Tuesday, December 18, 2007

How Toby Is

A few weeks ago, in between Toby’s morning and afternoon radiation treatments, we went to the Sony Wonder Lab in midtown Manhattan. Toby’s eyelashes were just starting to grow in, giving his eyes the slightest dark rim, as if they were lined with makeup. For the first time in many, many months there was definition and softness to his face; he looked pretty and felt pretty good. No nausea yet from the radiation to his neck and abdomen. No pain from injections or infusions. No hives. A little tiredness perhaps, but nothing we couldn’t handle.

We waited for a long time with the tourists and day-trippers, finally entering the sardine-packed elevator. Toby wanted to push the buttons, and stood near the door. A little girl, maybe 6 years old, stared at Toby and asked her father in Hebrew, “Why is that boy bald?” The dad glanced in our direction, assumed that we weren’t members of the tribe, and confidently told his daughter, “He has lice, and his parents had to shave his head.”

I found myself in a tight spot. My first thought was to laugh in relief. Lice? Are you kidding me? AS IF. But then the shame and self-righteousness poured down in equal measure. Does Toby look like he has lice? Did I remember to wash behind his ears? Oh God, am I a slacker mom? Whoa. Just who is this idiot anyways? And why is he pontificating to his greasy-haired child about Toby’s lice? Who made him king of enlightened Semitic reasoning? I opened my mouth to set him straight.

And then I remembered that Toby is bald because he has cancer. Cancer so awful that it may kill him. Cancer so aggressive that it has required near-constant vigilance for the last 8 months. Listen honey, he’s bald because an hour ago he was lying naked on his back with chin strapped and restrained, receiving direct high-energy beams of radiation to his neck. And he’s going back for another round at 3:00. We tell him stories through the intercom and he lies perfectly still as the machines rotate around his body. He is a very sick boy. I wanted to say all this, but didn’t. And then I found myself wishing that he had lice.

*****

Since that day Toby finished 14 rounds of radiation to his neck and 24 to his abdomen. We’ve gone through a second cycle of 3F8 antibody treatments, which was similar to the first. I’ve returned to work part-time. And Toby has spent 9 hours at Beansprouts (school!) over the course of 5 days. He’s not bald anymore.

We’ve gone to Powerplay (an indoor playspace) twice, visited wonderful friends in Princeton, been to Fairway (hallelujah!), eaten at Uncle Moe’s, looked at the dinosaurs at the Museum of Natural History and made latkes. Over the last 2 weeks we’ve heard that more than 50 of you baked and packaged cookies, to help fund new treatments for children fighting neuroblastoma. We are so blessed to have a bit of normalcy and such wonderful friends.

This Friday Toby will have an MiBG scan and bone marrows, the first evaluations of whether 3F8 treatments have been effective in chipping away at his disease load. The days leading up to scans are incredibly difficult for us. There’s the very welcome possibility that Toby has less neuroblastoma in his body. There’s an equal chance that the disease is stable or has progressed. We have no way of knowing. And so every day is a battle against fear, uncertainty and what-ifs. Toby complained of eye pain yesterday: It could be nothing or it could be neuroblastoma. He’s been tired and not himself since Saturday… again, it could be delayed effects of radiation, low hemoglobin or cancer.

So when people ask, “How is Toby?” it’s a hard question to answer.

We’re holding on to hope. And we’re glad you’re still checking in.

much love,
mooki + stephen

Monday, December 10, 2007

cookies on cnn

an incredible clip about the cookie effort and neuroblastoma here. many of you know about liam from earlier posts... he was diagnosed 2 months before toby. although his battle with cancer has been very different from toby's, he and his parents, gretchen + larry, have been an inspiration to us during the last eight months. gretchen is the force behind cookies for kids cancer. please make sure to order your cookies before december 14.

an update on toby very soon!

love, mooki + stephen

Thursday, December 6, 2007

Acts of Kindness

During college I fell in love with William Wordsworth, especially his beautiful, meditative poem "Tintern Abbey." Page 155 of my Norton Anthology is filled with an 18-year-old's passionate marginalia: triple underlines, exclamation points, arrows and stars. The marks are tipped in with such excitement that they bleed through to the next pages.

I thought of Tintern Abbey yesterday, when I heard how many people have made their way to Crown Heights, Brooklyn, to bake and package cookies for hours and hours at a time. I had no idea. You are all giving Toby and hundreds of other children a chance at life. We cannot even begin to thank you.

Be assured that your acts of kindness and love will be remembered.

But oft, in lonely rooms, and 'mid the din
Of towns and cities, I have owed to them
In hours of weariness, sensations sweet,
Felt in the blood, and felt along the heart;
And passing even into my purer mind,
With tranquil restoration:--feelings too
Of unremembered pleasure: such, perhaps,
As have no slight or trivial influence
On that best portion of a good man's life,
His little, nameless, unremembered, acts
Of kindness and of love.


love, mooki + stephen

Saturday, November 24, 2007

Cookies for Cancer



"It will be a great day when our schools (and pediatric cancer research) get all the money they need and the air force has to hold a bake sale to buy a bomber." -adapted from Women’s International League for Peace and Freedom

Next week neuroblastoma parents, together with more than 200 volunteers, will begin baking 96,000 gourmet cookies in an attempt to fund new treatments for our children. You might find it hard to believe that no government or private foundation funds are available for this. You probably find it odd that parents need to sell cookies to save their children's lives. The reality is that the government classifies neuroblastoma as an "orphan" disease, one with fewer than 200,000 affected individuals. Diseases with a relatively small patient population are at a significant disadvantage in the competition for resources. So even though there are promising treatments in the pipeline at Memorial Sloan-Kettering, they can't go into the clinical trial phase without funds. And that's why we need you to buy cookies.

The delicious cookies come from renowned cookbook author Sally Sampson's recipes. The ingredients are all natural and every order will be beautifully gift-boxed. Best of all, 95% of the proceeds will go directly to research at MSKCC since almost everything related to the project has been generously donated, from ingredients to kitchen facilities and cold storage.

We know that many of you are about to begin the tireless search for the perfect holiday gift and we hope that you'll take advantage of this opportunity to give a gift that not only tastes good but feels good.

You can purchase online at www.cookiesforkidscancer.org

Thank you from the bottom of our hearts.

love, mooki + stephen

Wednesday, November 21, 2007

This is what I'm thankful for

*stephen
*an amazing community of family, friends and strangers who have come together to feed, strengthen and care for us over the last seven months
*my brother, yoram, whose gentle, knowledgeable and loving presence continues to make a daily difference in our lives. he listens, guides, and explains with total dedication and love. he faithfully treks to brooklyn, leaving behind his own family and job to be with us + wash our dishes + parent yoni + run interference with doctors. we call him at all hours of the day and night. we badger him with constant, panicky questions. when i can't put two words together, he writes phenomenal posts for the blog. we can't imagine going through this nightmare without him and we don't think he will ever know what a huge support he is.
*beansprouts
*our older son yoni, who has been through so much, and is still a straight-A student, a loving brother and fantastic human being
*park slope parents
*the incredible adults who make playdates with toby, bringing music, stories, activities and normalcy
*the dedicated and loving team of nurses, doctors and staff at mskcc
*my parents yochi + shabtai, uncle greg, merci, aunt anna, cousin catherine and aunt betsy, who have all come to stay with us under incredibly difficult circumstances
*psjc
*the photographers who orchestrated the art of giving fundraiser
*the countless generous souls who have donated blood, platelets and money
*a great, understanding workplace
*temple court and prospect park
*the parents of children fighting neuroblastoma, who have inspired me with their courage and hope

and most of all i am so thankful for toby... that he is alive, and that i have the opportunity to watch, learn and laugh with him. toby my sweet boy, you make my life beautiful.

love,
mommy








Sunday, November 18, 2007

Pain and Memory

When Toby was eight days old, my father held him during the ritual of circumcision. We thought it would be a great honor, and my father readily agreed, but after the ceremony he told me that he was terribly shaken by the experience. I don’t remember the actual cut (I wasn’t in the room), but I do remember Toby’s awful, innocent screams, which propelled me into the kitchen, where I gave him my pinky finger to suck, an abysmal but temporary comfort. Stephen was crying in the bathroom and my father was completely white. A few minutes later we regained some equilibrium. Our family and friends wrapped us in embraces, I nursed Toby to sleep, and we felt the magnitude of welcoming our new baby into history and community.

But my father was still disturbed. Later that evening we spoke about pain, and whether it was possible that Toby would remember the trauma associated with circumcision. My father felt strongly that there had to be some remnant of pain hardwired into Toby’s synapses. The experience was too intense to simply slip away.

Circumcision seems like a walk in the park compared to last week. And after holding my writhing child for five days of 3F8 treatments, I wonder about pain and hope it’s not permanently etched into Toby’s pathways.

3F8 is a mouse derived monoclonal antibody that is injected into the bloodstream where it finds neuroblastoma cells, attaches to them and then signals the patient’s own white blood cells to kill the neuroblastoma. The white cells are boosted into “killer” cells through daily injections of GM-CSF. With time, as Toby’s own immune system recovers from chemo and becomes stronger, the 3F8 treatments may help his body learn to fight tumors on its own. The aim is to give repeated 3F8s for up to two years, on a cycle of one week on, two to three weeks off.

The main side effect of 3F8 is pain because it also attaches to a marker on nerve cells. And the pain is excruciating. I can barely describe it. And that’s the real reason why I haven’t been able to write in two weeks. All I wanted to do by Friday was crawl into a dark, quiet place, and not relive the experience by putting pain into words.

Before the infusion started Toby was premedicated to ward off fever, pain, and possible allergic reactions. He was unaware of what was about to happen, and lay on the bed watching tv. After about 15 minutes he started fidgeting and twitching, as if he couldn’t find a comfortable position. And in another 5 minutes the full force of pain bore down on him. The room was filled with medical personnel, who monitored Toby’s reactions to the infusion. Oxygen was started, a nebulizer was used to open his airways and pain “rescues” were pushed into his bloodstream every 5-7 minutes. His pulse climbed to 187. Over the course of 50 minutes, we went through boxes of hot and cold packs which we rubbed on different parts of Toby’s body where the pain was localized, mainly in the abdomen. We tried to soothe him, to hold him, to dim the lights and follow his lead, but he truly was alone in the land of pain. And then, exhausted, covered with hives and drenched with sweat, Toby fell asleep.

By day 3 we began to find a coping rhythm, although the pain was even more difficult to observe. Toby used fewer rescues and we crawled into the bed with him for the duration of the infusion. He needed to grip onto my shoulder during the worst waves. On day 4, he began keeping track of his blood oxygen numbers and refused oxygen and the nebulizer. I have no idea how it was possible for Toby to do this… imagine being in the throes of transitional labor and telling the obstetrician that you would like to discuss apgar scores. Toby also stopped screaming and requested that we not talk to him. He seemed to know what would happen and focused all his energy on internalizing the pain and taking deep breaths. Incredible, really. Other NB parents told us that the week would be very difficult, but get easier each day. I actually found the reverse to be true. The pain was shocking on day 1, but knowing that it would return each day was almost more than I could bear. Also, contrary to what the doctors told us, the heavy narcotics did not have an amnesiac effect; on days 3 and 4 Toby wanted to know exactly when the infusion would start, and he ordered us to get the hot packs ready for his tummy, the cold packs for his head.

The afternoons and evenings were a complete blur. Toby was completely knocked out yet restless. He couldn’t pee or walk, much less eat or drink. The soles of his feet and his entire groin area were intensely sensitive and he found it difficult to stand. And then morning would come, we would head to the hospital, give him the GM shot, watch as he ate a big breakfast, and wait for the pain to start.

By Sunday Toby had recovered enough to make a trip with me to the Staten Island Children’s museum and the Prospect Park Zoo. We had a fabulous day. And on Monday, he was permanently tattooed in 7 spots, to help guide the radiologists during radiation treatment. We are now in the middle of 24 rounds of radiation to the neck and abdomen.

I’m sorry it has taken me so long to post. Living with neuroblastoma is so singular, isolating and overwhelming, that I feel like my words don’t even come close to describing what is really going on in Toby’s life. We can’t thank you enough for checking in on us, sending supportive emails, delivering food, visiting if you have a chance.

----

The painful reality of neuroblastoma is that more than 50% of children will relapse, and the survival rate for children diagnosed with high risk disease like Toby is in the neighborhood of 20%. We have joined with other NB parents to act against these terrible odds. The Band of Parents, together with loads of volunteers, is making and selling gourmet cookies to raise money for research, development and treatment at Memorial Sloan-Kettering. The delicious recipes are from renowned cookbook author Sally Sampson’s recently released cookbook, Cookies. The cookies are $30 a dozen and almost all of the proceeds will go directly to research at MSKCC. You can purchase online at www.cookiesforkidscancer.org. We hope you’ll buy lots of these delicious cookies and ensure that Toby and all of the other children fighting neuroblastoma receive the future treatment options they so desperately need.

Thank you so much.

Love, mooki + stephen

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

Friday, November 2, 2007

Finally, 3F8

Toby will be starting 3f8 antibody treatment on monday. After reviewing the scans with radiology, Dr. Kushner feels that they haven't changed since august and he is eager to forge ahead with antibodies and radiation. Toby still has disease in the humerus and 1 or 2 vertebral bodies, but Kushner feels that it is probably marrow, not boney. The MRI of the liver was clean. All four bone marrow biopsies are negative, as are the aspirates. While an area in the mid-abdomen did light up, the NB team feels that it is due to post-operative changes and not tumor re-growth. We had a very, very scary week and while there is still ambiguity, we will tolerate it. I will update again with the details, but wanted everyone to know that we are ok.
love, mooki and stephen

Tuesday, October 30, 2007

Limbo

Living with cancer is a roller coaster, both real and imagined. Just as Toby, Mooki, and Stephen were attempting to have a few quasi-normal days, something that Toby desperately deserves, the neuroblastoma crept back to the fore (as if it had ever gone away) reestablishing itself and making sure to squash any chance at normalcy. This is the reality of living cancer.

Life has been hellish since Thursday, when Mooki and Stephen received the call to return to Sloan because one of the images on the MIBG scan “lit up” where it hadn’t done so previously, signifying the potential of disease progression. Five days, and two additional scans later, it’s still not clear if the neuroblastoma has spread or if the “lighting up” is nothing more than an inconsequential “artifact.” Mooki and Stephen’s every moment has been filled with uncertainty, fear, doubt, anger, and loneliness. They have been left to assume the worst and like so many times until now, their resolve and hope has been repeatedly trampled upon. This imagined torment of cancer is all too real and just as devastating as living with its physical manifestations.

Hopefully, by tomorrow it will become more apparent what the significance of the abnormality seen on the MIBG scan is. It is extremely important to know exactly where and how much neuroblastoma remains in order to know what the next best treatment for Toby is.

The life that Mooki and Stephen once knew is a thing of the past. Each morning they wake up and make sure that Toby is comfortable. They give him his medicines, check his “tubies,” feed him breakfast and then make the trip to the hospital where they spend their day while Toby endures an assortment of poking, prodding, and testing. They return home late in the evening where they briefly catch up with Yoni, feed Toby, give him medicine, get things ready for the next day, pay bills, and collapse into bed. Often sleep comes only after long periods of thinking “what if” and then the cycle resumes the next morning.

In my prior posts I have reached out to you for a variety of reasons. Today, I would like to do so once again. Just like Toby, Mooki and Stephen also need some semblance of normalcy in their lives, if only as a pleasant distraction. Instead of eating the wonderfully prepared meals in the familiar (and at times depressing) environs of their home, they need to eat out with and at friends’ homes. Instead of spending countless hours alone at Sloan, they need some company to help pass the time. This would be a huge deal for Mooki, Stephen, Yoni, and Toby and while they may not be able to or may not feel like accepting each and every invite, please make the offer.

Yoram

Thursday, October 25, 2007

From: "stephen pannone"
To: "Mercedes Pannone"
Sent: Thursday, October 25, 2007 8:40 PM

> Mom-
>
> Sorry to be out of touch, we're just trying to get
> through this week of scans. So far we have had the CT
> done (wed.) Today was Echo and MIBG. After the scans
> today we had a few hours to get out. We went to the
> City of New York Museum. In the cab on the way home we
> had a call from the hospital (5:30 pm), they wanted us
> to come back in for a rescan because they saw
> something suspicious. We got back there but the
> scanner was having technical problems so we are now
> home without clarity and with the knowledge that
> something else may be there. We don't know anymore and
> just have to get through the night knowing that we may
> have more bad news in the morning when we
> are back at Sloan.
>
> stephen

Monday, October 22, 2007

Home

Toby’s white count rose to 1.6 during the night, enough to spring us out of the hospital after a 12-day stay. He is ecstatic to be back home.

This is what he did from 4:00-9:00 today:
took his trike out for a ride,
had an orange kiss ice at uncle luigi’s,
visited ernie at the pizzeria,
left a note for his friend zoe,
checked out the new halloween decorations on the block,
built a fort out of pillows,
jumped on the bed,
rolled his schoolbus all over the mattresses,
sat on the steps and grooved to some music,
sent silly messages to christopher from the window,
had a few spoons of corn, 1 cucumber spear, 10 tortilla chips dipped in tomato sauce, a bowl of vanilla ice cream, and a cup of grape juice,
kissed yoni’s knees,
took a bath,
tried on his halloween ladybug costume 4 times.

It has been the BEST afternoon.

love, mooki + stephen

Friday, October 19, 2007

A Quick Update

We are still in the hospital, waiting for Toby's counts to come up. He is doing well, watching a lot of tv, starting to eat and making countless laps around the inpatient ward each day. Stephen and I are taking turns sleeping at the hospital. Scans are scheduled to begin next Wednesday. I'll post another update soon.
love, mooki

Thursday, October 11, 2007

Abbreviations

Toby is back in the hospital.

Chemotherapy's impact on the bone marrow and other organs typically reaches its maximum effect 7-10 days after a cycle. It is at this point when blood counts reach their lowest and when fever and the risk for infection is greatest. Toby is now 10 days out from cycle #7 of chemo. His white blood cells are low, i.e., neutropenia (N) and almost on cue, he spiked a fever (F) last night, guaranteeing an automatic admission for I.V. antibiotics for what doctors call "F/N."

Toby also has pretty significant nausea (N) vomiting (V) and diarrhea (D). One of the chemo agents he got, irinotecan, is known to cause diarrhea, but because Toby has so few white blood cells, which normally ward off infection, the diarrhea and vomiting might be a sign of a bad infection of the bowel wall commonly seen in post-chemo neutropenic patients called typhlitis. For this reason, instead of the usual one or two antibiotics for F/N, Toby is on three antibiotics just in case he does have typhlitis. A mainstay of treatment for typhlitis is bowel rest, with minimal to no food. Toby's gut actually sounds like it's "working" so while his doctors aren't allowing him to eat anything (he doesn't have much of an appetite according to Mooki) they are letting him have a clear liquid diet (CLD). Because Toby isn't in the mood to eat he has to get nutrition somehow else. The two options are either nutrition via a tube that is snaked through the nose into the stomach (an NG tube) or nutrition directly through the vein. Because of the N/V/D, feeding Toby via an NG tube isn't the best option, meaning that unless he makes a quick recovery, he'll need I.V. nutrition, known as total parenteral nutrition (TPN).

As you can imagine, Toby's pretty wiped out and lacking in energy. He received a blood transfusion today and hopefully that will help a little, but the constant V/D is extremely draining and fatiguing. The retching associated with vomiting is painful and the frequent diarrhea is irritating both to Toby's body and to his spirit.

Toby will be at Sloan until his blood counts recover, he is fever-free, without an active infection, and able to eat and drink on his own. He is scheduled for another round of re-evaluation scans (CTs, MIBG, MRI, blood tests, and bone marrows) in a couple of weeks to see how the neuroblastoma responded to this most recent round of chemo. Let's hope that Toby has a speedy and uneventful recovery, that he makes it home before he has to endure the next barrage of testing, and that he doesn't encounter anymore abbreviations.

Yoram

Friday, October 5, 2007

Fundraiser October 11th in Soho

A wonderful friend has organized a photography event, which will take place on Thursday, October 11 from 6:30-8:30 at 110 Greene Street in New York City. A group of 7 very talented, emerging photographers have generously donated their photographs. There will be light food and drink and an opportunity to view and purchase beautiful artwork. Children are welcome. All proceeds from the door and sales will benefit neuroblastoma research and development at Memorial Sloan-Kettering through the Children's Neuroblastoma Cancer Foundation.

Funding for research and treatment of pediatric cancers is insufficient to meet the needs of children with neuroblastoma. The therapies these children endure are long and painful, and there are limited options to save their lives. However, there are promising therapies in the pipeline that could soon be manufactured for testing in clinical trials. Money raised at the photography fundraiser will be of direct help to Toby and many, many others in the near future.

We are immensely grateful to Luba Proger, Adi Lavy, Ignacio Ayestaran, Jason Guerrero, Leonid Khanin, Maria Aiolova, Tina Roth Eisenberg, Evans Real Estate, Evelina Ioselev, Patricia Tallungan, dishes, Nuvo, and all those who have contributed their time to make this event a reality.

For more information, please visit www.orangefog.com/art_projects.html

Friday, September 28, 2007

7 is not a lucky number

As recently as 2004, standard first line treatment for kids with neuroblastoma consisted of seven cycles of chemotherapy. As some of you may recall from my prior posts, chemotherapy is by no means a smart bomb; that is, in addition to targeting neuroblastoma cells, chemo also damages healthy cells throughout the body. It is for this reason that now whenever he watches T.V. or listens to music, Toby has to crank up the volume and ask (always politely) those around him to speak quietly. This is also the reason why Toby painfully struggles with horrible constipation; why he has headaches, lightheadedness, and a resting heart rate that most of us reach only with vigorous exercise; why he easily bleeds and bruises, often with no preceding trauma or other obvious trigger; and why routine coughs and colds most of us don't give much thought to are so potentially dangerous for Toby. These are the immediate consequences of chemotherapy. They are serious, frustrating, and life-altering. However, they pale in comparison to the possible long-term side effects like, infertility, deafness, heart and kidney failure, nerve damage, hormonal imbalance, secondary cancer, and even death. The last two are particularly ironic. Because of these significant "toxicities," doctors and scientists are continually trying to come up with more effective and less toxic treatments. In the case of neuroblastoma, such an approach was achieved by reducing the number of initial rounds of chemo from seven to five and by adding things like antibody treatment. Unfortunately, five cycles of chemo is not enough to rid all kids of their neuroblastoma. In these cases the first option often means resorting to a sixth or even seventh cycle of more chemo - this is what Toby has to look forward to.

After five cycles of chemo, Toby still had evidence of neuroblastoma in various parts of his body so he had a sixth cycle, incorporating one drug he had yet to be exposed to. Following the sixth cycle and radiation to his arm, Toby had re-evaluation scans; as you know from Mooki's most recent post, the news is not good. Toby still has disease in his bone marrow, as well as in his femur (the long bone in the leg). What this means is that Toby's disease is classified as primary refractory disease. What is the reason for the refractoriness? I'm not sure there's a single answer, but one answer Toby's doctor suggested relates to the significant amount of disease that Toby had when he was initially diagnosed, which is taking extra cycles to clear. I believe that the actual biology of the neuroblastoma is at play here as well. Whatever the reasons, Toby is now scheduled for a seventh round of chemo to start this Monday. This time he will be given three drugs he has never received, with the idea that the neuroblastoma cells might be (more) susceptible to this cocktail. Because most kids with neuroblastoma do not require more than five cycles, there is not much evidence as to the efficacy of these three agents, carboplatin/temozolomide/irinotecan. However, the toxicities of these drugs is known.

Carboplatin is a cousin of cisplatin, a drug which Toby received during cycles 3 and 5 and which can lead to an assortment of side effects including, hearing loss, kidney damage, altered nerve sensation, and low blood counts. Temozolomide also causes low blood counts, as well as nausea, vomiting, bruising (because it drops the platelet count), tingling in the hands and feet, and insomnia. Finally, there is irinotecan, best known for the severe diarrhea it causes. In addition, it can cause low blood counts, hair loss (so much for Toby's regenerating follicles) headache, sweating, and mouth sores.

Mooki and Stephen are anxiously awaiting the next phase of treatment which follows chemo - 3F8 antibody treatment. 3F8 acts in a different way than chemo. Chemo destroys cells, often by targeting a part of the cell responsible for cell replication or by preventing cells from correcting parts of the cell that are damaged. 3F8 on the other hand, is a biologic drug, it works in a different way by targeting certain cell receptors found only on neuroblastoma cells. For 3F8 to work most effectively neuroblastoma has to be completely or almost completely eradicated. This is the reason for an "unlucky" seventh cycle of chemo.

Mooki and Stephen desperately want to move on to 3F8 and its potential for making things right. They have mixed feelings about more chemo and are especially wary of the likely side effects, but like so many times until now they signed the consent forms agreeing to move on in the hope that this cycle will allow them to reach that goal.

Hoping is hard. I hope that my job as a pediatric hematologist/oncologist doesn't get in the way of the more important job of being Toby's uncle and Mooki's brother. I hope that I can think like a humanist and not like a doctor. I hope that Toby won't need hearing aides and I hope for hope.

Yoram

Wednesday, September 26, 2007

Intimacy and Uncertainty

I prayed my heart out on Yom Kippur.

Since Toby got sick, I’ve had an ambivalent relationship with God. On good days, I understand that God didn’t send this disease. On bad days I rail against God’s silence. And most days I feel a tremendous loss in my connection to God.

I haven’t been able to pray on my own. And so on Yom Kippur, I went to synagogue, in search of my community, in search of warmth, in search of a space where I could have a talk with God. I chanted the melodies and let my soul be lifted by the beauty of ritual. I felt myself enter the lines of text, winding through the letterforms like the paths of a most beautiful garden.

It was during the amidah that I felt myself open up to the possibility of something. So I covered my face with the prayerbook and let God know how I felt. When I came up for air, Yoni remarked that I had tattooed the book with my tears.

What happened next surprised me.

As is customary, the ark remains open during the entire concluding service of ne’ilah. But at PSJC there’s a wonderful opportunity for families, couples and individuals to ascend the bimah during this time, to share a moment alone/together in front of the open ark and Torah scrolls. For more than an hour, I watched as the ark became a shaftway to God. Again and again, parents wrapped themselves around their children, whispering their wishes and prayers and dreams. Couples embraced, hands reached out to touch the scrolls. It was pure theater and I watched hungrily, with joy and sadness. Personal became public and intimacy crowded out every other feeling in my heart.

I desperately wanted to be one of the families hugging each other in the sweep of narrative, history and hope.

_________

In many ways uncertainty has crowded out intimacy in our lives. We wake up each day, unsure of what will happen by evening. And this morning, for the first time in a long while, I can unequivocally say that Stephen and I feel hopeless.

Yesterday we met with Dr. Kushner, to discuss the much-anticipated next phase of treatment: 3f8 antibodies. After 6 cycles of high-dose, highly toxic chemotherapy and after 14 rounds of radiation to Toby’s shoulder, we are ready to move on. Toby still has refractory disease, but some children do go into antibody therapy without being completely “clean.”

Instead we heard more bad news. Although most of the scans came back stable, one of the bone marrow aspirates showed neuroblastoma cells. This is very, very unusual and Kushner is uncomfortable giving Toby antibodies at this stage. He would like to do a 7th cycle of chemotherapy, in a final, super-aggressive, off-the-charts attempt to kill the cells in the marrow. He admitted that MSK doesn’t do this often. He admitted that Toby is highly unusual. And he admitted that he doesn’t have much data to show whether this will be an effective course of treatment.

We still have a lot of unanswered questions and are unsure what our next steps will be. My brother will most likely post some of the medical details over the next few days.

Intimacy is what makes me feel human, but it is uncertainty that sits on all our shoulders. Yoni worries, asks a million questions, demands the whole truth with no sugar coating. Stephen and I open a bottle of wine at 5 pm, walk to the corner together and stand in the middle of the sidewalk as the tears fall. Toby senses the vibrations of uncertainty and cannot sleep. Last night I lay in bed with him after he told me that he was nervous and scared. I reminded him to think of good things: Randy and the whoopee cushion, the mango smoothies at Lonelyville, harvesting a potato in Prospect Park. But he cried and said, “the bad things are too big, Mommy.” Over and over I tell him that everything will be alright, We curl up together and see the moon through the blinds. It’s a full moon, full with experience and life and quiet. Toby eventually fell asleep.

And today we blink into the wide gaping hole of a new day, heavy in our hearts, craving intimacy for our family.

We ask again for your support, presence and love. You have done so much for us already that I hesitate to ask again. I will never be able to write all the thank-yous for the beautiful, thoughtful gifts, the delicious meals, the blood, the money, the letters and visits. Please forgive me. And know that through you, we can experience life as it should be.

Love, mooki and stephen

Friday, September 14, 2007

“So, what were the atrocities today?”

Yoni has a knack for asking perfect questions. On Monday night, his pointed question really said it all.

We arrived at the hospital at 9 am and waited in a long, snaking line for a blood draw in the IV room. Mondays are especially chaotic at MSK and every waiting area was overflowing. There were no available beds or seats, but we managed to find Toby’s favorite, tiny footstool and wedged it near a closet outside the finger-stick room. Toby calls this footstool “blue cubie,” and they have become fast friends. Stephen and I watched as Toby and blue cubie discovered the wall-mounted pneumatic tube that transports blood from the 9th floor to the stat lab below. It was elevator and subway ride all rolled into one and Toby was transfixed. We were grateful for the diversion, and though it didn’t quite qualify as school, at least there were numbers and engineering involved.

Many hours and countless visits to the fish tank later, the readings came back: once again Toby needed both blood and platelet transfusions. Last week Toby won the award for lowest platelet count ever recorded on the pediatric floor: his platelets were 3 (yes, that’s 3) over four consecutive days (normal is 180-400). We’ve grown accustomed to seeing the chicken-soup-colored bag attached to Toby’s line, but never with such regularity.

So it’s noon, we’re already exhausted from keeping Toby occupied and are just finding out that we’ll be at clinic for at least another 4 hours for pre-meds, transfusions and monitoring.

Problem #1: Toby’s first radiation session is scheduled for 1:45 in a completely different part of the hospital. Platelets take about 45 minutes to transfuse; blood can take up to 3 hours. Our nurse suggests we start with platelets, unhook Toby from the IV, go to radiation, and then return for the blood transfusion.

Still no available beds, so we drape a sheet over the waiting room loveseat, pre-medicate, start the platelets and settle in with a Mario game (thank you, Uncle Greg and Aunt Sheri!). We keep careful watch for fever, hives or breathing difficulties.

1:30, Unhook, go to Radiation.

Problem #2: Toby is neutropenic, which means he has zero white blood cells to fight off infection. He shouldn’t be exposed to too many people, for fear of picking up a virus or bacteria that would land us in the ER with a guaranteed hospital admission. The waiting room in Radiation is packed.

Problem #3: The Radiation Oncologist informs us that there’s a delay on the machines and we might have to wait for an hour or longer. Sot it’s back to the 9th floor for blood. By 5:30 the bag is empty and we return to Radiation where we wait for another hour.

Problem #4: The reality of radiation begins to sink in when Nicole, our Child-Life liaison appears and casually mentions that we won’t be allowed in the room while the treatment is taking place. I’m still wondering why Toby didn’t receive the permanent tattoos that are customarily inked to indicate the exact position for the beam. Instead, his shoulder has been repeatedly marked with different colors of sharpie marker. Some of the marks have blurred or rubbed off. It suddenly seems haphazard, like the doctor’s words that radiation will be the least problematic part of Toby’s treatment.

The technicians position Toby’s small body on the hard steel slab and rotate his shoulder into place. They measure the distances with a plastic ruler. The doctor calls and tells us that the prescribed dose will be 2000 times stronger than what is used in a chest x-ray. And Toby will receive this dose twice a day for 7 days.

At 6:30 pm, 4-year-old Toby lies alone, half-naked in a room with 2-foot thick steel walls. He is awake, determined to be still, accepting the “energy ray” that beams into his shoulder, while Stephen and I tell him stories through the intercom. We can barely put the words together as the guilt, fear and nausea wash over us. In a few minutes it is over and we shake with relief.

On the way back to Brooklyn, I am so grateful to be headed home, so relieved to have my sweet boy on my lap, so overwrought with emotion, so desperate to appease my sickening sense of guilt, that I ask Toby if there is anything in the world that he wants. He is quiet, thinking. I want to give you the moon, the stars, the rest of your life with no pain. Toby is silent, and then he quickly says, “I think I would like a cherry lollipop on Monday and a strawberry one on Wednesday.”

We arrive home at 8 pm, barely able to drag ourselves up the front steps, barely human. And on the kitchen counter, is the most beautiful meal, prepared by a loving friend. And it is still hot.

_______

It is now Friday, at the beginning of a new year. We have made peace with this treatment. We still chafe at the euphemisms, but Toby actually enjoys going to the 2nd floor to receive his "ray." He started eating this week, some of the delicious food that has graced our table during the holiday. Next week is a busy one: 5 more rounds of radiation and full restaging scans... a CT on Monday, echo on Tuesday, MIBG on Wednesday and bone marrows on Thursday. We are so grateful to all of you for continuing to care. You are an inspiration to us and remind us daily that we are not alone. Shana Tova and HOPE.

Love, mooki and stephen and yoni and toby

Tuesday, September 11, 2007

Moving to Temple Court

Temple Court is a special place in Brooklyn. Just a block long, the street terminates in a dead end which makes it feel a bit like a large courtyard. This block is lined with turn-of-the-century or pre-war framed row houses. The houses are neat and narrow, each trimmed in different colors. Since there is no throughway, it is quiet and peaceful. Neighbors amble across the street, visiting one another, gathering to chat and catch-up. “A little like Mayberry, perhaps?” we thought, a little skeptical. Hmmm, the neighbors said, “More like a cross between Mayberry and Tales of the City.” This is good.

Temple Court and surrounds will be a supportive home base for Stephen and Mooki, and the boys. There are young families and older retirees on the block; there are plenty of children who will likely become playmates and friends. Yoni’s closest friends live nearby (his buddy Rain is just around the corner) and already they have taken to the “courtyard” with their games – no worries about cars. Toby has made friends with staff of the pizza joint on Prospect Park SW – the owner (who also sports a bald pate) has invited Toby to help make pizza with him. We hope Toby can make a date to do so soon. Just a little more than a block away, Prospect Park beckons. A two minute walk brings you to Lonelyville, a coffee shop that gives independent coffee purveyors in Seattle a run for their money. Mike, who runs a grocery/deli next door (a picture of Mike with the Mayor is prominently displayed – “he’s my uncle”) creates excellent sandwiches and greets us as if we’ve been in the neighborhood forever. Wahlid and Maria, and their family of sons, run a competing grocery/deli even closer to the house – they are hardworking and kind, and we depended on them for all the basics during those first 10 days of moving in. They, too, know about Toby and are very eager to get to know him.

The Temple Court neighbors have been amazingly welcoming. Even before moving in, many had already read about Toby on the blog and all look forward to meeting him. Without exception, the neighbors offered assistance and encouragement. When we generated far too much trash in the first few days of moving in, the neighbors quickly distributed bags among themselves to ensure the sanitation crew would leave none behind. Alec and Debby next door purchased a “Haveaheart” trap for the feral cats in the yard and delivered it to us; they loaned a bike and insisted I “take a breather” in the park. Karen across the street brought bright geraniums and rich warm autumn mums for the backyard. Sheila directly opposite offered access to her ISP when Stephen needed the assist. Carmella and Riva plan to join the dinner brigade (“It will be SO easy – we don’t need to find parking; we’ll just walk dinner across the street!”). Temple Court is a community, and I fervently believe that Stephen and Mooki will gain strength from this further expansion of the universe of caring souls around them.

It was a profound experience to be with the family during the move. I was deeply affected to meet the friends who help day in, day out. Every evening, another smiling countenance arrived bearing sustenance. Since April, this gift of dinner has arrived daily. Now approaching 200 days, the community has made a tremendous contribution to the well being of the family. I am reminded that everywhere on earth, families are sustained by the “breaking of bread” together. Meals are sacrosanct in all cultures — they bond family members to one another, they make friends of strangers, they provide respite from troubles. This gift nourishes Stephen and Mooki and their family spiritually and emotionally, as well as physically. “They saw God, and they ate and drank.” (Exodus 24:11) In my experience, this support of food and drink allows the family to experience blessings even as they endure deep suffering. I know they are extremely grateful.

So many helped with the move. When I arrived, the house on Temple Court was filled with boxes and boxes and boxes of belongings – most packed and delivered by Oz Moving & Storage. This company helped tremendously – packing the bulk of their belongings carefully, delivering it safely. (How many books can one family own!!!???) The charge for doing so was deeply, deeply discounted. On the days spent at the hospital for Toby’s sixth round of chemo, Mooki’s parents, friends and supporters (some total strangers!) swept into 1st Place to pack up the last clothes, toys, bath items, dry goods, refrigerated/frozen foods and bring them home to Temple Court. I arranged to meet helpers at 1st Place, and even though we’d never met I knew who they were in an instant. I would glance at the driver as they turned onto our street, and could feel the connection – “Oh, that must be Leslie!” “Here’s Tova and all the kids she’s brought to help!” “This has to be Deb!” Others called – “How can we help?” Small gifts of aid made all the difference: Sara and Geoff arrived late one evening and tore down and bundled boxes for recycling. Doing so spared me time to work inside. All of us, the helpers, talked. We laughed, we hugged, we worked. It felt like a tremendously large and loving family – and it is.

All of this support and organization made unpacking and setting up a breeze.

Which brings me to my closing remarks about this family. Stephen is a remarkable man and Mooki is an amazing woman. It is a privilege and honor to know them; it gives me great joy to love them. I am blessed to know each of them better today than I did a month ago. I cannot begin to comprehend their pain, worry, fear, anger, and love. They suffer, they persevere, they do what they must. We all know this. But to observe all of this at close hand was a lesson for me. They put in motion the move with good organization. But it was due to their grace – the acceptance and tolerance of others mucking with the most intimate details of their lives, their home and personal effects – that they achieved a smooth transition into their new home. While burdened by lack of sleep, long daily hospital trips and acute concern about Toby’s condition after his latest surgery and chemo, they managed to direct and contribute to unpacking; to share meals together; to be affectionate; to tell tales and laugh; to be kind and thoughtful; to patiently provide Toby with hours of stories, games and diversions. Stephen often turned to work for hours late at night, focusing his remaining store of energy on service to his clients. Mooki endlessly comforted Toby during the worst of his days. There were major snafus with the move, and in no instance did these foul-ups cause Mooki or Stephen to lose their cool and composure. Perhaps they betrayed a tiny trace of disappointment, but lesser persons would have been sent over the edge by the setbacks. Stephen and Mooki are strong, strong people. They have resilience, they have tolerance. They are forbearing. They parent with huge reservoirs of love and unusually generous spirits. Toby and Yoni are lucky to have them. We are lucky to have them in our lives.

Toby had a difficult time while I was there. I am grateful that he was feeling well the first days of my visit. We had numerous pretend train rides, and I was dumbstruck by his knowledge of and passion for the NYC subway system. Mooki and I had a wonderful trip from 1st Place to Temple Court via subway, accompanying Toby as he expertly rode his tricycle to and from the subway stops. His commentary on trains, elevators, and people ranged from hilarious to sober. He was stoic in the face of surgery and the ordeal of chemo. When told that his doctors would be taking out his lymph nodes (explained more simply than that), Toby listened intently and was quiet for a moment. Then, very serious and clear, he said, “Please ask them to put the medicine in my ‘tubie’ very slowly.” Doing this would make it less painful for him. While terribly ill for days, he remained mostly good-natured. Greatly tired and in pain, he did not complain but became quiet and reserved. For such a little person he seems to understand and accept that what he is going through is necessary. He is a good patient and manages his trials with dignity.

Mooki and Stephen can also take pride in Yoni and how well he is doing under these most trying circumstances. Yoni is a straight-A student. He demonstrates excellence in everything he undertakes. After the move, Yoni quickly organized his room, while completing summer homework and preparing for the start of school. I was so happy to talk with him about a book we both read this summer – "Mountains Beyond Mountains" by Tracy Kidder. While he could have read other books for his summer project, he picked one with a challenging story line about the selfless work of Dr. Paul Farmer among the sick and poor of Haiti. Yoni did a superb job with his homework on this book – outlining critical information on a set of index cards that described the events and people of the book and synopsized the thesis – that one person’s actions can change the world for the better. Because of what his family is going through, Yoni is growing up faster than other kids his age. But that’s okay – he is doing this well and is becoming a mature and admirable person.

Thank you for listening to me. I want to thank everyone in the New York community for your love and support of Mooki and Stephen, and their family. Back here at home in Seattle, I feel such comfort that all of you are there for them. Bless you, bless you. Even more could be said - I will come back to comment again.

After sleeping in his new house the first night, Toby awoke the next morning and was carried downstairs by his mom. As he came down the stairs he said, “Hello house! This is a nice house!” And he is right. It IS a nice house . . . and it’s home.

Greetings at Rosh Hashanah. L'shanah tovah to all!

With much love,

Betsy

P.S. I have probably misspelled some names - my apologies.

Shana Tova from Toby's Sabta

To All the Volunteers, Friends, Colleagues, Neighbors, and People of Good
Will Who Are Engaged in Helping Toby and his Family:

Thank you very, very much!
I wish you all a Happy and Blessed New Year, a Year of Health, Joy, and
Quality Life,

Yochi
Toby's Sabta

Monday, September 10, 2007

From Toby's Saba

Toby had a pretty good weekend, and is slowly regaining some energy: he was able to walk a bit and go up and down the stairs. His mood is sunnier too. I however, have been completely unable to muster the energy to write an update and am so happy to share this letter about Toby from my father. I want to let you all know that we are fine and settling into our wonderful new home on Temple Court. I will update soon.

From Saba:

Toby is an extraordinary human being. Throughout his lengthy ordeal, he has, incredibly, preserved his smart, sharp intelligence, his sense of humor, curiosity, good natured complexion, and, short of a better term, his stoicism in the face of suffering. It is he, to my mind, who enables his parents to be such remarkable people.

Subjected to cruel and savage treatment, consisting in being killed slowly and then saved at the last moment, strengthened for the next killing session, cycle after destructive cycle, operated again and again, disfigured physically, he has managed to preserve his amazing character intact and to convince those he comes into contact with of his divine imprint. He seems a living instance of the separation of body and soul.

It is hard to believe, but true nevertheless, that, even in his misery, the barely four year old boy has preserved his gracious generosity (and I know precisely what I am talking about) and the ability to escape, at least occasionally, the world of suffering, which is his share since last April.

I write these lines with great difficulty, but they reflect truthfully my deep conviction that what I describe is entirely accurate, though inadequate to convey convincingly Toby’s unusual personality.

I hope and pray he will eventually be cured of his awful disease and that the cure will not affect too heavily the life of this remarkable boy.

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.

Yoram

Monday, August 27, 2007

After several weeks of "routine" visits to Sloan every Monday, Wednesday, Friday, during which Toby received blood and platelet transfusions, underwent bone marrow aspirates and biopsies as well as other radiologic tests, today marked the beginning of the next phase of Toby's ordeal. Early this morning Toby had surgery on his neck. His surgeon, Dr. LaQuaglia, removed many diseased lymph nodes, which had failed to respond to five intensive cycles of chemo. Many of the nodes looked "strange," either the result of neuroblastoma and/or the chemo itself. Tonight, Toby is recovering at Sloan where he is a bit grumpy as a result of not being able to freely move his neck and because of the pain associated with the surgery. He is getting morphine every couple of hours. Despite this, Toby's primary team believes that he is ready to start chemo tomorrow and because Toby hasn't "seen" any chemo for about a month or so, the team doesn't want to delay any longer.

The chemo will consist of three agents, one new one that Toby hasn't gotten yet (topotecan) and two that he has received in prior cycles (cyclophosphamide and vincristine). Topotecan has been shown to be (moderately) effective in combination with the other two in neuroblastoma, and the hope is that Toby's remaining areas of disease (neck, shoulder, and possibly his leg) will respond favorably. The chemo will last five days and if all goes well, it will be followed by antibody (3F8) treatment and radiation. Toby can expect the usual assortment of unpleasant and upsetting side effects like mouth sores, nausea, vomiting, constipation and diarrhea, foot drop, and low blood counts. Hopefully, he'll weather this latest onslaught like the others without too much excitement (being a boring patient is always a good thing).

On the home front, Mooki, Stephen, and Yoni are transitioning to their new home at 19 Temple Court and are officially moving in on Saturday, Sept 1st. The movers took care of the majority of the belongings, but there are still quite a few "leftovers" at the current sublet at 66 1st Place which need to find their way to the new place on Friday, the 31st. Betsy, Stephen's sister in-law, is busy unpacking and arranging. If anyone is available to help unpack and/or move (i.e., drive) the remaining boxes, please call Betsy directly at (206) 300-5725.

Finally, because chemo will continue through Saturday, Toby and gang will be at Sloan everyday until then. Rather than having lunches delivered to their home, dropping them off to Mooki and Stephen at Sloan would be great.

So many of you have been an amazing source of support and inspiration. We are truly grateful and awed by your spirit and caring. Thank you.

Yoram




Sunday, August 26, 2007

Tuesday, August 21, 2007

Providing Meals – Frequently Asked Questions

Thank you for offering to prepare a meal for Toby, Yoni, Stephen and Mooki. All the meals have been delicious and so very appreciated. Below are answers to some frequently asked questions.

Meal Coordinator: Florence Hutner, Park Slope Jewish Center
Email: fhutner (at) earthlink.net

How do I sign up?

You can sign up directly on the blog calendar. Just follow the instructions. If you have trouble with the calendar, email Florence. Once you sign up, please email your name, phone number and address to Florence.

Where does the family live? Do I deliver the meal myself? If so, when?

Until Sept 1, the family is at 66 First Place, garden apt. (near Court) in Carroll Gardens. After Sept 1, they will be at 19 Temple Court (btw Terrace & Seeley) in Windsor Terrace. Both are accessible by subway. The cook or another volunteer delivers the meal. Usually, weekday deliveries are near the dinner hour (5 pm or so). Weekend deliveries can often be earlier. Florence will send you details of delivery once you have signed up.

Can I prepare a meal if I am not able to deliver it?

If possible, cooks deliver the meal themselves (see when/how above). But, if you are unable to deliver, another volunteer can deliver your meal. As soon as you sign up, let Florence know if you need someone to deliver.

Should I make something that is frozen? Should salads be prepped?

For now, because Mooki and Stephen have very limited time and because freezer space is minimal, meals should be fresh, not frozen and ready to eat with minimal prep needed. Be sure to use disposable containers.

What should I prepare? Are there any dietary restrictions?

The whole family (kids and adults) have been very happy with chicken dishes, chili-type meals, stews, meatballs, fruit salads, soups. Because Yoni keeps kosher, please avoid pork and shellfish, and if possible, do not combine dairy and meat in the same dish. Ask Florence for further tips about what to prepare.

How much food should I prepare?

Enough servings for three to four adults is plenty. Some cooks choose to prepare a main dish and salad or side dish, while others like to provide an entire meal including salad, entree, side dish, bread and dessert. It is up to you. Wine is welcome.

Can I include a gift for Toby or a note for Mooki, Stephen and Yoni?

Of course. Notes from the cooks are very welcome.

“Thank you again, from our stomachs and our hearts.” ~Mooki

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

Monday, August 13, 2007

Respite







Toby had a really good week. Our bout with neutropenia was mercifully short this round, and his counts bounced back after just a few days. He did receive 3 platelets transfusions (thank you, donors!), but as of Friday, his platelets were in the triple digits, at 107 (normal range is 160-400). His hemoglobin held at 8.7 (normal is 13-17) and his white cell and absolute neutrophil counts were within normal range, holding steady even with no G-shot.

But enough with the medical, the bigger news is that Toby had a few days to be a normal kid, and I can’t tell you how much we relished each minute. We discovered the elevators at Rockefeller Center, and rode 70 floors up to a perfect panorama of the city. Of course Toby was more interested in the view inside the elevators. Another morning was spent at the botanical garden, where we found a magical bronze birdbath, with running water and inscriptions perfect for pencil rubbings. The water lilies were practically vibrating with color and sunlight, and we managed to coax Toby onto the gravel paths of the Japanese garden (he hates sand or pebbles inside his sandals) where the Shinto shrine became the backdrop for a story about a hermit wizard who mixes potions by the light of the moon. Toby has been jonesing for a return visit to the wizard ever since. His ailment? “I yawn like 25 times before I go to sleep, mommy. Maybe the wizard can make me a potion to stop yawning.”

Amazing Aileen came over on Thursday and spent two hours with Toby at the playground, while Stephen and I took measurements at our new place in Windsor Terrace. It was the first time in 4 months that Toby was able to separate from us and spend a chunk of time with another adult.

Perhaps best of all, was Toby’s early birthday party on Saturday. We decorated the house, had over a few friends from Beansprouts and thrilled to see Toby interacting, laughing, enjoying himself.

I’m posting a few photos so you can see for yourselves.

This is a very big week for us. Starting tomorrow, Toby’s entire body will be scanned using every available technology, to give his doctors a better sense of how chemotherapy has impacted the disease. Each day will entail anesthesia, drinking of contrast, injections and other fun stuff. On Tuesday we start with a bone scan. Wednesday is a CT, Thursday will be an MIBG injection, echocardiogram and audiogram. Friday is the MIBG scan and more bone marrows.

Once the scans have been interpreted we’ll have a better sense of what comes next: either surgery followed by more chemo or the unimaginable and wished-for next phase of treatment, 3f8 antibodies. We’ll see.

It has been so long since I thanked all of you. If you haven’t yet, I urge you to read the comments below each post. They are truly remarkable and I can’t stress enough how much strength we gain from reading your extraordinary words. In addition to the writers, there are whole bunches of people who provide us with a steady stream of delicious meals, wonderful care packages for Toby (some left at our door during the night, so that he has a little surprise in the morning!), donations of blood and platelets, financial help, visits to interact with Toby and us, emails, and a constant stream of love. You are incredible friends and we are blessed to have you in our lives.

Love, mooki and Stephen

Sunday, August 12, 2007

A Letter from Aunt Anna

Like so many others, I read Toby’s blog every day. The four of you are never, ever far from my mind. I think of you when I wake up in the morning and all throughout the day. You're in my prayers at night, and I've even dreamt about you. One would think that for all those thoughts, I would have words to put on paper, but each time I've sat down to write you, my heart has seized up, and I've been left with nothing but tears.

I don't know what to say or how to say it. Even after my visit to New York in July – no, especially after my visit in July – I am at a loss for words. Toby is beautiful. He is so unlike any other three- or four-year-old I have known. He is like a little Buddha come to earth to extend some unknown wisdom to us all.

There were so many moments during my visit when I was struck by just how beautifully different he is, but there is one moment that stands most clearly in my mind. I was alone in the outpatient room with him. It was Tuesday, I think, so he was still very much in pain from the surgery just a few days before. One of the nurse practitioners came in and, needing him off the bed, she helped him down. She moved a little quicker than was necessary, and I could see how much she hurt him. He winced and knitted his brow – but then I saw him look up at her, and he simply breathed out and let it pass. I couldn't believe what I had witnessed, but I could see exactly what he had done. He had, in that brief glance up at her, recognized that she hadn't meant to hurt him, and so, the pain having passed, he let it go. He just let it go. Every three-year-old I have ever known would have punished that nurse– maybe with an accusation, a scowl, a turned head, a tantrum – but not Toby. Striking back is not in his nature, forgiveness is.

I could write about a dozen other moments similar to that one. I witnessed that gentle, peaceful, empathetic nature many, many times during my short visit. But there is something else that needs saying. Not only did I witness a beautiful child with a beautiful soul, I also witnessed the parenting that has nurtured that little soul. Toby is a special child, but he is also the product of two people who have clearly surrounded him with lightness and love. You have – obviously by example – taught him to find the beauty and wonder in the world and in others around him. You are the reasons behind “it’s so beautiful here”. You are reasons he delights in the fact that the numbers on top of the taxi match the numbers on the back. You are the reasons he forgave the nurse. Yes, he came into this world equipped with a beautiful soul, but you two have kept it that way.

I’m not a numbers girl, either, Mooki. Dad tried hard to help me grasp the concepts, but it was no use. Those rules that made perfect sense to him were just words on a page to me, and it always seemed that just when I thought I had the right rule memorized, I had missed some other consideration that changed the whole equation. Who knows but maybe that coin toss that’s suppose to be 50-50 isn’t such a perfect equation after all. Maybe there’s a smudge of ice cream on one side that’s going to make the odds 60-40 instead. Maybe Toby has a little something, too, that will turn the coin in his favor. Maybe that’s the difference between the children – something we can’t see or grasp. Everyone who has had a chance to interact with Toby agrees that there is something wonderfully different about him. Who knows what part that difference is playing now?

I will continue to keep all of you in my thoughts and prayers.

Love,
Anna

Tuesday, August 7, 2007

The Numbers Game

I bought Toby 5 scratch-n-match bingo lottery tickets a few weeks ago. The guy behind me in line thought I was a spender and made some jokes about regulation and my assumed addiction. I tried to explain that this purchase was an innocent act, meant to payout 10 minutes of entertainment for my hospital-bound son. It was all about the scratching and the simple activity of uncovering numbers, revealing something hidden beneath the surface. A monetary prize was completely beside the point. It was about doing, not winning.

The day we played with the lottery tickets we also rode the elevator to every floor in the hospital, keeping track of the numbers as we rose and fell. Toby likes the 6th floor, where the doors open onto a honey colored wooden wall decorated with circular artwork. The 2nd, 5th and 14th floors are also current favorites, but any number will do. Best of all is when the elevator is jam-packed with people who say, “could you push 10, please?” or “I need to get to 5.”

We count everything: floors in the hospital, steps to the IV room, milliliters in the syringes, systolic and diastolic readings on the blood pressure machine, rates of infusion on the chemo pumps. Numbers order Toby’s world, make the unfamiliar less frightening, give him a small measure of control.

I’ve never been a huge fan of numbers. This, coming from the daughter of an iconoclastic and brilliant historian of mathematics. I’m sure that others, much smarter than I, have found the connections between the beauty of narrative and the purity of mathematics. Maybe in the final accounting, there’s really no difference between the two disciplines. But I’ve always gotten lost in the world of math… too much reason and evidence and logic. Not enough passion or messiness or laughter.

One notable exception is The Dot and the Line, an illustrated love story between a sensible straight line and a voluptuous, perfect-from-every-angle dot. My father bought this wonderful little book for my mother, back in the late 60s. Its subtitle is, “A romance in lower mathematics,” and it is here that math starts to make beautiful sense to me.

Yoni is a math wiz who rarely uses formulas to help him with his work. Instead, he figures out problems in his own uniquely mind-bending way, and actually takes pleasure in difficulty. And Toby, chanter of numerals and lover of zero, proudly declares to my father upon emerging from the bathroom, “Saba, my poop looks like an octagon.” At the ripe old age of 2½. So I guess the love of numbers skipped a generation. Or something.

Until last week, with the most optimistic general numbers, Toby had a 50 percent chance of surviving this disease for 5 years. Imagine two children, standing next to each other. And then imagine that one of them lives and one dies. Those were Toby’s odds.

After last week’s devastating news, our numbers have shifted. With positive bone marrows after 4 cycles of chemo, chances of survival drop to about 20-30%.

Here are some other numbers, borrowed from an NB parent, that keep me awake at night:

Every 16 hours a child with neuroblastoma dies.

Nearly 70% of those children first diagnosed, have disease that has already metastasized or spread to other parts of the body. When disease has spread at diagnosis and a child is over the age of 2 there is less than a 30% chance of survival.

Childhood cancer is the leading cause of death by disease in the US and it kills more children per year than cystic fibrosis, muscular dystrophy, asthma and AIDS combined.

There are 15 children diagnosed with cancer for every one child diagnosed with pediatric AIDS. Yet, the U.S. invests approximately $595,000 for research per victim of pediatric AIDS and only $20,000 for each victim of childhood cancer.

The National Cancer Institute's (NCI) federal budget was $4.6 billion. Of that, breast cancer received 12%, prostate cancer received 7%, and all 12 major groups of pediatric cancers combined received less than 3%.

Like I said, I’m not a numbers girl, but I can’t find the words to fill in the void that surrounds us at any given moment.

This is a numbers game I desperately want to win. I’ll do what needs to be done: watch as my child sets his jaw in pain, fight the beast that’s feeding off his body, offer him up to yet another surgery if necessary, be strong for him, play with him as if nothing’s happening, live our lives as best we can, act as if cancer is just an inconvenience, focus on the positive when I’m able, find hope when possible, say a million thank yous to the incredible people who are battling with us and giving us food, love, donations, care packages and blood. Unlike bingo, this game isn’t about the experience of doing, it’s about beating the odds.

We continue to draw so much strength from you. Thank you for being with us.

Love, mooki and stephen

Monday, August 6, 2007

Toby still needs blood and platelets.

As so many of us are leaving town for vacations, I hope that anyone who is here, especially if your work schedule has slowed down for the summer, will consider heading over to the hospital to give blood. I just did it again today - platelets took just over 2 hours - not such a huge investment of time. Whole blood is even faster.

According to Mary in the Blood Donor office at MSK, Toby has had more than 100 people come to donate for him, many people more than once. This is an amazing blood drive for the hospital, incredible evidence of the strength and support of Toby's community, and obviously a vital and direct way that we can all help save Toby's life. The number to call to donate is 212-639-3335.

Thanks to everyone who has donated, and in advance to those who are about to.

Jessica

Wednesday, August 1, 2007

Toby, August 1st

I arrived to Mooki, Stephen, Yoni, & Toby's in Brooklyn yesterday just as Toby had fallen asleep for his afternoon nap. Toby had a good day yesterday. In the morning he rode the subway to the firestation where he checked out the fire engine & inspected the gear each fireman wears as soon as Toby woke up he promptly informed that each suit weighs 70 pounds). Toby then had Italian ice at Smiling Pizza & for lunch he had rice & beans at Uncle Mo's. In the evening we went to Carroll Park. On the way home we stopped off at World of Pizza where Toby watched his dinner, a half cheese, half "salad" pizza (mozarella, tomatoes, basil) being prepared. With pizza & Toby's backpack of i.v. fluids in-tow we made our way back home where Toby had a playdate with Katie, one of his friends from Beansprouts.

Toby & Katie were great together. Toby hung out on the couch while Katie swarmed around him & adeptly avoided getting entangled in his i.v. tubing. While Mooki, Stephen, & Laura (Katie's mom) had dinner, I played with Toby & Katie. For my "efforts" I was well-rewarded; for nothing more than being a playmate, Toby rested his head on my lap several times & I got at least 5 hugs!

Today Toby was back at Sloan for blood & platelet transfusions. He's now 9 days out from cycle 5 of chemo. Yesterday's energetic & playful Toby was a only a fleeting memory, replaced by the grim reality that's become all too commonplace.
After waiting many hours, Toby took a nap while the blood trickled into his tubies & Mooki, Stephen, & I met with Toby's team to discuss the next step.

Once Toby recovers from this most recent cycle, he'll have a complete restaging workup. In about 2 weeks he'll have bone marrow aspirates & biopsies, CT & MIBG scans, & blood & urine tests to evaluate the neuroblastoma's response to chemo.
If there is no evidence of disease, then 3F8 antibody treatment is next. However, because the marrows done just before this cycle were still positive & the lymph nodes in Toby's neck were relatively unchanged after the first 3 cycles, the likelihood is that Toby will still have some disease present even now, which would categorize him as having refractory disease. If this is the case then Toby will have another surgery towards the end of the month, this time to remove the diseased lymph nodes in his neck, which will then be followed by a 6th cycle of chemo with topotecan & cyclophosphamide & vincristine.

Starting 3F8 is best when there is no or as little disease as possible, but according to today's talk with Dr. Kushner, even if Toby's not in a complete remission he plans to start with 3F8 after the 6th round of chemo.

That's all for now. Toby turns 4 on August 22nd. I hope that this year will be a better one. One with less pain, more time spent at home & with friends, & clean, disease-free scans & marrows. Happy early birthday Toby.

Yoram

Monday, July 30, 2007

(More) Bad News

Toby has now completed five cycles of chemotherapy. These first five cycles are known as the induction phase with the goal being to "induce a remission," that is, to clear the body of any detectable neuroblastoma. Before starting treatment, the neuroblastoma was in Toby's adrenal gland, as well as in his abdomen, bone marrow, and in many of the bones throughout his body including several of the cervical vertebrae. After the third cycle of chemo, Toby had re-evaluation scans and bone marrows to determine how well the treatment was doing its job. At that time, the primary tumor in the adrenal gland and the abdominal tumors had shrunk significantly, but there was still some residual disease in the bone marrow and the lesions in the cervical vertebrae were relatively unchanged. The hope was that the remaining two induction cycles would successfully take care of the marrow and cervical involvement. Last week, before starting his fifth cycle of chemo, Toby had (yet) another bone marrow aspiration and biopsy done to see if the neuroblastoma that had metastasized there was now gone (the vertebrae will be looked at later to see how they've responded). Mooki and Stephen just met with Toby's doctor and unfortunately, there is still evidence of neuroblastoma in Toby's marrow.

What this means is that instead of being in a complete remission, Toby's disease is classified as being in partial remission. This has many implications, most immediate is that rather than proceeding with the next phase of radiation and antibody treatment, Toby now has to undergo an "extended induction" with another round of chemo. This sixth cycle will combine cyclophosphamide, which Toby got in previous cycles, with a new drug called topotecan. The idea is that because the neuroblastoma isn't responding as readily as hoped to first-line chemo, additional novel chemo is introduced in an effort to induce a remission.

Obviously, this is bad news. While many kids with advanced neuroblastoma need extra cycles of induction-chemo to clear the neuroblastoma, this is not what we were hoping for.

Toby is still recovering from this most recent round of chemo with all the usual potential bumps in the round (risk of infection, frequent transfusions, etc), but this is an especially big and devastating bump. In the next couple of weeks Toby will have the sixth cycle after which his doctors will take another look at his marrow and he will have a complete set of restaging scans.

Mooki and Stephen are distraught, depressed, and frustrated. It seems as if each small treatment-related gain is followed by an equally, if not harsher setback, forcing them to come to grips with a new reality. Throughout these horribly difficult days, weeks, and months Mooki and Stephen have continually reinvented themselves and have found new ways to remain strong for Toby. This is no easy task. Now more than ever, Mooki and Stephen need your continued love, support, and encouragement. Please write, post a response to the blog or send Toby a picture or card. I will be in NYC tomorrow for a few days and will send another update once there.

Yoram

Thursday, July 26, 2007

A better day

Thank you so much for your comments after my last post. Your words grounded and comforted me, and reminded me why we're doing this. Yesterday was also a better day for Toby: he ate a little toast, had some visitors and participated in the pediatric talent show, where he performed a magic trick to rousing applause. We leave in a few minutes for the third day of chemo.
love, mooki and stephen

Tuesday, July 24, 2007

Crying

It is 5 pm and as i watch toby sleep, i cannot stop the tears. i've never written during chemo, because it's so hard to sort everything out. there's a huge amount of purely physical challenges and an equal amount of information to digest. there's the awful sights and sounds of the pediatric ward. and then there are the continuous waves of emotion, which are pushing me down today, no matter how hard i struggle to rise above the surface to take a breath.

this is our fifth time here, watching toby as he endures the onslaught of chemotherapy. much is familiar: today we see a tiny baby hooked up to yards of tubes, an 8-year-old with such a shrunken body that she looks like she’s four, many children who can't walk or move or stop vomiting, kids with skin color so unnatural and mottled that they look like preserved scientific specimens, children with disfigured limbs and anguished faces, and we hear many, many screams of pain. We are exhausted and depleted and sad, but shocked anew each time we witness the barbaric treatments for this most terrible disease. The children here are all enduring the worst and it should not be so.

There’s also the unfamiliar: this cycle carries with it the risk of further hearing loss. Toby already has some difficulty discerning the difference between the letters “t” and “f” and “s” when they appear at the beginning of words. This is called high-frequency hearing loss and it can worsen with this cycle, to the point where hearing aids are necessary. This is also the first cycle that we’re starting at a very low bodyweight and the first time that Toby is completely without eyelashes, adding another uncomfortable element to the mix. His eyes are constantly irritated without eyelashes to shield light and dust. Toby’s counts rose over the last week, but not nearly as high as in the past. His marrow has taken a real beating and it’s obvious that his little body is struggling to keep afloat with so much working against him: there’s the huge scar left over from surgery, and the four new incision points from bone marrows that were done on Monday. There’s the low counts that cause exhaustion and the low weight that makes sitting in any position uncomfortable… the bones stick out everywhere and there’s just no fat left to cushion him. And there’s the overwhelming nausea from the drug cisplatin. My brother called this chemo agent, “the worst of the worst.”

Today we also have to contend with the unthinkable: a possible 6th cycle of chemo and a possible 2nd surgery for the lesions in Toby’s neck, followed by more chemo. Our doctor spoke of these steps today, and he'll determine if they're necessary once this cycle is complete and followed by a full work-up of scans: repeat CTs, MIbGs, MRIs and more bone marrows.

Through all of this, Toby doesn’t complain or cry. He is in pain, sick, hungry, nauseous, and unbelievably uncomfortable, but he’s still making conversation, still pointing out that the taxi medallion number appears on the top of the cab, as well as on its license plate, still occasionally smiling.

And my biggest fear: that this intervention will “break” my beautiful child. That he will not be Toby once this is through. I look at him and cannot believe what he is enduring. And I wail.

Chemo 5 starts today and I am in a pit of despair

Sunday, July 22, 2007

Fifty


Many years ago, before Toby was born, Stephen and I took Yoni to his first sleepaway camp and then spent the rest of the weekend nearby, at a small bed and breakfast. In the morning we took a 10-mile bicycle ride through the woods and found ourselves, unexpectedly, at a beautiful hidden pond. Ringed by tall trees, the pond was completely deserted and still. Tiny white flowers floated on the dark surface and small dragonflies dipped and shimmered over the water. We couldn’t quite believe our eyes when we sighted the rough-hewn dock and diving board. The board, completely out of context, slyly winked.

It had been a long, hot ride and we desperately wanted to swim. The pond beckoned silently. Stephen went first, stepping purposefully onto the board, then slicing through the water neatly and with minimum effort. I didn’t see the board move. And now it was my turn. I walked to the edge, looked down into the unyielding darkness, and realized that I wouldn’t be able to do it. No matter how many times I readied myself by saying “one, two, three, jump!” my knees buckled at the last minute and the board flabbily shook in embarrassment. I was scared of so many things: the color of the water, not knowing what exactly was at the bottom or how deep it would be, the squishiness of the mud, the possibility of pondgrass, water bugs, seasnakes or worse. I longed to feel the cool water envelop me and I knew it would be a formative moment, but I just couldn’t take the plunge. And so I sat on the diving board and cried bitterly over it all: my inadequacy, my inability to quiet a churning heart, my absolute knowledge that I had ruined a perfect day.

Stephen stayed in the water for an hour, waiting for me to fight my demons. He didn’t cajole or tease or lose patience. He didn’t engage in any convincing games, nor did he sigh and exit the water. Stephen never gave up on me. He let me come to my own place of fear, and he waited while I worked through it. I am sure that he encouraged me, but what I remember most was his presence: bobbing in the water, smiling, waiting for me to be ready. He did not leave.

And then I did it. I jumped right into his arms and laughed with relief. And then we jumped over and over again, relishing the coolness, the sweet smell of the water, and the perfection of the afternoon.

Stephen turns 50 tomorrow.

Before Toby got sick, I had planned to mark this day with a no-holds-barred celebration. It hasn’t quite worked out that way and I hope Stephen will forgive me for this very public display of affection. In the absence of an actual party, I’ve decided that everyone should know how I feel about my extraordinary husband.

He is the gentlest of men. He can calm the chaos in my heart with a simple, warm embrace. He has patience in spades. He maintains hope like nobody’s business. He has unparalleled musical sensitivity. He has fantastic taste. He's a brilliant artist. And we all agree, that when Stephen is around, everything is more relaxed, more open to possibilities and just more fun.

Stephen is able to make a conversation with Toby into the stuff of legend. And he is the most incredible father: patient, loving, playful, wildly imaginative. But these words mean nothing, without actually seeing what goes on between Stephen and Toby. My own father gets tears in his eyes as he watches them play. I have eavesdropped on Stephen-Toby conversations and felt like I was in the presence of God. There is something ineffable, perfect and beautiful that occurs when the two of them forecast the weather in Antarctica or talk about chipmunk, wally worm and the gastro-intestinal effects of baked beans and cabbage rolls. Through his love for Toby, Stephen has taught me again and again how to be a better parent.

During a recent inpatient stay, Stephen spent the night with Toby and shared the room with a Hasidic father whose 2-year-old son has sarcoma and was admitted for dehydration. The father was highly observant, dressed fully in black, with black hat and sidecurls, the whole gesheft. The following morning, when I arrived, the man stopped me in the hall outside the room. Usually Hasidic men do not talk to women outside of their immediate family, so I was taken aback and apprehensive. He looked at me, directly in the eyes and said, “I have to tell you that I have never seen such a good father as your husband. The way he talked to your boy through the night, the patience he showed, was remarkable. You need to know this. He is something special.”

A wise friend once remarked that Stephen is my tzaddik. At first I translated that to mean “my righteous man,” but I’ve since learned that tzaddik refers to someone who does what is right and just in his relationships. I cannot think of a better description of Stephen.

So, remember how Stephen helped me at the pond? It’s the same way he’s helping me now. We jump, together with Toby and Yoni, into the depths of the unknown every day. We don’t know what’s at the bottom… it may be unpleasant or much worse… it could kill us. Or possibly, it just might choose to swim by and leave us blessedly alone. There are moments when we notice the beauty that floats in our midst and there are many more moments that are cold, dark and frightening. But I never feel like I’m alone in this pond. Stephen is always near me, always ready to hold out a hand to me, always there. Happy birthday, my husband.

I love you,
m