Haley’s Giggle

Hemoglobin: 10.5 

Platelets: 170  WBC: 6.3 

ANC: 5 

For a year, I’ve made it my mission to know everything there is about platelets, CAMT, and infant bone marrow transplants. Now, I will make it my mission to learn everything there is about red blood cells T-helper cells, and the immune system in a post-transplant year. I have a lot to learn. This is the last clinic visit before we head back to DC.  The whole process this morning was surreal– it felt a lot like walking through the halls like returning soldiers to the battlefield that is now being fought be others, like you feel when you’ve graduated and walk the halls of your school, not yet ready to leave. It was fitting that she was seen by Attending who keeps asking her to marry him. I took several pictures to mark their special relationship. Of course no picture will capture it. But I wanted something, even if it was a blurry souvenir.  Although we will be heading back to New York every month for a check-up by the transplant team, this is the end of a very long journey. The ritual of waking up at a certain time to apply her numbing cream so that its peak of efficacy hits when they’re ready to put the line in, the ease of which this hospital makes any process.  For a non-children’s hospital, they take special care to ensure that a child doesn’t have to be in the hospital any longer than necessary. I say this as now an outpatient’s mother, because once you are outpatient, the last place you want to be is the hospital, except for quick checkups. Everything else means something isn’t working. Having said that, there is a smooth machine running in this hospital. They don’t let red tape get in the way of the medicine. And if someone hears of something that should have been done, that person, whether it is the head doctor or the nursing assistant, will make sure it gets done. For a process where things can so easily fall through the cracks, surprisingly little has. That’s important now I realize when deciding on where to go for treatment. It doesn’t matter how brilliant your doctor is if the rest of the care, down to the receptionist who checks you in, doesn’t follow suit. To say that I’m very emotional today is to say that New York is just another city.  I will miss this place very much. I will miss every single friendly smile. I will miss the extra love given to Haley. It is a very special thing to have your Attending take the extra few minutes and twirl your daughter around until she can’t stop giggling. It is a very special thing when the clinic coordinator comes in and makes special effort to pop in and smile. It is a very special thing when a new nurse comes in and says “everyone said you were the cutest thing!” It is a special thing to feel the love of all of these people who were complete strangers just a few months ago, but who never let a moment go by without making you feel at ease. It is a very special thing when, on her off hours, favorite nurse comes by to see how your daughter is doing.  It is a very special thing when you are wanting very much to go home, but are dreading not seeing these faces the next time you’re in clinic. It is a very special thing. It is a very special place. They are very special people. 

It’s not even 2 p.m. today, but there will be no guests. Just Haley and me and a nice day.  The funny moment was Haley charming the pants off a bunch of softall players.