Friday, April 20, 2007

Hello All

For those of you don't recognize the e-mail address, I am Yoram Unguru,
Mooki's brother. I am writing to let you know about Toby, Mooki and
Stephen's wonderful son and Yoni's brother. The news I am about to share
with you is tragic and troubling for all of us who care about Toby and his

For the past two months or so, Toby has been complaining of neck pain. This
has affected the way he's been holding his head and recently he's started to
walk a little funny. Mooki, the perceptive mom that she is, knew something
was wrong immediately. This past week, the cause of Toby's symptoms was
revealed and while a final diagnosis has yet to be determined, the news is
not good.

Toby has a very large tumor in his right adrenal gland (the organ which sits
atop the kidney and is responsible among other things for secreting hormones
like epinephrine (adrenaline). Moreover, the tumor has affected the
surrounding area and has spread to several bony vertebrae in the spinal
column. As I mentioned, the work-up is still in progress and so far Toby's
been handling things like a real champ. He's very tired and not very
hungry, and still experiencing some pain, but is still amazingly
inquisitive, articulate, and playful when engaged. Tomorrow, Toby has a
busy day planned for him - a biopsy of the primary tumor, bone marrow
aspirates and biopsies will be done to make sure his marrow isn't involved,
and he will have a durable, central venous catheter (i.v.) placed so that he
won't have to be constantly "stuck" for blood and which will enable him to
get medicines.

As it stands now, things are pointing towards a diagnosis of neuroblastoma,
a very nasty tumor. Toby will finish the work-up at NYU where he is
currently admitted and then transfer to Sloan-Kettering at some point next
week where he will be treated. Assuming that the tumor is a neuroblastoma,
the treatment is intense and lengthy and consists of chemotherapy, surgery,
radiation, and immunotherapy.

Obviously, Mooki, Stephen, and Yoni (not to mention Toby) are shocked by the
horrible news and are doing their best to cope with this untenable
situation. In addition to informing each of you about Toby, I have a
secondary plea as well. Toby, Mooki, Stephen, and Yoni's lives will never
be the same from this day forward. Simple tasks that we take for granted
are overwhelming and even burdensome for many families coping with cancer,
especially in the initial days and weeks. Simple things like going shopping
seem impossible.

I am asking each one of you to look within yourselves and imagine that it
was your child, your nephew or your brother in Toby's place. Toby, Mooki,
Stephen, and Yoni NEED OUR HELP. I have a few suggestions and I am sure
there are many things I have not thought of so feel free to come up with
these on your own and to share them with the rest of us. If each one of us
could take it upon him/herself to assume one of the following
responsibilities it would be of immense help. Things I have come up with
are as follows:

1. Food shopping
2. Preparing meals
3. Taking the garbage out to the dumpster on Tuesday evenings
4. Making lunches for Yoni and on the rare instance that both Stephen and
Mooki need to be with Toby overnight at the hospital for someone to sleep
over with him.
5. Laundry
6. Coordinator of above tasks (I live in Maryland and am happy to coordinate
electronically, but having someone in NYC to do so in person is probably

I apologize for the long e-mail, but hope you can appreciate the
circumstances. I will do my best to keep people updated on Toby and his
family periodically. Please let me know what you are willing to take on so
that we can get the ball rolling.


Yoram Unguru


1 – 200 of 230   Newer›   Newest»
Emma Lewis said...

I am thinking about all of you and sending all the good thoughts I can. I would love to do anything to help! My immediate inclination is always FOOD (and thank you Heather for setting up the food calendar). I look forward to cooking a meal in early June, and in the meantime is there anything special that Toby likes? Also, I've been making challah on Fridays--may I bring you a loaf?
Best, Emma Lewis (mom to Beatrix and Clementine)(Mooki and I corresponded once a while ago, which I remember because as an Italophile I love her e-mail name!)

Carie McClendon said...

What a beautiful precious little boy you have! My thoughts and prayers are with you right now. Know that your friends in South Carolina care. We will pray for strength to help Toby handle what his little body is going through and for his healing! Love, Carie McClendon- Stephen's former teacher

Danyelle said...

I like like 20 blocks from the hospital, please please feel free to let me know if you need anything (spare room, food, clean shower). Rox told me you were leaving the hospital next week, otherwise I would offer to visit and bring some treats. Thinking and praying for you and your family. Much love,

Tracy said...

All my younger life, the close age people I admired the most where my slightly older cousins and that would be Stevie and sibs. Recently I had the awesome experience of meeting Mooki, Yoni, and Toby and I felt, "Yes, all is right in the world."
All will be right again. My faith is in the Lord, family, and what is right.


Jane D. said...

You three courageous souls. I know in my heart that you will come through this and be well and whole and happy again. The light at the end of the tunnel may feel distant and dim but you know it's there waiting for you. I know you well enough to know what you are made of. You are all strong and brave, and resilient. I have seen those qualities in action. You're an inspiration to me. The pictures on the blogsite just take my breath away. Toby is so perfectly beautiful. I'm thinking about all of you all the time, sending my prayers and wishes for a steady course of healing.

Ann, Jennifer, Kim, Naomi and all your buds in Seattle are wishing we could do something, anything, for you guys that would help you in any way. Say the word. Please.

WIth love,

Arlene said...

Mooki, my thoughts and prayers are with you and your family. We miss you around here. You are a courageous lady and a devoted mom and I'm sorry we didn't have long to work with eachother. I know you will all survive this.

Yasmin said...

Hi Stephen - this is yasmin from the tanenbaum center. jaimee shared this blog with me - i hope you don't mind. i can't imagine what you all are going through. but it sounds like there are a lot of people that really care about your family, so i hope that together you'll push through strong. plse let me know if there's anything i can do to help - in whatever way. even stopping by sloan to hang out with toby (i like the little ones). your family is beautiful and i wish you all the best of luck. i can't imagine going through something more difficult. yasmin

Peter said...

Hi guys, it's Allie-O's Dad Pete (and also Gillian and Allie in spirit) here to send you hugs and support. The news has come as such a shock, and I am so amazed by your courage and strength -- and especially by Toby's beautiful spirit. I'm signing us up for some cooking and driving... Is Italian food good for you guys? Allie sends her love to Toby and said to me when I told her Toby was in the hospital "I hope he's better soon so I can see him in the park."

All our best most hopeful thoughts are with you all.

Justine Saylors said...

Hello Toby and Family!
I was directed here because I get "google" alerts for Neuroblastoma, that has to do with anything in relation to NB, including personal blogs.. I received a blog today with Toby's story. The reason I get these alertts is that my little man also fought this monster.
Just wanted you to know that there is one more person out there praying for little Toby and your entire family, NB is torturous enough but you have some extremely difficult challenges as well with your living situation. I will be praying it all comes together for you family. Wish I was closer to help, but Im all the way on the other side of the US in Oregon, but as I mentioned, I will be keeping you all in my thoughts, prayers and my heart.

Much love,
Mom to Angel Lance

FriendofToby said...

I am thinking about you Mooki, as a mother, and how much pain you must be in to see your precious little boy go through this terrible ordeal. It breaks my heart and I pray for Toby, you and Steven that God lifts you all up, into his arms and carries you through this.

Posted for:
Kathleen (Bernie's friend)

Dessy said...

Toby, I miss you lots! After school is truely not the same without you! Mookie and Stephen God Bless your strength and Toby's courage; he is a strong little boy. I hope he gets well soon and feels back his your fun loving self again <3 eat some "turkey lurkey" which I know he loves. If there is anything I can do please let me know...I would love to help
Best Wishes,
Elysia (Beansprouts)

Meghana said...

I accidentally ran across this blog while looking up stuff in Park Slope (i'll be moving there soon) and was so struck by this little boy's courage.
I don't have a car, and I'm basically a complete stranger to all of you (I'm a 31 year old female college professor), but is there any way that I can help? I'll make a donation, but if I can help somehow, please email me at megsnayak at gmail.

Lisa said...

Hi Mooki. This is Ben's mom, Lisa -- Ben from the class Toby was in at Beansprouts last year. I was so upset to learn about Toby and admire the courage all of you have shown through this trying time. I've been keeping my eyes open for apartments and sublets, and today found a friend who has an apartment in Carroll Gardens (right near BNS) available for the next few weeks. But I have since learned that you have something temporary. If it falls through, please let me know and I'll contact my friend. I'll be preparing a meal for you guys soon. Please let me know if you need anything while you're in your Carroll Gardens sublet. I find myself over there quite a bit as Ben's older sister Leah is at BNS. Our thoughts and prayers are with you.

SimplyTaty said...
This comment has been removed by the author.
SimplyTaty said...

Hi Guys
I recently heard the news and I found this blog because of the article on a Park Slope paper.

You'll be in my thoughts. Please let me know if there is anything I can do to help.

SimplyTaty said...

Hi Mookie
I just read on one of the oldest posts something about donating blood. I am an universal donor. I don't know if there is a need right now, but please let me know if that is the case.

Renanit said...

Mooki and family,

I have been following your story and crying every time I read a post even though I never had the chance to meet Toby and we don't know each other all that well. I have been so struck by the poise and strength you and your family have shown through this terrible ordeal and I wish there was something I could do to help. We will be making some meals and doing some laundry for you over the summer when fewer people are around; if there is anything else to be done in the meantime that I can help with please do let me know. We're praying for a refuah shlemah.

- Renanit

linda s said...

Dear Mooki and Stephen,

I'm very sorry to hear about Toby's diagnosis of neuroblastoma. We do not know each other, but we also live in Park Slope. When my son was 3, he was diagnosed w/ a high-risk leukemia and was also treated at MSKCC for over 2 years. He is off treatment now 7 months, doing great and in kindergarten at Berkeley Carroll. Please feel free to contact us for any reason -none too small. We have become experts at getting a sick, yet determined boy to swallow meds, allow dressing changes, cooperate for blood draws, and above all - getting him to eat!

Our best to you-
Linda and family

Kylesmom said...

Dear Mooki, Stephen, yoni and toby -

i had no idea what an intense time you all are going through - kyle just told me that maybe i should call you, mooki - but he didn't say what it was about - so forgive me for not getting in touch sooner -
i would love to help out in any way i can - also you can count on kyle -

i of course will look at the calendar - but if there is anything specific that you might need us to do - please call me at 917-225-8952 -
My thoughts are with you all -

Chris McCloskey & kyle LeClaire

supremeuno said...

I am so proud of my little sister Aileen for being such a big part of Toby's life. I have never met Toby but from all the great things my sister has told me I know he is a wonderful boy. I pray that Toby overcomes this ordeal so he can enjoy life without this pain. This is my first time on this blog and it put me and my wife to tears. Being a parent of 3 girls myself and expecting one on the way, I can't imagine the pain that the Pannone family is going through.

Toby, I'm on the phone with Aileen right now and she says HELLO!!! When you get out of the hospital and get all better we will all ride the G train all over the place.

So I say to the Pannone family, you now have 100% support from the entire Sanchez family (Aileen, Raul & Steven). Please don't hesitate to contact any one of us if there is anything that you need.

God Bless you all!!!!

stephen pannone said...

we wanted to let all of you know how much these comments mean to us. both stephen and i check this page every day. thank you for reaching out and letting us know that we are in your thoughts and prayers. it is very, very important to us.
love, mooki and stephen

Alison said...

Pannone family: we are still reeling from the shock of hearing about Toby but please know our thoughts and hearts are with you. We are your old neighbors from 13th street (2 doors up the block with the three kids) and Soren is a fellow Beansprouter. You are all so incredibly brave and strong and surrounded by so much love and support from your family and friends that sheer strength of will and outstanding medical care will doubtless get you through this. Tony is precious and has an incredible spirit; will do our best to help you out but please know we are all thinking of you. Alison, William, Evan, Tess & Soren

Addie Alexander said...

I'll donate platelets for your little boy on is my pleasure.. Addie Alexander

Michele said...

Hey Mooki...Won’t keep you, but wanted to let you know I contacted Puppetworks to seek out “Toby” stimulation, and got a call from the Chief Puppeteer, Mike Leach, who is totally interested in doing something for Toby, either by your home or by them (like a backstage tour)

Mike wants to make sure that what he proposes is appropriate. I can arrange this for you...or, if you have a moment, you can speak to Mike. Let me know what works.

Anyway, here is Mike’s contact info:


I will also post on the blog...

I think I am cooking for you next week...what do you guys like? (I make a mean lentil soup!)

Aidan sent some books to Toby.



Roz Musacchia said...

Dear Mookie, Stephen and Toby,

This is Gila and Yoram’s Aunt Roz. My husband Vince and I saw you all on New Year’s Day 2005 in Brooklyn. We were in Brooklyn again (visiting from L.A.) for Mother’s Day week and while we were there a neighborhood newspaper was delivered with sweet little Toby’s story on the cover. We’ve all been praying for him every day since we learned about Toby, but to see him in the newspaper was both endearing and a pain felt deeply in my heart. I cannot imagine what you all are experiencing. When I read in that local newspaper about Toby’s blog I started to read it when I got back to L.A. I’m glad your temporary Kane Street address has been posted - I’m sending you something towards giving Toby a bright spot in one of his days - please use it to put a smile on his adorable face and a twinkle in his eye.

Vince is also trying to get some sort of program organized with the people he works with at Disney, so I’m sure you’ll be hearing from him soon.

Take care of yourselves and know that our prayers and love are with you all.
Love, Roz

Pookie said...

Not a day goes by that I don't think about Toby. My prayers and thoughts go out to the family.

I was saddened to hear about Toby and I can say that I can imagine how you feel along with KNOWING how you feel. I’ve been down that road when my oldest was 6 months old. I know how devastating it was to hear the positive results and the steps to help treat the condition. I appreciate that there are treatments but I pray that there was a cure. As a mom, we wish that we can take it away and bare the condition ourselves to see our child happy and free.

God is with you. He is with all of us. I try to always convince and believed that I was given a special child because I was a special person, a mom whom God knew that can be strong enough to handle and care for the child that he blessed me with . Like they say “God doesn’t give us anything he feels that we can’t handle”.

When all subsides, it is encouraging to speak to other parents who are in similar situations. Parents who can relate, because you are going to grow angry towards those who try to give you kind, comfort and wise words, but you will be upset because they are not in your shoes to understand.

I still try to understand why my son is not able to live a normal childhood life.

Mooki and Family - We can and will never forget, we can only Accept.

Esther and Fred Brauer said...

Dear Mooki and family,
I do not know how to describe my feelings when I received an e-mail from your Mom
with the news about Toby.The more I read the blog and looked at the photos of your beautiful boys the more intense the feelings became.I have not been able to get Toby out of my mind. I find myself in tears many times during the day. I also feel angry. In my Master plan,children would never be sick.
As a clinical social worker,specializing in work with pre-schoolers and their families,I have dealt with some very ill youngsters.While I needed to remain professional,I never could stop feeling. I never could "leave my feelings at the office 'as some of my colleagues suggested I should.
Mooki, Toby looks alot like you did when I first met you upon your family's arrival in Madison. You were about a year younger than our youngest son ,Michael and a very curious little girl. You and he were playing while your Mom and I chatted in another room. Michael came running in to inform me that I had better remove all fragile things because youwere too liitle to understand.
Our familyfriendships go back a long time in spite of the physical distances that separate us. I have not seen you since childhood, but reading about all the help and support you are getting tells me that you must have grown to be a warm,givingperson and thekind of Mom that made Toby what he is and who will be his best medicine.
I wish we were closer and could be of help,beyond a donation of money.You and the rest of the family will remain in our thoughts and we look forward to seeing you and meeting Toby in person at some point.Our very best wishes for a good outcome.
Esther and Fred Brauer

Addie Alexander said...

I'll donate platelets on June 8th and think of you often. Thank-you for your heart-felt up-dates. A PS neighbor.

Arlene said...

hi mooki, i really wanted to come to the concert tonight to wish you well, but i have a parent teacher conference i couldn't change. unfortunatly, living in new jersey doesn't make doing both possible. funny...i grew up in it seems so far away. i have alot of clothes that louis has outgrown. i was wondering if you would like them. i know you are too busy to respond. i will ask around and see what i can do.

hope the concert is a success. i think about you and toby all the time. right now with tears in my eyes.

i am know expert in this area, but it sounds like you are providing toby with a loving, nurturing and a s normal an enviornment, as you could, under the circumstances.

be well, arlene

Amy Beth said...

Mooki and Stephen--
I have missed Toby tremendously at BAX. We are trying to coordinate some "creative" time spending ideas for he and I (with Michele's help) when Toby feels up for it. We will be in touch and you are close to my heart right now. AB

Amy Beth said...

Dear Mooki and Stephen--
I have just recently caught up with Toby's condition and what has transpired since I saw you at BAX in March. I would love to see him and also to try and provide some arts stimulation for him if he is up for it. mainly, I would love to visit if its OK? You are all close to my heart right now! Amy Beth,

gisele said...

I just found out yesterday. You were always my role model in so many ways, and now you are more than ever. Toby is such a beautiful child, and you are the best mother. I am thinking about you and your family, and wishing you good, healthy and happy thoughts. There is a social worker at Sloan Kettering named Maureen--i forget her last name but she is amazing and was very kind to my family when my dad was there.
Much love,

Karadima said...

My name is Lia I am Stephanie Caloir's sister. I am a nurse and I read your blog. Try to get in touch with the Child Life Coordinator every Pediatric unti has at least one. They can bring Toby all kinds of activities that are not out in the playroom if he is not up to playing in the playroom or needs to be isolated. They have some wonderful programs. All you have to do is ask. Sometimes the staff is busy doing other things and they just need to be reminded of your needs. Please feel free to contact me if you have any other questions. Good luck and godspeed to a quick and complete recovery to Toby. Lia Karadimas

Dana Gerendasi said...

You are one of the most inspirational families I have ever met. My son Leo and Toby were in camp together last year and Leo always spoke of him. I remember Toby's party like yesterday and he truly is special. From your blog, I see how unbelievable special he really is. My thoughts are always with you. I look forward to cooking for your family (have no worries, there will be no lasagna involved). May we only continue to hear good news.......sending only love and good vibes in your direction.
Dana (Leo's mom)

Sheri Pannone said...

Dear Stephen, Mooki, Yoni & Toby:

I never know how to start a note. Just know that you are in our hearts and thoughts every day!!

Much love - Sheri, Greg, Lindsay, Matt & Stephanie OXOX

Anonymous said...

Dear Michal,
Writing to you is your father's friend from Germany, at present on long vacations in Sweden. We met in Berlin in 1991 when your father and I were at the Wissenschaftskolleg. He has told me about you, your family and, of course, about Toby's terrible illness. Ever since April 17 my thoughts have been with you and your sweet little boy. Next week my thoughts will totally concentrate on him and I wish him a successful operation. What you are going through is beyond my power of imagination. The strength you have shown so far will carry you all the way through to the end of this terrible road which can only be your son's complete health. I cannot send you blood from here and they would probably not take the blood of the old woman I already am now (65), but I send you my thoughts and strong wishes for a successful surgery on June 27.
Please, give my warmest regards also to Toby's father Stepphen and brother Yoni,

Birgitta Nedelmann
S-62368 Katthammarsvik
0046- (0)70-6021396

Robert said...

We have never met but being a parent of two young children and living in this brooklyn community, I am certainly affected by knowing of your situation. My prayers and love go out to Toby for his recovery.

Sincerely, Rob Garcia

Anonymous said...

My thoughts and prayers are with you today, tomorrow, Weds. and after. I am praying for you, for Toby -- for your whole family to find and keep the strength you need to go through these days. Toby is a beautiful child. May you all have days of peace and happiness ahead of you.


Anonymous said...

Dear Mooki, we met many years ago in Tantura.
I admire your strength and courage in coping, and I wish you all the very best for Wednesday.
My family join me in sending love and good vibes.

Laura said...

We will be thinking of your precious son during his surgery and hoping that it is successful and his recovery is speedy.

Ona said...

God bless your little one, what a beauty he is! I will be sending all my thoughts of healing and love towards his full recovery.
Be strong for each other.

Gilly said...

I will be praying that your little boy is soon healthy and strong. I also pray that you will find some comfort and peace. It is so true that we least feel God with us when we most need him. I'm glad that you're still talking back, and I hope that he will somehow answer. Most important, I hope Toby has an easy time with the surgery, and that it's 100% successful!

Heather said...

We are thinking of you and sending Toby our love and hope and strength. Morgan, Heather and David

Anonymous said...

I think about you and your entire family all the time! Toby is always on my mind and I will be praying for a successful surgery. Your family is remarkable and I know Toby will pull through this horrible ordeal.
My thoughts and prayers are with you,
Beth Jenis

Anonymous said...

My thoughts are with you all during this time. Sending many, many waves of healing Toby's way.

Anonymous said...

Dear Toby, Mooki, and Stephen,

We are thinking of you and sending you waves of positive, healing energy and love to help you through these days. Your strength and courage are humbling; our world is better for having you in it. -- a PH neighbor

Karen said...

Dearest Toby,

You won't know this yet, not until you are much older. But just being who you are, fighting the terrible illness you have, being a good little boy, even when you feel sick and bored in the hospital, makes you one of the most courageous people I know.

I have a little boy around your age. My son Francisco is actually 22 months old. When he was first born, he had to spend 5 weeks in the hospital too because he arrived in this world much earlier than he was expected. He weighed only 3 lbs. His head was much larger than his truck. As tiny as he was and as little as we knew about him then, we knew him to be a tough little guy. Although I don't know you nor your parents personally, I know from your smile that you are one too. My son taught me so much during that time. You are teaching all of us now, even people you don't know, about strength in every-day survival, human decency, and human resiliency.

Use that strength you have as you go into surgery tomorrow.

You are such a lucky boy too because you have wonderful parents and an extended family.

I will be thinking of you and I will be telling Francisco how brave you are. I bet Francisco would love to meet you when you get a little better.

Best wishes,
Karen Yau

Katie Keating said...

I know how hard it is to see a parent go through heavy-duty cancer, but I can not imagine what it must be like to have a child experience it. I am so sorry you are having to deal with this. One thing I believe however, is that a community of people (which can not be measured geographically) rallying around a person, praying, thinking healing thoughts and sending what we call "general good vibes" in my mom's case, matters. It helps. I hope, really hope, the best for your family. Because it is the whole family going through all of this.

Anonymous said...

My daughter Nora is at Beansprouts and I have been following Toby's story. I will be thinking about you all tomorrow as Toby is in surgery and sending healing thoughts his way.
-Gillian Hans

Cheryl Barkin said...

Hi Mooki -- We have never met but my family and I live in the neighborhood and are so affected by your story. We have such a love for little Toby and hope that all goes well with his surgery tomorrow. We will be thinking of you and sending you positive thoughts this week and always. -- The Barkins

Anonymous said...

Mooki, You already are living your life as Kushner suggests. What amazes me is that in the midst of this pre-surgery time, you are able to organize your thoughts about god and suffering in a way that moves me to tears because it so echos what I feel and think. But, I've never been able to state it so clearly. I hope we meet someday soon. I am a Chapel Hill neigbor of Anna and Greg's. It goes without saying that you'll all be in my thoughts on Wednesday, and in the weeks to come. Meryl

Schulton said...

Mooki and family,
Our prayers and positive energy are all headed your way. I can't imagine any words would help right now, but know that there is a family sending you love and strength. Tomorrow's surgery will end with success!
The Schulton family

Anonymous said...

Mooki, I read Toby's blog often and I am humbled by your honesty, courage and strength. It makes me want to be a better person. Thank you.
What a beautiful inscription from your father.
My prayers are with all of you...especially tomorrow.

Go, Toby, Go!

Anonymous said...

Dear Mooki, Steve, and Yoni, Little Toby, and all of you are never far from our thoughts and prayers. Toby is not only your child and brother; he is also the child of the extended family that is nurturing him physically with their platelets and blood cursing in his veins, and spiritually by their constant prayer. I hesitate to say this, for fear of wishful thinking, but last night,in our silent, contemplative prayer group, I seemed to have a reassurance that Toby would be allright. God will put his angel in charge of him, as he put Raphael in charge of Tobias, while telling his father Tobit, "Take courage! God has healing in store for you, so take courage!" Aunt Blanche and Uncle John

Anonymous said...

Dear Mookie and family,

Toby and my son Cameron were in summer school at Beansprouts last year. We came to Toby's lovely birthday party in the park -- and spoke briefly.

As brief as our encounter was, I haven't been able to stop thinking about you and your family and beautiful Toby and what you all must be going through.

I will be thinking about you tomorrow and will send love and positive thoughts your way. You have the entire neighborhood thinking about you -- even if you can't see us.

Haleh, Cameron, and Russell

Indu said...

Your son's strength radiates through those beautiful eyes. My family's thoughts and prayers are with you and we will be sending all of you love and light tomorrow during the surgery. I have faith that Toby will have a successful surgery...Love, Indu, Anand, Rahul & Ajay (your fellow Park Slope parents and kids)

Mary said...

I truly cannot even imagine what this moment in time must be like for all of you. I have a four year old son Teo who goes to Beansprouts too. While I was reading the blog on Toby's surgery a thought flashed through my mind which may help- I don't know why these kinds of things happen- the randomness, the unfairness of all of it but maybe if you can hold an image or a picture in your mind, one that reminds you of the wonder of Toby, and focus on that- hold the miracle of him close to your heart and believe in that- and all the wonderful things that come with our children- my hope and prayer will be that it helps sustain you through the darkness which is now- I will pray to a special saint in our faith for your son and for all of you- I hope this darkness passes soon- I will pray for your surgeon as well -

Lisa Shuchman said...


Our thoughts are with you and your family. Ben (Shifrel) remembers Toby well from their days in Maya's class and we sincerely hope that they will be playing together again one day -- perhaps at BNS.
We question why this had to happen and are amazed that you all find the strength to cope as well as you do. We're praying wtih you. Love, Lisa Shuchman and Scott, Leah & Ben Shifrel

Anonymous said...

We are all thinking of you and your gorgeous little one. Love, Sasha and her mommie

Anonymous said...

I cannot even begin to imagine what you and your family are going through. I know it is hard to keep the faith so I wanted to share this quote
"Faith consists in believing when it is beyond the power of reason to believe"- Voltaire.
You and your family are in my thoughts and prayers.

Anonymous said...

We're your neighbors in the Slope, and although we haven't met, I am holding your family in the light.

Michele & Aidan said...

Hi Toby: Aidan asks if you are going to be OK, and I say everyone is working really hard to make sure that he is. Aidan does not understand what is happening or how strong you are, but he sure has you in his heart and on his mind. And quite confident that you are going to pull through this in a pretty powerful way.

As does his Mom, who is here for you, and your mom and dad and Yoni...

Let me know what you addition to the prayers...

Love Aidan and Michele

Anonymous said...

All my family's prayers are with you, Toby. G-d bless you.


A Park Slope Neighbor

Anonymous said...

As a fellow park slope parent my heart goes out to you all. You are in my prayers and thoughts. Toby is a beautiful boy and I hope we'll be able to meet him in a playground soon.

Anonymous said...

although we have not met, i think of toby and your family often. i will be praying for you tomorrow and in the coming days/weeks. having a loving and supportive family like yours will give toby the strength he needs to recover from this ordeal. i am sending a giant hug through this note! good luck tomorrow!!

Alisa said...

We will be thinking of you all tomorrow and sending all of the positive thoughts we can your way. Many blessings to you and your family.

Kathryn, Judd & Oscar Counsell

Maya said...

Dear Toby, Mooki and Stephen,
I wish you all the best tomorrow and my prayers will be with you. I am amazed by the strength that you all possess. I know that you will come through this. Toby has been so brave. He looks beautiful in the picture you posted on the blog. I can't wait to come and visit him and read him the stories I got for him as soon as he is well enough to have visitors. Good luck tomorrow.
Love Maya

hannah said...

Go, Toby, go! You can do it, buddy.

Our whole family will be sending you the best kind of vibes tomorrow. In fact, we're gonna start sending them right now -- here's a big, warm hug and a smooch from the Kim family. Lots of love and best of luck.

Heather said...

You are in my prayers. I wish you the best. I hope everything goes well. I hope to see you soon. Lots of love to all of you. Love Aileen.

Maureen Landers said...

I am thinking of the days we spent relaxing under the trees in Prospect Park and look forward to experiencing such pure joy with you and Toby once again. Toby is a strong little man and you are in great hands. I will be thinking of you tomorrow and praying for Toby and sending positive energy to all. Good luck, Toby. Love, Maureen, Max and Leila

Anonymous said...

I will be thinking of you tomorrow and sending positive thoughts your way. Thank God for people like Dr. Laquaglia, who dedicate themselves to perfecting procedures like these. Hope you and Toby can get some sleep tonight! Lots of people in Park Slope will be thinking of you.

Anonymous said...

Hi Everyone,
I am Toby's Grandmother Merci. I want to tell you about an amazing day I had with Toby. Esther, from Chi Lifeline picked us at 7:30am.
From the moment we walked through the doors of Sloan Toby was animated beyond description! Of course the elevator ride came first, followed by a complete tour of the 9th floor starting with the magnificent playroom. All day he was full of incredible energy, not even stopping to take a nap when we came home. I could write a book about today but it would go on for pages. Right now I am filled to the brim with love for this beautiful child, for Mooki and for Stephen. They are very special to our family and to everyone who knows them. Tomorrow Toby will be in God's hands and in all your prayers. Love, Merci

Anonymous said...

Dear Mookie and Stephen,

Tomorrow is a big day for Toby.
I've been thinking about you guys non-stop. I went to MSKCC to donate platelets today, but I didn't qualify because I was dehydrated (!) so I gave whole blood instead. I sat there thinking that giving blood is such a tiny part of what Toby needs and how I wish I could do more to help make him better.

I pray o pray o pray that he will come through this surgery with flying colors, and ace the rest of his grueling treatment regimen. And I pray that you keep supporting each other as you have so amazingly done, and that you continue to be blessed with the love and strength you need to help precious Toby through another difficult day. You are an inspiration to all of us who admire your courage and want to support you on this frightening journey.

Please post to the blog and let us know how it's going because we will checking in for the update.

Open your hands and catch the positive, healing energy I am sending your way...

Lots of love,
Stephanie (Kiera's mom)

BTW, please let people know, as the days get warmer, that they've got to be well hydrated before donating platelets -- lots of water for 2 days prior to appointment.

Anonymous said...

We have never met -- but perhaps at some point before Toby's illness we ran into each other in the neighborhood or at the park. Perhaps we exchanged a smile. Perhaps my son tried to engage Toby in play at the playground -- he loves older kids. Despite the fact that we don't know each other by name, Toby's story -- your story as parents, as a family -- has touched me deeply. I just want you all to know that you are absolutely in my thoughts and meditations. And Toby gets an extra special spot tomorrow. I will send all of the best healing and loving energy I have his way. Warmly, Jennifer, one of your fellow parents and neighbors in the Slope.

anna said...

Like Sheri, I never know how to start a note, but after reading through all the posts (some a second and third time), I know that I only need to speak from my heart. I love all of you so much! I wish that somehow love and hope and positive thoughts were magical enough things to make the bad disappear. Who knows? Maybe they are. I will certainly be sending all of them your way, especially as Toby undergoes tomorrow's surgery.

Mirm said...

Toby, Yoni, Stephen, and Mooki, the most eloquent blogger we know...

Thinking of all of you and hope you're sleeping soundly before tomorrow's surgery. We're sending all good thoughts your way... all our love, best wishes and heartfelt prayers for a smooth surgery and a summer of healing. Love, Mirm & Bryfy

Auntie B and Uncle Dave said...

David and I are not believers in God. But we have asked all in our circle of friends who do believe in God to pray for Toby. We have asked our friends and family across the country who believe in science and medicine, in the power of superb technology, in skilled surgeons, to offer thanks to those who labor to save him and other children with terrible diseases. We are so grateful for his surgeon and for all the staff at Sloan Kettering who have brought and will continue to bring their knowledge, dedication and talents to bear in beating back his cancer - yesterday, today, tomorrow, and beyond. We believe beneficence exists in the universe and we, and all who know of Master Toby's illness, call on it to become manifest as he goes through the coming days, weeks, and years of his life journey. Our love is with each and every one of you tonight and always. Give Toby a special smooch from each of us when he needs one. We are sending an endless bag of smooches to him with this message.

Renee said...

My healing thoughts and prayers go out to you and the family. May the surgery be very successful and may Toby have a very speedy recovery.

Anonymous said...

We thank God for Toby and your family. We pray for God to guide the surgeon's hands, for Toby to persevere during the surgery, and for strength, comfort, and peace as you wait during the surgery. We pray for continued strength thoroughout the recovery process with moments of needed rest.
Park Slope neighbor

Yael said...

I'm praying and saying tehillim (psalms) for you. I'm going to post a link to your site on my blog and a few other places to send as much positive energy as possible your way. Please post good news soon!!!!
Yael, a stranger from PSP

Anonymous said...

Toby, Mooki and Stephen,

We found out about you, your challenge and your incredible spirit from Betsy and David.

We wish you all the best and are adding our positive thoughts, feelings and energy to the great flow of love that is moving your way.

John and Jean Hays
Two friends you didn't know you had in Seattle.

Caryn said...

We're thinking of you Toby, and sending you and your family all our love, support and good wishes. We miss your beautiful smile, gentle manner and of course our daily transit updates. We look forward to seeing you again as soon as you are ready.
Love, Caryn, Millie and your friends at Beansprouts.

Melanie Conklin said...

I have asked those I know to watch over your son. Please let me know the date and time of his surgery so that I may focus on him during that time. I can give him my heart to lean on.

You are doing your very best.

Melanie, mom to Perry

Anonymous said...

Toby, We've been thinking of you all day...praying...sending love and positive energy your way--!

Anonymous said...

My thoughts and prayers are with you today as Toby undergoes surgery.
Renee (Kane street synagogue member)

Anonymous said...

As a father and a neighbor (even though a complete stranger) my thoughts and prayers go out to all of you.
Good Luck and God Bless.

Janna said...

Toby, Yoni, Mooki & Stephen,
Our thoughts and prayers are with you!
Love, Janna, Joel, Emma and Kate

Anonymous said...

Toby and family,

We don't know you, but we are Kane Street synagogue members, and we are incredibly moved by your story. Our son is just over two, and we can only imagine the terrible pain and suffering you are going through. We have prayed for you today, and we wish you a speedy refuah schlemah.

Jessica, Josh, and Avi

Anonymous said...

Through the love of our friends, Dave and Betsy, we feel very connected to you and send our hopes to you for the trials you are enduring. Know that we are all a community of friends and believe that Toby is getting so much care and love that his spirit will soar and persevere. Our thoughts are with you now and for the coming days and weeks. Love to you all from Tony and Jill in Portland, Oregon.

denise said...

We are thankful that the surgery is over and Tom and I are continuing our prayers and most positive wishes for the very best outcome and total recovery for wonderful Toby. Mooki and Stephen you are inspirational. Through the next days and weeks of treatment, recovery and healing know that love and support is coming to you all from across the country from people you don't know yet.

jennb said...

I just came across this through the PSP listserv and am so happy to read that Toby has come through the surgery.

My daughter took the same dance class as Toby earlier this year and I remember being struck by what a gentle, observant kid he is and how sweetly playful you were with him Mooki.

I send out big heaps of love and strength to all of you: for you Toby, for you Mooki and Stephen and for your immediate support system. This blog is incredibly moving and I'm glad for all the ways you offer for people (me!) to help.

Jennifer - mom to Mo

Sheri Pannone said...

Dear Mooki & Stephen,

We send our love for Toby and all of you. Hoping for the worse to be over, and for Toby to be on his way to recovery. Let me know when you need me to come to NY to support and assist.

Love, Sheri, Greg, Linds, Matt & Stephi OXOX

Maratea Cantarella said...

Mookie, Stephen, Toby and Yoni,
Barry and I have been thinking about all of you a lot. Sam really misses Toby a great deal. He is very worried about Toby and hates the idea of him being in the hospital - even though his foot surgery in December was comparatively minor, it was traumatic for him and he really gets that Toby is going throught something horrible. We have sent food previously and have signed on to deliver more in July.
Thinking positive thoughts for Toby and all of you,

Anonymous said...

When you are feeling better and can travel, I will take you fishing at your Grandparents' lake in North Carolina. If I catch more than you or if you don't catch any fish, I'll let you push me in! How do you like them apples?
Uncle "Sir Charles" Greg

Anonymous said...

You are blessed with an amazing family and everyone (including strangers like myself) who love and pray for you daily. I feel like you are my grandson and just know that that I send you virtual hugs, kisses, silly songs, and low-salt chicken soup.
Stay tough!

Anonymous said...

We love you and think of you guys ALL the time. You are always in our prayers.


achsa said...

Dear Mooki (and Stephen and Yoni),
I just got an e-mail from Jacqueline with the news about your adorable and sweet Toby. I can't imagine how hard this must be for you all. My thoughts are with you and I wish you a lot of love and strength in these difficult times. I wish I lived closer so I could actually DO something for you... fortunately you're getting a lot of help! Lots of love from Amsterdam - and a kiss for Toby. Achsa

FriendofToby said...

my daughter, leah rosen, is a member of beth elohim, she is the one who introduced me to toby, that "most delicious" little boy. i check the blog every day for postings; i almost always cry (is it because i'm a mom, a human?) my sister, a cancer survivor, is a member of "team toby" as well. we three talk about him, we hope and pray for him, we marvel at the elegance of mooki's writing shining through the mind-numbing pain. we are in awe of this family.
and we are just three random strangers. that means that the numbers of those folks who are ALSO emotionally invested in toby's recovery must be HUGE.
thank you for reminding the rest of us what is really important.

janice rosen, naples, fl.

Anonymous said...

Mookie & Stephen we're thinking of you and Toby and appreciate our friendship with your brother and sister-in-law David and Betsy. They sure care about you all and thus, we do too. Our thoughts and prayers are with you as are so many others. You're on a journey that few can actually know but many can understand because of the love we have for our children. Sending our love, Laura & Dale in Seattle.

Anonymous said...

Hi Mooki,
I read about the pain meds not working. Hope the morphine did the trick and that Toby's resting better tonight. I'm sending love and healing thoughts your way.

Heather said...

I hope that you have emerged from this awful round of chemotherapy. We think of Toby every single day and pray for him to keep being strong. Heather

Vander Davis said...

Toby and the Pannone family,
This is Vander and Shana Davis, Kai's parents. We would really like to meet you guys. As, you already know, Vander is riding a bike from nc to ca for little guys just like Toby and our son, Kai. Let's join forces and fight this battle together. We have so much to share with you guys. I have included the link to the whole interview. We will be at UNC next Monday the 16th of July for Kai's final dose of chemo.
Please call us @ (910)848-7433.

Shana Davis said...

Here is the link.

Dad Has Cross-Country Plan to Tell of Son's Cancer Fight

Shana Davis

Adele Weissman said...

Dear Mooki and Stephen, I haven't written before, I know your time is taken up with taking care of your darling Toby. Please know that you are in our thoughts and prayers all the time. I read the blog every day and am amazed at your strength and pray that you are all given continued strength to see this all in the past and Toby running off to 1st grade with his backpack on his back. Our love and thought are with you. Adele and Barry (Gila's parents).

Anonymous said...

Hi Mookie and Stephen,

What must it be like to see your son in such pain and not be able to get him immediate relief while you are in the hospital?!!

What a rough week. It's clear that Toby is fighting the war of his life-- Toby vs. neuroblastoma-- and you are supporting him by running from appointment to appointment to supply him for the fight, encouraging him to be strong, and praying every day that he's getting enough of what he needs to win.

If winning this war could be based on something other than his body's ability to fight off cells within itself that are determined to grow and destroy...if it were based on his charm, his beauty (even without eyebrows), his intelligence, his knowledge of the NYC transit system, his ability to build, play, and ride his bike, he'd win hands down. But Toby's fighting an all-stakes war that children should never be forced to enter. I want to know whose idea was it to place a three year old on the front lines of a war like this? How can this war ever make any sense?

The beauty of your family is that you are truly present and totally "with" Toby during his fight. You are living this with him and when he has the freedom to retreat from active duty for a little break, you are both there making the absolute best of the moment, doing fun things with him, enjoying him and letting him enjoy those moments.

Toby is a very lucky boy to have you as parents. Not everyone could be as strong, as focused, as committed and still sane during these harsh battles. As you told us, Mookie, you have a long, long road ahead. Some days and weeks will be awful and others will be almost "normal", like the week before his surgery. As cliche as it sounds when you are in the midst of a war to save your child's life, you need to get some air of your own, so that you can forge forward with him. Make sure you and Stephen take some time to take naps, walks, yoga or whatever helps you clear your mind so that you can keep marching with Toby through all the battles up ahead.

We are all on the sidelines doing what we can by giving blood or platelets, cooking, sending a note, and PRAYING for his recovery. He, and you, are not alone.

Hang in there!


gisele said...
This comment has been removed by the author.
gisele said...

Just a note to let you all know that i am thinking about you, praying for you, and hoping for you. Sometimes it feels like it will never end, like it's just one thing after another and there is no relief. But I swear that there are moments of joy, and that you need to believe that there will be a time when your son will do something ordinary, like go to a friend's for a playdate (i don't know what three year olds do, sorry), and you will be amazed. A few months after my dad's chemo treatments ended, he went back to his bi-weekly poker game on Tuesdays and Saturdays. It actually made me believe in G-d. I am carrying this hope for you (not that toby starts playing poker, but you know what I mean). Wishing you a happy, calm day.--gisele

Shana Davis said...

Hi Toby and Family,
What a smile Toby has! It was the first thing I saw when I opened his page. I pray for both Toby's strength and for yours. My son Kai has been fighting Neuroblastoma for 2 years now and I can feel your pain. No my friend it does not get easier to watch your child suffer and endure, if I said that it would be a lie, but keeping the joy of life you had before is what gives you and Toby strength. I pray that God renews it everyday. Inspite of what it looks like and inspite of the doctor's reports hold on to your joy. That is the one thing that you cannot let this disease take away from you and Toby. I'll be praying for you and Toby. I attached Kai's website I hope it encourages you in some way. May God Bless
Shana Davis

Anonymous said...

Everyone at work continues to pray for Toby.

We love you all,

Bernie Jr.

Sally Jo said...


Out of the blue I emailed Sonia and this is what she tells me! I can't imagine how you feel and just want to be there for you.

Please email me or call me as soon as you can, tell me what I can do or let me listen. Whatever you need, I'm here.


Sally Jo

Sally Jo said...

Dearest Mook, Stephen, Yoni and Toby,

Now that I've read every single post to your blog, I realize that this may be the best way to reach you.

I've learned so much in this past 2 hours (although not nearly enough to fill in the past 9 years). Yoram has not one but two girls! Yoni is 15 and handsome as hell. Stephen has an amazing family. Mook, you are as brilliant, creative, eloquent, and loving as ever. And Toby is an amazing little boy with so much support and love helping him through this awful time.

I so wish that I were closer and able to take a more active role in helping you all go through this.

We had our own shock/grief earlier this year, learning that Eitan has Asperger's Syndrome. But after reading about Toby, I feel as if I should thank God for this minor challenge. My heart aches imagining the pain you must feel as you watch Toby in pain. I can just see him as you describe, enduring it all. No, I can't imagine it because my mind shuts down even beginning to imagine it.

You have galvanized a community of helpers, supporters, nurturers, apt. sharers, yardsale-rs, concert givers, and pray-ers to whom I also give a million thanks to.

We are planning a trip in to NYC on 8/6 and will be around that week and the following weekend. If you are up to it, I will come running. I'm sure that I can make you laugh, if only by looking as voluptuous as I did in 1984 :) I will also happily pad my shoulders, spike my hair up, and oddly apply make up if I think it will distract you for a second. I'll bring equally flattering photos of you to show Stephen and Yoni. And if none of this sounds appealing, I will sit with you and comfort you.

Please, please email me soon.

Love always,

Sally Jo

Brad Jackson said...

Dear Mookie,

i read your info each time and now on the blogs and i cry. I don't know what it must be like, but keep up with the strenght and feelings and I am sure all will work out. Penny and I are too far away to do anything daily. But as we have said in the past, Does Yoni need anything? Does he need time away? Does he even have any time to come up this summer or anytime? Josh is bring him through in August for a few days but wqe are around all month and will do what we can for him. let us know

All our Love

Brad and Penny

jennb said...

Hi Mooki, Stephen and Toby,

It was nice to see the three of you at the elevator bank today. Toby, you wield some powerful magic, conjuring those two “down” elevators in a row!

I also just want you to know how luminous the three of you are together. Through what is certainly the difficulty and darkness of this time, the light and love you three have is totally brilliant.

Sending you heaps of strength and more of Toby’s magic!

Anonymous said...

Dear family,
I'm another Brooklyn stranger (and parent) who keeps up on your story and thinks of you quite often, trying to conjure Toby where he belongs--at the carousel or the zoo or the ice cream place. I have no wisdom to offer--just wanted to remind you again how vast the chorus of hopeful voices is, and let you know that no matter how far you may sometimes feel from the world, you are very much a part of it.

Anonymous said...


I read your blog often with tears in my eyes. We send you lots of strength and love and prayers....

You are an inspiration and I wish you more goodness and health all the time.

Amy Glosser

Anonymous said...

Thanks so much for posting those photos. We don't know each other, but I'm one of your many distant well wishers from Chapel Hill, NC. You're all in my thoughts every day.

Manya said...

Dear Mooki & Family,

I am a survivor of a childhood cancer called PNET. (soft tissue sarcoma) I was diagnosed in my twenties, and though the survival rates were low, it has been thirteen years now, and I'm still standing.
I tell you this to give you hope.

HOPE= Holding On To Positive Energy

Dr. Bernie Siegels' book "Love, medicine & miracles" was my saving grace. It taught me about the power of love, and about all the things cancer CAN NOT do.
I think Toby is so precious.
I pray for you all.
I will continue to hold your family in the light.
Manya Vartdal said...

Hi Mookie,
I spoke with you previously..I have found an apartment for you, for September 1st, 2007. Please call me at your convenience. I am available 24/7. You may reach me at 917-204-0301.
(friend of Valerie)

Liz said...

Stephen and Mooki -- I'm sending you and your family the happiest birthday wishes. You clearly have much love to celebrate, and I hope today can be a day of celebration for you. My birthday is today, too, and I'm thrilled to be spending it in common with Stephen.

My thoughts and prayers are with you and your children every day.

Best wishes

Anonymous said...

I am wailing with you. Again, thank you for sharing with all of us. My God, what Toby has endured and the strength he has is astonishing.

Hold on.

"The road that lies before you will challenge your heart long before it tests the strength of your legs." St. Thomas Aquinas

A fellow brooklyn parent

Sheri Pannone said...

Love you all!


Anonymous said...

A Brooklyn parent sent you our favorite words from the Summa of St. Thomas Aquinas, words I offered at Yoni's Bar Mitzvah. The rest of that quote reads, "Our destiny is to run to the edge of the world and beyond, off into the darkness; sure for all our blindness, secure for all our helplessness, strong for all our weakness, gaily in love for all the pressure on our hearts." Mooki and Stephen, be sure, be secure and be strong through this ordeal and you will come out of this darkness. Toby is an incredible child and he will be the same Toby when all his treatments are finished. Thousands of loving hearts are praying for you every day. Former friends from Greenwood, SC, Plymouth Meeting, PA, Washington, D.C., New Milford, CN, and even Hawaii are sending their love to you through emails to us. You are not alone. Feel the love coming to you from miles away and know many are embracing you. Love, Mom

Anonymous said...

Mooki...I read and digest your words everyday. You guys are in my constant prayers. Love, Bernie Jr.

Taty said...

Hi everyone
It's Taty again. Sorry to be posting the question here, but instead of bothering you in your personal email I figured someone here might be able to answer a question. I sent another general email asking my friends to donate, and with blood in particular I received a lot of replies asking what Toby's blood type was. I never bother to ask because I am O- so figured it wouldn't be an issue. Does anyone know his blood type?
Thank you.

Anonymous said...

My heart is full of love and life after reading your updates. I will send the loving energy I feel coming through your posts back your way adding my own to the mix with hopes that every little bit will help you all in this difficult journey. Hang in there. You have a huge community of people thinking of you every day.

All the best, Jennifer

orangelu said...

Dear Mooki, Stephen & Toby

My name is Luba Proger and I am a good friend of Elizabeth Hovav.
I've been deeply touched by what is happening with Toby and how this has altered your lives.
I would like to contribute in some way, and I have an idea, which I'd like to share with you.
I've been wanting to organize a photography show, which will be a Fund Raiser for Toby's cause.
Besides contributing some of my photographs, I have a couple of photography friends who would love to participate in something like that. I'm taking a full responsibility for organizing everything for this event as well as I have a broad network of people who would be happy to support such a cause.

Please let me know, if you like this idea. I would love to talk to you about this.
I can be contacted at 718.8557210 or 917.3998259

You can see my work here:

Warm Regards,

Luba Proger

Katie Keating said...

I continue to hope and pray that THIS rouund of treatment will be the one that knocks this dreadful disease on it's back. The srength of your family is so profound and I hope that the support of the community will help hold you up at times like this when you need even more.

Anonymous said...

I was so pleased to finally see a picture of Toby. What a precious little boy he is. Every evening my family and I pray for him and for you to Steve and Mooki. I am glad you finally had a child Steve.
Love always your cousin
sarah josephine

Brad jackson said...

Dear Mooki, Steven, Yoni;

Penny and i seems so far away and helpless to assist in many things. I still will do whatever i can for Yoni, time off, vacation, break from home, etc... with our if you prefer without josh. i know he is pretty bad right now, but we are hpayy to help with yoni in any way possible.
Feel free to let us know what we can do- All our love and concern

Brad and Penny

Horace said...

Hi Mooki,

Shai just told me and I am sorry to hear about this time in your life. Having your FAITH is what gets you through times like this and I will say a prayer for Toby as well as send a contribution. If there is anything I could ever do, please never hesitate to ask. His is still the Gerber Baby to me, lol.


Anonymous said...


Our love and thoughts continue to go your way. Your postings are so moving and I cry with you. You are very strong and couragious and you are in our prayers.

Love to Tody,

Amy Glosser

Sheri Pannone said...

We're sending our love to you; hoping, wishing, and praying for the very best for Toby.

Love, Sheri & Greg OXOX

Anonymous said...

Hi Mookie and Stephen,

I just got back from three weeks in Greece where one day I stood on a beach and imagined you there with Toby and Yoni. I saw you playing in the sea, soaking up the sunshine, enjoying the beauty. I wondered if you were enmeshed in the cocoon of illness, engulfed by worry, sadness, stress, doctors, medical reports, and hospital stays that keep you in a zone of your own. I hoped you'd had enough good news after the surgery to be living outside the cocoon a bit, helping Toby recover, get stronger, begin to heal.

Just now I held my breath as I logged onto the blog. And then I cried.

This just sucks! 20-30%! Mind-numbing like a cruel joke, but not a joke at all. Hard to imagine that Toby has to endure even more. It's scary that the stakes of this fight just got higher, Toby's aresnal is dimished, and that you have no choice but to push forward with invasive interventions just to give him a chance.

In your last entry, after your sea of tears, you concluded that you will do whatever it takes to give Toby that chance at life. You have found the strength to support eachother in powerful ways that will help you endure during this fight. We will try to provide food, funds, blood, and any other supplies and ammunition we can to support your family.

20-30% is horrible, but it's not 0. It's much better than the lottery tickets you were playing for entertainment. We've just got to make sure Toby's in the 20-30%. Stay strong and keep writing.

BTW, the pictures are great and I'm glad that you're able to enjoy each other and Toby in the midst of the chaos.

Just one more thing. While we were in Greece, Kiera, who turns 4 next week said, "Mommy, when I get home from Greece I'm going to ask Toby Pannone if he loves me, and if he says yes, I'm going to marry him. If he says no, I'll ask Toby Posel!" I wonder what he'll say.

Much love,

Toñi Serna said...

I'm a Spanish mother, my younger son, Luis is only 6, was diagnosed with a neuroblastome last year(26th of july, I'll never forget). Surfing the web I've found Toby's blog and I felt so close to your emotions and feelings! I'd like to lend you some of the strength I've found I don't know exactly where but we are surviving, Luis is feeling better day by day after suffering 13 doses of chemo, two surgeries, a trasplant, radiotheray, inmunotherapy aand we haven't finished (if this illness had an end...)but he is ALIVE and we are living the good moments and feeling happy. We had some hospital friends loss, but we are still LIVING and that's what we have at the moment and so we take it. Please be strong and try to live the good moments with him as much as you can. MY BEST WISHES FOR YOUR FAMILY.
Toñi from Spain

Adele Weissman said...

Dear Mooki,Stephen, Yoni and Toby, So glad to read about Toby's fun weekend. Hope he's coping well thru this trying week. Having Yochi and Shabtai there must be a great help. G-d willing, you'll all be able to get away for a few days to the beach with Yoram and Gila and the girls. Our thoughts and prayers are constantly with you all. Love Adele and Barry

Sheri Pannone said...

Whoever is listening out there or up there, please let Toby advance onto the next phase on Friday!

I believe for Toby!

OXOX Aunt Sheri

Shoshana said...

I was lucky enough to meet Toby last week when he was at the park with Aileen. I have been reading this blog for a while now, and recognized Toby from the pictures. It was very heartening to see him doing his thing in the park--waiting his turn for the tire swing, blinking in the sunshine.


SaraK said...

I received a link to your blog from another blog that I read and I donated blood for Toby at Sloan Kettering. Here's hoping he has a speedy recovery!

anna said...

I know that tomorrow is another big day for Toby, so I wanted you all to know that we are thinking and praying for him as he undergoes the surgery to remove those nasty lymphnodes!
Aunt Anna, Uncle Greg, Cousin Grace and Cousin Nina

Sheri Pannone said...

Dear Toby,
I'm always thinking of you. Hope your surgery went well.
Cousin Matt

Sheri Pannone said...

Hi Toby,
I miss you. I pray for you every day. Hope you like your birthday gift.

Lots of love,
Cousin Stephanie

Sheri Pannone said...

Hey Toby,
You're always on my mind. You'll be up and around soon. You're the best.

Love you,
Cousin Lindsay

Anonymous said...

I'm glad the surgery went well. It's sure to feel good to be going to your own home after all this time. May it bring you some comfort to rest there after this phase of chemo. You are in our prayers.
Stephanie (Kiera's mom)

Sheri Pannone said...

Dear Toby, Stephen & Mooki,
Every day I wish upon every star,
pray to every God imaginable, and hope for this miracle.

Love, Sheri OXOX

Anonymous said...

Dear Toby, Steve and Mooki,
I was glad to hear that Toby made it through the surgery ok. I have been parying for you guys every day and wished that we lived closer so that my family could help out but since we don't we will just keep on praying for you guys. And don't worry Toby you will go to school soon enough. Love always your cousins , sarah jo, christopher,michael, e'mon, chrisshawna and ericka walker

Gretchen said...

Mooki - When I saw you yesterday, I could tell it was a bad day. I know the look. Hang in there. I know what bad days feel like but as Liam likes to remind me every morning, "Look - the sun came up!" Hang in there. Hang in there.

Gretchen and Liam

Ari said...

Bruce, Beth and Ari Parness will keep wonderful Toby and your family in our daily prayers and will be thinking of Toby's speedy recovery to health, and
the strength for all of you to keep going strong...

anna said...

Mooki and Stephen,

Toby will not know who I am though I remember meeting all of you at Mikey's Bar Mitzvah. I have been thinking of you and want you to know that our family sends all of you love and support. I just recently began reading this blog, and I am moved by your journey and awed by the amazing circle of family and friends that are present in your lives. It seems that love is a powerful healer. Please take a huge hug from me, Mooki.

love Anna

Anna and family

Lisa Shuchman said...


I often think of you, Toby and your wonderful family, and as the new year approaches you've been on my mind even more than usual.

And clearly others who may not have been in touch have also thought about you. I recently mentioned you to Anna Allanbrook at BNS, who remembers both you and Yoni with fondness. She apparently knew all about Toby and said she looks forward to the day he is ready to become part of BNS.

So as the new year begins, think of that time when Toby is well again and this will be nothing more than a memory.

And let this be a year in which your biggest dream -- one shared by hundreds of people who read your blog -- comes true.

L'Shana Tova.

Lisa Shuchman
(Ben Shifrel's mom)

Debbie Brukman said...

My name is Debbie and I'm the pre-k music teacher at Beth Elohim. I play the guitar, and I'd be happy to come play for Toby some time if that is something he would enjoy. Please call me at your convenience as I'm not sure how else to get in touch with the family... debbie brukman 917 334 7174.

Anonymous said...

Dear Mooki and Stephen,
We have been thinking of you every day. Aileen has given us updates about the incredible Toby from her visits with him. He is truly a magical and courageous boy. We send you our love.
Heather, Morgan and David

Anonymous said...

I just discovered this truly amazing website Toby has probably found it already, but I'm sending the link just in case! Enjoy!

Anonymous said...

Dear Mooki, my name is Relli Robinson.I live in Haifa and have been a friend of your parents for some years now.I have met them through Rutha and Amihud.As a friend and a grandma myself, I have been following the story of your family, the pain and the suffering and your coragous struggle. I have visited the blog few times and read some of your messages.The last two, of Yom Kippur and the one before filled my eyes with tears. Words do have the value of words only, in the practical sense, but they do carry our human emotions and this is the human message that I want to send you of hope and bravery and emuna above all !!! I sent you and yours a big hug of HAZAK VE EMATS!We all here, friends of your parents think of you often, try to encourage your brave mother and wish for some light to shine for you in this dark pass. With all my heart I do hope it will.Toby is such a very special little boy and with such supportive family he must make it !!! BEHATSLAHA, Relli Robinson

Anonymous said...

Dear Toby's family,

Although my family moved to Virginia from Park Slope in August, I have been following your blog from down here as Toby's story has reached deep into my heart. Please know that you are thought of in Virginia and I am sharing your story with others who will pray for you here.

Karen Fuller said...

You don't know me, but I've been following your story and my heart goes out to Toby and your family. I'm strongly hoping that all your determination and fortitude will be rewarded.

Karen Fuller
mom to Az (7) and Thomas (3)
Park Slope

Anonymous said...

Dear Mookie and Stephen,
WOW! is all I can muster up to say right now. I am speechless. I can't imagine how one can survive something like this. Please hang on to every bit of hope you can muster. Don't give up! God is good and miracles do happen. May the next miracle of life be given to dear sweet Toby. He is absolutely adorable! I am praying for all of you today.

Linda Gnat-Mullin said...

We send you all good wishes and for Toby to get through the chemo and on to the 3F8 antibody treatment. I will pray for your whole family and ask others to do the same. Miracles indeed do happen! In fact, they are more in the natural order than we know.

anna gold said...

Mooki and family,

I want you to know that even at this distance, you are in my thoughts daily. I send you huge hugs and much love.


Jennifer Goldstein (I worked at UJC from 00-03) said...

Hello Mookie,

I came across this web site and I want to let you know that my thoughts and prayers are with you and your family. Please remain strong I have faith in G-d that it will all be okay.

Warm Wishes

Anonymous said...

What a brave, strong little boy you have. And although I have no idea why this could happen or does happen to any child, since it is out there in the world happening, at least there are good parents like the two of you there to take care of this brave little boy. You are in my prayers.

Karen Fuller said...

I continue to follow your blogs, am moved to tears and I hope for Toby's full recovery. I did go donate blood the other day on Toby's behalf, but was screened out due to mild anemia. I will try again. I will buy the cookies for holiday gifts.

Karen, mom to Thomas (almost 4) and Az (7)

Michael said...

Dear Mooki,
I am one of Sabetai’s former students. You and I met once in Brooklyn, and I believe you stayed in touch for some time with my sister, Janice. Sabetai is very dear to me, and so I have felt his and Yochi’s pain in this difficult time you all are going through. I have also been following your blog on Toby, and all through it I can see just how difficult a time it truly has been and how good, strong, and supportive parents you and Stephen must be. There is of course little I can say to help except to tell you that there are more people thinking about Toby than you may realize.
Warm and hopeful wishes to you,
Michael Fried

Matthew said...

Just thought I'd tell you that you are always on my mind and that Uncle Greg, Aunt Sheri, Lindsay, Stephanie,and I miss you. Hope to see as soon as possible. And I hope ALL YOU have a wonderful holiday season.

love, cousin Matthew

Laura said...

Our family sends love, best wishes and support your way. You are amazing, strong parents!

Laura, Jon, Astrid, Nils, Lars and Sonja A.

Anonymous said...

We wish you and your doctors a successful New Year. And we hope there will be lots of good days for Toby.

bridget creeden said...

Thinking of your family this New Year's Eve. I hope the new year brings you healthy and joyful days, and many reasons to celebrate.

jacqueline said...

dearest mooky,
i have tried to e-mail you, but my mail was returned. until now i didn't know this 'comments' option existed (achsah explained it to me). i have been reading this blog for more than half a year and have been thinking of toby and you. and remembering the one time we picked him up from the beansprouts, 2 years ago when i came to NY, and how ignorant we were then. i wish i could send you a package with strenght. or with relief. but all i can send is my love.
and i pray for toby.

Ronit said...

I am so sorry for your loss, sounds like you have beautiful memories together. I hope Toby remains NED forever and goes on to live his amazing life. When my little cousin was first DX (Jan/05) We were told "where there is life there is hope"! Michael was just declared NED in December after almost three years! Who knows, maybe they will meet one day :-) We live in Israel, and we too will take lice over NB any day! hang in there, I will be thinking of all of you.

Ronit (Michael's cousin) Israel.

Anonymous said...

Heather, I am a friend of Steve's from Greenwood. I came across your site by accident. My mom had asked me to do a search on the internet to see if I could find Steven's brother Bernie so that I could ask about Bernie Sr. I was sorry to see he had passed away. My mom, Pat Zink, wanted me to let you all know she is thinking and praying for you all. The Pannones were great friends of ours during the 70's. Please pass this onto the boys, Anna and Mercy. I'll add a prayer for Toby too. He surely bought his grandpa alot of joy. Lots of love, Judy Zink (

Anonymous said...

I recognize Bernie from his picture on this blog. He looks amazingly like his father, also Bernard. Bernie Pannone was my first cousin, He was my father's brother's son. The last time I actually saw and spoke to him, as I recall, was at his wedding, obviously many years ago. I did correspond slightly with him a couple of times, but for some reason our paths separated and never crossed again. But I remember him with admiration as a Marine Corps officer and Engineer.

His family lived across the street from my family on George Place in Utica, NY until I was about 5 years old. He had an older brother (Anthony) and sister (Anna), both of whom died at the age of 13 of diseases that are commonly curable and treatable today. The first time I ever saw my father, Dominick, cry was when my cousing Anthony died. Bernie was the only child of Bernard and Anna that survived past the age of 13.

God bless you, Bernie. Semper Fi.
Cousin Richard

Anonymous said...

Even in the midst of Job's pain and struggle with
God's mysterious plan, there comes a magnificent
presence of divine mercy – chesed.
When we're suffering unfair treatment, there is
mercy with God. When we're enduring grief, there
is mercy. All these earthly struggles are no accident.
God is in the midst of them, working out His sovereign
will. Yes, it's a mystery, which means we need His
mercy to endure.

You have granted me life and lovingkindness [chesed];
and Your care has preserved my spirit.

JOB 10:12

themacdonnells said...

Hi, I live in TX and have a 13 month old that is battling Neuroblastoma right now. It's nice (well, not nice at all really) to see other families that are dealing with the same thing. I will keep Toby in our prayers and hope that he keeps fighting like the strong little boy he looks to be!

Heather MacDonnell

Chris Roe said...

Stephen - Wishing you and your family all the best, positive energy flowing your way. Be well, keep the faith! ---Chris, Linnette, Evan & Elliot. San Diego, CA.

jacqueline said...

dearest Mooki,
I have sent the following message about a week ago but didn't see it here on the list, so just to make sure i'll send it to you again.
My qi gong teacher belongs to an international healing team that sends healing energy to whoever is put on their list. They have added Toby on their list (following a requets by me). I did not ask your permission or opinion because i know that if anything it will only do good.

Anonymous said...

Dear Stephen, Mookie, Yoni and Toby, Just read this latest, and feel so sorry for our youngest nephew! Tried to respond to your last letter, but could not scroll down to "send". As a cancer survivor, while I can't agree with Mookie that cancer is a blessing, it makes us reevaluate our lives,
helps us to focus on the important
things- relationships and spiritualiy- while material things become less important. Not one day goes by that Toby is not remembered in our prayers, and we ask God now to give him some relief from his painful symptoms. With all our love, Blanche & John

Anonymous said...

The times when I have experienced gastrointestinal problems have felt like some of the most miserable moments my body has had to indure. When I think of adding on top of those feelings of misery the shingles and medication side effects and long list of other ailments Toby is battling - and has been battling for so long, my heart aches for him. I am praying that he feels better and that his body gets the much needed relief it deserves.

Paul said...

I just met Fred Brauer in Vancouver who pointed me to your Blog. I was a colleague of his in the Madison Math department. My son Alexandre was diagnosed with NB almost 8 years ago (stage 4, Nmyc amplified). Today he is a happy and healthy 10 year old boy. I wish and pray that Toby is as lucky...It is heartwrenching to read your Blog. If you would like to contact me you can email me at

Paul Milewski

Anonymous said...

I read about your struggle online, and though we've never met, I just wanted to say that my prayers and thoughts are with you. God bless all of you for your strength and courage.

My favorite quote from the Bible is "Be still, and know that I am."

You are not alone.

Loving thoughts,


Anonymous said...

I feel you pain. I've been there with my little one, that tiny body doesn't seem like it can take any more. He depends on you. It doesn't just strike the little one, but it affects you all. I hold you hand in my mind. I give you a hug. I care.

Patricia Vernon from Texas.

Anonymous said...

We are just one family of many who are thinking of Toby--and you--and sending you strength and good wishes. -Jennifer

Anonymous said...


You are the coolest bride/mom I know (but haven't met). Mazel Tov to you and Stephen! You look so beautiful and happy in those photos!

Wishing you and all of your men much love and health on your paper anniversary!!

Anonymous said...

I ran into you today, Mookie,(at Beansprouts, and I hope I didn't freak you out with my excitable greeting. I just wanted you to know that even though we don't formally know each other, I am drawn to you through your eloquent and loving writing about your son. Moreso, seeing Toby in person, purposefully pushing that red trike, made your heartache so real to me today. It was uplifting to see him with that trike after reading about his long days in the hospital. My kids see me reading your blog and are very attentive to what is happening with Toby. We are all rooting for your family to pull through.
Jennifer(the English teacher)

friend of Toby said...

I was so happy to see the last post, knowing Toby is out of the hospital and back at Beansprouts. Toby, the survivor/thriver pushing the red trike is a wonderful image to keep.
Another wonderful image is the beautiful bride and handsome groom. Grooms often do go uncommented on as if it isn't their day also.
well we are all thinking of you and sending our love.
Ilene, Josh and Jeremy

Sheri Pannone said...

Hi everyone,

I'm so happy to hear Toby is back in school and having so much fun!

I'm praying for good news this week with you.

Love you always, Sheri

Anonymous said...

praying today, all day.
love, a beansprouts mom

rabia said...


There is nothing more wonderful this day than to read your blog that Toby is cancer free. Our prayers are with you to continue his healing and give you strengnth


Rabia and Asim (rayan and Iman)

Sarah said...

Dear Toby and family,
I have been reading your posts for a few months now... disappointed that my husband and I could not give blood (he has a genetically inherited form of anemia, I lived in England just long enough to disqualify me), wondering what I could do. I have been so moved, often to tears, by the horror of what you have been experiencing, articulated so painfully well, and by the love and support that you have shared and found in others. I am overjoyed that you finally have some good news and send blessings and wishes of the best possible future for you all.

Hannah Wisniewski said...


I have been so happy to find your blog, you seem like a wonderful family and Toby is a marvel. I know there are no words to describe the horrors you have been through, my son Joshua is coming up to his 1yr anniversary on Australian Mother Day 11-05-08. We have had a year longer than we were told we would have, yes, cancer IS a blessing and the thoughts you have expressed are the exact wording even that has run through my head this past week.

I wish you all love, joy and rainbows as you continue to love your boy back to health. I am inspired by you and all the other parents fighting this demon as we are. You are the key to his happiness and that is what is truly important, all you can do is love and hope.

Hannah (mum to Aaron-13, Joshua-4, Anika-2)

Holly Moore said...

I am so happy to read that Toby is clean. What great news. I think of you and your family often. Tale care and keep in touch.
Holly Moore

Anonymous said...

Dear Mookie and Stephen, I apologize for not responding to your last two entries: actually I have been working on our Relay for Life of the American Cancer Society. So without reading of your request for prayers, Toby was very much on our minds. On Monday 16th, at our Interfaith Prayer Service, Toby's name, along with his grandmother Merci's, was put on a card, blessed by the clergy, and placed on the altar! Then yesterday, at our Relay, the luminaria were lit at dusk, and there was a candle with Toby's name, in a bag decorated by his great uncle John.The names of all those being honored were scrolled on a big screen, and Toby Pannone followed Merci Pannone! Not a day goes by without Toby being prayed for, either at morning Mass, in
Grace before Meals, or in silent meditation.
Your expressed feelings of guilt, Mookie, confirm you as a
Mother. I don't know a Mother who doesn't blame herself for everything that is not perfect about her child, even for things beyond her control.
I'd like to share a poem read at our Prayer Service:
It cannot cripple Love,
It cannot shutter Hope,
It cannot corrode Faith,
It cannot eat away Peace,
It cannot destroy Confidence,
It cannot shut out Memories,
It cannot silence Courage,
It canot reduce eternal life,
It cannot quench the Spirit.
We hope that Toby's tests were good, and send hugs to you all. Love, Aunt Blanche & Uncle John

Anonymous said...

FANTASTIC news re: the latest scans- and the photos of Toby are beautiful-- he looks so healthy. When can we get together to celebrate?? mucho amor amiga and Mazel Tov. balinda

Anonymous said...

Hi Mooki,
I've been checking your blog periodically for updates and was grateful to see your latest posting. I am so pleased that Toby is progressing in the right direction. Now that I work for Rady Children's Hospital in San Diego I have a lot of contact with cancer patients. They are the MOST amazing kids I have ever met and I really enjoy being a part of their lives. One of these days I will get out to NY and meet Toby in person. I am taking 5 cancer kids to SeaWorld next week to participate in a dolphin interaction program, I can't wait to see the smiles on their faces (I'll send a photo or two).

Everything is going well with my new job, hope all is well at UJC and most importantly with Toby and your family.

All the very best,
Lori Mathios

Anonymous said...

Hi Mookie,
Thanks so much for the update. I'm happy to hear that Toby has been traveling and having fun as well as continuing with his treatment. The joy he's experiencing in life must make the treatments that much more bearable. He's grown so much! You are still in our prayers.
With love,
Stephanie (Kiera's mom)

Vickie said...

Thank you for the affirming note you left on Erin's home page. I take your compliments very seriously because you are such a graceful and inspiring writer. I put your wishes for Toby in my wish basket a week or so ago when I read them. Toby looks so happy, I hope you really enjoy France.

Anonymous said...

Hi Toby, Yoni, Mooki and Steve, So happy to have news of you- just read your latest blog! Toby looks so cool travelling in France, but he had a special glow at summer camp in N.J. We're glad you had a positive experience at the silent prayer group- John and I attend a contemplative prayer group weekly, and remember Toby there. Looking forward to hearing more from you!
Much love, Uncle John and Aunt Blanche

Onnew said...
This comment has been removed by the author.
Anonymous said...

I think about you, wonder how you and the guys are doing, and assume no news is very good. Hoping Toby is thriving...
Much love.

Anonymous said...

Dear Steve, Mookie, Yoni and Toby, As we write this, you're in Phila., at Childrens' Hospital, my old haunts. You are uppermost in our thoughts and prayers, as you continue this difficult journey. My current bout with chemo pales in comparison with Toby's ordeal, so I will offer up any discomfort I have for our dear Toby's relief. May God be with you and give you the strength and courage to face this new challenge. With our fondest affection, Blanche & John

Melody said...

My grandson, Shawn, has stage 4 neuroblastoma. We live in Indiana and are considering going to New York for the 3f8 treatments. Is there any information you can share with me. I've been researching it online, but the experience of someone who's been through it would be invaluable.
Thank you so much for your help.

Anonymous said...

Dear Toby, Mookie, Steve and Yoni, So glad to hear from you, and wondering if you're still in Philadelphia, at Children's Hospital, and how you made out there. You've had a fantastic attitude all along- making each day count, and trying to give Toby new experiences and happy times every day. We wish we lived closer, so we could take you out for dinner, or some treat. But we pray for all of you every day, and people are always asking us, "How is Toby?" All our love, Uncle John and Aunt Blanche

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