Thursday, March 6, 2008

Some days it hurts too much to write

February was a hard month. The little boy on the couch returned, barely able to lift his head from the pillow. During the time when his eyes were sunken, when his skin turned yellow and papery, when the black rings threatened to swallow his face, I couldn’t think of anything I could possibly write to communicate our desperation, exhaustion and fear.

The days stretched into weeks, and weepy lesions crept up Toby’s arm. Vomit basins multiplied in corners, under the couch, near the beds. Again. And there was diarrhea that would not stop. At night we stripped the bed over and over, but the black liquid still burned through two layers of skin.

Toby spent endless days in the ER and a week in isolation on a ward of adult lung cancer patients. Just as we were about to be discharged, his blood cultures showed two bacterial infections that required whopping doses of intravenous antibiotics, administered every six and eight hours in the hospital. We finally came home to a refrigerator packed with bags of antibiotics and an IV pole that took up residence in the playroom. While Stephen traveled to South Carolina for his father’s memorial service, I played nurse, injecting Toby with a dizzying amount of medicine, recording the hours and tubes in my notebook, so I wouldn’t forget the next dose. At night I set the alarm for 1:00, 3:00, 3:30 and 4:30, a twisted reminder of life with a new baby.

It took a while to figure out how to leave the house, but by Saturday, the snow beckoned. Here was a chance for Toby to be a real child, and even though he was weak, even though he protested, I hoped that sledding would bring back my boy. At noon in Prospect Park, I crouched on the hill, flushing his line with heparin, wiping the clave with alcohol. And then we rocketed down: Toby, me, and the medicine ball of vancomycin. He cradled it in the pocket of his parka, and shouted with joy.

I do not know how to explain what Toby’s life is like. We spend most of our time trying to distract him from the gut-sinking realization that his surroundings are truly awful: the rasping sick people with tubes coming out of their faces, the man without an eye in the elevator and the children who are playmates one day and die the next. We lost three beautiful, precious children in February, children with tremendous spirit and resolve. The world is a poorer place without Carter, Eden and Harrison.

With so much sadness and despair, it is incredibly difficult to keep going, but somehow we must, for Toby’s sake and for all the other children battling this disease. The hospital has become our second home, even though every day we fight the urge to run far, far away. Instead, we encourage Toby to inject his own saline, we turn the 14th floor into fodder for a scavenger hunt, and play guessing games about how much he will weigh. Toby writes letters to Dr. Kushner, outlining his inventions for a universal medicine that tastes good. He calls his imaginary bug friends and makes appointments to meet them in the hospital cafeteria. He talks the nurses’ ears off about trains and weekend schedules.

During this bleak month, Stephen and I each had one defining moment that brought on the tears. For me it was the day that Toby didn’t say a word for 5 hours and then whispered, “Maybe one day we can visit Elizabeth at Beansprouts?” For Stephen, it was after a grueling day of diarrhea and vomiting, when Toby asked for Mercer Mayer’s book “When I Grow Up.” Stephen’s voice started trembling as he read aloud the child’s wishes of becoming famous chef, dazzling trapeze artist, race-car driver. It’s the most innocent and universal question I can think of: “What do you want to be when you grow up?” But for parents of children with neuroblastoma, it’s not a simple question at all.

We know that Toby may not grow up. We know that school and sleds and ice cream are gifts to be savored right NOW. We are so very grateful for the opportunity to spend time with our wonderful boy, drawing maps, making party hats, taking train rides to anywhere. After the ides of February, these last few days have been excellent indeed. More soon.

mooki + stephen


Regina said...

Dear Mooki and Stephen,

If the silence of supportive presence could somehow be conveyed in cyberspace, I would not be writing words that must pale in comparison to yours.

Toby has been central to my regular healing prayers at PSJC, on the Lower East Side and in Queens during these past few months, amid other wrenching and relentless losses within these various communities. Again and again, "Deep calls to deep" (Psalm 42).

You dare to write about what is both unthinkable and inescapable, yet manage at the same time to embody the blessings of boundless gratitude and love. May all of us who care about and support you continue to be worthy of all you so generously share with us.



Anonymous said...

I'm so moved by your bravery and eloquence, Mooki. You and Stephen are amazing. I am beginning my journey back to Brooklyn tomorrow morning. I can't wait to see you all and to spend time with Toby this spring. Love, Randy

Anonymous said...

We are a family ever moved by your resilience, your hope and your unflappable pragmatism that you express so beautifully (heart-wrenchingly) here. May these first whispers of spring that have happened upon Park Slope harbor a new beginning for your family, that the warmth of this new sun will bring some much needed respite to your family, and that above all may Toby be well.

LindaSueBuhl said...

Hooray for snow and sleds - hooray for every moment Toby is joyous. My words are inadequate - our prayers haven't ceased -for comfort, for peace and healing. Your writing is beautifully painful or painfully beautiful.

gisele said...

Getting on that sled was one of the most courageous, loving things I've ever heard a parent do. You both are amazing parents. I hope today, this weekend, and the months/years to come bring many more moments of joy for toby and all of you.

Anonymous said...

I couldn't say it any better than others here. You are wonderful parents, Toby is a wonderful little boy, and I pray constantly for Toby's healing so all of his little-boy dreams can come true.

Anonymous said...

i have a little heart attack every time i wait the blog page to load. i check every day, not knowing if i'll worry or cry. but what matters is that i will always, always check. i will always think of you, Toby, every day.

i'm so glad you got to be out in the snow.


Anonymous said...

May February fade from memory and be no more. May this little boy get to experience snow, school, train rides and all that he wishes. May you and Stephen find all the strength you need -- and lets hope that the Band of Parents can help with the doctors to eradicate this vicious disease. The world prays with and for you

Anonymous said...

I am a friend who heard about brave Toby last June when I heard about the blood and platelet drive. I gave platelets then but have since moved to Los Angeles. I keep checking in on your beautiful family through this blog and want you to know I read with tears and prayers. You are in my heart. May the coming Spring be a time for life to bloom once again.


Anonymous said...

Dear Mooki, I sat with my good friend, your mother (another brave woman, just like you!) on the beach in Haifa yesterday, talking about ourselves and of course about you and your family. And now I send you my love and hope for many good days in March.

Valerie said...

I'm a Park Slope Parent who has been following your family's horrific journey since last spring (yesterday and a million years ago.) Not a day goes by that I don't think of your family. What incredible parents you are, not to mention being terrific assets to the human race. I will continue to pray for good news, or at least, more moments of joy which you all so deserve.

Anonymous said...

Dear Stephen and Mookie, After your devastating story, you show pictures of Toby SMILING! "A little child will lead us", "Suffer the little children to come to me". He seems to be saying, "It's okay, Mommy, I'm okay!"
The suffering of little children is a mystery we'll never understand. So we can only pray for Toby, and for you, every day, that you'll continue to have the strength and courage you need,to hold it all together with your beautiful love, as Toby is holding us all together as a caring family. We keep you all in our hearts. Love, Aunt Blanche and Uncle John

Deqlan said...

I would love to leave some words with you, that helped us through the darkest and toughest days of Deqlans treatment



I wish for Toby to improve each and every day and for comfort, guidance, hope, strength, faith and trust for his wonderful parents.

We are so Blessed to be the moms of these beautiful boys and all we want to do is make everything better - if we could we would take this away and put it on ourselves in a heart beat....

We just got to continue trusting, in Our Lord that they will continue to be healed
God Bless
Samm mom to Deqlan stage 4s nb dx 25/05/07 ned 16/01/08

Eric and Sara said...

Dear Mooki and Stephen,
I am so happy to hear of your moment of joy and screams of happiness down a beautiful snowy hill. I am glad to hear that you have some moments where you can have a break from your pain. You are always in our thoughts and prayers.
Love, The Silbermans

Anonymous said...

Dear Mooki, Steve , Yoni, and Toby,
We pray for you daily and keep you in our thought.
love always,

Anonymous said...


Anonymous said...

Thinking of all of you on this Sunday night, and sending love and wishes,

Nancy W.

Anonymous said...

Always thinking of you and praying for all of you. I hope this March and the coming months are easy ones.

Anonymous said...

Tonight we read the Megilla. As we swing the grogger, I'll subsitiute Neuroblastoma for Haman. Who knows?
With much love and even more hope -

Anonymous said...

Dear Mooki and Stephen,
This morning I read your blog for the umpteenth time and I still cry. But I have Hope and Faith which help me dry my tears. I think constantly of you, Toby and Yoni, and I pray daily that all your dreams and hopes for the future come true.
Love, Mom Pannone

Anonymous said...

i read this blog every morning and when I'm starting up the computer, my thoughts are usually about how I want to make more money, how I wish I had a bigger apt. and a cuter bag over my shoulder. Then I open this page and see Toby with that big smile and read your lovely words of a family filled with love and hope and pain, and I am, once again, reminded of the important things in life. Everything in perspective. And I thank you. My thoughts at this moment are with you and your two beautiful sons. God Bless.

Anonymous said...

You will always be in our prayers. Sending love to all of you.
love always ,
sarah jo

donna said...

your post made me cry. it is very difficult to read of your family's pain, yet i check the blog frequently. i want so desperately to log in and read that toby is in remission - words i'm sure you dream of writing.

the love you feel for your son and your strength to carry on are an inspiration to all of us. you make me want to be a better parent.

love and good thoughts from delaware.

Cate said...

Sending you healing prayers and wishes for more moments of joy - the snowy hill slide sounded beautiful and just perfect.
I found your blog via Liam Witt's or googling him for an update after I read the Parent's Mag article. My heart goes out to you and your family and how I wish that you did not have to be on this journey whatsoever. You are truly an inspiration and as Donna said, make me want to be a better parent.

All our best and continuing prayers for health and healing from California,
Cate and family

Anonymous said...

I am not sure how I found your site but I am praying for your family. Hugs and prayers. Carolyn Wing grandma to Laura Stage IV neuroblastoma carepage LauraVDB

Anonymous said...

I've been meaning to say that I hope you all feel free to just write a few lines sometimes, or just to say hello, or that things are tough, or whatever. I'm a big fan of Mooki's eloquence and Yoram's heartfelt prose, but wouldn't want any of you to think that those of us in cyberspace expect such a high level of writing all the time! Please feel free to use us for support and connection, whenever.

With love,
Nancy W.

Anonymous said...

I hope March has been good and easy for all of you. You're always in my thoughts and prayers.