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?
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.)
(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?
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.