Haley’s Giggle

Haley was just given the go-ahead by the doctor today to be admitted this coming Monday, March 5th.  The first day of treatment is delayed a day, and will now start Tuesday the 6th. The schedule is as follows: 8 days of chemotherapy, one day of rest, and then the transplanton the 15th.  The transplant, amazingly enough, is a simple IV put through her central line.  There’s no surgery involved.  So that’s a relief.  The nurses checked out the line, and except for a few stitches being pulled out (she’s a squirmer as well as a giggler), it looks fine.  I have two more times that i have to clean the line before we go back to the hospital, where they will resume taking care of it. Thank goodness. I always had a thought in my head that (brace yourself parents) maybe I should have become a doctor like my other sisters.  But after simply changing the bandage, I realize I’m much better with the non-bloody type situations.

But aside from the general anxiety I feel as the start day approaches, there is one aspect that is really getting me down.  For those who haven’t seen my daughters interact, I will just say they are quite the pair. They are extremely close.  I think it’s a bit unusual for young kids that close in age (2 years apart), and with the older daughter being such a Momma’s girl, to be so close.  And yet they are. Anna is extremely doting, loving, and really takes care of Haley as much as she is able to do so. And it just breaks my heart that Anna will not be allowed to see Haley for the entire time we are in New York.  People have suggested webcam talking between the sisters. But that doesn’t come close to the same thing as when Anna takes both of Haley’s hands and leads her in songs a giggles.  There is nothing like the sight of Anna smooshing her face right into Haley’s cheek, saying “you’re so cute!” There’s nothing like Anna going over to Haley when she’s crying, giving her a hug, and saying “it’s ok, you’ll be ok. Esta bien (learned that from Dora).”  There’s nothing like Haley laughing uncontrollably at Anna’s living room “performances,” be it singing, dancing, or the modeling of Anna’s favorite outfit: her pink tutu and orange crocs.  It literally breaks my heart.  I know this is all for the best, and that the more we keep Haley in a sterile environment, the lesser the chance of infection and worse. But. As their mother. As the one who gets to wrap them up in her arms while they’re both giggling with each other. The one who lowers Haley so Anna can kiss her and hug her good night. It just breaks my heart.

Yesterday I went to a memorial gathering for my neighbor, Valucha.  I have never met Valucha, as she was sick the moment she moved in a few months ago.  I was talking to her daughter, who kept telling me how close her mother felt to Haley.  I asked how that was possible, since the two have never met.  She said that her mother could hear Haley giggling through the walls, and always responded each time she heard Haley, even during the last week of her life.

Congenital (from birth) Amegakaryocytic (without Megakaryocytes (large cell-making cells)) Thrombocytopenia (deficiency of platelets), known more affectionately as CAMT, is the inability for the body to make platelets.  This is NOT hemophilia. Platelets are the EMT of the clotting protocol. First on the site, they hold the wound and seal it up temporarily until the other 8 clotting factors come in and permanently seal the wound (Hemophilia is a deficiency in one of the factors). 

She was born with this because I have a recessive allele and Ranan does as well (we are both a carriers of this disease). As for Anna (now hang onto your Punnett Squares), because Ranan and I are both carriers, and because she doesn’t have it herself, she has a 2/3 chance of being a carrier.

CAMT is very rare. I believe for most of the doctors we’ve seen, it’s case number one.