Thursday, April 17, 2008

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

27 comments:

Anonymous said...

I've never met your family but this is the best news I have gotten about anything in a long time. I'll gladly take any opportunity to whoopyand holler along with you.

Go, Toby! You and your family are an inspiration.

Courtney said...

What great news! Have a wonderful Passover!

Best,
Courtney Ilarraza

Anonymous said...

I'm whooping!!!!
With happy tears. What wonderful news. I'd been nervously awaiting the results of the tests, and now -- YAHOO!!! Saturday will be a day of celebration for all the children who survive. It will also be a day for all those who love children with neuroblastoma to literally see they are not alone. You never have been. You all are amazing.
And I'll be there in spirit.
Much love-

Anonymous said...

An amazing bit of news - I think that everyone who reads this gives a collective whoop! And while I speak for one I am sure that many would agree that when we read your posts,even those that tell of the worst possible news and dissappointments we all come away with reverance and awe of your personal and family strength and of course always praying for news like this. As those of us who celebrate Passover this weekend we will rejoice for your family's freedom that this news brings. And don't be surprised if there is an enormous crowd for Team for Toby on May 10 --You and your family are truly an inspiration.

LindaSueBuhl said...

I am in tears - they are tears of joy and gratitude. What wonderful news! Thank you for sharing with us the journey - Toby is a wondeful little boy and Mooki, Stephen and Yoni are the kind of people we'd all like to know personally - bright, passionate and in love with one another as well as life. Hallelujah!

Vickie said...

Thank you for letting Toby's cyber fans share this most important news! You are a blessing!

VB
erinbuenger.blogspot.com

Anonymous said...

The tears - tears of joy - are streaming down my face! I'm not even making any attempt to wipe them away. What wonderful news on this Passover feast. Today the sun is shining, the azalea bushes are in full bloom, the baby chicadees are taking flight and Toby is cancer free. We are immensly thankful. I love you, Mom Pannone

Deqlan said...

Praise Our Lord - what fantastic news - Congrats Toby and congrats to you as his parents and family! Our Lord is Amazing - this journey is very rough to travel but with Our Lord as the leader, we can get through it ! We are so Blessed to have these amazing children! Enjoy the walk and celebrate! God Bless Samm mom to Deqlan www.deqlanhiggins.blogspot.com

Anonymous said...

Yesterday, I saw your boy - joyful and vibrant - in the playground with his class. I don't know you, but my heart swelled to see him.

I'm so glad to hear this news.

A Brooklyn Mama

Anonymous said...

Dear Mookie and Stephen, This is the news we've been waiting for- oh happy day! Our prayers have been answered. and so we thank God with the Psalmist:
Praise our God, all nations;
let your praise be heard.
He has kept us alive
and has not allowed us to fall.
You have put us to the test, God;
as silver is purified by the fire,
so you have tested us
You let our enemies trample us;
we went through fire and flood,
but now you have brought us to a
place of safety.
I praise God
because he did not reject my
prayer,
or keep back his constant love
for me. (Ps 66:8-10,12,20)

Hugs and kisses, Uncle John & Aunt Blanche

Anonymous said...

cheers, cheers, cheers!!

Melanie

Anonymous said...

Woo Hoo!

Tears are streaming down my face in happiness for you. Go Toby!
I will be there in spirit on May 10th.

Anonymous said...

Oh my, what great news. Even though there is still so much treatment ahead I can't imagine the joy and relief you all must be experiencing.
Have a very happy passover. I hope to see you on 5/10.
With love and hugs,
Ilene

Anonymous said...

I just wanted to join in with cheers of joy over this stupendous news! I hope this spring season and Passover holiday bring your family continued hope, rebirth, and freedom!

Anonymous said...

Such wonderful news! I don't have Mooki's gift for words to adequately express how I feel, but it is warm and light and joyful.

A Blessed Passover to all of you.

Anonymous said...

Wow. Amazing and beautiful news. I'll see you all this week sometime. And I'd love to help you celebrate in song! Love, Randy

Valerie said...

I've been so nervous the past few weeks since the scans, thinking that in this case, no news was bad news. You've been given hope and a much needed breather -- what a tremendous gift.

I recently read a quote by Camus that I found inspirational, and right now it makes me think of your family: "In the depth of winter I finally learned that there was in me an invincible summer."

If there is a celebration in Prospect Park, I will be there to raise a glass to Toby and your family's amazing, invincible summer.

Anonymous said...

I am so happy to see this posting! I was at Fairway a few weeks ago lamenting my life as I shopped. And, I glanced over and I saw your little family. At least, I think it was you. And I was overwhelmed to see you - just doing a normal family thing like shopping - and grateful for the reminder that even the mundane things in life are worth while.

As always, you are in my thoughts and prayers.

Fellow Brooklynite

Anonymous said...

I am just so overjoyed--I can't even allow myself to believe it--but I will believe it! You all are amazing. Thank you for sharing this incredible news--this joyful tremendous news. Let us all whoop together in Prospect Park. I feel like we can all breathe a little now.
All my best,
Emma

Anonymous said...

woo hoo!!!! wonderful wonderful news. i too saw toby recently...outside of beansprouts standing in line to get on the bus....just one of a bunch of kids on a beautiful sunny day, and i was just holding my breathe hoping there would be some much awaited good news. would love to celebrate with you all!

Anonymous said...

This is truly wonderful news for you guys. We are celebrating in spirit with you.
love always,
sarah jo

Will's Dad said...

NED...that is wonderful! It is a great thing to achieve in spite of the hyper state of vigilance that you still find yourself in (accompanied, of course, with treatment). It is a wonderful thing and should be celebrated. Thank you for your kind comment on Will's site.

Anonymous said...

My favorite three letters are NED!!!! Hugs and prayers. Carolyn Wing grandma to Laura stage IV neuroblastoma carepages.com page name LauraVDB

carolyn_wing@yahoo.com

Anonymous said...

Sending good thoughts and wishes out to all of you. A pleasure to read--

Nancy W.

Anonymous said...

Dear Mooki~
In thinking of all the amazing Moms I know~your name comes up in my "top ten" (right next to my Brooklyn Daughter-in-law:). Although I've never met you, I know that your courage, faith, and stamina are uncanny and that you are remarkably loving woman. I wish you a wonderful Mother's Day~~I'm sending you a big hug from New Jersey!

Anonymous said...

This is truly GREAT NEWS!!
May God continue to hold you all in the palm of his hand.

Blessings,
Manya

Anonymous said...

I am thinking of you and know you're relishing this new chapter for Toby. If it ever stops raining, I'd love to see some pics of the Pannone family catching up on a year's worth of fun.

May God continue to bless you all.