Sunday, November 18, 2007

Pain and Memory

When Toby was eight days old, my father held him during the ritual of circumcision. We thought it would be a great honor, and my father readily agreed, but after the ceremony he told me that he was terribly shaken by the experience. I don’t remember the actual cut (I wasn’t in the room), but I do remember Toby’s awful, innocent screams, which propelled me into the kitchen, where I gave him my pinky finger to suck, an abysmal but temporary comfort. Stephen was crying in the bathroom and my father was completely white. A few minutes later we regained some equilibrium. Our family and friends wrapped us in embraces, I nursed Toby to sleep, and we felt the magnitude of welcoming our new baby into history and community.

But my father was still disturbed. Later that evening we spoke about pain, and whether it was possible that Toby would remember the trauma associated with circumcision. My father felt strongly that there had to be some remnant of pain hardwired into Toby’s synapses. The experience was too intense to simply slip away.

Circumcision seems like a walk in the park compared to last week. And after holding my writhing child for five days of 3F8 treatments, I wonder about pain and hope it’s not permanently etched into Toby’s pathways.

3F8 is a mouse derived monoclonal antibody that is injected into the bloodstream where it finds neuroblastoma cells, attaches to them and then signals the patient’s own white blood cells to kill the neuroblastoma. The white cells are boosted into “killer” cells through daily injections of GM-CSF. With time, as Toby’s own immune system recovers from chemo and becomes stronger, the 3F8 treatments may help his body learn to fight tumors on its own. The aim is to give repeated 3F8s for up to two years, on a cycle of one week on, two to three weeks off.

The main side effect of 3F8 is pain because it also attaches to a marker on nerve cells. And the pain is excruciating. I can barely describe it. And that’s the real reason why I haven’t been able to write in two weeks. All I wanted to do by Friday was crawl into a dark, quiet place, and not relive the experience by putting pain into words.

Before the infusion started Toby was premedicated to ward off fever, pain, and possible allergic reactions. He was unaware of what was about to happen, and lay on the bed watching tv. After about 15 minutes he started fidgeting and twitching, as if he couldn’t find a comfortable position. And in another 5 minutes the full force of pain bore down on him. The room was filled with medical personnel, who monitored Toby’s reactions to the infusion. Oxygen was started, a nebulizer was used to open his airways and pain “rescues” were pushed into his bloodstream every 5-7 minutes. His pulse climbed to 187. Over the course of 50 minutes, we went through boxes of hot and cold packs which we rubbed on different parts of Toby’s body where the pain was localized, mainly in the abdomen. We tried to soothe him, to hold him, to dim the lights and follow his lead, but he truly was alone in the land of pain. And then, exhausted, covered with hives and drenched with sweat, Toby fell asleep.

By day 3 we began to find a coping rhythm, although the pain was even more difficult to observe. Toby used fewer rescues and we crawled into the bed with him for the duration of the infusion. He needed to grip onto my shoulder during the worst waves. On day 4, he began keeping track of his blood oxygen numbers and refused oxygen and the nebulizer. I have no idea how it was possible for Toby to do this… imagine being in the throes of transitional labor and telling the obstetrician that you would like to discuss apgar scores. Toby also stopped screaming and requested that we not talk to him. He seemed to know what would happen and focused all his energy on internalizing the pain and taking deep breaths. Incredible, really. Other NB parents told us that the week would be very difficult, but get easier each day. I actually found the reverse to be true. The pain was shocking on day 1, but knowing that it would return each day was almost more than I could bear. Also, contrary to what the doctors told us, the heavy narcotics did not have an amnesiac effect; on days 3 and 4 Toby wanted to know exactly when the infusion would start, and he ordered us to get the hot packs ready for his tummy, the cold packs for his head.

The afternoons and evenings were a complete blur. Toby was completely knocked out yet restless. He couldn’t pee or walk, much less eat or drink. The soles of his feet and his entire groin area were intensely sensitive and he found it difficult to stand. And then morning would come, we would head to the hospital, give him the GM shot, watch as he ate a big breakfast, and wait for the pain to start.

By Sunday Toby had recovered enough to make a trip with me to the Staten Island Children’s museum and the Prospect Park Zoo. We had a fabulous day. And on Monday, he was permanently tattooed in 7 spots, to help guide the radiologists during radiation treatment. We are now in the middle of 24 rounds of radiation to the neck and abdomen.

I’m sorry it has taken me so long to post. Living with neuroblastoma is so singular, isolating and overwhelming, that I feel like my words don’t even come close to describing what is really going on in Toby’s life. We can’t thank you enough for checking in on us, sending supportive emails, delivering food, visiting if you have a chance.


The painful reality of neuroblastoma is that more than 50% of children will relapse, and the survival rate for children diagnosed with high risk disease like Toby is in the neighborhood of 20%. We have joined with other NB parents to act against these terrible odds. The Band of Parents, together with loads of volunteers, is making and selling gourmet cookies to raise money for research, development and treatment at Memorial Sloan-Kettering. The delicious recipes are from renowned cookbook author Sally Sampson’s recently released cookbook, Cookies. The cookies are $30 a dozen and almost all of the proceeds will go directly to research at MSKCC. You can purchase online at We hope you’ll buy lots of these delicious cookies and ensure that Toby and all of the other children fighting neuroblastoma receive the future treatment options they so desperately need.

Thank you so much.

Love, mooki + stephen


Anonymous said...

Thank you for letting us - the anonymous people who are focusing their positive energy your way - know what is happening. Your analogy to the pain of labor rang true - it's hard to explain, hard to live through other than by just giving over to it while it's happening. But Toby isn't in labor and he's so young. I don't know what else to say other than, your strength and love shine through and our thoughts are with you.

Anonymous said...

Dear Mooki, thank you for taking the time to write. I send you good vibes to help you through the days.

LindaSueBuhl said...

You wrote exquisitely of something horrible - Toby's pain. We continue to pray for him and all of you. Praying for his healing and your strength - thank you for the update we know it takes a great deal for you to have to put this to "paper" and you honor all of us as readers with the opportunity to care for you.

Mirm said...

Oh, Mooki... there are just no words... I continue to marvel at Toby's strength - his patience and will - as well as yours. Wishing Toby days free of pain and filled with play. Mirm

friend of Toby said...

In spite of the fact that you feel there were no words to describe the experiences of the last two weeks, your ability to put the unthinkable, the unwritable the unbearable into words, so we all can have some ability to understand what you are all going through is extraordinary. I remember commenting on your writing last spring and your saying how therapeutic it was for you. I still hope it has some therapeutic value for you.
With love and healing,

Anonymous said...

Dear Mookie,
We continue to pray for Toby and for your family. Today our family convened to pool our energies together and Kiera led the prayer. Toby is an extraordinary child, put up to the challenge that no child should ever have to face, and no parent should ever have to witness.
We hope you are soon feeling again like connecting with others and that you will accept our invitation to come to our home for dinner, or just a visit/play date.
Stephanie (Kiera's mom)

friend of david and betsy said...

Dear Mooki and Stephen,
Ditto on previous comment by Ilene. Your words bring the reader as close to reality as is possible. This is an amazing articulation of an experience I didn't think I could even imagine. May your words continue to awaken people to the need for more research and treatment options for neuroblastoma. Sending strength.

Anonymous said...

I find it amazing how Toby's four-year-old mind finds ways to bring order to his (and your) ordeal. What a fabulous child.

I pray, I pray, I pray.

Anonymous said...

Sending much love your way, and happy to read about the Band of Parents and delicious cookies!

Nancy W.

JoAnn said...

We had dinner last night with someone who had a rare cancer, one that only has a 12% cure rate. She fought for good treatment and cutting edge care, and thanks MSKCC for helping her land in the 12%. You are in the best place, with the strongest support group, and the most amazing child.
Our hearts go out to all of you.

Anonymous said...

thank you for the words. while i cannot know how you feel i hope that reading your thoughts gives you companionship--you are not alone. we are all right here, every day.

Anonymous said...

Thank you for opening your lives to us - the many people who have heard Toby's story and been moved by it. And thank you for giving us a chance, through your words, to know Toby and love him and pray for him and for your family. Your family now occupies a part of so many hearts. You are not alone.

Anonymous said...

There are so many of us in complete support of you, Stephen and Mooki...we all send strength for you to fight the fight, and we send love to dear Toby
Karen Mesiha

Valerie said...

I've been waiting for this post, thinking of Toby and his family every day. What I find most wonderous is the fact that after all of this ugliness, he is able to bounce back and enjoy life so soon afterwards. It's good to be reminded of the resilience of the human spirit and the innocence of childhood, even when life is making it nearly impossible to retain any of it. You are all in my prayers every day.

Anonymous said...

How fortunate you are to have such a strong and beautiful boy.

How fortunate he is to have such strong and beautiful parents.

You are in our thoughts...

gisele said...

Thank you for posting Mooki. And thanks for sharing the band of parents link with us. I posted it on my company's blog:
and will continue to spread the word on and offline. Tell Toby I think of him everytime I ride an elevator or get on the subway.

Anonymous said...

Thinking of you and yours, sending you all of our most positive thoughts, we will be saying extra Thanks this Thursday for being given such perspective by your openness and eloquence. You are in our hearts.

Anonymous said...

all you want for him is to get better. that's all we want, too. no child should have to endure this. thinking of you always, even if I don't always know what to say.

Anonymous said...

My family and I are prayin for Toby every day. The postin today made my cry as no child should go through so much pain at such a young age.
Love always, sarah josephine

Anonymous said...

mooki -

your pain is palpable and your writing is extraordinary. i am wiping tears away as i type.

i've always thought the measure of a good writer is her ability to make you feel like you are a part of the scenery. reading your entry, i felt as though i was sitting in the room with you and toby. it was a difficult and horrifying, but beautiful read.

know that we are all there with you in spirit.

Anonymous said...

Sending love from Blackwell, Oklahoma (on my way from Dallas to Lawrence, Kansas). I can't wait to see you when I get back to Brooklyn this March, Toby! Love, Randy

Anonymous said...

Just a note from a perfect stranger who now site, wiping tears away, at her keyboard. My entire family wishes you and Toby the fiercest luck - and I'm so sorry to hear of the terrible pain. Nobody should have to watch her child go through this.

Anonymous said...

I just happened to read this and I just wanted to say I wish you and your family all the best! I myself have also NB. So best greetings from opposite side of the world, cold Finland!<3 May the power of universe take care of you on these hard days.