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?”
Pause.
(Here it comes. How do I respond?)
“I really like the drummer.”
(Ba-da-dum.)
“Me too, sweetie.”
(Whew)

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.

Love,
mooki

If it's Thursday, it must be surgery

Tomorrow morning at 7 am, Toby will be anesthesized and have the central line taken out of his chest, where it has lived for the last 14 months. We've gotten used to his tubies and Toby plans to ask Dr. Laquaglia if he can take them home in a little plastic bag.

More than a year ago as we sat in the nuclear medicine basement at NYU my brother tried to explain what a central line looked like. I remember his strange words, gently falling on uncomprehending ears: "it's like spaghetti noodles, coming out of his chest." With noodles gone, Toby will be able to shower and swim, he won't have to endure painful bandage changes, and we'll finally be able to retire the safety pins that have riddled all his shirts with crazy patterns of holes.

The line will be replaced by an under-the-skin mediport, and a few hours later Toby will receive chemo through a new delivery system.

Subject: MIBG & MRI - GREAT!

I cannot wait even a minute to share our good news. Here's the email from Dr. Kushner:

Revel in it.
We are so, so, so grateful. Thank you for believing in Toby.
love,
mooki+stephen

Prayers wanted

If you pray or meditate or hope, we could sure use some of your positive energy tomorrow. Starting at 8 am, Toby will undergo a full 2-day workup of neck, abdominal and pelvic CTs, a radioactive mibg injection, four bone marrow biopsies and aspirations, a brain MRI and an MiBG nuclear scan.

We are in high "scanxiety" mode this week, especially after Toby's complaints of pain 10 days ago. This disease is relentless, and we have learned to brace ourselves for the worst, while hoping for the best. Hope with us.

love,
mooki+stephen

Things I thought I knew

You can’t be in two places at the same time. Or, work and chemo don’t mix.
On a family roadtrip in 1974, we drove over the state line between Kansas and Nebraska. My father grudgingly pulled off the highway so that we could snap a quintessentially American state-straddling photo. My mother, a child of circumscribed geography, was laughing. She told me that I really could stand in two states at once. After much prompting, I took a tentative step over the border and smiled for the camera. Click. Truth is, I was uneasy in that soft, knee-high prairie. If my left foot was in Nebraska and my right foot was in Kansas, where was my stomach, my head, my heart? What space did they fill? And could that invisible, improbable line somehow cut me in half? I thought about it for a long time, through Missouri and Iowa, until the familiar blue roof of IHOP came into view, and I forgot the funny feeling in a stack of silver dollar pancakes.

I’ve wondered about that photo lately, as we negotiate the geography of one foot in “normal,” the other in “sick.” Toby’s scans were clean in April. He is in school and loving every second. Stephen and I spent some time with Yoni, planted a garden, bought a couch, and even took the boys to Israel for 6 days. Life is good, really good. We are SO thankful. And I’ve been back at work since December. But while all this was going on, Toby endured 4 more cycles of chemotherapy, breakthrough shingles, breathing treatments, thrice-daily disgusting medicines and constant blood draws. Toby’s counts are good for a cancer kid, but his hemoglobin (the part of red blood cells that carries oxygen) is consistently lower than normal. We are always on the lookout for bruises or bleeding that might indicate low platelets. We keep the barf basins in strategically placed locations throughout the house. And every bump, mole and blink is paid attention to and duly noted. Toby has been complaining recently of neck pain, which is most worrisome and will be addressed next week in an early round of scans and bone marrow biopsies. He still spends 10-12 days a month in the hospital. In our world, it’s Beansprouts in the morning and Memorial Sloan-Kettering Cancer Center in the afternoon. And I go to work every day, while Stephen holds our little boy’s hand as the irinotecan drips into his veins.

Heaven does not exist.
I could never really picture it until I read The Lovely Bones by Alice Sebold. It made me think about the different ways my own parents cope with their grief.

My mother has been going to her father’s grave for over 20 years. She spends time cleaning and refreshing the plantings, but she mainly goes to talk. She tells Manek about her days, asks him questions, gives him news of his grandchildren. And while the loss doesn’t abate, she carries on the relationship. Manek continues to live through her actions. My father deals with things differently. He has gone to synagogue on the anniversary of his mother Giza’s death, but has told me that he feels a heavy emptiness. He does not speak to her, yet I know that he experiences her loss acutely and always. I miss my grandparents something fierce. But I don’t think of them in heaven. They are here with me.

But this spring we lost so many children to neuroblastoma: Justin, Austin, Cooper, Courtney, Emily, Spencer. Beautiful, innocent, magical children. There are simply no words to relay the depth of sadness and pain we feel for their families. And one night, after kicking the wall and crying in the shower and cursing God, I re-read The Lovely Bones, and heaven started to seem more possible.

Please honor their memories by visiting their sites.

I caused Toby’s cancer.
Since the day of diagnosis, I have harbored a not-very-secret, paralyzing, almost-too-painful-to-think-about fear.,. that something I did or ate or breathed while pregnant gave Toby cancer. When I couldn’t make that logically work, I questioned our loft in Brooklyn. For 15 months we lived in an area of light industry and after Toby got sick we had the apartment tested for everything under the sun. As you know, the findings were not good: elevated levels of metals and mold. We moved quickly, first to the Ronald McDonald House, then to two different furnished sublets and finally into our wonderful little house on Temple Court.

One question plagued me wherever we moved. Did we ignorantly subject our child to a substance that could have caused this horrible, horrible disease? If you only knew how much I think about this; it’s pretty much a constant awful voice inside.

But the doctors have been adamant that Toby’s cancer is not due to environmental stressors. They have always maintained that changes to Toby’s cells could have happened very early on in development and might have already been present at birth. And others have reminded me that childhood cancer is usually not due to environmental issues because the children are so young when diagnosed. Well, a few weeks ago researchers made a major discovery. They have established that neuroblastoma is a genetic disease.

Since I’m Jewish I’ll carry the guilt no matter what, but this news is a comfort nonetheless.

95 degrees and sunny automatically means a beach day.
I’m a big-time sun worshipper. Although I don’t do the iodine/butter combo anymore, I can think of nothing better on a summer day than a trip to the beach. But Toby still has his tubies and we’ve made adjustments. On Fridays he goes to the Y with his class, spending the hour dangling his feet in the water and chatting up his teachers. On weekends we steer clear of the sprinklers in the park. And I’ve accepted that this year pale skin is the new black (hear that, Mirm?). But all that is about to change. On June 26, Toby will have his tubies removed and replaced with an under-the-skin mediport. The pool, the beach and a REAL bath will be possible for the first time in 14 months.

There’s a beginning, middle and end.
I can’t say it better than Vickie.!

I'm glad Erin has great days. It's a whole lot easier than at diagnosis when we would check her into the hospital and chemo drips would run twenty-four hours a day. We lived in the clean zone, protecting her from infections and other bugs that could lay her low. We signed informed consent forms virtually guaranteeing hearing loss, sterility, and organ failure. Everything we encountered was new and frightening.

But in some ways our situation now is much, much harder. When we started this game in July 2002 Erin's doctor handed us a road map that outlined the steps we would take to get Erin cancer free. We knew the process and approximately how long it would take. Because there was an endpoint, I could treat it like a project. I teach project management. Projects start. They end. They attempt to accomplish specific objectives. You manage them to completion. You may encounter set backs, but you re-group and keeping working towards the goal. That's what we did, and we did it well.

Now, here in relapseland, particularly in tumor progression relapseland, the bliss is all temporally finite. We start chemo again tomorrow. We hope to continue starting chemo every three weeks for a long time. The only obvious end points are set by more disease progression, unacceptable chemo toxicity, or a switch to some other treatment option (which we hope would be effective, but yield more good days).

We hope that the bad days aren't too bad and that the good ones are blissful. We hope to keep fooling ourselves that we have the energy and stamina and good luck to make it. That scientists can move fast enough to build the silver bullet that stops neuroblastoma in its tracks. That Erin's body and spirit stays strong. That Erin's tumor stays stupid and easily managed. That there enough good days to make the bad days tolerable.

We now live with more urgency and passion, and unexpectedly, much more calmness and certainty. I read it on a Nike poster in the gym: There Is No Finish Line.

I didn't like my prom.
but then i came here

And I obviously don't know much about anything.

Walking

Created with Admarket's flickrSLiDR.

Thank you so much to everyone who walked with Toby in support of all the little children battling this horrible disease. Kids Walk raised more than $125,000 for NB research. Over 400 people participated in Central Park, with many more sending in donations online. It was such a day of hope! A huge thank you to Shirley Staples, who oversees the walk with legions of NYC high-school students. And a personal shout-out of love and admiration to Reva Grossberg, who created Toby's Team. It was an honor to walk with you.

365.

Today is one year.

April 17, 2007: the day our lives changed forever. And one year later, after 2 surgeries, 10 week-long rounds of chemotherapy, more than 50 cycles of radiation to abdomen, spine, upper arm and neck, after countless hospitalizations, 15 days of 3f8 immunotherapy, a month of shingles, and hundreds of injections, we have some good news. We know that you don’t usually visit this blog to whoop it up, but today is different.

Today, Toby is clean.

The CT and MiBG scans showed no signs of neuroblastoma. The bone marrow biopsies and aspirates showed no cancer cells. And the urine results are normal.

Toby has no evidence of disease.

So what’s the possibility of having a giant love-fest in Prospect Park, where we all whirl around and eat lots of food and wine, hug each other and sing praises to God, friends, doctors, nurses? Where Randy sings and the sun shines and children laugh? Where we feel the power of love and hope and community? We are SO there.

Toby most likely has cancer cells still lurking in his body. Since neuroblastoma is aggressive, with an extremely high relapse rate, doctors don’t speak of remission. So treatment will continue unchanged: another round of chemo at the beginning of May, with an attempt to harvest more stem cells on April 28. And we wait for Toby’s hama level to come down.

But today we celebrate, with all of you.

*******

An email from yoram, the cancer doc:

-----Original Message-----
From: Yoram
Sent: Thu 4/17/2008 12:04 PM
To: Saltzman, Mooki
Subject: anniversary

mookus,

you and your gang have lived through a horrendous year. there have been more "downs" than "ups" and both your psyche and physical stamina have been continuously challenged (again and again). somehow, the four of you have persevered and arguably are stronger for it - this is not an empty statement, i have seen the remarkable change in all of you.

if my math is correct, one year ago today, i received your frantic call from the radiology suite at nyu with the worst possible news. i clearly remember how your voice quivered despite your best efforts to keep it together - you knew something was amiss. my own realization of the gravity of the situation was confirmed when you passed the phone to the radiologist who described the results of toby's abdominal/pelvic CT to me. even as she was talking, i feared the worst and my fears were realized when she answered my two questions affirmatively that the mass appeared as though it originated from the adrenal gland and "crossed the midline" and that it contained calcifications. until this point i was hoping that the mass was "benign" or at the worst a wilms tumor, unfortunately, it was neither.

over the past year you all have been to hell and back many times.

i've seen how these "trips" affect (other) kids and their parents. some of them become so hardened and withdrawn that they can no longer function. the dreaded disease consumes them and their entire being becomes a manifestation and reflection of it - they find it exceedingly difficult to live with their disease. i can not say the same for the four of you. while it's true that each trip tests your resolve, at the same time you become more determined and earnest to live a normal life, "tubies," chemotherapy, and endless restrictions be damned. you and stephen are advocates-extraordinaire for toby, insisting that he go to school, have play dates, and be as much a kid as he deserves to be. i'm continually amazed by this and i'm not sure that you and stephen appreciate how truly important and remarkable this is.

anniversaries are meant to be positive; reminders to commemorate and to celebrate good. today is one anniversary i would prefer not to remember.

love,

yoram


God, I love my brother.

**********

On Saturday, May 10, Stephen, Yoni, Toby and I will be walking in Central Park to raise money for neuroblastoma research.

Kids Walk for Kids with Cancer was started 7 years ago by Shirley Staples’s daughter Sophie. Since then, it has raised almost $525,000. The walk is organized by NYC middle- and high-school students and it has blossomed into quite a wonderful event. It starts at 2 p.m. in Central Park, across from Tavern on the Green at W. 67th and CPW. First is a brief program that includes doctors who treated both Shirley’s son Simon and Toby. Next is the 4.5 mile walk. Everyone is welcome, from babies to grandparents, and even pets. We will be there to walk with Toby, in support of all the brave children battling this terrible disease. The survival rate for neuroblastoma is a dismal 30%, so more funding for research is desperately needed. Funds raised will help MSKCC researchers improve the odds for our children. We hope you can join us. Please email our dear friend Reva at walkfortoby@gmail.com if you would like to participate. Thank you so much and we hope to see you there.

Love,
mooki + stephen