Days 125-126 (July 19-20)
Hemoglobin: 10.1
Platelets: 227
Today’s hospital visit was the smoothest thus far. Heartful hematologist of course makes things always much easier, and he was there today to check on her rash (we also come in every other friday for an infusion of pentamidine). The pentamidine was ordered before we got the the infusion room. And the coordinating nurse was there so I was bale to introduce myself and talk about Haley’s case. Even though we were there for almost 4 hours, it was I think as quick as it’s going to get.
It’s hard to describe Haley’s rash. First, she’s just peeling on her palms, so it doesn’t look like anything other than she’s healing from something. The other stuff– if you saw it on a healthy child, you wouldn’t think anything of it other than her skin is allergic to something it contacted. It’s not even that pervasive. But it doesn’t look normal. And when one things heals, something else pops up. There is still nothing to do at this moment (aside from adjusting the Tacrolmus levels that work to keep the GVHD at bay) but watch it closely. So I watch, and ask a lot of questions. I can’t really go online for something like this, because every case is so different. Plus, things on the web are terribly distorted: GVHD pictures will be of the extremely severe cases, if at all.
Guests were: Uncle Pretty, Carly, and Dian.
Funny moment of the past two days was putting Anna to sleep. She insisted on wearing her Cinderella dress- her most prized possession– to bed, because I just let her wear it again for the first time in a week.
Tansy – You don’t know me, I’m one of the secretaries at the ATT. I was reading about the rash and was reminded of the very strange rash my friend had gotten, and she said that in order to figure out what it was, they had to biopsy hers. They did it in 3 depths because the rash got so deep on and under her skin. Has the baby’s rash been biopsied? She also had to have liver and blood tests, which I’m sure she has all the time anyway, of course, so I’m not even going to suggest THAT! But has the rash been biopsied? Have a good Shabbos and Hatzlacha Rabbah. Every one is rooting for her and all of you.
July 20th, 2007 | #
Dear Tansy,
Feels like it’s been months instead of a week since I’ve checked in. I’ve been in Virginia working on a documentary. I was contemplating stopping but, but ironically, I’m suffering from some weird allergic rash from something in my yard in Charlotte. So, I thought it best to stay away. Now that I’m reading about Haley’s rash, clearly it was the right decision.
Your description of Anna was perfect, and I’ve only met her once! I have a confession to make. I wish I could wear a Cinderella dress to bed at night! You are a good mommy. Kisses and hugs for Haley girl and Sister Anna, and of course, one for you, too…Cristina
July 20th, 2007 | #
Oh it’s so nice to read about a positive experience with your DC medical team. I’ve been worried about your discomfort and difficulty and disappointment with Haley’s medical care here, so I was delighted to read that things finally went smoothly. How nice that they anticipated her needs instead of you having to badger them for everything. Hopefully things will continue on an upward slope in that regard. I think it’s really important that you feel confident in your care here so that you don’t have the added burden of driving 8 hours round-trip when you feel like you need the best care for Haley. I understand that you like to drive, but wouldn’t it be nice if you felt the road trip were optional?! Thank G-d for Heartfelt Hematologist.
Reading your Anna reports are especially fun/ funny now that I’ve gotten know her better. I can totally visualize her excitement over getting to wear her Cinderella dress to bed.
I am comforted by the fact that so many good doctors agree that the rash is a virus and not a manifestation of GVHD. I am also comforted by the fact that Haley has such an amazing Mommy who will be taking care of Haley with vigilance and a vengeance! Hope to see y’all very soon! love, Dana
July 21st, 2007 | #
I’m just echoing the other commenters –I’m glad that DC care looks like it’s smoothing out a bit, and it doesn’t sound like Haley’s rash is worsening. I’m also glad that you aren’t letting yourself get worried about what’s on the internet about GVHD. Part of your strength in being Haley’s advocate has been knowing when to be insistent and very worried, and when to take a watchful waiting approach. As exhausting as this experience has been, it’s given you amazing judgment about what Haley needs.
(Hi Dana! Hi Cristina! I’ve missed you)
July 23rd, 2007 | #
hi tansy,
so glad you had a smooth d.c. hospital visit and you seem well. very good to put web research in context. your descriptions of anna are hilarious. my kids or i have been passing around various summer colds so we have been keeping far far away, but haley remains in our hearts all the time. big hugs to you all, seema
July 24th, 2007 | #
Glad to hear the Washington hospital visits are getting better. The pealing skin on Haley’s palms reminds me of some virus — but it happened too long ago to remember exactly what it was. Hopefully, Haley’s have a reaction to something and will clear up completely very soon. As for Anna — she’s a card! On my most recent trip to New York, my grandchildren’s princess outfits didn’t come out once. Kids do outgrow these phases, but this is a harmless and fun one, expecially when Anna is involved.
July 25th, 2007 | #
Thinking of you as always. Love, Mira
July 30th, 2007 | #
Hi Tansy! So glad to hear that you guys are doing well and the hospital visits are improving. The stories about Anna just crack me up. She is a great little girl and great big sis. I saw the beautiful photos Dana took of Haley and think she just looks FANTASTIC!!! It was so nice to finally put a face on things. Thinking of you and hope to somehow catch up in person soon … XOX Colleen
August 3rd, 2007 | #
Dear Haley,
It’s been awhile since you or your mommy have written. Some of your fans live far away and don’t kow what’s going on with you on a day-to-day basis. Do you think you can bring us up to date?
Perhaps your mommy can also send some pictures of you and Anna. We’d be delighted to hear from you.
Many many kisses from your cousin in Jerusalem.
Sharon Bakst
October 11th, 2007 | #