Sunday, November 4, 2007

Endurance.

Today is the NYC Marathon. Three of Toby’s docs will be running and we plan to cheer for them as they approach mile 7 in Park Slope. Toby stayed up late yesterday, painting hand-lettered signs with each of their names.

I’m a huge marathon fan despite a complete lack of athleticism. I don’t quite understand the willingness to endure such physical punishment, but I love the enormity of the event. I am completely in awe of the strength and stamina required to run 26 miles. And I’m inspired and amazed by the runners.

Toby has been running the marathon each day, for more than 6 months. In that amount of time, he has had more chemo than most adult cancer patients (waaaaayyy more than Lance Armstrong), he has undergone 2 life-threatening surgeries, 14 rounds of radiation, countless transfusions, daily painful injections, monthly radioactive scans, disgusting medicines, and a complete upheaval of his life. He does not go to school. He has hearing loss. He grinds his teeth during sleep. He tires easily. And every day is a battle.

By his 4th birthday Toby had learned how to swallow pills, how to lay perfectly still for 90 minute full-body scans, how to restrain the urge to vomit until mom or dad locates the basin, how to don a mask and gloves during neutropenia, how to best position his leg when receiving the burning injections of “G,” how to walk on his toes when his heels are numb from the neuropathic effects of chemo, how to request that the anesthesiologist inject propyphol slowly before a procedure, how to still find joy and laughter and beauty even when restrained to an IV pole, with constant nausea, diarrhea and vomiting.

Toby runs the marathon with a remarkable group of children who suffer for months and years at a time. They are the faces behind the statistics and their stories tear my heart out again and again. Many of them have died, leaving behind aching families and pain that will never go away. I wish that Congress or Oprah or the drug companies would find these kids inspiring. It is simply unbelievable that only 5% of the total National Cancer Institute budget is allocated for pediatric cancer research and development. And to put it in even greater perspective, ALL of cancer research funding is equivalent to what is spent in Iraq in just a few days. Children are dying, and the world turns away.

Tomorrow the New York Times will devote pages and pages to the marathon. I usually love to read this kind of news, but I don’t think I’ll have a chance.

Tomorrow is the day we start 3f8 antibody therapy. It will be the most painful experience in Toby’s cancer marathon to date. The 3f8 rooms are where the screams come from, screams so prolonged and painful that it hard for an observer not to break into tears. The pain is so intense that no amount of pain medication can effectively block it. Toby will most likely be given heavy narcotics (3 times more powerful than morphine), but everyone has warned us to expect a very, very difficult day. And we will repeat 3f8s on Tuesday, Wednesday, Thursday and Friday.

Toby will endure, as he has until now. Please keep him and all the other children battling cancer in your thoughts.

love, mooki and stephen

32 comments:

Anonymous said...

Dear Mooki and Stephen, we hope you all get some moments of peace and sleep in the hard days ahead.
Thilde and family.

Regina said...

Dear Mooki and Stephen,

I think it's clear to all of us that you, Yoni and the rest of your family have been running this medical marathon with Toby as well. I remain in awe of YOUR strength and stamina, and am inspired and amazed by your loving courage.

I hope that you will continue to draw hope and strength from the encouragement and support of those of us on the sidelines, as well as from each other.

With love and many blessings for the difficult week ahead,

Regina

Anonymous said...

I am so sorry that all of you are going through this.

Anonymous said...

Our family went down to 4th avenue early Sunday morning to cheer on the marathoners who use handcycles and those with physical challenges. It is inspiring to see the wells of strength that spring forth from adversity. Your family is pouring forth rivers and oceans. You are long distance runners, with stamina that few of us can even fathom. May this with pass quickly, may you see the finish line as soon as you begin. We are all along the way cheering, whooping, hollering, I hope you can hear us. Good luck and G*d's speed.

Anonymous said...

Dear Ones, These messages tear at our heart strings! We pray for you every day. A parishioner, who is a cancer survivor, at Mass this morning asked about Toby. They are so used to hearing his name spoken aloud. God be with you this week.
Love, Bkanche & John

Anonymous said...

We are all praying for Toby. Chrisshawna loves to wear her t shirt with Toby's picture on it. It is heart breaking that such a little child has to go through so much at such a young age. Love always,
sarah jo, chris, michael, e'mon, chrisshanwna and ericka

Anonymous said...

i wish i could be there to help you get through the screams, but i am thinking of you now.

melanie

Anonymous said...

What can we do to help Tobe and your family get through 3f8 ???

Name it.

--Susan, Aniella and Ina Zaslavsky

gisele said...

mooki and family,
i hope the pain of the day has passed, and like all distance runners, toby is able to celebrate accomplishing his first milestone. Tomorrow, he will check off the second, and again, until he wins the race.
I would have loved to see toby's signs yesterday, i'm sure he provided a huge jolt of motivation to his doctors as they ran past him on the way to the finish line.
xoxo,
gisele

Anonymous said...

I am just reading this for the first time on Monday at 5:30, and I hope Toby and all of you have gotten through the day comfortably. This is such a powerful piece of writing that I hope the NY Times, or Oprah, or some appropriate medium WILL take notice and gives this the attention it so deserves.

Nancy W.

Valerie said...

Even though I have never met Toby or his family, you are in my thoughts every day. If only prayer and good thoughts would ease his pain this week...

Be strong. As if you had any other choice.

Anonymous said...

I also went down to 4th Avenue with my wife and two year-old daughter who cheered on the physically challenged runners by shaking a cow bell and screaming "Yay Runners!" When we got home, my wife and I were talking of Toby and my daughter said, "I'd like to say to Toby, 'Yay, Toby!'" And Stephen and Mooki and Yoni, I might add.

Anonymous said...

you all are on our minds--and we are praying, praying, praying.

Anonymous said...

May God hold you in the palm of his hand, tonight, and always.
Blessings & much love.

Donna said...

I just read your post and I can't stop crying.

I don't know what else to say because everything I think of doesn't sum up how much my heart is breaking for all of you.

I will be thinking of all of you and hoping for the best.

LindaSueBuhl said...

Our hearts are aching and that pushes us to more prayer. Every tear is a diamond for your spiritual crown - you are wonderful parents and Toby is obviously an exceptional young man.

noogs said...

We think about you everyday and hope Toby gets through this week. He sounds like such a strong and brave little boy.

Anonymous said...

After giving this some thought, if you don't mind..... I will forward this to Oprah's producers today.

--Susan Zaslavsky (and Aniella & Ina)

Anonymous said...

Done.

--Susan

Anonymous said...

Even though we have never met, I think of Toby and your family everyday. I am praying that you are all able to get through this week with as little pain as possible. I am in awe of Toby's courage.

Emily

Anonymous said...

I also wrote to Oprah and directed them to go to Toby's blogspot - I included the stats that Mookie wrote of and told them that they shoudl be inspired by Toby and his family. Hopefully if they hear from more than one of us they just might pick up on this issue.

Heres to the drugs doing what they need to do - we are so sorry that Toby and all the other children afflicted with this disease have to endure so much.

Another family that has never met you personally but feels like we know you.

Anonymous said...

2:37:

Excellent. There are about 20 producers on staff it seems and I only e-mailed 8 of them, so the more the merrier.

I also sent the link and a note to a major publication with a circulation of a gazillion. :0) I'll report back when I hear something.

--Susan

Tracy & Bruce said...

I think with the writers' strike this is excellent timing... plenty of time for the producers to research both Toby's (and incredible family) story and Neuroblastoma. Our 16 y/o has a beautifully written submission to send in via the website and direct email/ producers before Tuesday.
Holding you all in our hearts constantly.

LindaSueBuhl said...

Joined in writing to the Oprah show about doing something significant to bring attention to the state of funding (or underfunding) of research into childhood cancers. Continuing to pray for Toby and all of you.

JoAnn said...

Another week, another challange. Just remeber that there is a world of people praying for all of you, thinking of you, sending good thoughts your way.
With love -

Anonymous said...

I'm also writing to Oprah. If enough people write, I think they will take notice.

Anonymous said...

Mookie and Stephen,

I look at Toby's beautiful face on this site and I try to channel my very strongest prayers to him and to you.

Your boy has the most incredible, indelible, lasting, memorable smile.

I don't know you, but I think of you all the time.

L

Anonymous said...

It's been almost two weeks since your last post. I pray all is going as well as possible and Toby remains his strong and beautiful self.

Anonymous said...

You are all in my prayers, especially Toby. I have just learned of your situation and wonder if you have had an opportunity to consult with St. Jude's Childrens Hospital? I first raised funds for the hospital many years ago and continue to be amazed by their research and treatment of children with cancer. You are, of course, in a good place, but St. Jude's focus is on children battling cancer and sometimes that can make a difference. May God Bless you all and keep you in his care.

Sincerely,
Denise from Nassau Presbyterian Church

Anonymous said...

Denise:

Yes, St. Jude is an *excellent* hospital; however Sloan-Kettering, I believe, is the pioneer and possibly sole provider of the 3F8 treatment Toby is receiving at this time. 3F8 has proven to be very effective in fighting neuroblastoma. Rest assured that Toby couldn't be in better medical hands at this time.

Anonymous said...

Thinking of Toby and hoping you are all ok.

Anonymous said...

I echo one of the posts above, it's been exactly two weeks since your last post and you don't know me personally but I'm so worried and hope and pray your silence means that you are using all your energy to fight this 3F8 phase of Toby's treatment and that you all are coping. I'm not religious but pray for Toby and constantly "visit" this blog to check in with my thoughts and prayers. You are beautiful - your souls shine through in your posts on this blog - and we are thinking of you. Two weeks ago you posted about the NY marathon - the runners of that day are done running but you continue. Many warm thoughts of strength and further endurance being sent your way. - J