Saturday, September 14, 2013

L'Chayim! To Life! - BMT +18

The number 18 in Hebrew is equivalent to the word Chai (8th letter +10th letter of the Hebrew alphabet) meaning "life." How fitting that BMT +18 should fall on Yom Kippur, a day where we pray to be written in the Book of Life. What a blessed Shabbat and Yom Kippur. Spending the entire day with one of my kids just relaxing, talking, reading, playing and watching a film. It was one of the most relaxing Yom Kippur days I've ever spent. While I missed seeing all my friends and family I didn't miss the stress that goes along with preparing for the High Holy Days and living through them. Today Sam and I were allowed to just be, my job to tend to his every need and help his continual healing and development. His job to rest, nibble at foods as he reintegrates them into his life, play, talk, listen to me read him a book, and rest. It felt good to let go and allow time to simply flow around us.

At dinner time yesterday the hospital was almost quieter than I've ever seen it on a weekend. Almost deserted. It was a warm and quiet Shabbat where we simply watched a movie and then went to bed. A quiet night led into a quiet morning where we woke up slowly and then watched Now You See Me, Now You Don't a second time in order for me to explain everything Sam had missed the first time. It was still just as good the second time.

Sam confirmed that while the Marinol medicine made him hungry, and curbed his nausea, he hates the side effects. Point taken. Back to the drawing board. But when the munchies hit he did nibble strawberries, circle cheese and a few bites of hamburger. It was impressive just to have him asking for food let alone tasting it.

Sam's numbers are amazing. His ANC is 1036 and his platelets are holding steady at 116 (150 is normal). He's still battling bouts of nausea, but the doctors think that may just be withdrawal side effects as they wean him off of the morphine. 

In the good moments he's himself, inquisitive, fun, playful, funny and cheerful. He does his best to get through the pills and the time. Each day is just another day closer to being healthy enough to check out of this house of healing.

Small things that make staying with Sam a joy: We never fight about how much tooth paste I put on his tooth brush or the fact that I put it on (that would be Solly). He never asks me repeatedly to cover him (not even if he needs my help when he gets up to go to the bathroom in the middle of the night). (also Solly) And good night means goodnight, not the time to ask the thousands of questions he waited until bedtime to ask. (That is Yael.) Small things, I know, but something that brings a peaceful calm to the end of a day after doing our best to live fully through another 18 hours staring at the same four walls. To say Sam is resilient doesn't even begin to cover it.

In life I love to read t-shirts. They tell me where people are from or where they've been on vacation. They tell me what music the wearer listens to or what movies they love. They tell me what sports teams a person favors or even where they went to college. Tonight on the floor someone was wearing a University of Connecticut t-shirt. I asked my usual question, "Did you go to U-Conn or just wear the shirt?" And was surprised when the dad responded "I went there. Graduated in '92." I grew up in Connecticut. He was a year younger than me and grew up in New Jersey, near Rutgers. He was one day after diagnosis. It took doctors three weeks, and many doctors to figure out that his three year old daughter had ALL leukemia. He was glad just to have a diagnosis and be somewhere where people actually knew what was wrong with his daughter and how to begin helping her get well. I told him we were a year out from diagnosis and BMT +18. I told him the team here was the best and would take excellent care of his daughter. We shook hands, wished each other well and returned to our rooms.

I've walked over a year in my own shoes and yet still can't imagine what it is like to walk in his shoes. I count my blessings every day and know it can always be worse because I see how many of these rooms are filled on a daily basis, and see how many people I don't know on this floor compared to the people I do know here. It has been challenging enough caring for Sam and chaperoning him through his personal hell to this bright spot of BMT +18. Every good day is a day to be blessed. Our good and blessed moments completely outnumber all the bad moments. We could say we are lucky, but truly we know that saying we are blessed is way more accurate. Since I don't tend to meet too many dads on this floor I hope meeting someone whose child is doing well and talked about the excellent doctors gave him some peace of mind that everything might turn out ok and confidence that he and his family were finally in the right place they needed to be. It certainly made me hug Sam tighter after I sang him to bed knowing how far we'd come to get even to this day, this day of life and blessings, this day of being sealed in the book of life, this day of joy and comfort in each other's company, this day of peace.

May you all be sealed in the book of life and may you experience a year of sweetness filled with the blessings of being surrounded with love, family and friends.


  1. Sweetness and joy to Sam and the whole family, Michael, as God seals you and all of us in the Book of Life. My prayers and thoughts are with Sam always.
    With Love,

  2. yay, chai!

    these posts are a gift -- i don't want to sound sentimental or glib but i feel privileged to read them. not only do i feel close to your wonderful family but i feel i'm getting insight and (non-lecture-y) advice about my own relationships and way of looking at the world. i'm a little weepy (i blame post-fast...uh, gunno go with all systems being confused from lack of caffeine). wanted to say thank you for sharing sam's and your family's story with all of us.

  3. Another beautifully written entry, inviting us in to this world of challenges and blessings. You are all an inspiration, but Sam is truly remarkable in his resilience! I am in awe. The posts keep making me weepy -- but this time happy tears! -- The Chai numbers are no small sign in my view, and seal my belief that good things can happen even when it's such a struggle.

    Please tell Sam Ben sends "BIG, Happy hellos!" and is looking forward to when they can "play in person again"... and hopes in the meantime maybe they can skype sometime soon...

    With much love and light, you are in our thoughts and prayers,

    The Kerches :)

  4. May the new year bring all of you -- and most especially Superman Sam -- an abundance of blessings.

    xoxo from NYC,
    ~ Jane.