Tuesday, December 18, 2007

How Toby Is

A few weeks ago, in between Toby’s morning and afternoon radiation treatments, we went to the Sony Wonder Lab in midtown Manhattan. Toby’s eyelashes were just starting to grow in, giving his eyes the slightest dark rim, as if they were lined with makeup. For the first time in many, many months there was definition and softness to his face; he looked pretty and felt pretty good. No nausea yet from the radiation to his neck and abdomen. No pain from injections or infusions. No hives. A little tiredness perhaps, but nothing we couldn’t handle.

We waited for a long time with the tourists and day-trippers, finally entering the sardine-packed elevator. Toby wanted to push the buttons, and stood near the door. A little girl, maybe 6 years old, stared at Toby and asked her father in Hebrew, “Why is that boy bald?” The dad glanced in our direction, assumed that we weren’t members of the tribe, and confidently told his daughter, “He has lice, and his parents had to shave his head.”

I found myself in a tight spot. My first thought was to laugh in relief. Lice? Are you kidding me? AS IF. But then the shame and self-righteousness poured down in equal measure. Does Toby look like he has lice? Did I remember to wash behind his ears? Oh God, am I a slacker mom? Whoa. Just who is this idiot anyways? And why is he pontificating to his greasy-haired child about Toby’s lice? Who made him king of enlightened Semitic reasoning? I opened my mouth to set him straight.

And then I remembered that Toby is bald because he has cancer. Cancer so awful that it may kill him. Cancer so aggressive that it has required near-constant vigilance for the last 8 months. Listen honey, he’s bald because an hour ago he was lying naked on his back with chin strapped and restrained, receiving direct high-energy beams of radiation to his neck. And he’s going back for another round at 3:00. We tell him stories through the intercom and he lies perfectly still as the machines rotate around his body. He is a very sick boy. I wanted to say all this, but didn’t. And then I found myself wishing that he had lice.


Since that day Toby finished 14 rounds of radiation to his neck and 24 to his abdomen. We’ve gone through a second cycle of 3F8 antibody treatments, which was similar to the first. I’ve returned to work part-time. And Toby has spent 9 hours at Beansprouts (school!) over the course of 5 days. He’s not bald anymore.

We’ve gone to Powerplay (an indoor playspace) twice, visited wonderful friends in Princeton, been to Fairway (hallelujah!), eaten at Uncle Moe’s, looked at the dinosaurs at the Museum of Natural History and made latkes. Over the last 2 weeks we’ve heard that more than 50 of you baked and packaged cookies, to help fund new treatments for children fighting neuroblastoma. We are so blessed to have a bit of normalcy and such wonderful friends.

This Friday Toby will have an MiBG scan and bone marrows, the first evaluations of whether 3F8 treatments have been effective in chipping away at his disease load. The days leading up to scans are incredibly difficult for us. There’s the very welcome possibility that Toby has less neuroblastoma in his body. There’s an equal chance that the disease is stable or has progressed. We have no way of knowing. And so every day is a battle against fear, uncertainty and what-ifs. Toby complained of eye pain yesterday: It could be nothing or it could be neuroblastoma. He’s been tired and not himself since Saturday… again, it could be delayed effects of radiation, low hemoglobin or cancer.

So when people ask, “How is Toby?” it’s a hard question to answer.

We’re holding on to hope. And we’re glad you’re still checking in.

much love,
mooki + stephen


Anonymous said...

Dear Mooki,

Your writing just blows me away. Wow.

A privilege to read all of this, and to be able to offer some cyberspace equivalent of hand-holding these days leading up to Friday and after.

Sending much love and good wishes to all,

Nancy W.

Anonymous said...

Thank you so much for the update - Here's to hoping for hope - and for knowing that most of us - upon seeing a bald child - would hold our own children tighter and tell them that the boy they are looking at has more courage than David, more wisdom than Solomon and more folks caring about him than any one person on this earth - and that most of us hope that we too can parent with the wisdom and love that you parent Toby

another anonymous friend

Anonymous said...

Mooki and Stephen - we are so happy to get word via blog of Toby's recent activities, your news of the current status and what's coming up. We'll get word out to everyone here in North Carolina - you know you all are always in our thoughts and held close to our hearts.

Much love,


Anonymous said...

so happy to hear that there has been a little 'normalcy' in your lives lately....please post a few photos of your boy when you have the time, as we would love to see for ourselves his not-baldness!
sending healing thoughts and hope your way,
-Debra N.C.

Anonymous said...

Dear Mooki,how good to hear you had a 'normal' week and could do lots of nice things with Toby.
And how cool of you not to have answered the man in the lift!
I hope this week of waiting will pass for you as quietly as possible.

Anonymous said...

We're holding out hope with you. All that our hearts can muster. It has been an amazing gift to us that you have shared your story and then introduced us to the other amazing women who organized Cookies for Kids Cancer. We are ever thankful for your being.

Anonymous said...

I can't imagine being in your shoes in the elevator and not taking the self-righteous, scolding approach with the lice man. You have far more grace than I. The fact that you're reserving your anger and fighting energy for the real villain, the cancer, is admirable, inspiring, and bodes well. Along with everyone else, I'm thinking of Toby often and praying for good news.
- From a Brooklynite you've never met.

Anonymous said...

Thank you so much for the update....even if there is no clear answer to "how toby is doing"....he is on our minds daily, and it is wonderful to hear that between the pain, fear and exhaustion that you are managing to create wonderful moments of normalcy. We will most certainly be thinking about you on Friday and praying for good news.

LindaSueBuhl said...

Thank you for the update - great description of the conflict between "how rude is THAT" and "what about my son would elicit such a comment". Of course the answer is - nothing about Toby could possibly justify the remark. Everyone (unfortunately) says dumb things, but you blogging about it will help all of us remember to think before words come out of our mouth. We continue to pray several times a day for Toby - he is an exceptional young man. Bless you.

Anonymous said...

People can be very ignorant (out of fear). I think you have such a good attitude about the whole thing (I wouldn't have been so diplomatic with the elevator man). I'm so happy to hear that Toby is back in school and that you've enjoyed a bit of normalcy after so many months of living with neuroblastoma. I'm sure it is really boosting Toby's spirits to be back with his Beansprouts friends (and it must be good for you to get back to work and the routines of normal life). Hoping that all the tests are favorable and that you all have a happy and healthy 2008.

Anonymous said...

I admire your grace in the elevator. I surely would've given into the impulse and dished a well-deserved piece of my mind.

Better still, I would have quietly said, "That's incorrect" and given him this blog address.

I'm so happy to hear that Toby is back in school and having some much-deserved fun.

I am fervently praying that Friday's tests reveal good news.

Anonymous said...

Your grace and eloquence never ceases to amaze me. I'm so glad that you all got to do 'regular' things this week. I am wishing you all a lot more of everyday activities.

Anonymous said...

My prayers are with you. May 2008 be filled with blessings.
signed, brooklynite.

Regina said...

Dear Toby, Mooki, Stephen, Yoni and all:

As this winter solstice moves us--one day at a time--from the darkest, coldest point of the year toward brighter days to come, may there be continued blessings of hope and courage as you move--one day at a time--toward healing.

Love, Regina

Anonymous said...

it's been a week since your post and i am hoping for the best, but i am very worried about last friday's tests.

know that there are so many people thinking of you and your family and sending love.

JoAnn said...

Dear Mooki, Stephen and Yoni,
We hope the new year brings you more fun than fears, more strenght than scares, more good news than bad.
With love,
JoAnn and Stuart

Anonymous said...

Dear Mooki, Stephen, Yoni and Toby
Wishing you all a happy and healthier 2008.
I'll be in touch after the New Year and hope to see you all soon.
With love,
Ilene, Josh and Jeremy

LindaSueBuhl said...

Praying for your family and especially for Toby - he has had a lot to bear and done it with such grace. Thank you for sharing so much with your reading audience - some family, some friends and many of us who simply care because we know someone else who has this disease and found you through them. Trusting that this time no news is good news about Toby's testing. May 2008 be a year of healing, peace and time to be just yourselves.

Itababy said...

Happy new year Toby!

Anonymous said...

I wish Toby, Steve, Mooki and everyone else a Happy New Year. I check frequently to see what new news is posted and was glad to see that there was a new one. Everyone in my family is praying for you all and we hope Toby will improve. Love always
Sarah Jo, Chris, Ericka, Shawna, Mike and E'mon