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
family.

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
better).


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.

Sincerely,

Yoram Unguru

230 comments:

«Oldest   ‹Older   201 – 230 of 230
FriendofToby said...

hi melody,
3f8 treatments are difficult and painful. it has been nearly a year since toby had any antibodies, so my experience is not fresh, but i do remember it being very frightening at first. once you see how your child reacts it does become less overwhelming. the 3F8 nurses are wonderful and they stay in the room while the 3F8 is given. toby experienced the most pain for about 30-45 minutes after the infusion and we were armed with hotpacks, coldpacks, and of course morphine. the first few times we used oxygen as well, but as he got more familiar with the sensations he was able to continue breathing on his own. we found that dimming the lights and keeping our voices low helped a lot. we also got a lot of use from the special cd that was developed specifically for kids undergoing this treatment. children can get pain rescues every few minutes, but again, once we saw how toby was responding, we were able to give him morphine at the times he needed it most. there is an excellent chapter about coping with 3F8 in the neuroblastoma handbook here
http://www.nbhope.org/blogs/parents_handbook/archive/2008/06/21/51778.aspx
it is undeniably difficult to watch your child in pain, but we firmly believe that antibodies are an effective and important treatment in fighting NB. toby cleared for the first time with 3F8 and we look forward to him receiving more. please let me know if you have any more questions.
all the best to your family,
mooki

Anonymous said...

Toby looks absoultely incredible. He is truely a miracle child and his ability to spread hope through a simple picture is amazing. I wish you all the best wishes for the new year! Please send Toby all of my love!

Elysia-teacher at beansprouts

Onnew said...

Im Grace's friend, and I've been hoping for the best of Toby. Good luck, and hope it all goes well. :]

Anonymous said...

The Toby family: you are never far from my thoughts...like tonight... visiting your blog. Best wishes, hope and love to the entire family.

Vickie said...

Mooki,

You are definitely in line for a lanyard! In turquoise and other complimentary colors. I'll email you when it's ready.

VB

Unknown said...

Mooki and family,

You may remember me. My name is Althea (Thea). I worked at Beth Elohim for many years as an assistant supervisor in Youth Programs (after school and camp). Yoni was once my camper. You and I met again briefly at the Ronald McDonald House of NY where I now work. I feel as though I've known your family for so long. First with Yoni and now, through Toby, you and I know many of the same children from MSKCC. On Sunday April 19th, I will be participating in a St. Baldrick's event. I will have my head shaved in an effort to raise funds for pediatric cancer research. I wanted you to know that Toby will definitely be on my mind as I proudly welcome my bald head in solidarity with many incredibly brave children.

http://www.stbaldricks.org/participants/shavee_info.php?ParticipantKey=2009-354254

Faith, Hope and Love,
Thea

Anonymous said...

Tomorrow I take off for www.paddlingforacure.com and I will be dedicating one day of paddling to Toby!

Thanks for your efforts to raise awareness - I will always have Toby in my prayers!

Hugs,
Karen, mom to Kate Jacobs, NB survivor and one of the paddlers

heyrobertdavis said...

I came across your blog when I was looking up the zip code for my old address on Temple Court. (In the 80's/early 90's I lived on the top floor of #6.) Your posts are moving, and I wish you and Toby all the luck in the world. I have many fond memories of the Duck Pond and the park, and hope they bring you succor as they did for me.

Anonymous said...

CHOP researchers get a lead on neuroblastoma

seems that Children's Hospital in Philadelphia has made a genetic breakthrough on this disease. There is hope, for the full story go to www. CHOP.edu

Renee Lease said...

Dear Pannone Family,
My son, Brendan has been under the awesome care of your brother/brother-in-law/uncle, Dr. Yoram Unguru for Lymphoma, which he is now showing no signs of. He had mentioned he had a nephew with cancer. Last year, as I searched Dr. Unguru's name on the Internet, as well as the others who would be caring for my son, I happened upon your son's link attached to Dr. Unguru's name & I took a look. Tears fell as I read the heartfelt entires that only a parent can write about their sick child. Toby, as well as all of you, are in my prayers. I know you're thankful for having a wonderful, knowledgeable doctor in the family, and thankful for every day that your little guy doesn't have to endure treatments & testing. It sounds like you have built a tight 'community' with those going through the same trials, and that's so important as you're going through something that not everyone could possibly understand.
Praying for you,
Renee Lease - Maryland

Florence said...

Shana tova to all of you -- sounds like a wonderful start to what should be a wonderful year. I'm so glad every time I check in and there's nothing too new: no news really can be good news! Still wishing you all the best... (and some day I should return all your keys to you!)
Florence

Anonymous said...

Mooki,
This is Jenn - Frankie's mom from BNS. I just want you to know how glorious it is for us to be a part of Toby's world. He is such a pleasure to be around and everytime I see you guys, I wanna give him a huge hug for being so strong and full of life. His way of looking at everything - and his big glorious smile, lightens my day every time I see him. Although Frankie's not in Toby's class this year, please keep us abreast of what's happening with me.

Jenn Ladines

Unknown said...

Dear Pannone Family,
On January 15th, 2009 we met your precious Yoram. Our son, Robby Griesmyer, age 14 was diagnosed with Ewings Sarcoma and Dr. Unguru met us in the ER at Sinai, treated us with such compassion and hope. We had no idea how much we would grow to love him as I'm sure you can imagine. He has been everything to us that any family going through childhood cancer could ask for. He did mention your family almost immediately and told us what he suggested in order to line up the support we would need - wow, what a whirlwind. We have been taken care of like Kings & Queens. Mookie, your brother is amazing,& so much fun. Yes, you can have fun during cancer treatment & we made the best of it. I'm sure nothing would surprise you as to what he is capable of. If he hasn't shared any of the pictures you may want to check out Robby's CarePage:
www.carepages.com/carepagesrobbygriesmyer. Yoram will be the one with the mask on, a syringe full of water and an airhorn blowing in his ear, hope he has recovered. Robby is doing well, clear scans 3 months after treatment. We are in God's hands and so thankful that Yoram has been there too. Much love, Karen, Robert & Robby Griesmyer

Anonymous said...

I found your blog by accident. I am amazed at the daily blessings you continue to enjoy when it could be the most difficult. I send your family, continued hope, blessings, joy and love. My granddaughter, just turned 4 in February. She was diagnosed last May, after barely turning 3. She was diagnosed at stage 4. She has had chemo, surgeries, more chemo, radiation, and today, March 16th is beginning immunotherapy. She is always smiling, never complains, although she is not crazy about the pinchies (injections) the most. I am outraged as well, while this disease is considered an "orphan" disease for most drug companies, children continue to die every day. Our little Meredith is so brave and actually happy, how can these children not inspire those in power to want to help? Wishing your family most importantly a lot more time together.
Love Joni

joni said...

I found your blog by accident. I am amazed at the daily blessings you continue to enjoy when it could be the most difficult. I send your family, continued hope, blessings, joy and love. My granddaughter, just turned 4 in February. She was diagnosed last May, after barely turning 3. She was diagnosed at stage 4. She has had chemo, surgeries, more chemo, radiation, and today, March 16th is beginning immunotherapy. She is always smiling, never complains, although she is not crazy about the pinchies (injections) the most. I am outraged as well, while this disease is considered an "orphan" disease for most drug companies, children continue to die every day. Our little Meredith is so brave and actually happy, how can these children not inspire those in power to want to help? Wishing your family most importantly a lot more time together.
Love Joni

Karen Griesmyer said...

God sent us to Sinai 1/15/09 to be told by a healer, Dr. Unguru that our son had cancer. Yesterday, 3/16/10 we visited with Dr. Unguru and only had hugs, smiles and good news to share. Robby made the JV baseball team, he was proudly wearing his uniform hat and jacket. Robby is 6'3", 15 years old and plays pitcher and 1st base. All Dr. Unguru could do was smile and stare at Robby. He did add that he would "love to be 6'3" I think he's done growing in height but not in how passionate he is about taking care of his patients. We pray to God, thanking Him for continuing to heal your precious son, Amen

Melissa Gray said...

Hi there,

I can SO relate to what you wrote. My son Tyler is currently 'stable' & has been for 3 years. I too searched for other families, was DEVASTATED to read their loss, DEVASTATED to read of relapse & DISHEARTENED to find that there were very few SURVIVOR stories. I have continued Tyler's journal to give HOPE to other families. It's hard to have to re-live things when you want to forget but SO important to give HOPE to others. I haven't read your site yet but I will & I now take your family & Toby in as part of my family, part of that NB family that is so big & sometimes so painful but so important to be a part of for each other.
I send you my love & my thoughts in your journey with Toby & the HOPE that you too will have a good story. If you have not yet come across it, read http://www.jaysjourney.org/
My site is www.4tylerjames.com
Good luck with everything. Love Melissa, Australia

neuroblastoma /Cody's Nana said...

Hi I am Codys NaNa Pat. Cody J Wood. He was diagnosed with stage 4neuroblastoma 4wks ago. He is just 18months old. I have been reading blogs and have my own now. Never thought I would be writing about such a thing. It some how is theraputic. I think it keeps me from wanting to scream. God bless you all. A fellow sufferer.

Julie Baber said...

My volunteer organization, The Nicholas Conor Institute (www.thenicholasconorinstitute.org), is participating in the CHASE Community Giving Campaign and you can help us raise money to fight pediatric cancer with your vote.

The mission is to personalize cancer treatment and predictive tests by using each child’s unique genetic profile. It’s a big step forward in cancer treatment for children!The money raised will create full gene analyses on teens whose cancers are not reacting to standard treatment. The results from this study will give their oncologists information that could determine new treatment for these kids. AND the data could help treat other kids with the same disease.

You can help just by voting!!
On July 13th, CHASE will announce 200 winning charities. Today the only thing that stands between TNCI and $20K is 200 votes. Your vote is worth a $100 plus a chance of saving a child's life.

Thank you for taking 1 minute to help this great cause and for forwarding this to all your friends on Facebook and on LinkedIn!

HOW TO VOTE :
1. Go to https://thenicholasconorinstitute.org/Home.html2. Click: CHASE Community Giving button. This will direct you to the Facebook CHASE Community Giving Campaign page for TNCI. Note: Use Explorer or FireFox (Safari is having trouble)
3. Voting is a two-step process. FIRST click to 'like' the CHASE application. SECOND: vote for The Nicholas Conor Institute by clicking the VOTE NOW button.
4. Please post on your Facebook wall, Tweet it, share on Linkedin or Invite a Facebook friend to vote. We need to spread the word quickly.

Julie Baber
http://web.me.com/juliebaber

Julie Baber said...

My volunteer organization, The Nicholas Conor Institute (www.thenicholasconorinstitute.org), is participating in the CHASE Community Giving Campaign and you can help us raise money to fight pediatric cancer with your vote.

The mission is to personalize cancer treatment and predictive tests by using each child’s unique genetic profile. It’s a big step forward in cancer treatment for children!The money raised will create full gene analyses on teens whose cancers are not reacting to standard treatment. The results from this study will give their oncologists information that could determine new treatment for these kids. AND the data could help treat other kids with the same disease.

You can help just by voting!!
On July 13th, CHASE will announce 200 winning charities. Today the only thing that stands between TNCI and $20K is 200 votes. Your vote is worth a $100 plus a chance of saving a child's life.

Thank you for taking 1 minute to help this great cause and for forwarding this to all your friends on Facebook and on LinkedIn!

HOW TO VOTE :
1. Go to https://thenicholasconorinstitute.org/Home.html2. Click: CHASE Community Giving button. This will direct you to the Facebook CHASE Community Giving Campaign page for TNCI. Note: Use Explorer or FireFox (Safari is having trouble)
3. Voting is a two-step process. FIRST click to 'like' the CHASE application. SECOND: vote for The Nicholas Conor Institute by clicking the VOTE NOW button.
4. Please post on your Facebook wall, Tweet it, share on Linkedin or Invite a Facebook friend to vote. We need to spread the word quickly.

Julie Baber
http://web.me.com/juliebaber

Anonymous said...

Hi, Toby and family! You don't know me, but I live in Chapel Hill. When Toby's grandmother held her garage sale benefit for Toby a couple of months ago, I purchased the exercise bike and a large black bag. Yesterday, I was getting ready to use the bag when a remote car key fell out. It's for a Ford; I drive a Nissan. None of my friends is missing a car key. Could it perhaps belong to you or one of your relatives?

I apologize for bothering you with this message, but I'd hate for y'all to be missing the key when I have it right here. Please let me know if you think it could be yours or your family's. You can reach me at bethaniehu (at) yahoo (dot) com. Thanks very much, and best wishes to all of you (and especially Toby)! ~ Bethany

MamaBear said...

Another family is beginning to fight this monster of Nueroblastoma. In Kansas a 8 month old baby named Daxter is a month into his fight. He is stage IV. Please Pray for Daxter. WWW.Prayingfordaxter.blogspot.com
So thankful to the Lord to find a baby who has survived! Praise the Lord!

In Him,
Kristin

Nancy said...

Our son, Alex, is in 5th grade at BNS. He told us about Toby a couple of years ago after Toby and your older son, Yoni, talked to the kids at a 'town meeting' about Toby's experience with cancer. He was very moved, and we talked together about it, and about Alex's Grandma who died around that time of a malignant brain tumor.

This year our family has been dealing with my breast cancer and treatment, at Sloan Kettering. I'm just a couple of months out of chemo. Chemo sucked, and the thought of dying of cancer is terrifying- though I am doing well. This has been very hard and scary for our family, especially for Alex.

It has always been awful to think of a child having cancer, and enduring treatment- or so sadly, facing death so young- and now all the more since I have my own experience of this beast. And I guess I had wanted to hide from it, and now I cannot.

I have great respect and awe and thanks for your openness and honesty in writing this blog. I wish Toby and all the children suffering from this scourge- health and a cure.

Alex and I will be joining you and the BNS team on the Kids Walk for Kids with Cancer next week. It means a lot to both of us. I hope we may meet along the way.

Nancy

Lynn Bernstein said...

Mookie, What news have you? How is Toby?

ilovetaekwondogrl said...

I met your son Toby at the Brooklyn New School when I interned as a requirement for my education class i Kingsborough. Toby was a delight to talk to always had a smile on his face. Since leaving I keep thinking of Toby and how he's doing.
Lisa
brooklynny20@gmail.com

maria lazarini said...

Hi guys, Maria Lazariini here(BNS retired). I am trying to donate a couple of dollars to your fundraising but can't find how I did it the last time. Help! Love you guys.
Iam on facebook but still learning how to use it. Hope to hear from you.Love Maria L

Unknown said...

I just found your blog. I am so happy that Toby is cancer free. I am a neuroblastoma mom. We lost our fight 3 years ago, but I am constantly searching for families who are winning theirs. I desperately want to beat this disease. I would love to hear more about your journey. Keep on fighting!

Cameron VSJ said...

Congratulations on Toby's great results! I was hoping to ask you a quick question, do you think you could email me when you get a moment? Thanks so much.

Cameron
cameronvsj@gmail. com

Susan T. said...

I am wondering how Tobe is and how the family is doing. It has been so long since the last update. I think of you all frequently.

Unknown said...

I am so happy for your family that Toby was one who got to live, as Elijah has been, and thought there may be some benefit or support from two families connecting since it is such a rarity for kids to grow "old" with a Neuroblastoma diagnosis. I would like to introduce you to my friends Elijah, Dawn & Britt Talley. Elijah is 14 now and was diagnosed with Stage IV Neuroblastoma at age 4. He is one of Dr. Maris' patients at CHOP and we are all from Little Rock, Arkansas. Sometimes in order to learn more about Neuroblastoma I search the web which is how I found your blog about Toby. Your writing and commentary on trials is moving and poignant. If you do connect with the Talley family, my name is Michelle Teague.

http://www.caringbridge.org/visit/elijahtalley/journal/view/id/55bae9fea689b48973e537f3?utm_source=JEN&utm_medium=email&utm_campaign=JEN+email&utm_content=visitsite

I wish I had better words to express emotional support for kids and their families having faced, or facing this disease, and its treatment. The ten years that Elijah has survived (and there will be more years for him) have been full of experimentation, most recently T-Cell therapy.

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