tag:blogger.com,1999:blog-80201967012403275462024-02-02T04:30:19.225-08:00Toby PannoneUnknownnoreply@blogger.comBlogger131125tag:blogger.com,1999:blog-8020196701240327546.post-88148880877517759822013-04-13T16:54:00.001-07:002013-04-13T16:54:24.064-07:00I have some significant news.<br />
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Last weekend Toby had his 30th set of scans at the nuclear medicine wing of Memorial Sloan-Kettering Hospital. He was injected with radioactive dye on Friday and came home with a special disclaimer that warned us not to travel near airports or government buildings because he might set off security alarms. On Saturday, he was strapped to a room-sized machine for 3 hours, while every inch of his body was scanned and interpreted. He stayed perfectly still while Stephen told him a rollicking Wally Worm story. Yesterday we received the results: Toby is free of disease. Almost 6 years to the day after being diagnosed with metastatic stage 4 neuroblastoma, the doctors cannot find any cancer cells in Toby's body.<br />
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After crying and hugging and giving thanks, a brave new world opens up before us. After 6 years of fighting and subjecting this little boy to every possible variation of hell, we pause. So what does this all mean?<br />
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It means that instead of getting scans every 3 months, we move to a 6 month schedule. It means that we deal with the effects of treatment rather than the treatment itself. And it means that we give thanks to all of you, for being the most amazing caring community of friends and colleagues we can imagine. We would not have gotten here without you.<br />
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It also means that we dedicate ourselves to caring for others who are still in the trenches. Just two months ago a little boy from our neighborhood was also diagnosed. He and his family are in the worst of it now. Speaking with his mother brings me back to the intensity of April 17, 2007 when the doctors told us "Your child has a tumor. It has spread. And we need you to know that he may die."<br />
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On May 11 Toby will be walking with us and his friends in Central Park to raise money for pediatric cancer research at Memorial Sloan-Kettering Cancer Center. Kids Walk for Kids with Cancer is an annual event that gives 100% of raised funds to doctors and researchers at MSK. Last year we formed a TEAM TOBY and raised an amazing $10,000 in just a few short weeks. These funds are vital to survival: cancer kills more children than any other disease. Every 16 hours a child with neuroblastoma dies. And lack of research dollars bars the way to a potential cure. By getting sponsors and walking or just by donating, you can help to level the playing field and give our children a chance at life.<br />
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To donate online:<br />
http://www.active.com/donate/kidswalk2013/TeamToby_BNS<br />
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We are hoping to organize an even bigger TEAM TOBY by encouraging friends and colleagues to join the walk and/or donate. The event starts at 1:30 pm and will be a 4.5 mile walk followed by cookies and socializing. Everyone from babies in strollers to grandparents and even pets are welcome! Last year we had a great time!!!<br />
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How wonderful would it be to show our kids that by walking together we can make a difference in the lives of so many. And what better weekend can it be than Mother's Day to share this gift of support and love... and celebrate our own children's health.<br />
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Thank you and Shabbat Shalom,<br />
Mooki + Stephen<br />
Toby's Parents<br />
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To donate online:<br />
http://www.active.com/donate/kidswalk2013/TeamToby_BNS<br />
Event website: www.kidswalkforkidswithcancer.org/
Unknownnoreply@blogger.com11tag:blogger.com,1999:blog-8020196701240327546.post-36389305415091915892011-10-15T19:13:00.000-07:002011-10-15T19:21:58.058-07:00Who Shall Live and Who Shall Die?<span style="font-style:italic;">Presented at the annual meeting of the American Society of Bioethics and Humanities. Special thanks to my brother Yoram Unguru, Donna Ludwinski, Carie Carter, Pat Lacey and most of all to John London, who started it all with his heartwrenching words and compelling argument.</span><br /><br />Who Shall Live and Who Shall Die?<br /><br />It's a provocative question, one with Old Testament roots and an attendant seriousness. It's a question with wide application in ethical discourse. <br />And although it may be uncomfortable and perhaps sensationalistic, it is a question that we cannot ignore. Certainly in the world of pediatric cancer, "who shall live and who shall die" has very real meaning. For me, since my son Toby was diagnosed with stage IV neuroblastoma, the question "who shall live and who shall die" has become a constant backdrop to daily life.<br /><br />Neuroblastoma is the most common solid tumor cancer in infants. The median age at diagnosis is 2 years old. At diagnosis, more than half of neuroblastoma patients have disease that has already metastasized to other parts of the body. Children with high-risk disease undergo aggressive high-dose chemotherapy, radiation, surgery, stem cell transplant, differentiation therapy, and antibody therapy. Even after this intense treatment, only 30% survive. If a patient relapses or stops responding to therapy, neuroblastoma is usually viewed as a terminal illness with less than a 10% chance of survival. For those that do survive, the late effects are significant: hearing loss, neurocognitive problems, sterility and secondary cancers.<br /> <br />Since my son was diagnosed in 2007 I have watched helplessly as child after child has died an often agonizing and prolonged death. Neuroblastoma parents describe the death of their children like this: "I’m literally seeing disease erupt all over his body, extraordinarily painful bone mets, fractured bones from disease, organ failure, breathing difficulty, seizures, paralysis, blindness.“ These families face the unthinkable. <br /><br />In the blink of an eye, we have said goodbye to Liam and Evan, to Lucas, Penelope, Max, Erik, Sam, Erin and so many others that I could burn through my allotted time by reading their names. I think about these children every day. I try not to question their deaths, out of fear that I won’t be able to find my way back to sanity. So instead I remember their vibrancy, their beauty, their quintessential child-ness.<br /><br />But in the dark hours, I ask why did Liam die? Why does Toby live? It is a terrible question. The randomness howls. And the world spins madly on.<br /><br />***** <br /><br />In March 2009, the Children's Oncology Group released a statement halting the phase 3 trial of ANBL0032, a randomized study of chimeric antibody 14.18 in high risk neuroblastoma. Preliminary results of the phase 3 trial showed a significant increase in survival among those patients who received the antibody, as compared with those who didn't. Not only was the trial stopped prematurely, but COG also stated that ch14.18 immunotherapy should become a standard part of upfront nb treatment.<br /><br />The neuroblastoma world is not used to hearing good news. As a reminder, children diagnosed with high-risk disease have a 2 in 3 chance of DYING. So a trial that shows a 20% increase in survival is almost beyond belief.<br /><br />This is what Dr. John Maris, Chief of the Oncology Division at Children’s Hospital of Philadelphia said about ANBL0032: “ The last clinical trial that showed a new treatment improving outcome in neuroblastoma was published in 1999, which means the study ended in about 1996. That was the one that showed that transplant helped and that Accutane helped, so it’s been a long time.” <br /><br />But elation quickly turned to unease, as it became clear that ANBL0032 <br />was a randomized trial that started accruing patients almost 8 years earlier, in October 2001. By the time of its halting, over 200 children had been accrued, ½ randomized to receive the antibody and the other ½ not. <br /><br />Toby was not part of this trial. As a patient at Memorial Sloan-Kettering he, like every child treated there for the last 20 years, received a mouse-derived antibody as part of upfront treatment.<br /><br />Before I go any further, I want to point out that I am a believer in research. Research has allowed my child to receive the best available treatment and it is important to understand that most neuroblastoma families gratefully sign their children up for trials, because the prognosis otherwise is so poor. In fact, virtually all children treated for neuroblastoma, both high and low-risk, are enrolled on a clinical trial. The cancer is ruthless and research offers a chance at new agents and therapies. I cannot relay how many times parents confess that they just need to keep their children alive until the next trial opens. String together enough trials and maybe you can buy another year or two for your child. <br /><br />So back to ANBL0032: I, like many others, found myself asking if it was truly necessary to do a phase 3 randomized trial when the phase 1 and 2 data demonstrated that antibody was substantially better than anything we had seen before in the treatment of high-risk neuroblastoma.<br /><br />More than 30 early phase studies on the efficacy of antibody treatment were published before ANBL0032 even started. If children were knowingly randomized to the non-antibody arm that was thought to be inferior, the trial was unethical. And more importantly, lives, children’s lives, were sacrificed.<br /><br />Listen to John London, whose daughter Penelope was randomized to the non-antibody arm: “I have to say how unethical it is to have designed a trial where 1) the average age of diagnosis is 2; 2) the survival rate for high risk is around 30%; and 3) the survival rate for relapse is below 10% AND then take a potentially promising agent and DISALLOW 50% of these children to receive it. All in the name of "perfect science". My daughter was one of the children who was turned away. Would it have saved her? Who knows? But I sure would have liked the chance to see. Can you imagine if one of the scientists/researchers/clinicians/protocol designers for ANBL0032 had a child with high risk NB who was denied a potentially promising agent? Randomized studies in High Risk Stage 4 NB sacrifice too many children in the name of science and it needs to change.” <br /><br />Not all trials need to be randomized. Many in the medical community say that randomization is necessary to determine the best treatment and that improved survival in pediatric cancer is due to randomized trials. I would counter that increased survival is due to researchers using strong early phase evidence in choosing new treatment to test against old treatment. They are really good at this. Furthermore, if randomization provides better outcomes, why have changes to induction, radiation therapy and use of growth factors NOT been tested in RCTs? And if RCTs supposedly provide “proof” that one treatment is better than another, why is Memorial Sloan-Kettering not doing transplants when this was supposedly proven by 3 separate RCTs? And why is COG not doing rapid induction, as recommended by the International Society of Paediatric Oncology in Europe?<br /><br />Earlier this year, the New York Times published an acclaimed series of articles on clinical trials in the treatment of melanoma. Many clinicians and researchers have said that the science behind the new drugs has eclipsed the old rules, and ethics, of testing them. <br /><br />Dr. Charles Sawyers, chairman of human oncology at MSK on melanoma: “With these drugs (in development) that have minimal side effects and dramatic response rates, where we understand the biology, I wonder, why do we have to be so rigorous? This could be one of those defining cases that says, “Look, our system has to change.’”<br /><br />To that point, if the odds of NB are already so abysmal, why not allow a promising agent to be used for all children? A different trial design could have built on previous knowledge. Perhaps results could have been compared historically to other studies. Perhaps children could have been allowed to cross-over. Either way it is clear that children did not need to be sacrificed to show that antibody is an effective treatment.<br /><br />Dr. Richard Pazdur, director of the cancer drug office at the FDA has said, “new drugs in development, especially for intractable cancers, might require individual evaluation: “This is an unprecendented situation that will, hopefully, be increasingly common, and it may require a regulatory flexibility and an open public discussion.” <br /><br />The blunt truth is that we cannot control whether our child is diagnosed with cancer. WE do not determine when we live and when we die. <br />BUT we CAN control what treatment we provide. And where we have the opportunity to offer an increased chance at survival, we have the obligation to do so.<br /><br />A society is defined by how it treats its most powerless and vulnerable members. We cannot turn a blind eye to injustice. As Abraham Joshua Heschel said, “To accept passively an unjust system is to cooperate with that system.” Yes, I say this to you as the parent of a child with cancer, but we are also fellow human beings. I urge you to search inside, locate our common humanity and give ALL our children a chance at life.<br /><br />****** <br /><br />I am able to stand here today in large part thanks to the support and smarts of my brother, who is sitting right there. His care and advocacy during the past 4 years of treatment have been nothing short of incredible. <br /><br />It’s not often that a brother and sister find themselves on the front lines of a cancer diagnosis, occupying opposite yet congruent sides of what some term the research/care divide. I believe that with Toby’s diagnosis, brother and sister have been able to transcend our respective boundaries. Certainly in the case of ANBL0032, I hope we are on the same side. <br /><br />Toby has been the beneficiary of the dedication and care of a team of incredible doctors and nurses at multiple institutions. As a parent, I cope with one child who has cancer. Our doctors and NPs cope with the pain of hundreds of children every day. I want to thank them. They have chosen to face death, yet they engage with life. They care enough about our children to embrace hope, and through their work they affirm that people can change.<br /><br />Thank you for giving me the opportunity to share my thoughts. I am grateful to be here in your company. I would also like to thank Donna Ludwinski, mother to Erik. She is the force behind my words. Her vast knowledge, pinpoint clarity and graceful support to the neuroblastoma community deserve unending recognition.<br /> <br />Thank you.Unknownnoreply@blogger.com5tag:blogger.com,1999:blog-8020196701240327546.post-64440551462180930182011-01-26T09:44:00.000-08:002011-01-26T09:54:02.053-08:00Good-night, sweet PrinceI loved Liam before I ever met him.<br /><br />In April 2007, after Toby was diagnosed with stage IV neuroblastoma, after we saw the scans of his body filled with metastatic cancer, and after our doctor told us that Toby might die from the baseball-sized tumor in his abdomen, a parent from Toby's preschool sent me a clipping from Cookie magazine. "Maybe you've seen this," she wrote. "This boy has cancer too."<br /><br />I had not seen the article, but started carrying it in my bag, searching everywhere for Liam and his parents. I desperately needed to connect with another family experiencing the same terror and pain. Eleven days after Toby's diagnosis I posted a comment to Liam's blog, and received a meltingly lovely voicemail from Liam's father Larry the next day. Our paths finally crossed a few weeks later.<br /><br />Toby already had tubes implanted in his chest and had been through two devastating cycles of chemotherapy. His hair was gone, his mouth was lined with oozing sores, and his days were spent in a blur of treatment. This particular morning he had to have blood drawn via a "fingerstick," a routine but painful procedure that involves pinning down the child, lancing a finger and squeezing out enough blood to perform a battery of tests. Toby began screaming immediately and was inconsolable for an hour. After everything he had already been through I didn't expect such a strong reaction.<br /><br />A beautiful woman with startling blue eyes touched my shoulder, looked at Toby and said, "Don't ever let them tell you that he needs a fingerstick when they can access his port instead. It won't hurt him as much." This was my introduction to Gretchen. I followed her advice for 3 years.<br /><br />Liam, our beacon and guide, the beautiful boy whose nickname was "Mr. Inquisitive" died on Monday.<br /><br />On their first "playdate" in the hospital pediatric wing, as both were attached to blinking, beeping IV poles, Liam and Toby fingerpainted. Toby was tentative, unsure whether he liked the sensation of the paint on his fingertips. Liam stuck all five fingers into the paint pots, scooping out the oily pigment and brandishing it against the paper, swooping again and again into an orgy of beautiful color and energy. He chattered the whole time, laughed, described his masterpiece, tore into life with joyful abandon. And then he raced off to the next thing: to investigate the pneumatic blood tube delivery system or visit with his buddy, the custodian who mopped the floors, or a long conversation with the cafeteria workers.<br /><br />I wanted to live like Liam. Each time he had surgery, he was up and walking within absurdly short periods of time -- a day, 12 hours, immediately. He loved science and magnatiles, he played with his little sister Ella with a sweetness that I've never seen before or since. He took comfort in his paci and clan of stuffed lovies. He was a child who always wanted to "go faster, daddy." He deserved to become a doctor, an astronaut, an adult.<br /><br />Today is my birthday. Today I have lived 40 years longer than Liam.<br /><br />Imagine if Liam was your child. Imagine administering agonizing treatment that makes your child whimper with pain. Imagine your child with no hair, hearing loss, sterility. Imagine your child not having the energy to play. And imagine this scenario replaying itself day after day for almost 4 years. The thing is, Liam's story is not singular. Every day (every day!) 46 children are diagnosed with cancer. Every day we face the fact that there is less than a 5% survival rate for relapsed neuroblastoma. And every day we are reminded that there is a "near absence" of research into pediatric cancer drugs. The reality: most children will be dead long before government funding is secured for pediatric cancer. Please don't turn away.<br /><br />Give 3 friends a box of cookies from <a href="http://www.cookiesforkidscancer.org/">www.cookiesforkidscancer.org/</a> and count it as your charitable contribution for the month. Or have a bake sale at your office and find out if your employer has a matching program. If you are in the NYC area, please walk with us in Central Park on May 7 to help raise funds for research and treatment. Or find out more about neuroblastoma and donate at <a href="http://www.bandofparents.org/our_cause_a/158.htm">www.bandofparents.org</a><br /><br />Please remember Liam and all the children who fight.<br /><br />Thank you.<br /><br />Love,<br />mookiUnknownnoreply@blogger.com10tag:blogger.com,1999:blog-8020196701240327546.post-35361625469155590162010-05-05T18:54:00.000-07:002010-05-05T20:31:21.805-07:00WalkDuring the year that hospital became home, Toby spent most of his waking hours in bed. Moving was difficult. So we used a wheelchair to get to surgery, radiation and countless middle-of-the-night emergency scans. And we carried Toby everywhere else: to the bathroom and the IV room, to look out the window as the world spun madly on. And we cried as his body withered, his little bones pushing through skin. <br /><br />He was 4 years old, the age when children laugh and run like wildfire. He could not walk more than a few steps.<br /><br />When Toby returned to kindergarten, we pushed him to Henry Street in a stroller. High dose chemotherapy had destroyed his blood counts, immune system, and stamina. Over the course of 6 months we wore out two maclarens while weathering the disapproving glances of those who thought he looked too old for a stroller.<br /><br />After a year Toby began to walk again. <br /><br />At first he could only manage half a block, but we learned to scope out places to rest. Soon he could string together a path of steps to the front door. <br /><br />This Saturday Toby will walk 4.5 miles in Central Park with his brother Yoni and friends, to raise money for pediatric cancer research. He will walk for the ones who still battle and for the children we have lost. A chain of steps for Erin, Max, Sam, Erik, Gus, Carter, Jack, Ellie, Courtney, Austin, Santi, Christi, Eden, Emily, Lucas, Penelope, Nathan, Kendall, Spencer, Pierce, Sydney, Brody, Katie, Xinxin and sadly, many, many more. <br /><br />If you live in the New York area and would like to walk with Toby, please visit <a href="http://www.kidswalkforkidswithcancer.org">kids walk for kids with cancer</a> for more information. We would love to see you! If you can't make it please consider sponsoring Toby. His fundraising page is <a href="http://www.active.com/donate/kidswalkforcancer/2010MSaltzm">here.</a><br /><br />Thank you for being with us on this journey.<br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg_bob4MYST1fnvhTDhZrYjnVUHJmPu8qicWMRCV4Kds8v-XWPk7TEgPbQeP3IQnm0gSoSiMZFqpR24Tb9hTt3rOBmhzMKynXqwsTW68I6DjT21PSSfnkRYBiqFU0TMEnjqNX7GEV35UKg/s1600/2_image.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 260px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg_bob4MYST1fnvhTDhZrYjnVUHJmPu8qicWMRCV4Kds8v-XWPk7TEgPbQeP3IQnm0gSoSiMZFqpR24Tb9hTt3rOBmhzMKynXqwsTW68I6DjT21PSSfnkRYBiqFU0TMEnjqNX7GEV35UKg/s400/2_image.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5467994251606101714" /></a><br /><br />Love,<br />mookiUnknownnoreply@blogger.com4tag:blogger.com,1999:blog-8020196701240327546.post-66850237802445746632010-03-12T17:32:00.000-08:002010-03-12T18:58:27.887-08:005 childrenWhen I started this blog almost three years ago, I spent most nights in a pit of fear, adjusting tubes, cleaning vomit and watching my child waste away. In between terror and tears I searched constantly for "neuroblastoma blog" online, in desperate need of finding others like Toby.<br /><br />I found a boy named Will, who lived in Boston, and through his father's writing discovered Erin, Max, Sam and Erik. These were seasoned neuroblastoma families, with a lot of history and knowledge. The children were at various stages in treatment and the parents carefully and precisely outlined every drug and reaction. Their blogs became my source of news and my worldview. Pretty soon I found myself starting at the beginning and reading each and every post, delighting in Max with long golden curls, following Erin at camp, marvelling at family photos of Sam with his red-headed brothers, putting Erik's words to memory and always circling back to Will, where it all started. <br /><br />Each of these five children gave me respite, hope, and a sense of belonging. Through their parents' words I was able to string my days together and remain human. I linked to their sites with a sense that these were the children who would make it. How could they not make it? They each lived so large—running, laughing, overcoming every obstacle with pluck, determination and joy.<br /><br />Will.<br />Erin.<br />Max.<br />Sam.<br />Erik.<br /><br />In less than 2 years, four of these five children have died. Sam died today.<br /><br />This is the beast neuroblastoma. Look on any neuroblastoma child's site, and the links to dead children far outweigh the links to the living. In our world we call them angels and warriors, awful words to describe a reality that should not be. I know this is difficult to read. And probably not the reason you dropped by. I'm sorry. As I wrap my arms around Toby, and virtually around Will, I wish Erin, Max, Erik and Sam were here.<br /><br />***<br /><br />One of the first comments to Toby's blog was from a woman who signed her name, "an Angel Mom." I didn't understand the terminology, but after just a few days in the world of cancer, I realized that her son had lost his fight. "Angel" is a word to describe the indescribable, a way of marking a child's passage to something else. I'm so ashamed to admit that I was scared of this woman, and worried that her comment could somehow decrease Toby's chance of beating this disease. Now, almost three years later, I have thankfully grown a little: I'm not scared of people whose children have died. The bigger struggle has become how to dull the pain of overidentification. And how on earth to fathom their pain.<br /><br />If you can, please visit these children's sites and offer their parents a word of comfort. Thank you.<br /><br />Love,<br />mookiUnknownnoreply@blogger.com11tag:blogger.com,1999:blog-8020196701240327546.post-8387721415278419112009-11-02T18:19:00.000-08:002009-11-02T20:31:12.266-08:00Unlimited RideIt's all so good around here. And it seems I've forgotten how to write. Mostly I drink the beauty of normal. We ride our bikes to soccer in the park, we read chapter books. and we have regular tooth fairy visits. Not a day goes by that we don't count our blessings. <br /><br />The fear is still here, but the despair has grown soft. Tonight at bathtime, Toby and I were digging through the giant bins of medicine that still crowd the shelves, looking for colace to help with the side effects of our current investigational drug, ABT-751. We extracted bottle after bottle of hydroxizine, gabapentin, megesterol, morphine, and dilaudid--bizarre aggregates of chemicals that we're intimate with. At the very bottom we found a bag of syringes. They have little yellow caps and are filled with clear liquid. We used at least two of them every single day for the first 18 months of Toby's treatment, flushing his tubies before and after every infusion. What are these yellow things again? An empty one has been hanging out with the bath toys, but surely that can't be it. "Toby, do you remember what these are?" I ask. He laughs at my ignorance and says, without missing a beat, "It's heparin, Mooki. Like, duh." <br /><br />Not much makes sense to me anymore. I keep a photo of Erin on my desk at work and finger the lanyard beads like a rosary. I miss Max viscerally. I mourn Owen and Pierce. Every night before bed, I catch up with Liam, Will, Evan, Nick, Erik, Sam, Jack, Hans and countless others, each a distinct, glorious child.<br /><br />I ask unutterable questions, lose words, and research hearing aids. And I make Halloween costumes, mail college applications and kiss my boys over and over.<br /><br />Thanks for dropping in. <br />Love, mooki<br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg1u2kBlr_DG58yg5x8jLL-YePMwEpaj1Oe03WWhlzXBPnHwn6gHREZl13e3cZaLo2RxAyfjrt_JMM22Afxax3Odj5Rg6drOYtDUPEcDAylcQE52UbS3P9zAGBwIWlUIclpPtlk5e75YWo/s1600-h/metrocard+toby.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 300px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg1u2kBlr_DG58yg5x8jLL-YePMwEpaj1Oe03WWhlzXBPnHwn6gHREZl13e3cZaLo2RxAyfjrt_JMM22Afxax3Odj5Rg6drOYtDUPEcDAylcQE52UbS3P9zAGBwIWlUIclpPtlk5e75YWo/s400/metrocard+toby.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5399699058160157410" /></a><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiLpIIGTz8pil42a-zHZkGCsfTkaOvZ0i_h04r2m4DzQQt2QKjQI3kBvQ9d_7v-6kNrlC9B8GGym55-MgVJLo_zSuF7keRkevLUvg2980NK_wAJIzKvSiwxOiZuXWvek1jXLExAnHCisR4/s1600-h/toby+and+pumpkin.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 300px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiLpIIGTz8pil42a-zHZkGCsfTkaOvZ0i_h04r2m4DzQQt2QKjQI3kBvQ9d_7v-6kNrlC9B8GGym55-MgVJLo_zSuF7keRkevLUvg2980NK_wAJIzKvSiwxOiZuXWvek1jXLExAnHCisR4/s400/toby+and+pumpkin.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5399699062137818770" /></a>Unknownnoreply@blogger.com19tag:blogger.com,1999:blog-8020196701240327546.post-32129462413674418712009-08-10T18:31:00.000-07:002009-08-10T19:16:35.327-07:00Thankful for every day<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj7EBgYAcpa3r2ZVA2NNbf0eQxRHEAEH4MhE7I4ElGMnZOAq0pJRND_VsLqsWsY9IGdjPo2-Zs4t7UhdhLwJxXeVFNiSsB0o0bFftBMm9P-E-1VnKyiW591kQcBoBYVnRhkGlUk3NfWWpM/s1600-h/3809077763_a068fd01a4_b.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 300px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj7EBgYAcpa3r2ZVA2NNbf0eQxRHEAEH4MhE7I4ElGMnZOAq0pJRND_VsLqsWsY9IGdjPo2-Zs4t7UhdhLwJxXeVFNiSsB0o0bFftBMm9P-E-1VnKyiW591kQcBoBYVnRhkGlUk3NfWWpM/s400/3809077763_a068fd01a4_b.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5368513291575046658" /></a><br /><br />Toby's summer has been full of sunshine, beach days, hot dog cookouts, puddle jumping, bike rides and ice cream. He's doing really well, finishing up his 10th cycle of ABT-751, with clean MiBG + CT scans and clear bone marrows. We are so very, very lucky.<br /><br />And yet, shouldn't this be the norm? Every child fighting this horrible disease deserves a summer to be a kid, without constant pain, toxic chemo, life-threatening surgery or worse. Sadly, so many of our kids are not experiencing summer like Toby. Mr. Inquisitive, dear wonderful <a href="http://www.princeliamthebrave.blogspot.com">Liam</a>, recently relapsed and is spending his third summer battling neuroblastoma. He is all of 5 years old. Sweet <a href="http://www.caringbridge.org/visit/evanlindberg">Evan</a> was receiving ABT like Toby, but a routine scan showed neuroblastoma in the brain. He just finished 17 straight days of radiation and will start intrathecal 8H9 antibody treatment soon. There are too many awful summers out there... almost every child we know is spending their summer fighting for life. <br /><br />Please think of these kids. And then, go hug your own children. Tell them how amazing they are and be thankful for every day.Unknownnoreply@blogger.com7tag:blogger.com,1999:blog-8020196701240327546.post-76982047085051114072009-05-05T19:49:00.001-07:002009-05-05T19:51:55.692-07:00walk<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEho7NHKejSnK-6aNCHO0P59ed7d8w5qLrfsJ6g5-KtKebBWLCMQJxbutFD5ZYPazrV8gmuFxuaAskgSd2OnDqyNeX37oi0D2Ykc0FZvPL6SOcoLbqF7NFOjmfDtOcqwkbPDyO2fIYly6mQ/s1600-h/cover.png"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 176px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEho7NHKejSnK-6aNCHO0P59ed7d8w5qLrfsJ6g5-KtKebBWLCMQJxbutFD5ZYPazrV8gmuFxuaAskgSd2OnDqyNeX37oi0D2Ykc0FZvPL6SOcoLbqF7NFOjmfDtOcqwkbPDyO2fIYly6mQ/s400/cover.png" border="0" alt=""id="BLOGGER_PHOTO_ID_5332538029258804322" /></a><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhUqNO5PF0I_C75QvOCpzprmHl8Zmw0e2-6wqmG7VLtPL_IRS1epJyPypIspqAgxM-9eoA7FSk6mBeYgLCGhkGNBhrow3nfVJbFxhbAfhjl9gop8JVawvB7jahcIXuWdddIlyFovyZFCaw/s1600-h/panel+1.png"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 172px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhUqNO5PF0I_C75QvOCpzprmHl8Zmw0e2-6wqmG7VLtPL_IRS1epJyPypIspqAgxM-9eoA7FSk6mBeYgLCGhkGNBhrow3nfVJbFxhbAfhjl9gop8JVawvB7jahcIXuWdddIlyFovyZFCaw/s400/panel+1.png" border="0" alt=""id="BLOGGER_PHOTO_ID_5332538036325701906" /></a>Unknownnoreply@blogger.com4tag:blogger.com,1999:blog-8020196701240327546.post-35491463631044246472009-05-02T19:55:00.000-07:002009-05-02T20:24:21.744-07:00ReinventWith all good intentions, my parents had me tested when i was 5 years old. I went into a room with a two-way mirror, an old man, and a clay playset of a village in the mountains. <br /><br />The man's white hair scared me and I cried for my parents. I couldn't see them through the magic window, only a reflection of myself, pinched and small with worry. The man smiled kindly, coaxing me to form puzzles, count blocks and put pictures in order. Then he brought out the playset. There were mountains sloping into the sea, small square houses and a river. He asked me, "How do you get from the sea to the mountains? What's the shortest way back home?" And I was momentarily distracted, losing myself in landscape.<br /><br />These were the colors: indigo water, red mountains, blue grass. For some reason they burned themselves into my memory,<br />reappearing at the edges of dreams many years later. But I never saw real mountains like that, or grapey water.<br /><br />Until I travelled to Eilat. There was something strange about the sea cutting a gash into moon-like desert. It took 3 days to locate the landscape, but when I dove into the Gulf of Aqaba, the sun slanted down on the red mountains, the water tasted like grapes and the playset came alive.<br /><br />The colors were real after all. and I found a way to change what had scared me into something that delighted me. After 13 years I reclaimed the old memory and created a new one.<br /><br />This is what I want for Toby. The time to grow beyond this moment, the chance to reimagine and reinvent his life. To find what he's looking for. Or even better, to create it.<br /><br />Last week he came home from school with the plans and drawings for a REMOTE CONTROL TRAFFIC AVOIDER. He drew our house with a hatch in the roof. Alongside was a sketch for a backpack with propellor and control panel. The buttons and dials were labelled 1mile to 12miles; the touchscreen had a keyboard. He excitedly explained that each of us would have a backpack and we could enter a destination like "school," where i would drop him off, before punching in "work." The backpack<br />would remember where each place was located, so that we would never be late.<br /><br />Or his plan for a PARTY TRAIN. One car has donuts and hot chocolate. Another car has a lending library of dvds. The entire train is computerized, and most importantly there's groovy music throughout.<br /><br />And then yesterday, he pulled out some poems from his folder and said, "Mommy, this poem is for you. It is beautiful." He stood on the couch and read:<br /><br /> You love the roses -- so do I. I wish<br /> The sky would rain down roses, as they rain<br /> From off the shaken bush. Why will it not?<br /> Then all the valley would be pink and white<br /> And soft to tread on. They would fall as light<br /> As feathers, smelling sweet; and it would be<br /> Like sleeping and like waking, all at once!<br /> --George Eliot<br /><br />And then he said, "But this is my favorite. It is so funny:"<br /><br /> This is just to say<br /> I have eaten<br /> The plums<br /> that were in<br /> the icebox<br /> and which<br /> you were probably<br /> saving<br /> for breakfast<br /> Forgive me<br /> they were delicious<br /> so sweet<br /> and so cold<br /> --William Carlos Williams<br /><br />Oh, child of my heart! How did you know it was your mother's favorite too?<br /><br />+++++<br /><br />Things are going really well for Toby. He is playing soccer, riding his new bike, grooving to the music. In-between he has finished his 4th cycle of ABT-751, with minimal side effects. He has once-weekly visits to the hospital for blood counts and follow-up, with scans every 3 months. The day-to-day almost-ordinariness of our lives is a revelation and a joy. But we know that it can change in a moment. So many of our friends have recently relapsed; it happens every day and we watch helplessly as formerly vibrant children wither into frailty and despair. We worry.<br /><br />Unfortunately, neuroblastoma doesn't go away, as so clearly spelled out by <a href="http://www.willlacey.com/">Will's Dad:</a><br /><br />Neuroblastoma is the most common cancer in INFANTS. The average age is less than 3 years old at diagnosis. Five years after being diagnosed nearly half of these kids are dead. HALF.<br /><br />Kids with high risk disease have to undergo the most intense chemo available and even after radiation, chemo, surgery, stem cell rescue, and immunotherapy, about 30% survive for 5 years. If neuroblastoma comes back (relapse) or stops responding to therapy (refractory, like Toby), it is usually viewed as a terminal illness.<br /><br />Most children with neuroblastoma will be DEAD long before any government funding will be secured and utilized to create treatment options. Money for a cure is needed today to continue giving not just HOPE but real clinical options to save our kids from dying.<br /><br />The five year survival for all kids with neuroblastoma is about 55%. This is when you include high risk kids and even the infants with tumors that self resolve and others who just have to have a tumor removed with no chemo.<br /><br />55%.<br /><br />What does that look like?<br /><br />Let's say an average kindergarten class has 24 kids. Now assume that they are all diagnosed with neuroblastoma on the first day of school.<br /><br />Five years later, when they are about to start 5th grade how many kids in that class would even be alive?<br /><br />13 alive (13.2 to be exact)<br /><span style="font-weight:bold;">11 dead</span><br /><br />Now, lets assume that instead of those 24 kids being diagnosed with NB on the first day lets pretend that they all are diagnosed as relapsed/refractory neuroblastoma (like Toby) on the first day of school.<br /><br />About how many kids would graduate high school?<br /><br />1 student alive....maybe.<br /><span style="font-weight:bold;">23 kids dead</span><br /><br />Less than 5% long term survival of relapsed NB.<br /><br />For that 1 student to even make it he/she would have had to undergo the most intense chemotherapy treatment imaginable. He/she would (most likely) be sterile, severely hearing impaired, bearing multiple scars from multiple surgeries, still on some form of therapy, receiving special services, and very UNLIKELY to live long enough to even make it to high school. If NB did not come back, the risk of a secondary cancer - FROM THE TREATMENT - would be high due to radiation and certain chemotherapy agents.<br /><br />How is this acceptable? Where is the outrage? The action? <br /><br />It is 2009 and we live in the greatest nation in the history of planet Earth and yet this disease that <span style="font-weight:bold;">accounts for 7% of pediatric cancer cases ALSO accounts for 15% of pediatric cancer deaths???</span><br /><br />It is the most common cancer in infants....in INFANTS...yet nothing has been done about survival. It would be pathetic if it were not so tragic.<br /><br />I don't even know if a word exists to properly describe this absurd reality.<br /><br />And now, as my son strives to be the 1 kid to survive treatment out of his relapsed NB classmates the one thing that stands in our way is, of all things, money.<br /><br />++++++++<br /><br />A week from today, on Saturday, May 9, we'll be walking in Central Park to raise funds for neuroblastoma research and treatment at Memorial Sloan-Kettering. If you are in the NY area and can join us on Toby's Team we would be thrilled and grateful. If you can add some money to the pot, well that would be amazing. Please visit <a href="http://www.walkforkidswithcancer.org/">www.walkforkidswithcancer.org</a> to learn more or email Reva at walkwithtoby (at) gmail.com. And please consider making a donation to <a href="http://www.bandofparents.org/">Band of Parents</a> or <a href="http://www.magicwater.org/">MagicWater</a> or <a href="http://www.nbhope.org/">CNCF</a> or <a href="http://www.kidcancer.org/">Solving Kids Cancer,</a> organizations with a common cause to help save children's lives.<br /><br />Thank you.<br /><br />love,<br />Mooki + Stephen + Yoni + TobyUnknownnoreply@blogger.com2tag:blogger.com,1999:blog-8020196701240327546.post-7558407075858570992009-04-11T19:29:00.000-07:002009-04-11T19:54:33.414-07:00Erin<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjwlkufU4bNfJv71qmtmKDqBJDaV65tsrQDy6SnaxdWpWp4FXh72CEnRhVYgXgoJf5VzPL7xArOvdT9gpVtU7SM3Dct7LC0UJHr1uE8Ox7bF2SbbC45loxg-q1RHYqEZDWLHBBUA1DKVPU/s1600-h/Mo_ranch_4.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 333px; height: 222px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjwlkufU4bNfJv71qmtmKDqBJDaV65tsrQDy6SnaxdWpWp4FXh72CEnRhVYgXgoJf5VzPL7xArOvdT9gpVtU7SM3Dct7LC0UJHr1uE8Ox7bF2SbbC45loxg-q1RHYqEZDWLHBBUA1DKVPU/s400/Mo_ranch_4.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5323632715193246210" /></a><br />The world lost a radiant child on Thursday. <a href="http://erinbuenger.blogspot.com/">Erin Buenger,</a> 11 years old and quite likely the first woman president of the U.S. She was brainy, compassionate, beautiful and absolutely crackling with energy and zest. Soon after Toby was diagnosed I found her mother's incredible blog and cannot tell you how many times Erin's attitude turned me around. She did great things in her short life. We grieve with her family.Unknownnoreply@blogger.com4tag:blogger.com,1999:blog-8020196701240327546.post-14098922762994693422008-12-04T20:47:00.000-08:002008-12-04T21:02:24.556-08:00Death and CookiesIn the 20 months since Toby got sick, Stephen and I have watched 30 children die. They are children we shared rooms with and children we came to love through their parents’ writings. Their names are Gus, Jack, Max, Katie, Lillie, Lucas, Penelope, Brody. Their parents cope with unfathomable grief. <br /><br />We think about death a lot, over here. It is forever knocking at our door, lingering in corners, forcing us to ask, “is today the day?”<br /><br />Death has come into our life in an unnatural way, through the wide eyes of a beautiful child, disguised in creamy skin and laughter that sounds like bells. Death winks at the most horrifying moments. Like when Toby says, “Next August 26th, I want to come back here (the beach in Sanary-sur-Mer, France) and do exactly what we’re doing now, ok mommy?”<br /><br />Recently I saw an old, dear friend. We haven’t been in touch since Toby got sick, she lives overseas, but she reads this blog. She was the first person in 20 months to ask if we think about Toby’s death. It took my breath away and I laughed with relief. Yes, we do.<br /><br />But we also focus on the joy of each day. We stare death in the face, make tea, eat chocolate, plant flowers, tickle each other and spend a lot of time playing with trains on the playroom floor. We are fully present, grateful for our children, our family, our community. Death be damned.<br /><br />So now you know what we think about. And if I haven’t scared you away yet, perhaps you want to help. I have a simple way, and I’m not kidding: Buy Cookies.<br /><br />Cancer kills more children than any other disease. I’ve said it before, but time is running out for our kids. Every 16 hours a child with neuroblastoma dies. And lack of research dollars bars the way to a potential cure. By buying cookies, you can help to level the playing field. Please visit <a href="http://cookiesforkidscancer.org">cookiesforkidscancer.org</a>, order something delicious, and give our children a chance at life.<br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhQt0Ub0KVUejqvru9D485qhIWDi4Mo8H-yrkKVJy0Y67NC2lp5ltbhbiOaNciTQkV8NZgdBsmxtVdXSDTshCIPCcDJbedhtSGofb8PRgreoX8xN9ltxHuIdC1l_s4vo0FzT3rEzZw44LA/s1600-h/P1010074.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 286px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhQt0Ub0KVUejqvru9D485qhIWDi4Mo8H-yrkKVJy0Y67NC2lp5ltbhbiOaNciTQkV8NZgdBsmxtVdXSDTshCIPCcDJbedhtSGofb8PRgreoX8xN9ltxHuIdC1l_s4vo0FzT3rEzZw44LA/s400/P1010074.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5276166615641253986" /></a><br /><br />Thank you.<br /><br />Love, <br />mooki+stephen+yoni+tobyUnknownnoreply@blogger.com15tag:blogger.com,1999:blog-8020196701240327546.post-53279722499951209762008-11-24T20:19:00.000-08:002008-11-24T20:29:20.331-08:00ExperimentsOne of Toby’s favorite projects is making concoctions. Sometimes this means squeezing tiny vials of food coloring into glasses of water, watching as the dyes swirl into each other. Most days though, we make semi-edible, made-up recipes for our invisible bug friends. These are the ultimate free-form meals, experiments really, determined not by cuisine or season, but simply by ingredients foraged and found. That sad, wizened mushroom with a bit of sheen that’s been rolling around the crisper drawer for weeks? Perfection. The coffee grounds from yesterday’s breakfast? <span style="font-style:italic;">Yes.</span> How about a few shakes of cinnamon, melted butter and a can of diet coke? Mmmm. Cornstarch and its properties are much admired, so we add a few scoops "to make it creamy." Water and oil are measured, then dispensed, as are sugar, chocolate syrup, beans and ketchup. We never know what we’re going to end up with, but we always spread it into a loafpan and bake at 350 for about 35 minutes. And no matter the taste or color or smell, Toby’s imaginary bugs are always happy with the results. Our experiments are masterpieces.<br /><br />This week we experiment on Toby. <br /><br />Since February, the team at MSK has treated Toby with what is essentially a relapse protocol: 9 cycles of irinotecan/temozolomide, punctuated by two doses of rituxan and cyclophosphamide, in an effort to lower his HAMA (human anti-mouse antibody) level. Scans have thankfully been clean. Kindergarten began, as visits to the hospital dwindled. Toby started drawing charts and challenging us to races through the house. He built an elevator out of boxes and string, and wrote letters to his friends on an old banged-up typewriter. There have been lots and lots of belly laughs, a mohawk haircut and a G-train costume for Halloween.<br /><br />But recently our doctors decided that further chemotherapy might pose a substantial risk of secondary leukemia. Since then, Toby has been taking accutane as a stopgap measure, waiting until he can receive more 3F8 antibodies. <br /><br />Now Stephen and I are not medical professionals, but we know that without transplant and with only 2 cycles of 3F8 under his belt, the chances of accutane being effective are slim. Just last month we had a horrible scare with sudden onset of severe neck pain, just like at diagnosis.<br /><br />Refractory Neuroblastoma is famously difficult to treat. There is no single accepted course of treatment and parents are generally expected to participate in determining the best therapy for their child. It’s an excruciating process and <a href="http://www.willlacey.com/2007/05/i-hope-i-know-what-i-am-doing.html">Will’s Dad</a> has written about it much more eloquently than me. <br /><br />So after much research and many questions, tomorrow we drive to the Children’s Hospital of Philadelphia where Toby will start a clinical trial with an investigational drug called ABT-751. We don’t know if it will work, but we hope it can keep the cancer away and prevent tumor growth until further antibody therapy becomes possible. <br /><br />We hope and pray that the results will be as good as our kitchen concoctions.Unknownnoreply@blogger.com12tag:blogger.com,1999:blog-8020196701240327546.post-45106128092071418962008-09-14T19:51:00.000-07:002008-09-14T20:24:45.750-07:00Three WishesOh, <span style="font-style:italic;">hi</span>. I’m so glad you’re still here. <br /><br />The combination of glorious summer, massive writer’s block and too much death has kept me away. But I’m back, and will try to update with more regularity. I’m sorry for any worry I caused. And honestly, you deserve better. You’ve been so kind and good to us over the last 17 months, and then I go AWOL on you. Not nice. So are we still friends?<br /><br /><span style="font-weight:bold;">Wish 1</span><br />In July, we spent a few days in God’s square mile at the Jersey shore. Ocean Grove is home to the Methodist Camp Meeting Association and a slice of delicious bona-fide Americana, if you like ice cream, religion and beach. Thanks to a dear and astute friend (hi Martha!), we revived ourselves with salt spray and spiritual intent. <br /><br />My aim was profane: get a tan, come hell or high water. But the beach was closed during church, which meant all the time. And I was mesmerized by the Great Auditorium, a beautiful and huge house of prayer, made totally out of wood, with sliding barn doors, curved ceilings and seats for 6000. On Sunday evening at sunset, Toby and I found ourselves inside, where “so be ye holy” blinked in old-timey lights above the altar and a rock band played on stage.<br /><br />The service was unlike anything I’ve ever experienced: accessible, immediate, simple and incredibly emotional. There were no prayer books, but there was a huge video screen with lyrics and sweeping photos. People stood or sat, some danced. And there were many, many swaying hands in the air. Toby grooved to the constant music. And he said, “Mommy, do it like that,” pointing to the family in the front row who were raising their hands to God. So I did. <br /><br />The doors were wide open, the sun spilled in. And then this:<br /><blockquote>“Mommy, you know what?”<br />(<span style="font-style:italic;">OK, what have I done? He’s about to accept Jesus as his personal savior.)</span> <br />“What, sweetie?”<br />Pause. <br /><span style="font-style:italic;">(Here it comes. How do I respond?)</span><br />“I really like the drummer.”<br />(<span style="font-style:italic;">Ba-da-dum.)</span><br />“Me too, sweetie.”<br /><span style="font-style:italic;">(Whew)</span><br /></blockquote><br />And then the band left the altar/stage, and things quieted down. Toby wasn’t in any rush to leave, so I settled back. The minister introduced the time of silent prayer with heartfelt and intimate words. But first the video screen faded to black with white type. It said (and this is from memory, so I’m not doing it justice):<br /><br /><blockquote>“Are you here? <br /><br />Really here?<br /><br />Do you think the music was too loud?<br /><br />Are you thinking about your day tomorrow?<br /><br />Maybe you don’t feel comfortable.<br /><br />Maybe you’re tired. Maybe you’re ready to go home.<br /><br />God is here. Are you?”</blockquote><br /><br />Quiet, so quiet.<br /><br />And then time and space opened up for me at that liminal moment, when all is possible. I let the prayer wash over me, hungrily, gratefully, putting my heart and words together before the moment passed. And there was Toby with Gus and Max and Liam, and all the children with neuroblastoma who have become my children. And I asked the God that I don’t always believe in to please lighten their load. <br /><br />As I blinked away the tears, I stole a glance at Toby. His eyes were shining, his lips curved into the tiniest smile. <br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi7VE5jVMQlBNuqM94Q6MwgKwAAhkqhQf5mZsrXGDnIgPZzCIP3Hj1PABGjSJ-0oaYWp7B3S9R3IxwUOBe_FeuaQ0-QYNPAOIzXs96twaG-_4CkqJU2xJtRxLi8DXTwfTddI9IlbomsysQ/s1600-h/P1010224.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi7VE5jVMQlBNuqM94Q6MwgKwAAhkqhQf5mZsrXGDnIgPZzCIP3Hj1PABGjSJ-0oaYWp7B3S9R3IxwUOBe_FeuaQ0-QYNPAOIzXs96twaG-_4CkqJU2xJtRxLi8DXTwfTddI9IlbomsysQ/s400/P1010224.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5246077188489842354" /></a><br />And then he said,<br /><blockquote>“Mommy, do you know what I wished for?”<br /><br />And I thought to myself, <span style="font-style:italic;">yes a prayer IS a wish.</span><br /><br />“I’m going to tell you my wish even though you’re not supposed to tell wishes. Because I want you to remember it.”<br /><br />“OK. But you don’t have to tell me if you don’t want to.”<br /><br />“Mommy, listen. I wished to live four times on earth. I want to live four times."<br /><br /> And then he paused, thinking about it, checking to see if he had put the right words to his deepest, most private yearning. I had my heart in my throat, afraid to breathe, willing myself to remember every second. And then my almost-5-year-old continued: <br /><br />“Yes, Mommy. I wish to live. Because I really like it here.”</blockquote><br /><br />*****<br /><br />Toby is still in treatment. Since my last post he has endured 4 more cycles of chemo. He was the third child at Memorial Sloan-Kettering to undergo an experimental treatment utilizing Rituxamab and Cyclophosphamide, in an effort to knock down his HAMA (the immunity he developed to the 3F8 monoclonal antibody treatment). We made two visits to the urgent care center with fevers, and spent four days inpatient. He has become almost completely comfortable with having his port accessed and de-accessed. He has had more hearing loss. And he scared everyone last week with a very high LDH level, which resulted in emergency scans. Thank God, on Wednesday we found out that all scans were negative for neuroblastoma. <br /><br />Oh, and he celebrated his 5th birthday (<span style="font-weight:bold;">wish #2</span>) <br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLU5hmUfWUmIcI02LtXl460OGqpnt3Wc2OOjQfZdEgy2iS2sAJN0ynla-_lYsylz1SDzusJDTt9yk7CeVChdxJze49f8xkJRbZhc8kCgurmNh0a-oGLUUTpoqIVkGuTq67jT2oLyR8UjU/s1600-h/P1010054.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLU5hmUfWUmIcI02LtXl460OGqpnt3Wc2OOjQfZdEgy2iS2sAJN0ynla-_lYsylz1SDzusJDTt9yk7CeVChdxJze49f8xkJRbZhc8kCgurmNh0a-oGLUUTpoqIVkGuTq67jT2oLyR8UjU/s400/P1010054.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5246078150186624578" /></a><br /><br />and spent a week in France on his make-a-wish trip (<span style="font-weight:bold;">wish #3</span>, more to come in next post!) <br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhcMAT7O9HgwfllT4tkEtFkzL5YoNraj57G9XqNdNb4iaErbAzKI8RVs4YUtBRsbWKN62ITXxT9aM3Ft7w-RqH15zbsmaV39BRq1UGHaWvWEsMI-FFjbXhH0TLlhwPelw7IVvAKZnBrlSU/s1600-h/P1010068.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhcMAT7O9HgwfllT4tkEtFkzL5YoNraj57G9XqNdNb4iaErbAzKI8RVs4YUtBRsbWKN62ITXxT9aM3Ft7w-RqH15zbsmaV39BRq1UGHaWvWEsMI-FFjbXhH0TLlhwPelw7IVvAKZnBrlSU/s400/P1010068.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5246078945464553746" /></a><br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh5cv4hxLIZBZo-oulDnBC3B1y5d1O-r4mi3QpLrAqd8-aagx4lVxgh5bR7mj_NWOb-G2RuQ38c1Y9Ua5FM58nM4mT4NJZYl2BiFxepInuRESBCrN0jppsOp0OOmmQ5lh2HqOtVJbRCxnU/s1600-h/P1010166.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh5cv4hxLIZBZo-oulDnBC3B1y5d1O-r4mi3QpLrAqd8-aagx4lVxgh5bR7mj_NWOb-G2RuQ38c1Y9Ua5FM58nM4mT4NJZYl2BiFxepInuRESBCrN0jppsOp0OOmmQ5lh2HqOtVJbRCxnU/s400/P1010166.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5246080659489203506" /></a><br /><br />and started kindergarten(!!!). He has hair the color of sun-kissed wheat, and is up to 48 pounds. He reads SpongeBob comic books, takes showers by himself and eats at least 2 italian ices a day. He has a new invisible bug friend named Mercator, and he’s learning Spanish at school. He is an awesome little boy. <br /><br />The NB team wants to stop the irinotecan/temozolomide chemo, because of the risk of Toby developing a secondary cancer. They will meet on Tuesday to come up with a new plan. I promise to keep you updated.<br /><br />Love,<br />mookiUnknownnoreply@blogger.com22tag:blogger.com,1999:blog-8020196701240327546.post-35473594360293576762008-06-25T19:49:00.000-07:002008-06-25T21:14:09.104-07:00If it's Thursday, it must be surgeryTomorrow morning at 7 am, Toby will be anesthesized and have the central line taken out of his chest, where it has lived for the last 14 months. We've gotten used to his tubies and Toby plans to ask Dr. Laquaglia if he can take them home in a little plastic bag.<br /><br />More than a year ago as we sat in the nuclear medicine basement at NYU my brother tried to explain what a central line looked like. I remember his strange words, gently falling on uncomprehending ears: "it's like spaghetti noodles, coming out of his chest." With noodles gone, Toby will be able to shower and swim, he won't have to endure painful bandage changes, and we'll finally be able to retire the safety pins that have riddled all his shirts with crazy patterns of holes.<br /><br />The line will be replaced by an under-the-skin mediport, and a few hours later Toby will receive chemo through a new delivery system.Unknownnoreply@blogger.com16tag:blogger.com,1999:blog-8020196701240327546.post-91776374126103455182008-06-23T09:32:00.000-07:002008-06-23T09:59:04.353-07:00Subject: MIBG & MRI - GREAT!I cannot wait even a minute to share our good news. Here's the email from Dr. Kushner:<br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEik6PV1G2DkUhz74NrDg4NEYzoNDBXR9kIkIhSXNQdqHXToLXXyFti90akhEYMfn4rbnkB3EgZgnmhF-kBwXya6sqjdE9Og1cDT3nnu53qUhTl2Z0fZeCEkUyuP-FkAVp3AeJbzJnAIVc4/s1600-h/Picture+19.png"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEik6PV1G2DkUhz74NrDg4NEYzoNDBXR9kIkIhSXNQdqHXToLXXyFti90akhEYMfn4rbnkB3EgZgnmhF-kBwXya6sqjdE9Og1cDT3nnu53qUhTl2Z0fZeCEkUyuP-FkAVp3AeJbzJnAIVc4/s400/Picture+19.png" border="0" alt=""id="BLOGGER_PHOTO_ID_5215116472500249010" /></a><br />Revel in it.<br />We are so, so, so grateful. Thank you for believing in Toby.<br />love,<br />mooki+stephenUnknownnoreply@blogger.com29tag:blogger.com,1999:blog-8020196701240327546.post-83554963222799722362008-06-18T19:05:00.000-07:002008-06-18T19:54:58.075-07:00Prayers wanted<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh3NQac4V36NQfRIt72hA6W0bRpjKseR2WJHZrJam1BEcQ25KEo6fYlmmP5gCpajxbKq6G07OJZ62VFcusb8kqeouTTTnk4T36XV0L9NfCifFQf6BCULsYZwZVf0M5y-XeFbdGcEzbGf2s/s1600-h/P1010205.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh3NQac4V36NQfRIt72hA6W0bRpjKseR2WJHZrJam1BEcQ25KEo6fYlmmP5gCpajxbKq6G07OJZ62VFcusb8kqeouTTTnk4T36XV0L9NfCifFQf6BCULsYZwZVf0M5y-XeFbdGcEzbGf2s/s400/P1010205.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5213420144918849906" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiO-6jf_ihFhgrFHIcmWZtSgaZQDqImszDa5RB9Yd0SLLNiHnpxC_O1rB_PZ13MlJYq2DF9dX7sxAfGdRxYW42raGwGiWB4g7Lwxs6m2xGQPxLet5xdcyDqwZBldLKL5VNOTWk04CbIbLQ/s1600-h/P1010209.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiO-6jf_ihFhgrFHIcmWZtSgaZQDqImszDa5RB9Yd0SLLNiHnpxC_O1rB_PZ13MlJYq2DF9dX7sxAfGdRxYW42raGwGiWB4g7Lwxs6m2xGQPxLet5xdcyDqwZBldLKL5VNOTWk04CbIbLQ/s400/P1010209.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5213420164564673330" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgDCU-JLSFehXPeprUv13PWEMoAFyJvw4iKE7zbWaRZimCLJlCrnOMyYx6cXToF4gEYErS-JsNV46IcY8d96w8aslM8UTyr7hU6QlmnmsLhbcYk2DzUuklDwqfoivtUvUQgcIj_7EUToSI/s1600-h/P1010214.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgDCU-JLSFehXPeprUv13PWEMoAFyJvw4iKE7zbWaRZimCLJlCrnOMyYx6cXToF4gEYErS-JsNV46IcY8d96w8aslM8UTyr7hU6QlmnmsLhbcYk2DzUuklDwqfoivtUvUQgcIj_7EUToSI/s400/P1010214.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5213420171594343954" /></a><br />If you pray or meditate or hope, we could sure use some of your positive energy tomorrow. Starting at 8 am, Toby will undergo a full 2-day workup of neck, abdominal and pelvic CTs, a radioactive mibg injection, four bone marrow biopsies and aspirations, a brain MRI and an MiBG nuclear scan. <br /><br />We are in high "scanxiety" mode this week, especially after Toby's complaints of pain 10 days ago. This disease is relentless, and we have learned to brace ourselves for the worst, while hoping for the best. Hope with us.<br /><br />love,<br />mooki+stephenUnknownnoreply@blogger.com23tag:blogger.com,1999:blog-8020196701240327546.post-71226459129047111192008-06-12T20:28:00.000-07:002008-06-12T21:09:51.897-07:00Things I thought I knew<strong>You can’t be in two places at the same time. Or, work and chemo don’t mix.</strong><br />On a family roadtrip in 1974, we drove over the state line between Kansas and Nebraska. My father grudgingly pulled off the highway so that we could snap a quintessentially American state-straddling photo. My mother, a child of circumscribed geography, was laughing. She told me that I really could stand in two states at once. After much prompting, I took a tentative step over the border and smiled for the camera. <em>Click.</em> Truth is, I was uneasy in that soft, knee-high prairie. If my left foot was in Nebraska and my right foot was in Kansas, where was my stomach, my head, my heart? What space did they fill? And could that invisible, improbable line somehow cut me in half? I thought about it for a long time, through Missouri and Iowa, until the familiar blue roof of IHOP came into view, and I forgot the funny feeling in a stack of silver dollar pancakes. <br /><br />I’ve wondered about that photo lately, as we negotiate the geography of one foot in “normal,” the other in “sick.” Toby’s scans were clean in April. He is in school and loving every second. Stephen and I spent some time with Yoni, planted a garden, bought a couch, and even took the boys to Israel for 6 days. Life is good, really good. We are SO thankful. And I’ve been back at work since December. But while all this was going on, Toby endured 4 more cycles of chemotherapy, breakthrough shingles, breathing treatments, thrice-daily disgusting medicines and constant blood draws. Toby’s counts are good for a cancer kid, but his hemoglobin (the part of red blood cells that carries oxygen) is consistently lower than normal. We are always on the lookout for bruises or bleeding that might indicate low platelets. We keep the barf basins in strategically placed locations throughout the house. And every bump, mole and blink is paid attention to and duly noted. Toby has been complaining recently of neck pain, which is most worrisome and will be addressed next week in an early round of scans and bone marrow biopsies. He still spends 10-12 days a month in the hospital. In our world, it’s Beansprouts in the morning and Memorial Sloan-Kettering Cancer Center in the afternoon. And I go to work every day, while Stephen holds our little boy’s hand as the irinotecan drips into his veins. <br /><br /><strong>Heaven does not exist.</strong><br />I could never really picture it until I read The Lovely Bones by Alice Sebold. It made me think about the different ways my own parents cope with their grief. <br /><br />My mother has been going to her father’s grave for over 20 years. She spends time cleaning and refreshing the plantings, but she mainly goes to talk. She tells Manek about her days, asks him questions, gives him news of his grandchildren. And while the loss doesn’t abate, she carries on the relationship. Manek continues to live through her actions. My father deals with things differently. He has gone to synagogue on the anniversary of his mother Giza’s death, but has told me that he feels a heavy emptiness. He does not speak to her, yet I know that he experiences her loss acutely and always. I miss my grandparents something fierce. But I don’t think of them in heaven. They are here with me.<br /><br />But this spring we lost so many children to neuroblastoma: <a href="http://www.caringbridge.org/nc/justin/">Justin</a>, <a href="http://www.caringbridge.org/visit/austinmelgar">Austin</a>, <a href="http://www.caringbridge.org/visit/cooperproscia">Cooper</a>, <a href="http://www.caringbridge.org/visit/courtneysaunders">Courtney</a>, <a href="http://www.caringbridge.org/fl/emilyadamson/">Emily</a>, <a href="http://www.caringbridge.org/canada/spencer/">Spencer</a>. Beautiful, innocent, magical children. There are simply no words to relay the depth of sadness and pain we feel for their families. And one night, after kicking the wall and crying in the shower and cursing God, I re-read The Lovely Bones, and heaven started to seem more possible. <br /><br />Please honor their memories by visiting their sites.<br /><br /><strong>I caused Toby’s cancer.</strong><br />Since the day of diagnosis, I have harbored a not-very-secret, paralyzing, almost-too-painful-to-think-about fear.,. that something I did or ate or breathed while pregnant gave Toby cancer. When I couldn’t make that logically work, I questioned our loft in Brooklyn. For 15 months we lived in an area of light industry and after Toby got sick we had the apartment tested for everything under the sun. As you know, the findings were not good: elevated levels of metals and mold. We moved quickly, first to the Ronald McDonald House, then to two different furnished sublets and finally into our wonderful little house on Temple Court. <br /><br />One question plagued me wherever we moved. Did we ignorantly subject our child to a substance that could have caused this horrible, horrible disease? If you only knew how much I think about this; it’s pretty much a constant awful voice inside. <br /><br />But the doctors have been adamant that Toby’s cancer is not due to environmental stressors. They have always maintained that changes to Toby’s cells could have happened very early on in development and might have already been present at birth. And others have reminded me that childhood cancer is usually not due to environmental issues because the children are so young when diagnosed. Well, a few weeks ago researchers made a major discovery. They have established that neuroblastoma is a genetic disease. <br /><br />Since I’m Jewish I’ll carry the guilt no matter what, but this news is a comfort nonetheless.<br /><br /><strong>95 degrees and sunny automatically means a beach day.</strong><br />I’m a big-time sun worshipper. Although I don’t do the iodine/butter combo anymore, I can think of nothing better on a summer day than a trip to the beach. But Toby still has his tubies and we’ve made adjustments. On Fridays he goes to the Y with his class, spending the hour dangling his feet in the water and chatting up his teachers. On weekends we steer clear of the sprinklers in the park. And I’ve accepted that this year pale skin is the new black (hear that, Mirm?). But all that is about to change. On June 26, Toby will have his tubies removed and replaced with an under-the-skin mediport. The pool, the beach and a REAL bath will be possible for the first time in 14 months. <br /><br /><strong>There’s a beginning, middle and end.</strong><br />I can’t say it better than <a href="http://erinbuenger.blogspot.com/">Vickie.</a>!<br /><br /><em>I'm glad Erin has great days. It's a whole lot easier than at diagnosis when we would check her into the hospital and chemo drips would run twenty-four hours a day. We lived in the clean zone, protecting her from infections and other bugs that could lay her low. We signed informed consent forms virtually guaranteeing hearing loss, sterility, and organ failure. Everything we encountered was new and frightening.<br /><br />But in some ways our situation now is much, much harder. When we started this game in July 2002 Erin's doctor handed us a road map that outlined the steps we would take to get Erin cancer free. We knew the process and approximately how long it would take. Because there was an endpoint, I could treat it like a project. I teach project management. Projects start. They end. They attempt to accomplish specific objectives. You manage them to completion. You may encounter set backs, but you re-group and keeping working towards the goal. That's what we did, and we did it well.<br /><br />Now, here in relapseland, particularly in tumor progression relapseland, the bliss is all temporally finite. We start chemo again tomorrow. We hope to continue starting chemo every three weeks for a long time. The only obvious end points are set by more disease progression, unacceptable chemo toxicity, or a switch to some other treatment option (which we hope would be effective, but yield more good days).<br /><br />We hope that the bad days aren't too bad and that the good ones are blissful. We hope to keep fooling ourselves that we have the energy and stamina and good luck to make it. That scientists can move fast enough to build the silver bullet that stops neuroblastoma in its tracks. That Erin's body and spirit stays strong. That Erin's tumor stays stupid and easily managed. That there enough good days to make the bad days tolerable.<br /><br />We now live with more urgency and passion, and unexpectedly, much more calmness and certainty. I read it on a Nike poster in the gym: There Is No Finish Line.</em><br /><br /><strong>I didn't like my prom.</strong><br />but then i came <a href="http://abcnews.go.com/Health/story?id=5040470&page=1/"> here</a><br /><br />And I obviously don't know much about anything.Unknownnoreply@blogger.com8tag:blogger.com,1999:blog-8020196701240327546.post-32528808252170233092008-05-26T19:20:00.000-07:002008-05-27T18:33:25.528-07:00Walking<iframe align="center" src="http://www.flickr.com/slideShow/index.gne?group_id=&user_id=59429140@N00&set_id=72157605271034956&text=" frameBorder="0" width="400" height="400" scrolling="no"></iframe><br/><small>Created with <a href="http://www.admarket.se" title="Admarket.se">Admarket's</a> <a href="http://flickrslidr.com" title="flickrSLiDR">flickrSLiDR</a>.</small><br /><br />Thank you so much to everyone who walked with Toby in support of all the little children battling this horrible disease. Kids Walk raised more than $125,000 for NB research. Over 400 people participated in Central Park, with many more sending in donations online. It was such a day of hope! A huge thank you to Shirley Staples, who oversees the walk with legions of NYC high-school students. And a personal shout-out of love and admiration to Reva Grossberg, who created Toby's Team. It was an honor to walk with you.Unknownnoreply@blogger.com5tag:blogger.com,1999:blog-8020196701240327546.post-73796510062250656102008-04-17T20:21:00.000-07:002008-04-17T20:52:29.628-07:00365.Today is one year. <br /><br />April 17, 2007: the day our lives changed forever. And one year later, after 2 surgeries, 10 week-long rounds of chemotherapy, more than 50 cycles of radiation to abdomen, spine, upper arm and neck, after countless hospitalizations, 15 days of 3f8 immunotherapy, a month of shingles, and hundreds of injections, we have some good news. We know that you don’t usually visit this blog to whoop it up, but today is different. <br /><br />Today, Toby is clean.<br /><br />The CT and MiBG scans showed no signs of neuroblastoma. The bone marrow biopsies and aspirates showed no cancer cells. And the urine results are normal.<br /><br />Toby has no evidence of disease.<br /><br />So what’s the possibility of having a giant love-fest in Prospect Park, where we all whirl around and eat lots of food and wine, hug each other and sing praises to God, friends, doctors, nurses? Where Randy sings and the sun shines and children laugh? Where we feel the power of love and hope and community? We are SO there.<br /><br />Toby most likely has cancer cells still lurking in his body. Since neuroblastoma is aggressive, with an extremely high relapse rate, doctors don’t speak of remission. So treatment will continue unchanged: another round of chemo at the beginning of May, with an attempt to harvest more stem cells on April 28. And we wait for Toby’s hama level to come down. <br /><br />But today we celebrate, with all of you.<br /><br />*******<br /><br />An email from yoram, the cancer doc:<br /><br />-----Original Message-----<br />From: Yoram <br />Sent: Thu 4/17/2008 12:04 PM<br />To: Saltzman, Mooki<br />Subject: anniversary<br /> <br />mookus,<br /> <br />you and your gang have lived through a horrendous year. there have been more "downs" than "ups" and both your psyche and physical stamina have been continuously challenged (again and again). somehow, the four of you have persevered and arguably are stronger for it - this is not an empty statement, i have seen the remarkable change in all of you.<br /> <br />if my math is correct, one year ago today, i received your frantic call from the radiology suite at nyu with the worst possible news. i clearly remember how your voice quivered despite your best efforts to keep it together - you knew something was amiss. my own realization of the gravity of the situation was confirmed when you passed the phone to the radiologist who described the results of toby's abdominal/pelvic CT to me. even as she was talking, i feared the worst and my fears were realized when she answered my two questions affirmatively that the mass appeared as though it originated from the adrenal gland and "crossed the midline" and that it contained calcifications. until this point i was hoping that the mass was "benign" or at the worst a wilms tumor, unfortunately, it was neither.<br /> <br />over the past year you all have been to hell and back many times. <br /> <br />i've seen how these "trips" affect (other) kids and their parents. some of them become so hardened and withdrawn that they can no longer function. the dreaded disease consumes them and their entire being becomes a manifestation and reflection of it - they find it exceedingly difficult to live with their disease. i can not say the same for the four of you. while it's true that each trip tests your resolve, at the same time you become more determined and earnest to live a normal life, "tubies," chemotherapy, and endless restrictions be damned. you and stephen are advocates-extraordinaire for toby, insisting that he go to school, have play dates, and be as much a kid as he deserves to be. i'm continually amazed by this and i'm not sure that you and stephen appreciate how truly important and remarkable this is.<br /> <br />anniversaries are meant to be positive; reminders to commemorate and to celebrate good. today is one anniversary i would prefer not to remember.<br /> <br />love,<br /> <br />yoram<br /><br /><br />God, I love my brother.<br /><br />**********<br /><br />On Saturday, May 10, Stephen, Yoni, Toby and I will be walking in Central Park to raise money for neuroblastoma research. <br /><br /><a href="http://www.walkforkidswithcancer.org/">Kids Walk for Kids with Cancer</a> was started 7 years ago by Shirley Staples’s daughter Sophie. Since then, it has raised almost $525,000. The walk is organized by NYC middle- and high-school students and it has blossomed into quite a wonderful event. It starts at 2 p.m. in Central Park, across from Tavern on the Green at W. 67th and CPW. First is a brief program that includes doctors who treated both Shirley’s son Simon and Toby. Next is the 4.5 mile walk. Everyone is welcome, from babies to grandparents, and even pets. We will be there to walk with Toby, in support of all the brave children battling this terrible disease. The survival rate for neuroblastoma is a dismal 30%, so more funding for research is desperately needed. Funds raised will help MSKCC researchers improve the odds for our children. We hope you can join us. Please email our dear friend Reva at walkfortoby@gmail.com if you would like to participate. Thank you so much and we hope to see you there.<br /><br />Love,<br />mooki + stephenUnknownnoreply@blogger.com27tag:blogger.com,1999:blog-8020196701240327546.post-84894023305869472382008-03-30T21:19:00.000-07:002008-03-30T21:28:43.597-07:00Food is Love.<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiDnVcAv5DV_37xd5flo221CKMChsoQZoGp6lcsFLa229MAEjW7xhm8CQoCwe0pJZpVSkCxd90uFEWjrDO9HLTgrCINJtkSKAm0mm6PDd5_Rg7s5U9gyixKPy7oxfE4h4dnPGb3GNu5OYQ/s1600-h/P1010007.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiDnVcAv5DV_37xd5flo221CKMChsoQZoGp6lcsFLa229MAEjW7xhm8CQoCwe0pJZpVSkCxd90uFEWjrDO9HLTgrCINJtkSKAm0mm6PDd5_Rg7s5U9gyixKPy7oxfE4h4dnPGb3GNu5OYQ/s400/P1010007.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5183757527813867458" /></a><br />On March 1, Stephen and I cooked dinner for the first time in 10 months. I honestly couldn’t remember where we kept the frying pan, but somehow managed to wrangle schnitzel onto our plates before 8 pm. Since then we’ve gotten a lot more comfortable: replenishing the spice rack, trying out new recipes (turkey meatballs with raisins and pine nuts, anyone?) and ordering in only twice. Late at night, I find myself thinking about tomorrow’s meal. I’ve even started hitting the food blogs. <br /><br />I don’t really enjoy cooking, but eating is another matter entirely. I can unequivocally remember complete meals from more than 20 years ago: my mother’s bittersweet mocha almond cake, lemony Israeli salads, the epiphany of my first mango. In the first grade I went to a heuristic school in Norman, Oklahoma. There were no defined schedules or classrooms or requirements. We could read all day in the loft or play with pattern blocks for hours. I spent most of my time in the kitchen making blue lollipops. And I can tell you exactly how they taste. I guess I’ve always been a girl who loves her food.<br /><br />The weekend after Toby was diagnosed, my brother gently forced us to make a list of items we needed help with: transportation, errands, food. I could barely put a sentence together, but instinctively knew that making dinner for the foreseeable future was impossible. And then an angel named Heather Lester Rodd walked into our shattered lives, and gracefully started the tremendous task of providing us with almost 300 nights of home-cooked meals.<br /><br />An amazing Brooklyn community rallied around us, friends and strangers alike, who lovingly cooked and delivered the most incredible meals. No matter how awful the day, we reclaimed our humanity around the table, with food and wine and wonderful gifts for toby, tucked in among the foil-covered dishes. We still can’t believe our luck. <br /><br />It has been good to get back to making dinner. It gives us a sense of normalcy. Toby likes to help us cook. But not a day goes by that we don’t think of those 300 meals. You gave us sustenance and hope during a time of indescribable darkness. And we will never, ever be able to thank you.<br /><br />------<br /><br />On a non-food related note:<br /><br />The last 3 weeks have been wonderful. I’m sorry to have not updated sooner, and I didn’t mean to make anyone worry. Toby sailed through this most recent round of chemo, with no diarrhea, no vomiting and good counts. We have had 7 glorious consecutive days of no hospital visits (interrupted only by a dash to the ER last night with a fever). Best of all, Toby has been able to spend 2 full weeks at school. He is very, very happy: chattering about his teacher Marina, show+tell, what he ate for snack, how he went to the bathroom alone, where his cot is, what songs Victor sings. His backpack is full of artwork, not bandage change kits or hospital masks. He doesn’t think about medicine, shots or scans for 6 whole hours. And when I pick him up, he is surrounded by smiling, healthy children. Is this real? The people I pass on the way home see just another kid sitting in a stroller. They don’t see his tubies, scars or sweet bald head. And they can’t possibly know what he has been through and the heroism he exhibits every day, to get out of bed, have breakfast and go to school. I am so proud of my wonderful boy. <br /><br />We feel like we have been given a gift these last weeks. But sadly are very fearful of the coming days. On Thursday we begin a full work-up again: CTs, MIBG scan, and bone marrow biopsies and aspirates. Scan week is emotionally and physically exhausting for us and especially for Toby. We are hoping for good news.<br /><br />Much love,<br />mooki + stephenUnknownnoreply@blogger.com20tag:blogger.com,1999:blog-8020196701240327546.post-89342085705406395522008-03-06T20:47:00.000-08:002008-03-06T21:10:12.556-08:00Some days it hurts too much to writeFebruary was a hard month. The little boy on the couch returned, barely able to lift his head from the pillow. During the time when his eyes were sunken, when his skin turned yellow and papery, when the black rings threatened to swallow his face, I couldn’t think of anything I could possibly write to communicate our desperation, exhaustion and fear. <br /><br />The days stretched into weeks, and weepy lesions crept up Toby’s arm. Vomit basins multiplied in corners, under the couch, near the beds. Again. And there was diarrhea that would not stop. At night we stripped the bed over and over, but the black liquid still burned through two layers of skin. <br /><br />Toby spent endless days in the ER and a week in isolation on a ward of adult lung cancer patients. Just as we were about to be discharged, his blood cultures showed two bacterial infections that required whopping doses of intravenous antibiotics, administered every six and eight hours in the hospital. We finally came home to a refrigerator packed with bags of antibiotics and an IV pole that took up residence in the playroom. While Stephen traveled to South Carolina for his father’s memorial service, I played nurse, injecting Toby with a dizzying amount of medicine, recording the hours and tubes in my notebook, so I wouldn’t forget the next dose. At night I set the alarm for 1:00, 3:00, 3:30 and 4:30, a twisted reminder of life with a new baby. <br /><br />It took a while to figure out how to leave the house, but by Saturday, the snow beckoned. Here was a chance for Toby to be a real child, and even though he was weak, even though he protested, I hoped that sledding would bring back my boy. At noon in Prospect Park, I crouched on the hill, flushing his line with heparin, wiping the clave with alcohol. And then we rocketed down: Toby, me, and the medicine ball of vancomycin. He cradled it in the pocket of his parka, and shouted with joy. <br /><br />I do not know how to explain what Toby’s life is like. We spend most of our time trying to distract him from the gut-sinking realization that his surroundings are truly awful: the rasping sick people with tubes coming out of their faces, the man without an eye in the elevator and the children who are playmates one day and die the next. We lost three beautiful, precious children in February, children with tremendous spirit and resolve. The world is a poorer place without Carter, Eden and Harrison. <br /><br />With so much sadness and despair, it is incredibly difficult to keep going, but somehow we must, for Toby’s sake and for all the other children battling this disease. The hospital has become our second home, even though every day we fight the urge to run far, far away. Instead, we encourage Toby to inject his own saline, we turn the 14th floor into fodder for a scavenger hunt, and play guessing games about how much he will weigh. Toby writes letters to Dr. Kushner, outlining his inventions for a universal medicine that tastes good. He calls his imaginary bug friends and makes appointments to meet them in the hospital cafeteria. He talks the nurses’ ears off about trains and weekend schedules. <br /><br />During this bleak month, Stephen and I each had one defining moment that brought on the tears. For me it was the day that Toby didn’t say a word for 5 hours and then whispered, “Maybe one day we can visit Elizabeth at Beansprouts?” For Stephen, it was after a grueling day of diarrhea and vomiting, when Toby asked for Mercer Mayer’s book “When I Grow Up.” Stephen’s voice started trembling as he read aloud the child’s wishes of becoming famous chef, dazzling trapeze artist, race-car driver. It’s the most innocent and universal question I can think of: “What do you want to be when you grow up?” But for parents of children with neuroblastoma, it’s not a simple question at all.<br /><br />We know that Toby may not grow up. We know that school and sleds and ice cream are gifts to be savored right NOW. We are so very grateful for the opportunity to spend time with our wonderful boy, drawing maps, making party hats, taking train rides to anywhere. After the ides of February, these last few days have been excellent indeed. More soon.<br /><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhu8GStKdSPT9V7u5yTC8MHuTU6ufD4SgRU_HArUhqkB1sSqIzjbvI_uUW5zH7zH0gGnyktzwSPt1OjwoZHG8adBzJLSpbiOfmyENNcCvVOTqH58PkBGXdZanJiWbUWv9xvkTE2T7JhF04/s1600-h/P1010242.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhu8GStKdSPT9V7u5yTC8MHuTU6ufD4SgRU_HArUhqkB1sSqIzjbvI_uUW5zH7zH0gGnyktzwSPt1OjwoZHG8adBzJLSpbiOfmyENNcCvVOTqH58PkBGXdZanJiWbUWv9xvkTE2T7JhF04/s400/P1010242.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5174861522156324882" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjbhHawYmqZKla3xZmknPBofE9o6JHjFwYt94eW5-cV26C7RcAcfim0kAhRDefs0uiTVpg4hgZFEIeH4X-K62uKzlz71Ikk17eOcL_JAY3sCEcfeyE5Pk8Fn5pNBFJoMGVaC7bXX1NDhRk/s1600-h/P1010316.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjbhHawYmqZKla3xZmknPBofE9o6JHjFwYt94eW5-cV26C7RcAcfim0kAhRDefs0uiTVpg4hgZFEIeH4X-K62uKzlz71Ikk17eOcL_JAY3sCEcfeyE5Pk8Fn5pNBFJoMGVaC7bXX1NDhRk/s400/P1010316.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5174861530746259490" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg7oE_f1YjasGGVuLtlsk57rWBPiYy4L5Jt7GXXh9w3f1mZOk1CDaJWMAyvTgLJSUQTFIxHBYcamq4p1D3p7RmoDpcwqEEnj57DdiSMRMgJeFJnONTNrPqUxfkcs2pJCVyyyUCCivmw_QM/s1600-h/P1010323.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg7oE_f1YjasGGVuLtlsk57rWBPiYy4L5Jt7GXXh9w3f1mZOk1CDaJWMAyvTgLJSUQTFIxHBYcamq4p1D3p7RmoDpcwqEEnj57DdiSMRMgJeFJnONTNrPqUxfkcs2pJCVyyyUCCivmw_QM/s400/P1010323.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5174861539336194098" /></a><br /><br />Love, <br />mooki + stephenUnknownnoreply@blogger.com27tag:blogger.com,1999:blog-8020196701240327546.post-35420286151404961242008-02-26T10:32:00.000-08:002008-02-26T11:23:19.137-08:00Paper Anniversary<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjhIEwr4OaBOHeb5wVg9pWX6pxNVnE3mz5I5rsT2OCUeut2456YNlPmNrO7zmZ_nn8UiF2673I6t5gpDIdDYvMYlGf8HWU5q8PCKWmMK6vIfYBU94kU-MExhkKtoF_NG-si7mGT2SgivfE/s1600-h/428826834_a13a730381_b.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjhIEwr4OaBOHeb5wVg9pWX6pxNVnE3mz5I5rsT2OCUeut2456YNlPmNrO7zmZ_nn8UiF2673I6t5gpDIdDYvMYlGf8HWU5q8PCKWmMK6vIfYBU94kU-MExhkKtoF_NG-si7mGT2SgivfE/s400/428826834_a13a730381_b.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5171366797816567682" /></a><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgDmcEJEsbmkV4Sl-ef7lw-7_o0ikGtRzxnJAJKCIfyP4m-gqzK7qXbXQBG9N6CSQ30i-ykJevcgO7WSlncqsF086S3AuRdUkZsAKN6ywzysEI8-vvWPnLL-RoBwT5FAQ54gn8E0gW0zX0/s1600-h/428836707_4c4da09846_b.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgDmcEJEsbmkV4Sl-ef7lw-7_o0ikGtRzxnJAJKCIfyP4m-gqzK7qXbXQBG9N6CSQ30i-ykJevcgO7WSlncqsF086S3AuRdUkZsAKN6ywzysEI8-vvWPnLL-RoBwT5FAQ54gn8E0gW0zX0/s400/428836707_4c4da09846_b.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5171366806406502290" /></a><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhAOuBLqkNIXlb7bKAoyXHWux-lbXh-GL2FrC7iXz9W471S-eiaTSzdHULAS7_QPjJ6Oq3u4hboudFcg-OBqERym-xJfntS-fyS-O8O34LSb2S3R2Xf8WHLmehPBiVz4KyR7SDdR4v6bFw/s1600-h/428841097_0e38cef636_b.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhAOuBLqkNIXlb7bKAoyXHWux-lbXh-GL2FrC7iXz9W471S-eiaTSzdHULAS7_QPjJ6Oq3u4hboudFcg-OBqERym-xJfntS-fyS-O8O34LSb2S3R2Xf8WHLmehPBiVz4KyR7SDdR4v6bFw/s400/428841097_0e38cef636_b.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5171366814996436898" /></a><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjuA6-5YyLkLjprxlQMXRdxUZYPc4mzTm18XWnyD-csVdDenGxPK8aNZY_p36AxgbGY8Zzezw9jIfpzIJeKvfzcCW9qqCn8di83ZiwOKpwyT__vy6OOYt3NhALbzA4G5Yxgdn0PNvWlrEw/s1600-h/428842993_597e756c66_b.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjuA6-5YyLkLjprxlQMXRdxUZYPc4mzTm18XWnyD-csVdDenGxPK8aNZY_p36AxgbGY8Zzezw9jIfpzIJeKvfzcCW9qqCn8di83ZiwOKpwyT__vy6OOYt3NhALbzA4G5Yxgdn0PNvWlrEw/s400/428842993_597e756c66_b.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5171366827881338802" /></a><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiPOKLocsqViBTzf456NgOT093Qv2P8cr4dq6wq3siGPKsxi3hcc9UL_Tyi3zKPBNBdjBI0VVXltBNxlJ0NoZ7TsURCGjAzkP7NOqXVEJ6x6sLhWhumb_m5CnE0MMVqqQlO1p-mjmmPBKA/s1600-h/wedding.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiPOKLocsqViBTzf456NgOT093Qv2P8cr4dq6wq3siGPKsxi3hcc9UL_Tyi3zKPBNBdjBI0VVXltBNxlJ0NoZ7TsURCGjAzkP7NOqXVEJ6x6sLhWhumb_m5CnE0MMVqqQlO1p-mjmmPBKA/s400/wedding.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5171370220905502674" /></a><br /><br />One year ago in an old-world kitchen, embraced by family and friends, we held hands and got hitched. It took us 8 years to make the decision, but only 28 days to plan the wedding. The happiest day! And the honeymoon is far from over. Love you my man.<br />xox,<br />mUnknownnoreply@blogger.com10tag:blogger.com,1999:blog-8020196701240327546.post-88304003144751059082008-02-15T17:48:00.000-08:002008-02-15T19:19:03.038-08:00Zoster and boxersToby was readmitted to the hospital earlier this afternoon. <br /><br />Toby's bone marrow, the "factory" responsible for producing white and red blood cells and platelets, has taken quite a beating over the past 10 months. With each successive treatment, be it chemo, radiation, antibody or accutane, his marrow's ability to mount a recovery takes longer and is less vigorous. The result of prolonged marrow suppression is a significantly increased risk of infection as well as easy-onset fatigue, headaches, shortness of breath and episodes of bruising and bleeding requiring frequent blood and platelet transfusions. At his last re-evalution, Toby had no detectable disease including his marrow. To maintain this first and long awaited remission, Toby must endure additional toxic therapies, but because he can no longer receive antibody treatment he resumed chemotherapy a few weeks ago after enjoying a chemo-free break for a couple of months. A beaten-up marrow is like a boxer - initial blows do little in the way of slowing the boxer from getting back up, but as more blows land their cumulative effect is more pronounced and recovery becomes considerably more difficult. This is what Toby has experienced for the past two weeks following a reintroduction of chemo.<br /><br />More troubling than the vomiting is the incessant diarrhea which Mooki describes as nonstop. Unable to keep any of his 12 daily pills down Toby is dehydrated, he's lost weight, and he's worn down. He's had to make almost daily trips to the hospital for "supportive care," and instead of simply admitting him to stem the tide, each time he was sent home only to return within a day or two. Especially troubling is the fact that the zoster, diagnosed more than a week ago, has gotten worse. Initially isolated to the back of his hand, it has now spread up his forearm all the way to his elbow. Not only is zoster extremely painful (it lies dormant in nerve cells waiting to be reactivated at a time when the immune system is suppressed) it is also potentially life-threatening. If not treated effectively it can spread throughout the body wreaking havoc. Toby's inability to tolerate acyclovir is likely the result of frequent vomiting and diarrhea and is the reason for the spread. <br /><br />While Toby, Mooki, and Stephen do not relish their forays to MSKCC, they have become accustomed to the familiar surroundings of the oncology unit. Unfortunately, because zoster is extremely contagious for the other sick kids on the oncology floor, each time Toby has been to the hospital over the past two weeks he's been relegated to "urgent care." Urgent care is not the most kid-friendly environment. The medical team is not the one that Toby is accustomed to and Toby and gang are completely cut-off from the other kids and families whose support and company they have come to rely on during previous admissions to the oncology unit. <br /><br />Over the past month, Toby started back at school. He had been joining his friends for a couple of days a week and was supposed to be back every day over the past two weeks. The vital contact he had just started to re-establish with his peers seems like a thing of the past and he's hardly had any contact with the outside world for the past fourteen days. Nevertheless, Mooki informs me that Toby's spirits (mostly) remain positive and upbeat. She and Stephen on the other hand have had an extremmly hard time with this most recent spat of bad luck. Throughout their ordeal since April 2007, no matter how exhausted or frustrated they have been, Mooki and Stephen have found the energy and motivation to engage Toby in endless creative and ingenious ways. This evening, Mooki told me that she simply hasn't had the strength or desire to interact with Toby like she wants to - she's at her wits end. <br /><br />The irony of Toby's admission is that last night was the first time in nearly two weeks that he had started to feel a bit better. Toby, Mooki, Stephen, and Yoni will endure this current setback for sure, but at what cost? I worry that their respective psyches, like Toby's marrow, are beginning to sustain too many blows and may take longer to recover. <br /><br />Let's hope for softer more forgiving blows.<br /><br />YoramUnknownnoreply@blogger.com10tag:blogger.com,1999:blog-8020196701240327546.post-86446598796679505912008-02-10T13:42:00.000-08:002008-02-10T13:55:58.001-08:00How quickly things changeIt's pretty dismal around here.<br /><br />On Monday Toby started his eighth cycle of chemo.<br />On Tuesday he developed shingles.<br />On Wednesday, Thursday and Friday he had to receive treatment in the ER.<br />On Friday night we went back to the ER, just 3 hours after we left, because of a fever.<br />On Saturday and Sunday, Toby spent the days on the couch.<br />Diarrhea started on Tuesday, and hasn't let up yet. Vomiting started on Wednesday and continues.<br />Medicines currently in use: Acyclovir, an anti-viral for the shingles; Neurontin, for nerve pain associated with shingles; Immodium for diarrhea; Vistaril for nausea. None of these pills stay down for very long however, as we've found a nice collection swimming in the barf basins.<br /><br />Last week Toby was a happy, roundish little boy. Today he is hollow-eyed, exhausted and miserable.Unknownnoreply@blogger.com9tag:blogger.com,1999:blog-8020196701240327546.post-25709422177679836302008-01-27T21:12:00.000-08:002008-01-27T21:16:07.437-08:00Cancer is a blessingI subscribe to an online neuroblastoma support group, which has become a lifeline of sorts over the last few months. The emails are routinely heartwrenching and usually difficult to get through, but I look forward with great anticipation to the nightly reading, ingesting each message after Toby goes to bed. And I commit to memory the names and histories of so many dear children who I will never know. <br /><br />A couple of weeks ago, someone from Utah cross-posted a message that originated on another ped-onc listserv. It was titled, “We are blessed!” <br /><br />I thought about that message today when I learned that a friend’s beautiful 2-year-old daughter suffered a massive seizure on Thursday while at preschool. She had absolutely no prior medical condition. And she died before her parents had a chance to say goodbye. <br /><br />Toby has been sick for just over 9 months, close to the amount of time he spent inside my body, when he grew perfect fingers and toes, and pounded my stomach walls with his tiny fists, and soared on the waves of my amniotic fluid. We ate and walked and slept together, and he heard my voice always. We were one. <br /><br />Through this horrible disease, I have been blessed to be one again with my son. I spend more time with him than I could ever have imagined. I am witness to his joy, his fear, his pain and his strength. I hold his perfect warm body as he enters sleep and I thrill to the music of his laughter. I know every inch of his skin, where the scars are still tender and where the tattoos pulsate with his breaths. We are in tune with our rhythms and dreams. And every day we fight against the beast while celebrating life. Nine months of cancer have given me the gift of time and the greatest love I have ever known.<br /><br /><br />We have a lot of news.<br /><br />Toby is doing very well. His scans from December were clean, and preliminary reports from his scans of last week look promising. His VMA/HVA urine levels are the lowest ever. He has good energy, appetite and the softest, most wonderful head of hair. Two weeks ago he was able to spend four consecutive afternoons at school, while we sat on the bench outside. And every day he reads a little more… the words on a new-age teabag tag (“keep up!”), building signs (“elevator to street,” “cart drop-off”) and of course, subway directionals (“42 Street Times Sq” and all stops on the F, G, and A lines). <br /><br />Unfortunately, Toby developed a HAMA (human anti-mouse antibody) during his 3rd round of 3F8. This means that his body has become immune to antibody treatment and he will not be able to receive more 3F8 until the HAMA disappears. This may take a number of months, and one of our doctors admitted that in Toby’s case the HAMA may never resolve. Although a humanized antibody is in development at MSK, it will most likely be unavailable for a number of years. This puts us at a difficult crossroads.<br /><br />Dr. Kushner and the NB team at MSK would like Toby to start chemo once again, in an attempt to ward off possible relapse. The chemo (Irinotecan/Temodar) would be moderate dose for up to 6 months, on a cycle of 1-week on, 2-weeks off. He would continue to be tested for HAMA during this time. Last week we drove down to Children’s Hospital of Philadelphia for a second opinion. Dr. Maris suggests staying on accutane (Toby has completed 1 cycle) for 5 more rounds and then starting an experimental drug called ABT-751. Tomorrow we will hopefully meet with Dr. Kushner to discuss our next treatment plan, which will probably begin on Tuesday.<br /><br />We want to thank you again for all your love and support. We ask for your prayers of compassion and comfort for our friends Sara and Eric, as they grieve for their daughter.<br /><br />Love, mooki + stephenUnknownnoreply@blogger.com19