Haley’s Giggle

Tonight is the last night in New York. We have been here since March 4.  More than 3 and a half months. And it has been a journey no one should ever have to take. But if you do; if you must take this road, I hope you have a sister like Lori. It is one thing to offer haven to someone and their family while they undergo such an ordeal. It’s another to actually do it, and do it with such graciousness. This is not to overlook the rest of my family, especially Grammy and Gramps and Savta and Sabah who had spent extended periods of time with Haley and Anna. This is not to overlook our siblings who’ve called all the time, and who’ve dropped by as often as they could to lend an extra hand whenever they could and always called as often as they could to make sure we know they were thinking of us.
But. I hope you have a sister that would do just about anything for you, and do it with such kindheartedness. I hope you have a brother-in-law that always has a cheerful ease when you walk in the door, so that even at the worst day, you can count on a smile and a warm and caring environment. It is not easy to sacrifice your normal routine. It is not easy to displace your own family to help someone else’s out. Granted, as much preparation as we thought we had done, nothing really prepared us all for the hardships and challenges that went into these past months. And someone else may have buckled under the pressure, adding more stress to a most impossible situation. Lori and Len did everything they could to make sure that didn’t happen. They made room for Anna, and let her into their lives and loving arms: they treated her like their own daughter, they made sure she was taken care of when it came to her everyday schedule—whether it was helping to get her into a new school or sharing Josie with us (who deserves incredible amount of praise, taking care of two 3 year-olds undergoing potty training and the change of their lives).  They understood that as much as we had all had our lives turned upside down, Anna was in the worst situation. They came to see Haley whenever they could, but it was a big enough job to maintain normalcy in a very abnormal situation. They were sympathetic ears to every detail of what was going on at the hospital and helped sift through the barrage of medical issues that often appeared like a tornado, without warning and without mercy. They never seemed to tire out of love, smiles, and overflowing kindness.
We go home and figure out how to continue our lives in DC without them. Sure Anna will sleep in her own bed, but she will miss Aunti Lori telling her about Banna and Balex. Sure I can have a cup of coffee in the morning, but I will miss getting a cup of coffee with Lori and catching up on the day. Sure Anna can dress up in her Cinderella outfit, but she will miss Alex also dressing up in Tinkerbell. From Alex wearing dresses to Anna wrestling and fencing; from toilet training to preschool; from donuts for breakfast to gelato late at night; from sharing the cleaning person to sharing their home; from Sam and Anna hanging out together at some ridiculous hour in the morning to Anna and Alex sleeping together; from the cousin’s express to woofing it up with Haley; from birthdays to uncertain days; from tea parties to soccer games; from hair clips to baseball caps; from fighting over toys to needing to call each other on the phone.  There are too many memories to mention in this small space. There are too many emotions that overwhelm me at this time.
But to Lori, Len, Sam, Jonah, and Alex.  What can I say? Thank you is so inadequate. You should never ever have to go through something like this. But you can bet, if you need anything, we will be there just as you have been there for us. There shouldn’t ever be a doubt in your mind.
I already miss you all. I already am broken up having gotten so close to you all, and having you getting so close to the girls.
Josie—Thank you for everything. It was a difficult task taking on two 3 year-olds with very very different agendas. To Anna, you will always be Alex’s Josie. To me and Ranan, you will be our other Josie. Thank you for treating Anna with such love and devotion.
Sam—I love how attentive and sweet you were to Anna. keep playing ticket to ride. And tell your dad to get his own account for goodness sake.
Jonah— I promise to find Lucario and Mew and the Tree of Beginnings.  And it’s always OK to get into a fight if you’re standing up for your friend. Thank you for always making Anna feel at home, even when she blocked your view of the TV.
Lexi—What can I say to Anna’s best friend? What can I say to such a cute boy who shared everything—his family, his room, his nanny, his toys, and his friends—with Anna.  You can come to Washington anytime and wear whatever dress you want.
Len—I’ve seen a side of you I’d never seen before in 15 years I know you. I’m not surprised. I’m just impressed and grateful.
Lori—I usually have a way to express myself. But for you I’m speechless. You are not just a wonderful sister. You are a wonderful person through and through. I don’t know what I would have done without you.
There were no guests today—just aunts, uncles, nieces, and nephews enjoying a fabulous day in central park.
Funny moment of the day was quintessential Anna – in her Cinderella dress, and Alex—in his underwear, running down the hallway.

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.  

I would like to start the blog by repeating the request to submit your letter to haley soon. I’m not sure if Day 100 (Sunday) will be the last, or I will continue through our transition back to DC and until at least things with her Tcells and red blood cells come to some sort of conclusion. If Day 100 is the last day, the blog will be up for a while, so you can continue to add your comments.

I really don’t want to say goodbye to the blog just yet. I’m not yet ready to leave it. To leave you all. Maybe once I settle in. There is just too much transition for all of us.

Today we said goodbye to Aunt Bea, who came and took care of Haley the whole day so I can run errands and do work. But it was really for Aunt Bea to spend as much time as she could with Haley before we went back. And even when she left, she had a very hard time saying goodbye. There are only certain poeple in Haley’s life that she responds to immediately with a tongue wag and body wiggle. There are only certain people Haley will let hold her even when I’m standing right there.  There are certain people that Haley will rest her head on. Aunt Bea is one of those people. She came twice a week every week we have been here. She calls almost everyday. Aunt Elana also did the same, taking her only day off to come and be with us, either in the hospital or once we were in Central Park. I am not lumping their experiences or their bonds with haley. but they both exhibited the same determination to witness Haley’s transformation through the sick days and healing days, through whatever unique phase Haley would go through. Aunt Bea is an OT and Aunt Elana is an ST, but I think their interest went beyond that.

All of haley’s aunts and uncles have been wonderful and loving and devoted (There will be a very very long blog about Lori and Len soon, don’t you all worry), That must be said.

Aunt Elana, we will miss your visits and hope you come to DC really soon.

Aunt Bea, what can we say, but thank you. for loving Haley as you did.

Funny moment of the day was when random people whom we’ve never met stop us in the hallway of Haley’s (Arnie and Sandy’s) place, saying, “I can’t believe you’re leaving!”