day was during my efforts to toilet train Anna.  I bring her in the bathroom with me, because if I go first, then she will go. After I went, Anna hugged me and said, “I’m so proud of you Mommy! Now you get a sticker!”

White Blood Cell: 8

ANC: 6.2

Platelets: 112

Hemaglobin: 10.2 (post- transfusion)

The news is not that her levels dropped a bit (except for the hemaglobin, which due to the blood transfusion last week should have increased). The news– the BIG news– is that her Tcells and Bcells made their first showing. This is tremendous. This the sign that her immune system is starting to grow back. She still has none, but the presence of these cells, which are the majors cells of your immune system, is an incredible find this early. They said that the Tcells are in the 130s and the Bcells are about 200. To get the green light to go home, the Tcells have to hold steady at 200. But, barring any level of GVHD (graft v host disease), and as long as her digestive tract infections go away and don’t come back, then we’re headed for DC at the 3-month mark (that would be roughly June 15).  As for her drop in hemaglobin, they’re decreasing the amount of blood tests they have to take every week, to see if it was just the sheer blood volume being taken out that was causing the drop.

Today was a small treatment (she got her pneumonia prophylactic), and that only took an hour and half, but it was tough nonetheless. I still can’t handle the look of the needle-nail thing that goes into her. I’d love to douse the mediport site in lidocaine, but I’m afraid to OD her (apparently you can do that). The mediport area still is very tender and sore for Haley, and it still creeps me out. But at least I don’t have to do those dressing changes anymore.

We also now have a favorite clinic nurse. She has ten month old twins, so I think seeing Haley reminds her of her kids. She won’t be there this Thursday, when Haley has a four hour transfusion (fun for all), but she’s already lined up Dance Therapy for us.

The walk back to the Upper West Side through Central Park was beautiful. New York actually is holding onto Spring really nicely. And Haley is enthralled with the leaves.

Guests today were Uncle Neil and Jeremy.

Funny moment was Anna at the park, decked out in her blue sunglasses, dora jewelry and hot pink crocs, crying in frustration that she can’t reach the monkey bars. I’m sure she didn’t appreciate her mother laughing her head off as she thrashed about.

Hi from Haley again. My mom is busy opening up a toy she got me (I think it’s going to take at least another half an hour), then she still has to sanitize the place (my sister Anna was here today), so I’m subbing in.  I keep trying to tell my mom that she needs to get out a bit, but I’m afraid it’s lost in translation (all i say is “babababa.”).  Today was a very uneventful day health-wise, though I’d been feeling a bit queasy from time to time.  And it was a lovely day at the park, where I touched a leaf for the first time in my life while Anna spun fast and quick on a tire and ran around in the sand-bottomed jungle gym. But since there are fungi and mold and things in the ground and dirt, Anna had to be sanitized, hands, arms, and face before she could touch me.  Then we stopped by the Amsterdam street fair, but since there were too many people, I had to go back.  I can’t wait to be able to just be outside and not have to worry about the stray germ making its way towards me.

I love hanging out with Anna. She’s very entertaining. For example. She came to visit me today in a Cinderella dress.  Then she shouts something in french to me, though it’s so high in pitch only dogs could hear it. Then she twirls and sings and tells lots of stories. She tries so hard to make me laugh, it’s really cute.

Guests today were: Noah, Kyra, and Smaller Anna who met us at the street fair; and Mr. and Mrs. C and Daniel, hung out with us in the apartment.  Though I was the reason they all came, Anna stole the show. That’s OK, though, she’s such a hoot to watch, I just have to giggle at her.

Funny moment of the day was when Mommy grabbed my hands, pulled me close to her, and kissed all around my neck. It sent me in hysterics.