Sunday, September 14, 2008

Three Wishes

Oh, hi. I’m so glad you’re still here.

The combination of glorious summer, massive writer’s block and too much death has kept me away. But I’m back, and will try to update with more regularity. I’m sorry for any worry I caused. And honestly, you deserve better. You’ve been so kind and good to us over the last 17 months, and then I go AWOL on you. Not nice. So are we still friends?

Wish 1
In July, we spent a few days in God’s square mile at the Jersey shore. Ocean Grove is home to the Methodist Camp Meeting Association and a slice of delicious bona-fide Americana, if you like ice cream, religion and beach. Thanks to a dear and astute friend (hi Martha!), we revived ourselves with salt spray and spiritual intent.

My aim was profane: get a tan, come hell or high water. But the beach was closed during church, which meant all the time. And I was mesmerized by the Great Auditorium, a beautiful and huge house of prayer, made totally out of wood, with sliding barn doors, curved ceilings and seats for 6000. On Sunday evening at sunset, Toby and I found ourselves inside, where “so be ye holy” blinked in old-timey lights above the altar and a rock band played on stage.

The service was unlike anything I’ve ever experienced: accessible, immediate, simple and incredibly emotional. There were no prayer books, but there was a huge video screen with lyrics and sweeping photos. People stood or sat, some danced. And there were many, many swaying hands in the air. Toby grooved to the constant music. And he said, “Mommy, do it like that,” pointing to the family in the front row who were raising their hands to God. So I did.

The doors were wide open, the sun spilled in. And then this:
“Mommy, you know what?”
(OK, what have I done? He’s about to accept Jesus as his personal savior.)
“What, sweetie?”
(Here it comes. How do I respond?)
“I really like the drummer.”
“Me too, sweetie.”

And then the band left the altar/stage, and things quieted down. Toby wasn’t in any rush to leave, so I settled back. The minister introduced the time of silent prayer with heartfelt and intimate words. But first the video screen faded to black with white type. It said (and this is from memory, so I’m not doing it justice):

“Are you here?

Really here?

Do you think the music was too loud?

Are you thinking about your day tomorrow?

Maybe you don’t feel comfortable.

Maybe you’re tired. Maybe you’re ready to go home.

God is here. Are you?”

Quiet, so quiet.

And then time and space opened up for me at that liminal moment, when all is possible. I let the prayer wash over me, hungrily, gratefully, putting my heart and words together before the moment passed. And there was Toby with Gus and Max and Liam, and all the children with neuroblastoma who have become my children. And I asked the God that I don’t always believe in to please lighten their load.

As I blinked away the tears, I stole a glance at Toby. His eyes were shining, his lips curved into the tiniest smile.

And then he said,
“Mommy, do you know what I wished for?”

And I thought to myself, yes a prayer IS a wish.

“I’m going to tell you my wish even though you’re not supposed to tell wishes. Because I want you to remember it.”

“OK. But you don’t have to tell me if you don’t want to.”

“Mommy, listen. I wished to live four times on earth. I want to live four times."

And then he paused, thinking about it, checking to see if he had put the right words to his deepest, most private yearning. I had my heart in my throat, afraid to breathe, willing myself to remember every second. And then my almost-5-year-old continued:

“Yes, Mommy. I wish to live. Because I really like it here.”


Toby is still in treatment. Since my last post he has endured 4 more cycles of chemo. He was the third child at Memorial Sloan-Kettering to undergo an experimental treatment utilizing Rituxamab and Cyclophosphamide, in an effort to knock down his HAMA (the immunity he developed to the 3F8 monoclonal antibody treatment). We made two visits to the urgent care center with fevers, and spent four days inpatient. He has become almost completely comfortable with having his port accessed and de-accessed. He has had more hearing loss. And he scared everyone last week with a very high LDH level, which resulted in emergency scans. Thank God, on Wednesday we found out that all scans were negative for neuroblastoma.

Oh, and he celebrated his 5th birthday (wish #2)

and spent a week in France on his make-a-wish trip (wish #3, more to come in next post!)

and started kindergarten(!!!). He has hair the color of sun-kissed wheat, and is up to 48 pounds. He reads SpongeBob comic books, takes showers by himself and eats at least 2 italian ices a day. He has a new invisible bug friend named Mercator, and he’s learning Spanish at school. He is an awesome little boy.

The NB team wants to stop the irinotecan/temozolomide chemo, because of the risk of Toby developing a secondary cancer. They will meet on Tuesday to come up with a new plan. I promise to keep you updated.



Anonymous said...

I continue to cheer on Team Toby from California! So thankful for the post and even more thankful for the good news that it contains!

Anonymous said...

So glad to hear the wonderful news! So glad you found Ocean Grove healing. Can't wait to learn more about "Toby Takes Paris".
Keep maing wishes,

Just Me said...

Thank you for updating us! I'm glad all of you were able to enjoy a little summertime.

(And may I say I was giggling hysterically over the "What have I done" paragraph. You have a beautiful way with words.

martha said...

Yay! again and again and again. I'm so happy to hear all of it.
Sending you all ots of love,
Martha and the Knutsens

Anonymous said...

Wow - 5 years old and in kindergarten - music to all of ears - just so you know - those of us who are the friends you cannot see would never leave you, Toby or your family - just as we know you are out there, so too are we - also praying to a God we are not so sure is out there.

LindaSueBuhl said...

So wonderful to find you again - have been checking back hoping for you to reappear. What a reappearance! You are a wonderful writer and so much of what you relate to us is what we have prayed for you (absolutely sure God is out there). Toby is just as amazing as we've always thought - gifted with a special grace to change the world in which he moves. Thank you for sharing with us - WTG Toby!(and Stephen, Mooki and Yoni)

Anonymous said...

Happy Belated Birthday, Toby!

How are you doing? I like your new hair. I'd still trade with you if you want! How is Mercator doing? Tell him I say hello. Or, if he's a girl, tell her I say hi. I'll see you this November. I'll be in town for a month. Love always,


Anonymous said...

Toby looks glorious -- glad that he is doing well!

Anonymous said...

What a sweet treat to read and see all this. Thanks, and welcome back!

Nancy W.

Anonymous said...

a big, big exhale, laughing and overflowing with happiness for you all...I just knew you were spending every minute enjoying wonderful things. Don't worry one bit about writing; we are thrilled that you were so distracted by happiness, prayers being answered and wishes coming true!

Regina said...

Just checked back again and found this update--thank you, Mooki, and Happy Birthday-and-Kindergarten, Toby! (And hope Yoni has recovered from whatever injury is under his walking cast in the photo.)

"I want to live four times." I will carry that wish with me as I move through this Season of Turning, with a prayer that I be as worthy of my life--as present to my life--as all four of you have been in your daily lives throughout this journey.

With much love and many blessings for the New Year to come,


Anonymous said...

You are an amazing family. Toby is an amazing boy. Even with all of the horrors that go along with cancer, you continue to give him the gift of letting him be a child. With all the struggles, Toby can still can see the beauty of life. Happy 5th Birthday!!
Love you,
The Silbermans, Sara Eric and Drew

Anonymous said...

We Love you all- we simply, without any expectations, completely LOVE YOU ALL.
Keep loving and living in the NOW.

Blessings dear one,

Anonymous said...

wonderful to hear from you! may it be a sweet and healthy new year for you all.

Anonymous said...

What great news to hear before the new year, and how soulfully communicated. So much life is packed into little Toby, and it's clear where he got it. Stay amazing, all of you. May it be a sweet year.

Susan said...

I am so happy that youve updated us. I think of Toby nearly every day -- always sending best wishes.

Anonymous said...

Wish number 4: a sweet year for all of you, and a speedy recovery to Toby.

Anonymous said...

Shana Tova to the Pannone family - may this year bring you all your wishes and dreams - Toby and all his fellow warriors owill be in our thoughts as we usher in the new year

Former park sloper and beansprouter

Lisa Shuchman said...

L'shana tova! We wish you all the best in the new year. And we hopt to see you sometime soon at BNS.

Anonymous said...

omg, i absolutely positively LOVE your posts. this site is my religion. so uplifting. i'm so glad you're back. the words complement toby's beautiful face in these pics.

lots of love to you all.

former park sloper/bean sprouter as well.

Anonymous said...

I hold my breathe each time I come here - to steel myself for your strength and to steel myself if bad news. I am so happy to read that you had a nice summer and that Toby started Kindergarten.

I, too, hope he lives four times.

Prayers and good wishes from another Brooklyn mom.

LindaSueBuhl said...

Thinking of Toby this week - and all of you but his fabulous face just stuck in my head. My prayer is Thanksgiving will be a day for all of you to be free to do that - give thanks.