Tuesday, September 4, 2007

Bad day

Today is the first day of school in New York City. Instead of joining his friends at Beansprouts, Toby spent the day at Sloan where he endured even more than what he, Mooki, and Stephen have come to accept as "routine" - blood tests, transfusions, poking and prodding, various medications, long waits, and most of all uncertainty. Toby is not himself. His usual inquisitiveness and fascination with his surroundings have taken a back seat to a tired, exhausted, withdrawn, and wiped-out little boy. Toby has stayed in bed for most of the past five days, preferring to conserve what little energy he has. In the eight days since Toby had surgery on his neck he has been to Sloan as many times. This past Thursday he was there twice; after coming home in the evening after having spent the entire day at the hospital getting chemo and intravenous fluids, he made an unplanned visit to the emergency room until 03:00 a.m. because of a fever. Toby was back at Sloan six hours later for more chemo.

There has been no let-up in what has been an unusually chaotic week. In addition to surgery, chemo, ER visits, and foul moods Toby and family moved to their new place on Friday and are trying to adjust to their new home while literally spending all day and some nights at the hospital. Adding insult to injury, Toby's surgical site is causing him quite a bit of discomfort and pain. Mooki describes his skin as though it was "run over" and said that it looks like "road kill." The pathology report on the excised lymph nodes confirmed metastatic neuroblastoma. Fortunately, the bone marrow was clean of disease.

Today was especially hard because in addition to needing blood and platelet transfusions as well as pentamidine (a preventive monthly aerosolized medication to ward off fungal pneumonia), Toby also underwent several hours of a radiation simulation (a procedure to map the exact areas to be irradiated which requires that Toby be fairly still and cooperative). Toby also starts daily subcutaneous G-CSF injections (these hurt) today to boost his white blood cells so that he's not as susceptible to infection. As if that's not enough, an additional antibiotic was started because of the risk that the surgical site will become infected. This might not sound like that big of deal, but cajoling Toby into having to take one more medicine, every six hours for the next ten days is exceedingly difficult. Add to this the news about the lymph nodes and that today is the first day of school and one can appreciate just how hard and upsetting a day it has been for Mooki and Stephen.

Toby is scheduled to start radiation treatments to his shoulder on Monday. He will have two sessions a day for seven days, which will then be followed by restaging scans and bone marrows.

Many of you have reached out to Mooki and Stephen this past week. Mooki asked me to let you know that she and Stephen have read all of your e-mails and messages and that once they are a little more settled in and things are less hectic, she will update the blog herself.



Tracy & Bruce said...

Dear Toby,
I hope you get out of the hospital soon. I bet your friends miss you. I know how you feel because when I had fever I missed school for two days and I was so bored and I missed my friends so much. I have somthing I want to tell you about when I was in camp. I was going down a river in a canoe and I ran into some rocks going realy fast and I flipped and I was so scared. I hope you have a good time when you do go to school.
Bye, John Hill Your Cousin

Tracy & Bruce said...

Love Your Cousin Caroline;
Congragulations on turning four, thats a big deal in my book, along with turning ten, thirteen, sixteen, and eighteen. But I will give you congrats when those days come. I've been working on a picture for you, lets just say it has to do with elavators. Reading this blog has created many tears to build up behind my eyes, but they don't come forth. Lets just put it like this, your life is like an elavator, the doors on you are having some upgrades. But they are no where near ready to close.

Lynn said...

Mooki, Stephen, Yoni...
One day, one moment at a time.
Much love,
Lynn & Isaac

Anonymous said...

Wishing you strength and amnesia for when this is all said and done and the school days stretch out endlessly for inquisitive Toby. Wishing you peace and time to catch your breath and a time live effortlessly and without worry.

Anonymous said...

toby we are thinking of you all the time and sending you our love and healing vibes xox

Regina said...

Dear Mooki, Stephen, Yoni and Toby,

"This, too, shall pass" is bad news on the good days, but good news on the bad days. I can only echo Lynn's words above: "One day, one moment at a time."

I want you to know that I have been telling my weekly Thursday morning class of seniors about Toby, as we begin our learning each week with a check-in for those in need of healing. They are always eager for reports about "the little boy," and add their prayers to mine and all those whose lives you touch every day.

With much love and many blessings,


Anonymous said...

Toby and family -- There are so many people praying for you and sending love and good karma in your direction. Hang in!

Anonymous said...

I was thinking of Toby on the first day of school yesterday, and am grateful for Yoram's update. I wish it had been a better day--and week--for Toby. I hope he feels more comfortable soon, and that the chaos of moving and dealing with medical intensity will settle down.

Last week, I happened to be in the area of the hospital, and decided to bring a card to the ninth floor. But after one of the women at the desk informed me that Toby had been discharged that morning, she nodded knowingly and seemed to well up when I alluded to being one of the people getting to know Toby from this blog. She seemed to care and really understand, which was a nice feeling.

Heartfelt good wishes to all,
Nancy W.
(trying for the third time to post here--hope this goes through)

Anonymous said...

Dear Mooki, Steve, Yoni, Yoram et al, We are grieving with you for the suffering of our dear Toby, and we pray the Prayer of a Troubled Man, Psalm 102:1-6, 12-13.
Listen to my prayer, Lord,
and hear my cry for help!
Don't hide yourself from me
when I am in trouble!
Listen to me,
and answer me quickly when I call!
My life disappears like smoke;
my body burns like fire.
I am beaten down like dry grass;
I have lost my desire for food.
I groan aloud;
I am nothing but skin and bones.
I am like a wild bird in the desert,
like an owl in abandoned ruins.
But you, O Lord are king forever;
all generations will remember you.
You will rise and take pity on Zion;
the time has come to have mercy on her;
this is the right time!

We thank God for all those wonderful people who are caring for the caregivers: God bless the hands that are cooking the meals!
Please take care of yourselves and get the rest you need! With all our love, Blanche & John

Amy Beth said...

Thinking of you. Sending a cyber hug to all. If another "playdate" seems like a good idea feel free to drop me a line. Love, Amy Beth

Anonymous said...

I sat down by myself on a beautiful clear day on BI by State Beach where you all use to sit and build beautiful sand worlds. I imagined a healthy Toby sitting and working next to Stephen and Yoni with Mooki right behind. I tried so hard to will it to be real. I meditated on that spot for quite some time and hope to see it for real again.
With love,
Ilene, Josh and Jeremy

LindaSueBuhl said...

Bless you Toby - your spirit is sheltered in that fragile body - but you can recover your strength and allow all that inquisitive, quirky, intelligent and fun TOBY back out - praying that it is soon and that your hard times will be followed by sunshine and ice cream and smiles all around.

Anonymous said...

I know so much is going on in your body, Toby, but I thrilled at that little phrase, "the bone marrow was clean."

I know you have many other battles to win, but clean bone marrow is a big one in my uneducated opinion.

We're all praying for you and your family, and I know that you'll soon join your classmates. God bless you, baby.

Lisa said...

Hi Mooki, Stephen, Yoni and Toby,

We are thinking of you all the time.
Much love and Shanah Tova,
Lisa, David, Josh, Adam and Kayla

Itababy said...

Toby little man,
We think of you all the time, and even though we have not seen you a bit, you and your parents are always in our thoughts. You cleaned up your marrows! What an amazing boy you are! Eat well and sleep well so you will have the energy to clean up everything else.
Hope to see you really soon in your new house.

Ita & Co

Karen said...

Mooki, Stephen, Yoni, Toby,
All wishes of warmth, love and light each day--
Karen, Sherif, Yasmin

Anonymous said...

We will keep praying for you. Chrisshawna and ericka will be making pictures for you soon. And Michael and E'mon will keep you in their prayers at night. Love always your cousin sarah jo and christopher walker

JoAnn said...

Our Rosh HaShanah wish for you is that the move to Temple Street provides the respite and sanctuary you all need.
JoAnn and Stuart

Anonymous said...

Hello Toby:

California girl checking in to say "HI" and sending hugs to you and your family.

Anonymous said...

Great big cyber hugs to the entire family. Thinking of all of you.

Susan, Aniella and Ina Zaslavsky

Anonymous said...

As the weekend draws to a close, just wanted to send good thoughts and wishes your way. I keep checking for updates, and am thinking and hoping.

Nancy W.