Wednesday, May 16, 2012

Days Negative 2 and 1

The countdown is almost over, tomorrow is the big day - transplant day. The umbilical cord blood unit is in the lab freezer waiting to be thawed tomorrow and then prepared. When it's ready, it will be infused into Ezra through his central line, much like a blood transfusion. Then the waiting game begins. It takes on average 21 days for cord blood stem cells to engraft - in other words, to take over and start growing into Ezra's new immune system. The length of time it takes for cord blood to engraft is longer than when the donor is a live donor - this is one of the disadvantages of using cord blood.  During the time before engraftment, Ezra has no immune system and is highly susceptible to infection. We need to keep him as protected as possible to avoid infection. Mommy and Daddy now have to wear masks and gloves 24/7 in the room, along with everyone else - will make sleeping in the hospital even more pleasurable.

Once the cells start growing, the concern continues to be infection and Graft Versus Host Disease (GVHD). GVHD is when the donor cells attack the recipient's cells. It can range from mild to fatal. Ezra has already begun medications to avoid GVHD.

We are praying for:
1) the quality of the unit to be good when they thaw it tomorrow;
2) quick engraftment;
3) no infection;
4) no GVHD;
5) Ezra to experience the minimal discomfort possible in the upcoming weeks.

A lot of mixed emotions as we look toward tomorrow. Hope, fear, gratitude and uncertainty all mixed together. Knowing harder days are ahead before we get to the better days, but not knowing when the better days will come.

We are grateful to everyone for the prayers and kind words. Special thanks to our synagogue, Ahavat Achim in Fair Lawn for holding a special tehillim service tonight for Ezra.

In other news, we moved rooms today and got an upgrade to the other side of the building. Our first room had the most awful view of another gray Sloan-Kettering building where we looked into other patients' rooms and it always looked like a rainy day. Depression central.  Now we have an awesome view of York Ave and can see the Queensboro Bridge with lots of sunlight.

Ezra is battling with very bad stomach pains, but got a special treat of getting unplugged from his lines for a short time during PT.  He took full advantage zipping around the room, jumping on the PT mat and coloring on the windows. First time he's had energy since we arrived and it was great to see.

And as we were getting ready for bed, we realized the shades were drawn and Ezra had not yet seen the lights of NYC out his window.  We opened the shade and his face lit up. "It's so pretty," he said, and asked to fall asleep with the shades up, gazing at the lights. 

We are getting you back out there baby boy.  Just give us time.