Friday, July 20, 2012

Day +66: HOME

Home. There are no words that can adequately describe how sweet and wonderful it is to be home. Ezra is beyond excited. The expression on his face when we pulled up to the house was a mixture of joy, amazement and a little hesitation. He ran around outside for a bit, checking out the backyard, the deck, his basketball hoop. Then he spied his toys through the window and he ran inside. He spent the rest of the day running around re-discovering all his toys. It was amazing and also a bit heartbreaking to watch him reacquaint himself with his home.

We can't get over how quiet it is here - no beeping pumps, doors opening and closing, linen drawer slamming, vital signs checks, screaming children. And there is so much space to walk around. And a table to sit at to eat. The simple things.

It was 78 days ago on an early Monday morning that we packed up and said goodbye to our home. We all had tears in our eyes, including Ezra who knew that this time, the trip to the hospital was different. As we shut the door, we did not know if this family of three would return as a family three. We did not know what challenges were ahead of us and we still do not know what we face. We are grateful for so many things: that Ezra is doing well; that he hasn't had an infection; that he has strength and energy; that he is taking his meds, eating and drinking.

We are thrilled to be home, but it is without a sense of relief or confidence that we've accomplished the cure for Ezra that we were hoping for when we left our home on May 7. Will this all have been for nothing? Will the donor cells grow? Will his old dysfunctional immune system grow back? Will nothing grow back? Will he need another transplant in a few months? These are our questions and we have no answers.

Ezra's health is still in a very precarious state. His neutrophils are not holding and he is dependent on a drug to stimulate growth. He is still at high risk for graft versus host disease. He is also still dependent on blood and platelet transfusions. He still has very little immune function and his immune system is in the early stages of regrowth. He will remain essentially in isolation at home for now.

We will be back at the hospital either Monday or Tuesday and will continue to travel back to Sloan 2 to 3 times a week, and possibly more as needed. He will have labs drawn, be seen by the doctors and receive any needed transfusions or medications. At the sign of the slightest complication, he will be re-adimitted.

Through it all, what has kept us going is the love and support of our family, friends and our new family of strangers. Whoever heard of complete strangers sending gifts, dropping off treats and meals, donating blood, saying prayers all because they heard about a little boy named Ezra who wasn't feeling well? We are touched by everyone's kindness and support and appreciate every note, post and comment sent to us. One day we hope to tell Ezra about how he touched so many people and how those people helped him get better.

We will continue to keep everyone posted as Ezra enters this new phase of his journey toward being cured.