Thursday, May 17, 2012

Day Zero - Transplant Day

Intense. That's probably the best way to describe today, although it doesn't capture the crazy mix of emotions that we experienced today.  Not sure any words can adequately express what today was like.

Here's how the transplant itself happened.  We were told in the morning to expect the cells from the lab around noon - 1:00 PM.  The pre-medications started beforehand.  Right before the transplant Ezra started to rage in reaction to the medications and had to be sedated. He then fell asleep on top of Mommy, which was a good thing because he wasn't moving during the transplant.  At approximately, 1:30 PM, Dr. O'Reilly, Chief of the Bone Marrow Transplant Service performed the transplant.  The cells were in a large syringe and looked like watered down blood.  Instead of an IV drip like we expected, Dr. O'Reilly actually slowly pushed the cells out of the syringe by hand and into Ezra's central line.  This all happened while Ezra slept on top of Mommy. 

Tears were flowing as we watched these magic cells push their way into Ezra's body.  It seems so impossible that a syringe of cells will grow into a new immune system - that these cells can cure Ezra.  That 6 inches from our faces, we were watching the beginning of what we hope will become the new healthy, germ fighting Ezra.

Dr. O'Reilly explained that the cells will journey first to Ezra's lungs, then to his spleen and then by tonight, they should make their way to Ezra's bone marrow. There they will stew and slowly start to grow.  He also told us that Ezra will excrete out the chemicals used to wash the cord blood through his breath and he will smell like garlic for 24 hours. He immediately smelled, although it's not Italian restaurant garlic - maybe rotten garlic at best.

It's an awe-inspiring process and we feel gratitude that the option of a cure even exists. We know very little about the cord blood unit - only that it came from a bank in New York. These umbilical cord blood cells already gave life once to some other child out there and now they are giving life again. Without public cord blood donation, these life-saving cells would be medical waste and our son would have no chance at a cure.

The rest of the day unfortunately was a challenge.  Ezra continued to rage from the medications until he passed out. Tensions were high and the doctors are switching around some meds to see if we can get him to a better place.  His stomach is also causing him a great deal of distress. The doctors are telling us things will get worse before they get better.  Hard to imagine things being worse, but we are taking it one day at a time.  Thankfully, he woke up after sleeping all day and has been playing for the past few hours and acting like himself. As of this posting at 12:45 am, he is still going strong.  Signs of life? We'll take it.

Coincidentally, tonight was the annual Gift of Life gala.  We have worked very closely with Gift of Life for nearly 2 years trying to find Ezra a match. While Ezra was sleeping, we were able to watch the live stream of the beginning of the gala.  They announced Ezra's transplant and we were touched by the support and prayers of the hundreds of people in attendance, and of course, everyone out there sending us love.

As we confront the pain and suffering, this picture (taken by Ezra's talented Aunt Jenny) is a reminder of why we are sitting in this hospital. Not even the sky should be the limit for Ezra.

Transplant Schedule

The cells are expected to arrive around noon or 1:00 PM. The process should be quick. Hopefully, the hardest part will be getting Ezra to take his tylenol pre-med. Will keep everyone posted.