Monday, June 25, 2007

Surgery + God


We are less than 36 hours away from Toby's surgery.

Last week we met with our surgeon, Dr. Laquaglia, who impressed us with his warmth, directness and knowledge. He showed us some pretty amazing and sobering 3-d scans of Toby's body, with the large tumor immediately visible in the lower right abdomen. The mass encases several blood vessels and arteries and butts up against the vena cava (the main vein in the body) on two sides. It also completely surrounds a major artery to the right kidney, which puts that kidney at risk. Dr. Laquaglia termed the surgery "life-threatening," but reminded us that it reduces the risk of cancer cells growing back at that location, something that chemotherapy alone cannot do. Bcause of the tumor's location, it will need to be "peeled away" bit by bit from the surrounding areas. There's no margin for error. We asked Dr. L how long the surgery would last and he replied "as long as it takes." He believes he can remove the entire tumor and is committed to doing so, having performed 690 similar procedures over the last 10 years. He really is the best surgeon for neuroblastoma and we completely trust him.

Following the surgery, Toby will most likely be on a ventilator for 24-72 hours and will be in the ICU at Cornell medical center, across the street from mskcc, for observation. He will receive an epidural during the operation, to lessen abdominal pain. He will have lots of tubes and ivs as well as a catheter. We are told that he will be kept sedated until the breathing tube comes out.

These pre-surgery days have been very frightening and I’ve gone searching for neuroblastoma blogs (yes, they exist!) to help my anxiety. I’ve been continuously struck by how much faith these parent/writers have. Their children are going through a living hell... in tremendous pain or in incredibly debilitating circumstances. Hair, eyebrows and eyelashes have fallen out, immune systems are one small step away from collapse, weight is at skeletal levels, small bodies bear the full force of unimaginable quantities of poisons. and yet the parents manage to retain a belief in God, a sense that the world is good and just.

I myself have been having a hard time with God lately. When my parents were here, my father bought me a slim volume entitled "Yosl Rakover talks to God," which he inscribed with his customary passion and elegance: "For Michal, our beloved daughter, in dire need, a heart-tearing shout to the hiding God. With unconditional love, from Mom and Dad, Brooklyn 4 May 2007."

I've read the book twice now and wish that i could say that I find it helpful or inspiring. Perhaps I don't understand the nuances at play. And I admit that I haven't been able to muddle through the commentaries by Emanuel Levinas and Leon Weiseltier... perhaps those would shed some light. The narrator of Kolitz's story is just hours away from his own death. He has lost his wife and all 6 of his children in horrifying circumstances. His comrades in the warsaw ghetto have died around him during the previous night's fighting. Alone, he wrestles with God and proclaims his unyielding faith, even though God has veiled his face and turned away from the suffering of millions. There are passages of stark beauty, but much of the prose is tied up with vengeance and a strange paean to the nobility of suffering. Kolitz passionately believes in God, even though and despite the fact that God is absent. I have always loved this inverted kind of thinking, have felt myself pulled along and buoyed by its logic. But it hasn't moved me this time. It isn't easy to have unshakeable belief when my innocent, beautiful child is in the throes of a life-threatening disease. I'm sorry Daddy, but your inscription is the best part of the book.

I've been luckier with another small book, "When bad things happen to good people," by Rabbi Harold Kushner. Although the title rubs me the wrong way, it is most emphatically not pop-psychology, but instead a moving and elegant response to suffering.

I still feel that what is happening to Toby is tremendously unfair. I am scared almost every minute of every day, I worry endlessly, I ache for my child and I admit that I am angry at God. Yet I find great relief in Kushner’s idea that God is not responsible for human suffering, but can provide us with the strength to cope with our situation.

Kushner writes, “I don’t know why my friend is sick and dying and in constant pain. From my religious perspective, I cannot tell him that God has His reasons for sending him this terrible fate, or that God must specially love him or admire his bravery to test him in this way. I can only tell him that the God I believe in did not send the disease and does not have a miraculous cure that He is withholding. But in a world in which we all possess immortal spirits in fragile and vulnerable bodies, the God I believe in gives strength and courage to those who, unfairly and through no fault of their own, suffer pain and the fear of death.”

Kushner has also introduced me to an incredibly powerful line of reasoning: at a certain point I can stop asking "why has this happened to me?" and move to "now that this has happened, what shall I do about it?" This is the kind of thinking that I embrace.

We ask that you believe, that you pray, that you give us strength and that you think of Toby on wednesday, as he undergoes the major, invasive and 10-hour surgery that will remove the tumor from his body. We are fearful, but determined and hopeful. Our little boy needs your thoughts and your love.

Also, if you are so inclined, please, please send us a comment on the blog. You simply don't know how important it is for us to read your words and wishes. It connects us to all of you in an immediate way that we find very reassuring. I have changed the settings so that you can comment (click on the blue comment link directly below this post) without needing a google account. Simply write your message and click on the orange "publish your comment" to post.

We thank you for your continued prayers, care and kindness.

love,
mooki and stephen

87 comments:

Anonymous said...

Mooki and Stephen,
I’ve been checking Toby’s blog constantly since I first heard about his diagnosis. I want you to know that you are in my thoughts every day. I haven’t posted anything because words seem so inadequate right now, my eyes often fill with tears reading about what you and Toby are going through…but I am at a complete loss as to what I can possibly write or say to offer you comfort. I am continually blown away by the way you are able to find the words to write so honestly and eloquently about what is happening and what you are going through. So please know that my husband and I are thinking about you, and that Toby is in our hearts every day. We are wishing him only the very best, but especially on Wednesday we will be thinking about him and will be holding our breaths hoping and praying for a successful surgery.
Marci

jewishspiritualcounseling said...

mooki,

toby is being watched by the angels, at least that is the rumor i heard at my shul on shabbat, may he have a refuah shlemah. a healing of body and soul, he is such a brave and beautiful boy, and i pray for him daily - God, hear all our prayers and send your loving presence to be with toby during the surgery and work through the handsof the surgeon to heal this small, fragile cherub

love josh

Anonymous said...

I continue to send my deepest and most heartfelt wishes to all of you, and hope you'll be able to take in the strength, love, hope and support of so many of us fellow parents and humans. And Mooki, just to say I hope that you take what's helpful from the books and the ideas you mention, but also that you just allow for your inevitable anger and complicated feelings, and try to be good to yourself! What a beautiful photo--so nice to see. So many of us are out here, wanting to connect in whatever way we can. All the best to all of you,

Nancy W.

Susan and Jim said...

Mooki,

Just a virtual 'heart to heart' hug. I keep writing things and erasing them-- words cannot express the outpouring of emotion I have for you and your family.

Sending prayers, karma, creatively visualized success, and positive energy of every kind.

Susan

Anonymous said...

Sending our prayers to all of you -- from a Park Slope neighbor who has not had the privelege of meeting you yet. Your love and perserverance is both humbling and inspiring.

Marisa Elana said...

I just gave platelets for Toby today, and I'll be sending good thoughts in your direction! Lots of love from another Michal...

gieske said...

Mooki and family,
You live two blocks away from me. I have a little three year old girl and just thinking about how I would feel if she was going through this is heart wrenching. You HAVE the spirit and power that God wants you to have already! I'm a Quaker, and I believe in the inner light, and yours is shining through quite powerfully. I will visualize Toby's inner light on Wednesday as shining strong and powerfully as well. When you were commenting on the book your father gave you, I was thinking, she should read "When Bad Things Happen To Good People" and then I saw that you had. I found it very helpful during a trying time in my life a while back. If you can stand it, Marianne Pearl's A Mighty Heart, or Christa Tippet's NPR podcast of Speaking of Faith which has an interview of Marianne Pearl, might be interesting or helpful to you. She had/has a very intense and powerful spiritual approach to surviving her ordeal.
I have a car, and though I am going out of town July 2nd through July 14th, I would be happy to take you to the hospital or anything else you need, do your grocery shopping or handle some mundane task, tidy up your house, whatever. Call me 718 875 5484 or have Jessica call me. I'm on Third Place between Court and Clinton. You already have the strength you need to get through this. Peace. Dinah

Anonymous said...

Mooki, Stephen, and Toby
We hope you feel the love and support of everyone in your community and it will strengthen Toby to continue to be courageous. As parents, may you also feel the love and support around you and in spirit to help you stay determined and hopeful.
You are blessed parents and are blessed to have such a wonderful boy.
-M.

Anonymous said...

Stephen and Mooki,
I will be thinking of you both on Wednesday. Toby is such a beautiful boy, and even though I haven't met him it's obvious that he has an amazing spirit! I don't feel that there is much I could possibly say at such a time, but if it provides you with any comfort at all, my cousin's son had a brain tumor at about Toby's age, went though a lot if intense treatment and also complicated brain surgery, and he is now a healthy and happy boy who has recovered completely. There is a lot of hope! And so much love out here being sent in Toby's direction.
Take care,
Kim Edberg

Regina said...

Dear Mooki and family,

Thank you for your generosity in sharing these powerful experiences and reflections with us. Toby and all of you have been very much in my thoughts and prayers, and I hope to be of more practical support as well in the weeks and months to come.

I saw Yoni in Prospect Park a few weeks ago and gave him a big hug. Soon after, I saw him surrounded by some of his friends who clearly hadn't seen him in awhile, and was grateful for the the network of love and support that connects all of us in Brooklyn and beyond.

I'm glad that Harold Kushner's book has been helpful for you. I want to echo the encouragement of Nancy W to honor "your inevitable anger and complicated feelings" (which I think that Rabbi Kushner is less helpful in validating). I personally believe that any God worthy of being God is capable of accepting--and helping us to express and release--ALL of our feelings,including anger, especially at times like these.

Sending many blessings for healing and peace,

Regina

Anonymous said...

As a parent I have tremendous sympathy for what your family is going through. You and your husband are doing everything in your power to help your son. Toby knows that. You've gotten him the best medical care in the world, and you've been there with him every step of the way. That's all that matters.

One day this won't be everything in your life. Until then, I wish your family luck, strength, and peace.

Judy said...

Dear Mooki: You know how I feel about God. I have major issues with The Guy. When I think about Toby, I have even more issues. I totally understand how insufficient the literature of comfort must be.
However, I have been reading a book called The Essential Kabbalah. It has given me a way of understanding and accepting the Divine that works better for me than the Guy with the flowing robes and the long white beard who seems indifferent to human suffering.
The Kabbalists do not identify God as something resembling a human being but rather as an everpresent spirit and energy that cannot be described as a He or a She or even an It. God is in every facet of creation; in light and in darkness, in every molecule and atom. God IS Creation (as I understand it).
His emanations are Keter, Hochmah, Binah, Chesed, Gvurah, Tiferet, Netzah, Hod, Yesod and Shechinah: Crown, Wisdom, Understanding, Love/Grace, Courage, Beauty/Compassion, Eternity, Splendor, Foundation and Divine Presence.
I believe that God and all his emanations are totally manifest in you. I have seen evidence of them when I have visited you. In your love and courage and tears and rage for Toby. In Toby's wisdom and his beauty and in his tender, beleaguered soul. In Steven's gentleness and patience and grace. In the kindness of your family and friends. In the skill of the doctors. In the bitterness of the medicine. In the paradoxical cruelty of the cure.
Toby is in my thoughts all the time and I wish, plead, reflect, argue and hope (I guess this must be prayer) for Toby to get better.
I read somewhere else that each one of the Sephirot is represented by an archangel: Michael, Gabriel, Raphael, etc. This may be inconsistent with my atheism but I am speaking to these people in Toby's behalf. Somehow I find it easier to deal with them than with You-Know-Who. I'm asking them to surround you today and on the day of the surgery and every day after to protect and heal Toby, to give you even more strength and to give you light.
All my love...

Anonymous said...

hi..i read your story in the paper one day and i feel for u ..i hope he get better soon. hes in prays-jen

Anonymous said...

I recently saw Mooki and Toby walking towards the playground at 3rd Street. I do not know you personally, but as a member of the PSP listserve I have been made aware of your plight, so it was easy to recognize you both. I was struck by the determination in Mooki's steps and the fact that even with the tell-tale signs of chemo, that Toby is determinedly a little boy with an undeniable sparkle in his eye. When I saw you two, I couldn't help but think about how cancer has struck my own family. How my mother was just recently discovered to have stage IV breast cancer and just a short and VERY long year later she is on the mend. How the odds were against her and she survived. How utterly scary it was for her, for us and how even still I can't imagine what you're going through. We asked the same questions about God and the fairness of the universe and I came to find comfort in the idea that these questions are important, that they are not answerable and can be very uncomfortable, but that you don't have to settle on anything to get through things. That life can be terribly unfair, but still this unfairness doesn't keep us from fighting, from loving, from doing what we have to do to help those we love. In that I found solace, that meaning is not the thing, that fairness, while desirable, is not the thing. And as I write this, I am sure that there is a lot of it that isn't as coherent as I would like for it to be, but what I am trying to say is that your love is every day strengthening and so will your resolve to get through this. I hope you can give yourself a pass on answering the larger questions. Your family is an inspiration. I wish words weren't so impotent. You are all in my thoughts.

A Park Slope Parent

Anonymous said...

My thoughts are with you all in this tremendously difficult time. I don't know you, but I am a teacher of three year olds in Park Slope, and a mother, and my heart breaks for your situation. I wish you and Toby strength as you get through this.

Molly

Anonymous said...

I don't know you, but I send you the warmest of wishes. With the hopes that strength can be collective, I tell you that my whole family will be with you, Toby and your family on Wednesday. I wish I could say more. I wish I knew that the ache I feel now reduced your burden. Here's to not knowing, but being brave nonetheless,

Sara

Dianne said...

Dear Mooki and Stephen - My name is Dianne and I live in Greenwood, SC. I went to school with Bernie and he is the one that emailed me the link to the blog. I work at Wesley Commons which is a continuing care retirement community here in Greenwood. All that to say that since Bernie sent out the first email about Toby we have had Toby and your family on our prayer list. We will continue to pray for all of your family as you battle Toby's cancer together.

Ed said...

Toby, Mooki & Stephen:

My words, thoughts and prayers are lost among the words, thoughts and prayers of everyone who meets you. For you, we all share a common hope: to hear your laughter and know your joy. We cry for it to come soon.

With all our love, Ed, Nancy & Will

Chandra said...

I owe you a "thank you". Sharing your story has resulted in more hugs to my 1 year old son, more "I love you's" to my whole family and more patience with my patients (I am a nurse). I realize that this is all at the expense of your suffering and oh how I wish that was not the case. Tonight, when I get home from work and put my son to bed, I will drum up as much positive and peaceful energy as I can and send it to the surgeon who will be operating on Toby, the nurses and others who will surround him while in surgery, your family and most of all to the little boy who has made a difference in my life without ever having actually met me - your son.
Chandra

Anonymous said...

I will be thinking of you all and especially of Toby tomorrow, hoping that my prayers will be heard.
He will get through this, I am sure, he seems to be a very strong little man.

With all my love,

Charlotte, mom to 2-year-old Mateo.

Anonymous said...

Though our family lives just down the street from Bean Sprouts, we haven't had the pleasure of meeting you or Toby. We will send out our positive energy, good thoughts and prayers for you all tomorrow in the hope that we will someday be fortunate enough to meet this incredibly strong, beautiful little boy and those who love him so well. A big virtual hug to you all...

Fern, mom to 15-month-old Malin

Anonymous said...

I don't know what to say except that I will be sending all of the positive energy I can muster, praying as hard as I possibly can and visualizing a positive outcome for your son's surgery. It seems that many people will be doing the same. From my family to yours...
With wishes for only good things to come.....

gisele said...

Mooki and family,
You are all in my thoughts and prayers today and every day. Both my parents have been through major surgeries at Sloan Kettering, and I truly believe the doctors at MSKCC saved their lives. It's an amazing hospital, and I have complete trust in the ability of their surgeons, nurses, and staff. I am sending you all happy and healthy thoughts.
-gisele

Anonymous said...

Though we've never met, your familiy is an inspiration to us. Sending you all the positive energy, thoughts love and support you deserve. A big hug to you and Toby.
NPV

Anonymous said...

So many people across the world that you don't even know are following your story. As hard as it is to read about your pain, I continue to read because I am hoping the positive thoughts and prayers that I am sending your way can help.
a friend of a friend

Anonymous said...

I do not know you and your darling boy, but please know that there are prayers coming from my part of the country for his recovery and strength. (((HUGS)))

LindaSueBuhl said...

No trite or pat greeting card responses will help - this is a time to go step by step. I've gone through the cancer treatment/surgery thing with a dearest relative and actually did learn somethings. Be very gentle and kind with yourself and those you love. Allow strangers to speak words of comfort without explaining the exact situation - as a friend once told me - it is OK to give someone the time without telling them how to build Big Ben. We will pray for Toby - and for you - we connected to this blog through Ellie Skees blog. Bless you -

Anonymous said...

Mooki - I interviewed your nanny in 2005 - well, not really, she didn't show up, which at the time irked me. I emailed you out of frustration and was struck by your compassionate reply, to the effect of, you should do what feels right to you, you didn't get defensive, you didn't make it about anything but the situation, I got a feeling that you were and are a kind, compassionate and strong person. My thoughts are with all of you. - Jeanne

Debra N.C. said...

Dearest Mooki and Stephen -- I am currently out of town teaching at a Jewish teen leadership camp and want you to know that hundreds of Jews will be praying for Toby's refuah shleimah -- complete healing -- tonight and tommorrow. A friend is also sending his name to an international network of Jewish chaplains, who will be adding him to their prayers. When my older daughter had a stroke at birth, many people had her on their mishebeyrach lists for months. She recovered fully, thank God (which I say almost reflexively), and while of course I can't say if these prayers made the difference to whoever is in charge in the universe of deciding who is healed and who is not, I can say without equivocation that they made a tremendous difference to me and allowed me to 'borrow' strength from this community that helped me get through that time. I'll pass on the words of friends of mine whose young adult son was killed on erev Yom Kippur while riding his bike in Jerusalem a few years ago. These friends, theologians and authors both, simply said that when people ask them if they struggle with 'why me,' they respond 'why not us, why not our son.' It is a profoundly humble statement. And I share it wtih you in the hope that it will help you continue to put aside this unanswerable question. I check the blog for updates daily, and you and your beautiful son are getting all of my thoughts and prayers today and tommorrow most especially. In hope and compassion, Debra N.C.

Anonymous said...

No parent should have to go through what you are going through. No child should have to suffer like Toby. His photos take my breath away. He is so so so beautiful and full of life. I was so mad at my girls this morning because they were giving me typical toddler trouble during our morning routine. How dare they want to pick out their own clothes! Everything is back in perspective now and I will hug and kiss them a lot longer than usual when I see them. I haven't yet but I will tell them about Toby and show them his pictures. My 3 year old will want to draw him a picture. We will talk about him a lot tomorrow and make sure that we continually keep him and your whole family in our thoughts and prayers. MSKCC is a wonder. My mother survived breast and lung Cancer having had her treatments and surgery there and 9 years later continues her after care there. I have tremendous faith in the ability of the surgeons in that medical institution and Toby is in the best hands for this major operation tomorrow. I wish I could help you with the God thing but I can't. I too love your father's inscription. I don't know you but I am sending your family love love love and at the end of this ordeal - peace. - Pamela

Anonymous said...

For what you are going through, it seems there are no words that could possibly be adequate in bringing you any comfort, but I hope you know that you and your family are in my thoughts.

I'd like to thank you for this blog and keeping things in perspective for the rest of us parents out here who are so "bogged down" by the details of every day life. Following your blog reminds me to love and appreciate my son and to slow down and smell the roses.

On a positive note - I have had a close friend (as well as his extended family members too) battle, fight and win against stomach cancer. You will be in my prayers!

Anonymous said...

Dear Mookie, Stephen, Yoni and of course, Toby,
Now its summer and you know what we're thinking about- those days on Block Island when the world is perfect, the sky is blue, the ocean crisp and playful, and there are hundreds of starfish waiting to be gathered up- and- I think the best parts- the sharing of all this perfection with a family we just bumped in to so long ago- just by chance, and found we had a common love of the beauty and wildness of the place. Thank you for all the walks and beach combing, bonfires, body surfing, wonderful dinners and laughter- we're all using these memories to focus in our love for you all.
Martha, Chris, Nils and Jens

Tracy & Bruce said...

Dear Family--- I have shared Toby's blog addy with friends across the country and received email from complete strangers in 22 states... of course all offering prayers and support. Some wrote that the addy was shared with them because they also have an ill child, many said that your beautiful words inspired them to works of kindness in their own communities. I know you have received similar messages from people you have never met. I hope this world of love and prayer is of some comfort.
We are with you at all times.

Melanie said...

thinking of you daily and looking forward to a time when we can again compare the curls on our sons' heads while sitting in shul. thank you for blogging.
hazak v'amatz. --melanie

Caty, mom to Claire (5) said...

I wish I had some words of gentle wisdom. I offer many many warm prayers and thoughts of hope and healing. I will be thinking about Toby and all of his loved ones on Wednesday.

Dana said...

I'm another of those people who knows God only in his absence, and yet somehow finds it important to pray. I'll be doing so tomorrow for Toby, and for all the rest of your family.

Anonymous said...

Our love, thoughts and prayers are even more so with you and your family at this incredibly difficult time, and all our faith will be with Toby during the operation tomorrow. I hope all the messages that you receive help boost your strength and courage over the next few days.

Jennifer said...

Of all the emotions you must be feeling right now, I hope that "alone" isn't one of them. You couldn't have a bigger team rooting for you and Toby out here in the world. He's an amazing little boy and he's lucky to have you to guide him through this. We will think of your family even more than usual on Wednesday.

adrienne said...

Dear Stephen, Mooki, Yoni, and Toby,

I have not meet your family but am apart of the PSP community and a new mom. Toby is in my thoughts everyday. I feel your anxiety every time I go to read your blog. I was speaking with my mom the other day and we talked about beating cancer....I know many adults and children who are healthy and happy after recovering from cancer. I will only have positive thoughts for Toby and your family tomorrow.

Anonymous said...

My thoughts and prayers will be with you all tomorrow, and in the days and weeks to follow as you continue along the long hard road to Toby's recovery. All good wishes from a fellow Park Slope Parent who is grateful for wonderfully supportive community here.

Anonymous said...

hello. i hope i express myself the way i feel. i just always say as a mom, as a physician who has seen life come and go so unexpectedly that it has shaped my philosophy. How blessed are we to have these precious beings in our lives. To make us understand the importance of the purity and beauty of life at its simplest. What blessing to be able to shower and bestow this creation with all our nurturing, to ensure the blooming of such a powerful spirit. This spirit is forever, eternally, no matter what happens. Think of how he does so much for you with so little time here so far. He still has so much more to do, for you, for all of us. Be grateful that you have this brave beautiful Toby. Because so many go through life without this opportunity to know unconditional love from our children and ALL that comes with their spirits, all that they teach us. I pray for strength and support for your family. Toby will be fine. I know it.

Anonymous said...

Dear Toby,

I'm a park slope dad (of a 2 year old boy) and a recent cancer survivor. I want to send you my very best wishes for a successful surgery tomorrow, and I will be thinking of you. I was diagnosed with Hodgkin's Lymphoma about a year and a half ago, and had six months of chemotherapy. Since then I've been free of the cancer, but am still under close watch. One of the most important things I learned is to keep the love of your friends and family as close to you as you can - and realize how lucky we are to have such great people in our lives. Also, strong trust and faith in your doctors and nurses is a good idea too! It's pretty amazing what medical technology is able to do for a lot of us cancer patients these days. I'm so so sorry that you have to go through this, but I know you'll do great and please know that we are all with you!

love,
Steve Rivo

ps please tell your mom that her blog is very beautiful and moving, and thanks for sharing it with us, and stay strong!

Anonymous said...

I think of your family so very often but will do so tomorrow with strength and conviction and bravery outlining the edges of my contemplation. I am one of many hands giving yours a gentle squeeze.

- A Park Slope Mother

Anonymous said...

Mooki, Stephen, Toby and Yoni,

We are sorry that we again cannot come up with Yoram to be with you tomorrow - We love you all and you are in our hearts all the time - we see your pictures come up on our computer every day as we eat our meals, and Ayelet is always the first to yell "Toby and Yoni my COUSINS!!" Hugs and Kisses Gila, Isabela nd Ayelet.

Barbara said...

Mooki, Stephen, Yoni and all the extended family, not a day goes by when you are not in our thoughts a prayers. I will continue to keep you in my thoughts and pull for little toby to get through this. with all out love and prayers...barbara, jerry, jake lang

Anonymous said...

I weep each time I read Toby's blog, I weep the tears of the mother of 2 small boys (2.5 and 1) who sees in your life how fragile all the beauty around us is.

I will hold you in my prayers as Toby undergoes his operation. May you know arms of love around you and God's care for you as you travel this very dark and lonely road. I can't tell you why I know God exists but I know it with a quiet and unshakeable certainty. I can't tell you why bad things happen to innocent, beautiful children as it seems so opposite to the purpose and meaning of God. What I do know is that God is present in the love of people whom you have never met, the love and care of neighbors, friends and family all of whom are compelled to care for you and carry you through this time. Even if you don't have any prayers in you right now, we will pray for you and pray for Toby's safe passage back to the playgrounds of park slope.

Anonymous said...

There are so many people that do not know you or Toby or your family that are rooting for you...I am one of them. I check the blog every day for updates and will check on Thursday morning and am confident that all will be okay. Our prayers are with you.

Anonymous said...

Dear Mooki, Stephen and Toby

I wish I can offer some profound thought about God, take away the pain and make everything back to normal. I struggle with words, nothing seems to be strong enough to reflect my sympathy, love, pain and hope.
You're always in my thoughts. It kills me that I can't do much right now to help you physically, but I pray as much as I can and I share your story with people I know to gather as much positive energy as possible. Shai donated the platelets.
I'm positive that the operation tomorrow will be successful, it must be, and we all will celebrate Toby's fourth birthday in August.
And you will find God again.

Love,

Elizabeth, Shai, Maya and Natalie

mira said...

dear mooki,stephen,yoni and toby
we all , including our kids , pray for toby's health. just lighted a candle and asked "safta" to do whatever she can do to keep toby healthy and safe through the operation.
"Shema israel hashem elokeinu hashem echad!!"
we send all the strength and love
mira,yoram,itzchak,shira and talia
israel

Anonymous said...

Swimming Lessons

Oh how it always seems to come back to trust. Trust over fear. Throw
yourself into the water and trust that your body will know how to swim.
Trust over fear. And doesn't the fear really push you into the direction of
trust? At least intitially-- before the too analytical mind steps in with
all kinds of doubts and what-ifs?

But the lesson of trust is one that I seem to have to learn over and over--
each time unique as if I'd never known the lesson at all. I throw myself
into the water and trust that my body will swim, or at least know how to
surface for air. But the water in the lake, where I first learned to swim,
is different than the river's swirling currents or the rolling swells and
crashes of the ocean's salty waves. Each liquid requires a different kind
of swimming, a different set of body motions.

I have been lucky-- having learned to swim in many manners of water. I was
only a little girl when I first learned to take the leap of faith from the
top of the 'Big Falls' into the cove off the Tennessee River. I'd watched
(with envy) my brothers do it with grace and humour in the form of swan
dives and multiple flips. The best I could do was a clumsy jump-- arms
flailing and legs kicking outwards in order to clear the projecting edges of
the waterfall's unforgiving stone. Eventually I took the leap and survived
the stinging slap of the water against my awkward arrangement of body parts.
I sank fast and hard-- deeper into the cove than I 'd expected-- the water
colder and darker with each inch of descent. But my little girl's body did
know how to surface and my mouth opened wide to take in that crucial breath
only after I pierced the line where water meets air.

As an adult, I walked alone in the Himalayas-- through rains so heavy the
land was sliding down. Even then, with my eyes forced almost closed by wet
winds, I trusted my legs to brace and balance against the overland currents
of a monsoon flashflood. I trusted a butterfly who lead me through
knee-deep mud back to a walkable path. And somehow, slowly, I made it
safely to my destination.

So now I face the elusive waters of a sinister cloud. And I wonder. If I
throw myself into this questionable form of water, this puffed-up cumulous
mass, dark and heavy with lightning bolts and the roaring thunder of a
child's worst nightmares-- Can I still trust? Trust over fear. But can I
trust that if I throw myself into the cloud that my body will know how to
swim across the sky?

As usual, the answer does not come in advance. "Trust over fear" I tell
myself. "Trust over fear" I repeat in disbelief. Trust over fear. Trust
over fear. Trust. Trust. Trust...

(artist, Margi Scharff, initially heard her story on NPR, this is from her blog)

Lisa said...

RJ, Max and I think about you all constantly. Max often asks if Toby is still sick, and when I say yes, he says with utter conviction "But he is getting better!" (Then he asks what his birthday is, and before I can answer, announces again with utter conviction "August 22! Remember his fun party that time?")

I wish I could come in person tomorrow, but alas this new fieldwork makes days off difficult. You will be in my thoughts, my heart, my soul all day.

If you are lacking distraction at any time, please call my cell and we'll discuss frivolities like Paris Hilton and Lindsay Lohan or anything else that's stupid and distracting.

Much love,
Lisa

Anonymous said...

Stephen, Mooki and Toby -
You are all in my thoughts and prayers. Wishing you great strength and courage tomorrow. Please take care and know that supportive wishes for a successful surgery and recovery are coming to you from Seattle too!
Warmly, Kelsey Aanerud

Carmen Nella said...

To Toby, Mooki, Stephen and Yoni,
My thoughts and prayers are with you all today, tomorrow and everyday that follows. I hope that tomorrow goes as smoothly as it possibly can. Know that I will be thinking of Toby on this eventful day with lots of tender thoughts, love, and good energy.
Please give him a hug for me whenever you can.
I know I can speak for Aileen and say that she too will be sending you constant thoughts of love and support tomorrow. We love and miss him greatly.
All my love,
Carmen

Anonymous said...

Dear Mooki,
I wanted to send you a note this evening to let you know that you and your family are in my thoughts and prayers. I am sending my best wishes for a successful surgery for Toby tomorrow and a speedy recovery, and much strength for you. We miss you at the office.
All my best,
Laurence Kotler-Berkowitz

Rachel said...

Mooki, Stephen, Toby, and Yoni -

I am positive it is no coincidence that tomorrow, the day of Toby's surgery, I begin my journey to Israel for the year. I have been thinking of you all every day and sending tons of positive, healthy, healing energy your way. As soon as I arrive in Jerusalem, I will get myself to the Western Wall as fast as possible and put a prayer for Toby's speedy recovery there. I will continue to do so as often as possible all year. Hopefully, there are many NYers on their way to MSKCC to donate blood and platelets - been trying to spread the word. You all are full of strength, courage, beauty, and love - I knew it when I first started reading this blog and meeting you, even only for those brief moments, solidified that in my mind. I will be thinking of you doubly tomorrow. May the source of strength bless you all with refuah sh'lemah - the renewal of body, the renewal of spirit.

Best wishes,
Rachel (of the cous cous and vegetables)

Anonymous said...

Dear Mooki, Stephen, Yoni and Toby,

Hope is a strange invention
A Patent of the Heart
In unremitting action
Yet never wearing out.
- Emily Dickinson

We send you all our hope, love and prayers.

Shonna, Ed, Rocky and Lucia

Anonymous said...

Dear Toby,

Thanks for spending time with me last week. I had a ball flying balsa wood airplanes, talking on walkie talkies, taking the tour of your new place (including the secret closet/elevator), strolling down to the Donut Shop, and singing a bit, too! I can't wait to see you again soon. Sending love and prayers,

Randy

Anonymous said...

Dearest Toby, Mooki, and Stephen,
You will be in my prayers tomorrow, and everyday there after. I join with so many others in holding you in our hearts.

Anonymous said...

Toby, Yoni, Mooki, Stephen,
Strength and love. You have it already in abundance. We send all we can add.

M & V at 241

Monique said...

We're praying for Toby. We are thinking of you, Mooki and Stephen, constantly. I'll be at the hospital tomorrow. I'm thinking also of Dr.Laquaglia who will be there making sure for all of us that Toby continues to return to the road of health.
Monique

dan b. said...

Sari and I are always thinking of all of you, and all of you and most especially Toby, are in our prayers. We pray for Toby's quick recovery and for him to continue to grow and thrive throughout a long and healthy life. We also pray that the entire family will be able to experience some sense of relief, physical, emotional and spiritual, in the very near future. Last but not least, we pray that your current suffering will be replaced with laughter and peace. While it is impossible to explain or to speak for God, we want you all to know that in a very real and concrete way you are surrounded by a community of people who care deeply for Toby and the entire family.
Dan B. and Sari F.

The Audrey news said...

Toby, Mooki and Stephen: We send you our love and prayers always and especially now. Rachel, Andy, Audrey, Lois and Minna.

Anonymous said...

Toby, Yoni, Mooki and Stephen,

Ruth and I will be sending our most intense positive energy to Toby during surgery tomorrow. Ruth's brother is a close friend of the Staples-Vangel family and a long-time volunteer at SK with Dr. Cheung. We followed Simon's journey through treatment, directed platelet donation and have some idea what the odyssey is like. I remember one anecdote about Simon during that time. As a big NASCAR fan, Simon's Make-a-Wish adventure was to announce at the start of a race: "Gentlemen...Start your engines!" Not long after that, he was waiting around in a gown for the doctors to begin a treatment, sighed, and said "Gentlemen...Start you procedure!!!" Everyone laughed. It's amazing how these little guys navigate the physical and emotional intensity. Like Toby's under-the-covers talks and hugs with the "animals", they also manage to somehow guide us adults in how to deal with it all: love. Our heartfelt wishes for an incredibly successful surgery with the smoothest recovery possible. -Kate & Ruth in South Midwood

Doris&Marc said...

Our hearts and prayers are with you all. A few hours ago I walked to St. James Cathedral to light a candle for Toby. I lit the highest candle I could find, I'm not sure those prayers are answered first, but I thought it couldn't hurt.
Heal quickly Toby!
God Bless you
Love Doris and Marc

dillydeanie said...

oh dear toby, mooki, and stephen! all of you are in my thoughts right now and especially tomorrow as toby undergoes surgery. i have sobbed reading your blog and can't even begin to imagine how you feel. if there is a god, she will be there tomorrow and see toby and all of you through this. keep the strength and love in your hearts.
much love,
kara

ellen said...

my thoughts and prayers will be with toby and with all of you today. may this surgery lead to a refuah shelema, kinehurah.

with much love, even though i don't know if we've ever met,

ellen sande

Anonymous said...

I wish Toby a strong refuah shlemah. I will be thinking of him and his amazing family today. You are all in my thoughts and prayers.

May he enjoy a speedy and full recovery.

Anonymous said...

dear toby and toby's family

I see light sourrounding you and protecting you with a cirle of love.
God bless you all.

a caring friend,

Laura said...

I pray that God will surround your family with love, faith, healing, and peace.

Anonymous said...

Toby, Mooki, Stephen and Yoni,

Mooki, you may not remember but we met a couple of years ago - both volunteering at the PSP picnic. My thoughts and prayers are with all of you. Especially today.

Amrita

Christy said...

My thoughts and prayers are with you and your family today. Your courage and perseverance are truly inspiring and I wish Toby the very best in his recovery in the days to come.

Christy

Anonymous said...

Loving, healing thoughts from another PSP family. Just another of the many people holding Toby today.

Dayna said...

God Bless you, I am praying for your family and will continue to do so. I haven't met you but I love you all; we are all of us in this world brothers and sisters no matter our religion or race or origins.

Anonymous said...

To all of Toby's loving family and friends - I don't know you at all, but I've been following your story on PSP and want you to know that I'm thinking about you - with tears in my eyes - and wishing you the very best today.
Sending you love - Michelle, mom to Oliver

Anonymous said...

You are all surrounded by so much love and so many prayers today, we are sure the angels are listening- all will be well.
Loving thoughts and prayers,
Bob Kehoe and Chris
Merci's cousin

Anonymous said...

Hi.
You don't know me, but I am thinking of you and your family during this difficult time. You are clearly a very special family and are surrounded by love.
I hope that Toby lives a long, healthy life and gets the chance to achieve all of his dreams.
Paula

Jexia said...

Best wishes, good luck, and healing vibes to you all.

Anonymous said...

We think of you often, and your incredible strength. You are an amazing family.

Anonymous said...

Dear Bloggers, Have you checked out Important Links: "T-Shirts for Toby?" Thanks, Blanche

Anonymous said...

Hi ya'll, i'm nettie ruth knotts, steve probably remembers me as nerf from cambridge academy. bernie emailed me for prayers . i pray everyday for ya'll, read your blog and cry every time. i survived skin cancer - melanoma - so i relish life and really feel for all of you now. i love you all and send long hugs to you. beleive it or not, but i see life differently since your ordeal. mine and the people around me may have problems but they seem so petty and we are so helpless but i do beleive in the Great Physician and we need positive thoughts that Toby will be completely healed!! n

Valerie said...

As I type this I would imagine the surgery is complete, and -- please God -- Toby is in recovery. As a mother of an infant and a child around Toby's age, you have been in my thoughts and prayers since I first heard of Toby's diagnosis. I hope to hear good news soon. The very best wishes to Toby and to you and your family.

Amy B. said...

I've been faithfully checking the blog for updates, wishing I lived closer to mskcc, and praying for Toby's continued strength and eventual victory over cancer.

It's late, now, on Tuesday night. I hope Toby is resting well and having happy dreams while his body recovers from this latest step in his cancer recovery.

Anonymous said...

Toby, Mooki, Stephen and Yoni,
You all have been in my thoughts and prayers all day today. I hope that by now that you have received some comforting news from the doctors and that you can all rest a little easier tonight. God bless all of you.
Love,
Bill O'Rourke

Lynn said...

Mooki, Stephen,
Isaac and my thoughts and hearts are with you. In just a couple of hours that afternoon you and Toby have become very dear to me. Thanks for giving me the blog address. I'm hoping for a successful surgery and uneventful recovery. And that you are all getting some rest.
Much love,
Lynn

Anonymous said...

Dear Mooki and Stephen,

Although I'm likely a distant memory as a former colleague of Stephen from Girvin, I wanted to you to know that our family and many of my colleagues at work have been praying very hard for little Tobey (here in the NW) - that God will guide the hands of the doctors to remove every piece of cancerous cell, that He will bring you some moments of peace and rest, that you will gain strength from an army of family and friends beside you and that Tobey's body will be completely healed.

Your friend,
Bonnie Jensen

Marcy said...

Mooki and Stephen,

I have been thinking about you and your family constantly since Toby's condition was first brought to my attention. Your strength is inspirational. Please continue to let us know what you, Toby and Yoni need so that we can make things a little bit easier for you.

Sending you our prayers,
Marcy

Anonymous said...

Mooki Stephen Yoram and Tobi,
Have just heard about this dreadful situation and read everything in your blog. Hopefully by today Saturday Tobi will on the next stage of his treatment and still holding up. It is amazing to read your words Yoram as a doctor, brother and uncle. Keep up your spirits and gain strength from this incredible little boy.
We are thinking of you and will be in touch with Yochi and Shabtai. Love Ziona and Zvi