Saturday, August 18, 2007

HopStop and hot spot

Toby has a new go-to website called HopStop.

It’s an amazing online city transit guide that allows him to enter a start address in one field and a destination address in another. He can narrow his results by clicking on different transportation modes (bus or subway) and walking/transfer preference (less street walking/more transfers is his favorite). Within seconds he receives detailed stop-by-stop directions, together with maps and a 360-degree photo of the street destination.

Toby works the site like a pro, adeptly choosing addresses and categories. We take vicarious trips to the Metropolitan Museum of Art and Yankee Stadium, the Central Park Zoo and imaginary destinations. Toby thrills to the familiar iconic representations of the different train and bus lines (orange dot for F, yellow for N, red for 1, 2 and 3), getting more excited as he realizes that he can change the trains by simply clicking on “re-route.” An observer might think that Toby is reading the difficult prompts and links, but he has actually memorized the page design and is able to identify the different words by their first few letters. He has even started to add his own transit ratings to the different train lines. Make sure to check out comments by “Mr. T” on the F and G lines if you have some time to spare.

On Friday, after a week of exhausting full-body scans, anesthesia, fasting and injections, Toby told Dr. Kushner about HopStop. And Dr. Kushner told us about the one remaining hot spot on Toby’s body. We received some very, very encouraging news: Toby’s bone scan was normal, as was his CT, with no indications of bone lesions or metastasis. We are still waiting on the results of the marrows. The MiBG, which is obtained after injecting Toby with a radioactive substance over 24 hours, showed only one hot spot, in his left shoulder. All the other involvement in the spine and collarbone and hips and jaw and legs and arms seems to have resolved. We are so happy to be sharing this news with you! This does not mean that the neuroblastoma is gone; far from it. The cancer is still in Toby’s body and we still have a very long way to go with treatment, but it turns out that the 4th and 5th cycles of chemo were more effective on bone than we imagined.

There are some problematic lymph nodes in Toby’s neck, so surgery has been scheduled for Monday, August 27th. We met again with Dr. LaQuaglia to discuss what will happen. He told us that this surgery will be shorter and less invasive than the previous one… there are nerves in the neck area that can affect the diaphragm and hand function, but Dr. L has not experienced problems before, and has done many such modified resections. Toby will most likely have soreness and discomfort/swelling, but this surgery needs to happen before he will be allowed to move to the next phase of treatment.

Surgery will be followed by a 6th (hopefully final) round of chemo. And then, God willing, we will be able to move on to 3F8 antibodies and radiation, possibly around the beginning of October. Radiation will occur to the primary tumor site in the abdomen, as well as the left shoulder and possibly the neck.

There has been a lot of bad news lately and we didn’t realize how dark that cloud felt until we received the good news on Friday afternoon. Toby’s original MiBG scan in April showed neuroblastoma from head to toe. There were countless hot spots. Now there is only one. And instead, Toby is playing with HopStop. For the first time in months, Stephen and I actually felt giddy, light, playful. My father let out a whoop of exultation when we passed on the news. I hope you all feel it too. Your prayers and thoughts are working.

Love, mooki and stephen

30 comments:

LindaSueBuhl said...

You have absolutely made my day! Praying so hard for Toby's healing and although I'm all too aware of the roller coaster of cancer treatment - this is definitely a great bit of news. What a guy Toby is - to put it in the language of this part of the world - he really did cowboy up to this treatment and deserves a tip of the hat. Well done, cowboy.
Bless y'all

Barbara said...

Like your dad, we have whooped it up here in Brooklyn! This is wonderful news, just amazing. Happy Birthday to you Toby, and I loved hearing that you and Stephen are giddy, makes us giddy too! And we will surely check out Toby Hopspots too.

xo, the langs

jennb said...

Woo hoo! Good news. Thanks so much for keeping us updated. Great for you all to have some light in which to renew yourselves as you go into surgery and this next phase of treatment.

Heaps of love and healing for you, Toby!

xoxo
Jennifer, Scott and Mo

gisele said...

Great news! I am so very happy for all of you.
Also, I am obsessed with hopstop too. tell toby, if he hasn't already, to click on "advanced options" when he is searching for directions. You can narrow your search by subway or bus line, or tell it to exclude certain trains or buses. have fun!

Anonymous said...

Praise God, Dr's. LaQuaglia & Kushner, the entire Oncology Staff at Sloan and Stephen and Mooki for this wonderful news. We also whooped and hollered after receiving yesterday's phone calls. Toby, please map a route for us from The Marriott at the Brooklyn Bridge to 19 Temple Court. We want to visit you sometime this Fall in your new home. Have a Happy 4th Birthday at the Beach with your cousins. Hugs and Kisses, Grandmother & Grandfather.

Thilde Fox said...

We are so happy about the good news, and HotSpot must be great fun for Toby. What a clever little boy!
Thilde.

Anonymous said...

I let out a big "YES!" and clapped my hands, and then cried when I read the update! What wonderful news for your family. I continue to pray and think about your family, your extended group of supporters all around the world. It is so uplifting to see the love and support from everyone. I am so thrilled with the news, and hope that this great news will give you comfort in the weeks ahead. Thank you for sharing your story so eloquently, Mooki and Stephen.

Anonymous said...

Yay for Toby! I am thrilled to read this update. The prayers will keep coming! :)

Anonymous said...

Great news! Go, Toby, go!

Anonymous said...

This great news calls for a Prayer of Thanksgiving: Psalm 30: 2-3,11-12:
I cried to you for help, Lord my God, and you healed me.
You brought me back from the world of the dead.
I was with those who go down to the depths below, but you restored my life.
You have changed my sadness into a joyful dance; you have taken off my clothes of mourning, and given me clothes of joy.
So I will not be silent: I will sing praise to you.
Lord, you are my God, I will give thanks to you forever. Blanche & John

Anonymous said...

Hip hip hooray!! A wonderful bit of news, a light! A light! Keep fighting the good fight, we'll be here the whole way.

Anonymous said...

I am thrilled and thankful and at a loss for words.

I know he isn't "out of the woods" yet, but it's nice to get a peek at what's beyond the trees.

Never having met Toby, I think his views of the F and G trains give excellent insight to the wonderful person he is and will grow up to be. It's lovely to see his happy, positive comments sparkling among all that griping and whining.

The world needs to hear a child's perspective much more often than it does.

Amy B.

Anonymous said...

Happiness, Gratitude & Peace!
Your family is thought of and prayed for every day. I am crying with joy as I type, and I have never had the pleasure to meet you all in person. It just doesn't matter. I love you & wish your family years of health & well being.
Blessings!

Maya said...

That's great news! Congratulations Toby, Mooki, Stephen, and Yoni.

Anonymous said...

enjoy the deep breath--there is plenty time for focus to come. thank you for the eloquent update, our family will continue to think of you often and send our very best wishes!
melanie

Anonymous said...

I once read something (cannot remember where) about a different way people can handle/deal with disease. Most of us instinctively "fight" the disease but this said that perhaps when we are ill we should talk to the disease, find out what it wants and then ask it to leave. I've been thinking about this lately reading about Toby. At first I thought "well that is way too advanced a concept for a child to understand." But then I thought that maybe children would actually be better at this than adults. Reading about Toby I think he might just udnerstand the idea of talking to his disease and asking it to leave. Does it sound crazy? Maybe. But maybe Toby could ask that one hotspot to go away, not be angry with it, but just ask it to leave. We're always told how powerful the brain is. Well maybe children's brains are the most powerful without all the negative filters - "that will never work" "that's a stupid idea". Anyway thought I'd just put it out there. I don't know any of you, well I guess it's me you don't know, but I breathed a big sigh of relief when I read this latest posting. You all desreve this peaceful moment. I'm hoping there are many more.

Meghana said...

Thank God! I'm so happy to hear this---Toby gives hope to us all--we will continue to pray that your days are filled with joyous news!

Anonymous said...

So happy to hear the good news. Lots of love and prayers coming to you all daily from California!

Anonymous said...

What great news! We're all so happy for you, guys.
Have a Happy Fourth Birthday tomorrow!
We miss you, Elizabeth, Shai and Maya (and Natalie).

Hindy said...

So happy to hear the latest news. Always thinking of you all.
Love, Hindy, Jason, Gila, and Avigayil

JoAnn said...

Toby, You are a life saver!!! We have to go to Washington DC this weekend, by train, and were trying to figure out how we were going to get to our son's apartment by subway. And then I read that you like Hopstop. I'd never heard of it. But one of the cities it includes is Washington. So, now you can take the train from Penn Station in New York to Union Station in Washington, and then figure out how to get to the Smithsonian Institute, or The White House (where the President lives). Or to my son's house so you can come to see his new twin babies! Thank you so much!!!
Love --

Anonymous said...

HAPPY BIRTHDAY, TOBY!!!

We wish joyful four year-old moments today and throughout the year, to our little friend whom we've never met but feel we're getting to know so well.

Bring on the balloons and marching bands! Three cheers for Toby!

Nancy W.

Anonymous said...

Happy Birthday to You!
Happy Birthday to You!
Haaaappppyyyyy Bbbbiiiirrrtttthhhdddaaaayyyy dear Toby (a smart, smart, Super-smart, wonderful, thoughtful, Hop-Stoppin', elevator-riding boy!)
Happy Birthday to You!

Enjoy your day, Toby! Lots of friends (some of whom you don't even know yet) are thinking of you and sending you love!

Love,

Dani :)

Anonymous said...

Happy Birthday Toby - from yet another person who you have never met and has never met you, but who thinks about you every day. As a former sloper and Beansprouter I feel like you are family. Enjoy your time off from procedures and surgeries. You and your family are strength and courage - we will keep on fighting with you.

Anonymous said...

I check everday to see how your are doing and I pray for you to have strength abundant joy in knowing that even though many of us have never met you we are connected. Happy August 22.
A California gal says good day

Mirm said...

PHEW! What JOYful news!! And what a fabulous Bday gift!! (Man, i wish i read this post days ago!) I feel so much lighter now- i can only imagine the sense of hope and relief YOU all must be feeling!!

Toby, happy happy birthday! Close your eyes, make a wish and blow those candles hard!

xx,
Mirm

Regina said...

"Look to this day! For it is Life, the very Life of Life." (Attributed to the Sanskrit Salutation of the Dawn)

"This is the day Eternity has made; we will rejoice and be glad in it." (Psalm 118:24)

Happy Truly-Fourth Birthday, Toby and family!

With much love and many blessings--one Eternal, Life-filled day at a time--and every day with much love and many blessings,

Regina

Jessica said...

Happy Birthday Toby (a day late)!

I'm SO thrilled to read your news. I just got back from 2.5 weeks away, and you have all been in my thoughts all the time. A few nights ago, I had a dream that Toby was totally healed and healthy - it was SO real, it was uncanny. Now I get back and read this - I think my dream was the night that you got the news. So the universe sent your news all the way to Basel Switzerland into my dreams.

Much much love to you all.

Jess

Anonymous said...

Hi Toby:

The California gal checking in to say hello to you and your family. I love to look at the website and just to see your lovely face and to let you know that I am rooting for you.....

Sari said...

It was such a relief to read good news! Mazel Tov. Good luck with the surgery tomorrow. You are all always in Dan and my thoughts.