Monday, April 30, 2007

Toby Update

Hello All,

At Mooki's request, today's update has a dual purpose to which I will add a third component. The first is to let you all know how Toby is doing and the second is a sort of pediatric oncology primer which will hopefully provide you with a better understanding of what Toby and family can expect over the course of Toby's treatment. In the last part of the update I will let you know how the various coordinators (Fran, Heather, Carie, and Rox) are working to make sure that everyone's good will and efforts are recorded and not overlooked. So here goes

1) Toby completed his first cycle of chemotherapy over the weekend. Aside from several episodes of vomiting, diarrhea, an upset stomach, and a fever, he did pretty well. In fact, today Toby is on his way home. This does not mean that "all is well" or that Toby is no longer sick, rather, that under certain stringent criteria, his treatment protocol (regimen) allows for him to be at home. This leads me to "purpose #2."

2) Pediatric oncology 101 - Toby's treatment protocol is lengthy and intense. Ideally its duration is approximately a year and three quarters, however, because of "bumps in the road" (that are almost guaranteed) such as infections that Toby might succumb to, "low counts" (see below), etc it is not uncommon for the treatment to extend longer than this. I alluded to the parts of Toby's treatment in my very first e-mail, but as a reminder these are intravenous chemotherapy (5-6 cycles, each separated by three weeks), surgery (after the 3rd chemotherapy cycle), immunotherapy (an antibody-mediated treatment that targets neuroblastoma cells, this is what Sloan specializes in) interspersed between all the other treatments and which lasts until day #586 of the protocol, harvest of Toby's stem cells (to be used only if necessary later in the treatment), radiation, oral chemotherapy, and another medication shown to be effective against neuroblastoma.

What Toby can expect following much of his treatment is that approximately 7-10 days after chemo and radiation his "counts" (white blood cells that fight infection, hemoglobin that delivers oxygen to the body's tissues, and platelets which clot the blood and prevent bleeding) will begin to drop. This means that he will be susceptible to infections and require periodic blood and platelet transfusions. When he is not admitted to the hospital for chemo or other treatment, he will have to come to the hospital for clinic visits. Initially, clinic visits occur daily. At the clinic Toby will have his blood drawn and after each chemo cycle, he will receive daily subcutaneous shots with something called G-CSF to boost his white blood cells. This can be quite painful. If at any time Toby gets a fever, he has to immediately come to the hospital for intravenous antibiotics and depending on his absolute neutrophil count or ANC (a subset of white blood cells responsible for fighting infection, especially bacterial infections) he may need to be readmitted to the hospital. Mooki asked that I be specific about actual numbers and while I am not familiar with Sloan's exact criteria I do know that most pediatric oncologists will admit a child for i.v. antibiotics with an ANC < 500 and will transfuse blood / platelets for a hemoglobin < 7 and platelets <20,000 respectively. The antibody treatment that Toby will receive, (called 3F8) is usually given as an outpatient (kids must come to the clinic once a day for several hours). The main side effect of 3F8 is pain.

While at home Mooki and Stephen will have to change Toby's broviac dressing three times a week (his central venous catheter - the i.v. through which he receives his medicines). In the early stages of treatment, this can be an anxiety inducing event for both kids and parents, not to mention at times quite discomforting for kids.

Toby's pain is much better than it was two weeks ago, but he is by no means pain-free. Once at home he will most likely still require oral (and possibly i.v.) pain medication. There are many "pain meds" that Toby can benefit from (codeine, morphine, not tylenol which can mask a fever or motrin that further decreases platelet counts) but they don't taste great and are associated with their own side effects (constipation especially).

One of the more important (and frustrating) aspects of Toby's current situation is the need to be hypervigilant concerning his risk of infection, which in kids whose immune system is compromised as a result of their treatment, can be life-threatening. What this means is that contact with anyone who is less than healthy is best avoided. Even what most people might consider inconsequential, like a common cold, runny nose or nagging cough can mean trouble for Toby. Because kids, even ones who are not sick, often exhibit many of these symptoms, Toby won't be able to spend time with his friends as readily as he would like.

I hope this helps you better appreciate what Toby, Mooki, Stephen, and Yoni are faced with. Now on to the final part of my update.

3) Thanks to the tireless work of Heather (Beansprouts), Fran (UJC), and Carie (PSJC) together with others (Rox from UJC) we have come up with a calendar. Each day, a different person has/will be on-call to help out in various ways. The calendar also elucidates who is providing meals (lunch/dinner), picking-up groceries, doing laundry, and being on "Yoni-call." Rather than contacting the various coordinators, each one of you can now access the calendar and include yourself to help out in whatever way you see fit at a time that is convenient for you. The calendar can be found by logging onto "google calendar" and entering as the login and toby2007 as the password.

Once again, I want to thank you all for your help and support. Please know that we are awed by your kindness and willingness to be there for us.



Sunday, April 29, 2007

Toby Update

on friday night and saturday morning i had a glimpse of my former life. a remarkable calm settled over toby about 6 hours after the last drops of chemo went into his system. his features softened, his eyes grew wide, the possibility of a smile played on his lips. and most of all i sensed relief washing over his small body. around 8 pm he said it was bedtime (good boy) and we somehow resurrected a bedtime ritual that has become difficult to maintain in the chaos of hospital life: toothbrush, no bath yet, but books and kisses goodnight. just as we were ready to turn off the light a magical vision appeared and the snack cart arrived. on friday nights volunteers at mskcc wheel around a 3-tiered trolley packed to the gils with candies, treats and all manner of sugary/salty loveliness. it felt like a dream as toby picked out popcorn, cheeze doodles, starburst, powdered donuts. he logically put them aside for "tomorrow" (good boy) and fell to sleep.

saturday morning we woke early and toby smiled and laughed as the sunlight came into our room. we played catch with a beanbag tiger, drank tea and then toby surprised me by stating that he wanted to go to the playroom. he moved easily from bed to floor and started walking down the hall as i struggled to keep up with him while pushing his "pole buddy"/massive iv pole. we spent almost 2 hours in the small play area, with toby making me eggs in the playkitchen, re-enacting a beansprouts day with the dollhouse and schoolbus, and playing a mean game of luckyduck.

we also received clearance from our docs to take him outside for an hour yesterday, the first time he has been outside since april 17. it was a beautiful day tinged with sadness. i sat in the wheelchair with toby on my lap and stephen pushed. the trees are still in bloom on the upper east side and we greedily took in the sights. toby marveled at the light breeze and told me suddenly that he ate some wind. he has lost 5 lbs, down to 39 lbs since we checked in.

at the playground i felt a shot of energy animate toby's body, so we stopped to check it out. and then we met up with our reality again. toby was tired, the swings and slide were off-limits, he valiantly attempted to jump through a hopscotch game and then leaned heavily against me crying that his stomach hurt. back to the chair to look at busses, taxes, numbers on street signs. and then back to the room where he was so tired that the rest of the day became a blur.

i need your help. we have been told that we need to find a new home for our 2 cats. they provide too much of a health risk for toby with his compromised immune system. this will be a very difficult transition, as both yoni and toby are very attached to bashevis and mushroom; they are a part of our family. but i need to find a home/fosterhome for the cats very soon. they are about 11 years old, both neutered males and they mainly eat and sleep. if anyone is willing to host them for about a year, please let me know.

i want to give a shout out to our incredible community of friends and family. yesterday i had some amazing home-cooked food for dinner. heather and jessica did shopping, coordinating and more, stephanie compiled a packet of support resources, sue oren came to visit, fran visited and delivered notebooks, david+betsy and grandmother+grandfather pannone sent gifts and love to toby. susan fox of parkslopeparents sent emails on our behalf. and saba and sabta unguru are with us always, sitting in the hospital room, cleaning the house, being there for yoni. i am scared of what will happen when you leave on may 5. my brother yoram spent the day at yoni's soccer game in prospect park yesterday before heading back to maryland. all of you are wonderful friends. we will need your continued strength and love as we navigate. thank you so much.

love, mooki

Friday, April 27, 2007

Hi All,

Toby completed his first cycle of chemo earlier today. His appetite is slowly improving too. For lunch, he had some cucumbers, applesauce, cherry ice, & a few fries.

Mooki & Stephen enjoyed lunch compliments of Heather & Jessica.

Toby did a great job getting his Broviac (central catheter) dressing changed. Mooki & Stephen are learning how to change the dressing so that once Toby's at home they'll be able to do it themselves.

Yoni came to visit today & got Toby to smile & even laugh - just what the Dr. ordered. Tomorrow, Mooki's hoping to get Toby cleaned-up, she's hoping for a shower, but will settle for a sponge bath.

One thing Mooki & Stephen are interested in is "Toby stimulation." If there's anyone out there who has a particular skill (balloon animals, etc) capaable of engaging a 3 year-old, please let us know.

That's all for know. Enjoy your weekend.


Sloan's visitation policy.

Visitors must be older than twelve years-old, sign-in at the main desk at the entrance to the pediatric oncology unit, and be "healthy" (i.e., no cold symptoms, cough, etc). Touching base with Mooki or Stephen beforehand is a good idea too.

Toby received some tremendous gifts from his friends at Beansprouts. His doctors asked us to let everyone know that while gifts are always a good thing, as he becomes more susceptible to infection it's probably not a good idea for him to receive stuffed animal like-toys or used toys.

I will send out an update on Toby later today.


More Toby (Lunches)

Good Morning Everyone,

Toby had a semi-rough night (vomiting, sweaty, and he spiked another fever). But Stephen, who stayed with him last night, tells us that Toby did ask for breakfast this morning and after yesterday's succesful encounter with food we're encouraged. The first cycle of chemo is complete today and until Toby's "counts" (his white blood cells, hemoglobin, and platelets) drop over the next 7-10 days, my guess is that he should feel better at least today and tomorrow.

As many of you know, our parents are here from Israel, helping out in any way they can. They're a source of both moral and practical support and along with all of your help, we're very thankful. My mom is most at home in the kitchen and until their departure on May 5th dinners are covered (although tonight and tomorrow Heather has arranged for dinners).

Where Mooki, Stephen, and Yoni could really benefit from everyone's gastronomic generosity is with dinners once our parents depart, but especially with lunches even starting now. As a result of the controlled chaos in the hospital, Mooki and Stephen often times either miss lunch altogether or end-up eating a not too pleasant hospital lunch around 16:00. If there is anyway to make sure that they can count on a lunches I know they would be truly appreciative.

Knowing that you all have Toby and his family in your thoughts and actions is an enormous relief for me, especially when I am back in Maryland.

Please know that without your help and kindness these horribly tragic times would be all the much harder.



Toby Update

hi everyone,

i don't know if it's the gray skies today or the fear of what happens over the next few days as we wait for toby's counts to inevitably fall, but i'm feeling anxious this morning.

toby finishes his first round of chemo at 1 pm today and we have been told that he will probably regain his appetite, have more energy and feel better for a few days. i want to embrace that information. but am having a hard time feeling positive.

i slept at home last night while stephen stayed at the hospital with toby. we take turns. coming back to brooklyn is definitely a recharge, but is emotionally very difficult for me. all of toby's things are around me but toby isn't here. his life in the hospital and for the next year or more will be so different from anything we have ever experienced. i mourn for my smiling, garrulous, active and inquisitive little boy. yesterday toby spent almost the entire day in bed, watching tv and it's something i feel we need to work on. he is not interested in leaving the sterile environment of his room to visit the playroom or go down the halls or talk to people. and i know i may be hoping for too much too soon, but it is still hard to bear when i look at my beautiful child and see his pain. how can we enrich his life when his favorite things are riding his tricycle on the ring road, going to the transit museum, baking cookies, riding the trains and busses, going to beansprouts?

many of you have sent toys and books. thank you so much; we are using them, although the last 2 days toby has really only found comfort in the tv. if you visit, i urge you to be upbeat, talk directly to toby, ask him questions about trains and elevators, tell him crazy things that happened to you on your way to work. if anyone has suggestions for how to make a kid's life in the hospital easier, please let me know.

on a positive note, toby had his first food in 11 days yesterday. stephen and i have been careful about not eating too much in the room, because chemo makes kids extremely sensitive to smells and we didn't want toby throwing up more than he has been, or associating food with feeling sick. but yesterday it was 3 pm and we realized we hadn't eaten, so we ordered some pasta and sauce and salad with grilled chicken. when it arrived we put it on the ledge out of sight and toby suddenly said "i want turkey, i'm hungry" (!?). we managed to put together a quick plate of grilled chicken, applesauce, some potato chips. amazingly he ate, didn't throw up, and was happy.

randy sang a song about a loquat tree on the roof yesterday and i will keep that in my mind as a beacon of warm, summery, sticky hope.

i'll have more info on donating blood for toby soon. love to you all,

Thursday, April 26, 2007

Hello Friends of Toby,

I am happy to be writing to you from Toby's room.

Toby is nearing the end of his first round of chemo & so far he's doing fairly well aside from a few expected "bumps in the road."

Even though the first round of chemo is almost over, for now, Toby's Drs might want him to remain at Sloan for the next couple of weeks.

Today, Randy was here & put on quite a show for Toby. He sang & played his guitar & was a big hit.

I want to extend our thanks to each of you for your ongoing support, meals, toys, laundry, shopping, etc...

I will be here for the next few days & will do my best to send regular updates.


My dear Mooki, Stephen, Yoni, Toby and family,

I don't know what to say other than I've been reading all the emails and to tell you that you are in my thoughts daily. While my heart is heavy, I am hopeful and send blessings, prayers, and positive energy for strength and support. My love to Toby, you, Stephen, Yoni, your parents, yoram.

amor y esperanza.


Wednesday, April 25, 2007

Toby Update

hi everyone,

just a quick update.

toby had his first blood transfusion on monday night after being admitted to sloan and his first day of chemo yesterday. he seemed to take the chemo pretty well, all considering. at a certain point, while throwing up and pooping and hiccuping (all at the same time) he suddenly said, "i want to speak to grandmother merci." go figure. he was very chatty through the treatment, telling visitor sonia hassin about elevators and trains and his friends chipmunk and wally worm. today we repeat.

he still hasn't eaten since last tuesday, but is drinking apple juice and milk. i hope that we can get a milkshake into him if the vomiting/nausea goes down. saba and sabta unguru have been coming each day. i hope that yoni will be able to visit this week and randy will be coming on thursday to play some music. we are so excited about that!! lisa kleinman came to visit yesterday and brought sushi and books. We really really really appreciate bag lunches and snacks. martha made awesome roasted pepper soup. rachel made a tremendous shabbat meal that we're still enjoying. Fran has brought us meals, visited and coordinated. rabbi carie was in the right place at the right time when she met the ambulance on monday. i'm sure i'm forgetting a lot but i want to publicly thank each and every one of you. contact with all of you is our greatest gift.

sloan is a good place; the docs and nurses are great. toby is in room 931 on the pediatric inpatient floor.

yoram, my brother will be back in nyc tomorrow and will be able to give you more updates. thanks for your prayers, your love and your actions.

love to all of you,
mooki and stephen

Monday, April 23, 2007

Financial Support

Contributions can be made in two ways:
  1. To make a tax-deductible donation to Toby via Park Slope Jewish Center, please make your check out to "Rabbi's Discretionary Fund" and put "Toby" in the memo. All funds raised will be put aside specifically for Toby and his family to pay or reimburse medically-related expenses. All contributions to this fund are tax-deductible.

    Rabbi Carie Carter
    Park Slope Jewish Center
    1320 8th Avenue
    Brooklyn, NY 11215
    Phone (718) 768-14532.

  2. A Benevolent Account has been established in Toby's name at Washington Mutual Bank. Donations go directly to Toby and will be used at the family's discretion without restrictions to pay expenses associated with the support and well-being of Toby. These funds will be used for un-insured medical expenses, housing, food and Toby's care. Donations to the benevolent account are not tax deductible.
Donations can be made via a secure wire transfer directly into Toby's account at Washington Mutual. Please contact Stephen Pannone at svpannone {at} for account reference numbers.
Additional wire transfer information and instructions can be found at:
Washington Mutual Bank
700 6th Ave.
New York, NY

International- 818.775.6420 (collect call) or
bank swift code- WMSBUS66
Beneficiary's Name- Toby Pannone

Dear Friends of Toby, Yoni, Mooki and Stephen,

As Toby's paternal Grandparents it is heartwarming to how many friends have responded to Yoram's requests made on behalf of our cherished family. Having met many of you at various family events in Brooklyn, we know first hand that you are all warm, friendly and loving friends, and your overwhelming response to Stephen and Mooki during this time is further proof of that warmth. Our hearts are overflowing with gratitude for your kindness and generosity. Jack White's story from St. Jude's Children's Hospital is a testimony to Hope.
Love, Merci & Bernie

Sunday, April 22, 2007

Toby Update

Hello All,

I am sending this update from Silver Spring, having just returned from NYC. I sent this update yesterday twice from my PDA, but unfortunately it didn't go through. I know you are all interested in hearing about Toby, so please accept my apologies for keeping you in the dark due to technical difficulties.

Before I bring you up to speed on Toby, Mooki and Stephen asked that I convey to each and everyone one of you how grateful they are for the immediacy of outreach and support. They feel as though they are truly part of a caring community.

On to Toby - the work-up is finally complete and as suspected he has advanced stage / high-risk neuroblastoma, involving the bone, bone marrow, and abdomen. Toby is still very tired and not all that interested in eating. He loves listening to his "Randy" CD, but otherwise, as you can imagine, hospital life is pretty boring. Toby has no interaction with other kids at all. Earlier today, his teachers from Beansprouts paid him a visit and Mooki tells me that for the first time in days, he was more like himself. He played and showed-off his hospital equipment to one and all - teachers, great job!! Which brings me to another suggestion; perhaps some of you Beansprouters out there, could videotape some of your classes to share with Toby. I know he would love to see his friends say "hi."

As it stands now, the plan is to transfer to Sloan-Kettering tomorrow and hopefully start chemotherapy shortly thereafter. Once Toby's settled-in, we'll send out the next e-mail with room# and information about visiting.

I have received a plethora of e-mails offering to help in various ways. Unfortunately, I have had to return to Maryland and coordinating matters is considerably more difficult from afar. Perhaps point people from each of Mooki and Stephen's respective "groups" could coordinate with each other to assure that meals, shopping, "Yoni-call," etc are taken care of in an expedious fashion. I have already volunteered the services of Fran from UJC (, Carie (, from PSJC, and Heather ( from Beansprouts. They have grabbed the bull by the horns and are steaming forward - thank you so much.

I will be returning to NYC on Thursday, but am always available by e-mail.

Each of you is a true friend or relative and we are very fortunate to be surrounded by such a committed and caring group.


Saturday, April 21, 2007

Request for Information

Please post the address of the organization supplying meals to Toby' s family on the blog, so we can all contribute. Thanks, Blanche & John

Update: Rabbi is being called. Info will be posted tomorrow (Monday).

Dear Toby, Yoni, Stephen and Mooki,

We want to write to let you know that we are thinking of you all, and wish we could have joined Yoram as he made this trip to be with you. You are all in our hearts and we hope to come to New York in a few weeks, to see you and help in any way we can. Love, Ayelet, Isabel and Gila.
toby i miss you i hope you feel betor soon i love you love isabel.

To further understand what Toby is experiencing

I was doing some Web browsing to educate myself (as I imagine all of us are doing this week). I found this story of hope on the St. Jude’s Children’s Hospital web site. The small boy had stage 4 neuroblastoma that had spread to his bone marrow. The tumor was the size of a football at the time of his diagnosis.

Here is a link to the video.


Friday, April 20, 2007

UJC Response

1. Lisa Kleinman has already reached out to Park Slope Jewish Center,
which has a meal-delivery program for people going through a crisis.
They'll be ready to get things going by early next week. We at UJC will
invite anyone who wants to, to financially support that program.

2. I will happily coordinate grocery shopping among the many UJC
Brooklynites and Jonathan Levine.

3. I will do the laundry as needed, with help from Dina Garfinkel.

4. Glenn Rosenkrantz' partner Patrick said that Sloan-Kettering has a
massage program for family members; and he, Patrick, is happy to work to
ensure that Mooki and Stephen get in the program as quickly as possible,
and if as quickly as possible isn't quick enough, to give them massages
himself -- Patrick is a licensed massage therapist.

5. Mirm has graciously agreed to take on the Tuesday night garbage
responsibilities. I'm sure she can enlist help in this area from her
Park Slope neighbors. Mirm and her husband Bryf can generally be on
call for Yoni, they live close by and Bryf is usually home in the

6. Rox has offered to set up a blog where people can post notes; and we
can ask people at bean sprouts to videotape messages of love and support
for Toby. Rox's husband Peter is an NYC high-school teacher and would
happily help Yoni with any school-related issues.

7. Jonathan Levine suggested that Mooki might want a blackberry to send
notes to friends/family without burden of good internet questions. I
have one already set up for her.

8. Kim Fish and Joe Berkofsky are in charge of toys. We'll ask people
to contribute money for a toy fund ... Toys / games that Toby can play
in bed. Kim and Joe will purchase 'em.

9. Many people have said they would spend the night with Yoni, or pick
him up to spend the night at their homes if need be. That includes: Anne
Spiwak, Jonathan Levine, Annette Powers ...

Please let Mooki and Stephen know that they can count on us for
anything. At anytime.

Fran Sommers

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

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

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.


Yoram Unguru