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.


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,


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,

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.