I 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.
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!”
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.
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.
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.
We have a lot of news.
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).
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.
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.
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.
Love, mooki + stephen
Sunday, January 27, 2008
Saturday, January 5, 2008
Bernie
My father-in-law, Bernard Pannone, died this morning. He shared with his grandson a love of ice cream, an ever-curious mind and a great appreciation for how things work. Soon after I met Stephen, I began to hear stories about this wonderful man who fathered five incredible children. He was a gentleman in the true sense of the word: courteous, honorable, good and gentle.
Bernie had a knack for speaking a completely made-up language of gibberish and making it sound real. Toby was enthralled by this unexpected gift and spent hours with his grandfather in a shared world of emphasis, hoots and laughter.
During family gatherings I could usually find Bernie and Yoni engaged in long conversations about engineering, history or boxing. And I counted on Bernie for a connection to Stephen’s past, ever-ready warmth and love, and a constant willingness to engage.
I loved his voice, his deep abiding faith and his tendency to fret in the most genteel way. I will miss him. I feel so lucky to have become a part of his family.
May his memory be for a blessing.
Tuesday, January 1, 2008
Ambivalence
I am always amazed at Mooki's posts. They are heartfelt and painfully personal. They are written with honesty and candor and they grip you like a good story. Mooki has wanted to post an update for some time now. In fact, she has the beginnings of an update on her laptop, but fatigue and fear, as well as uncertainty and superstition have prevented her from completing it.
As the new year is upon us, many of us make resolutions and plan for the future. We look ahead and we forecast. We recognize that while we may not see each endeavor through to its end, we can always try next year because for the most part, time is on our side. This is natural. For Mooki and Stephen the future is far less natural and certain. For the most part, their future is defined by increments between re-evaluation scans and bone marrows, HAMA and urine tests. Perhaps more than anything, they have come to realize that no matter how much they want to plan ahead, living with neuroblastoma is at best day-to-day. Yet my portrayal is too simplistic, because even day-to-day planning is often only tenuous and subject to sudden change. The past eight months have given Mooki and Stephen reason to pause. Where they used to take good news about Toby's "state" as a harbinger of future good, they now do so only provisionally. Not infrequently, they have seen their own and others' good news quickly turn sour. They know too many children who have gotten good news only to have their disease ultimately progress or relapse, and some have died. For this reason, Mooki has been reluctant to share with you that Toby's most recent MIBG scan and bone marrow biopsies (the results of the bone marrow aspirates are still pending) were both "clean." By publicly declaring their good news, Mooki didn't want to jinx things. She knows that today's good tidings might be tomorrow's discontent. I also partially blame myself for Mooki's dis-ease and unwillingness to update the blog.
This past week my family and I spent several days with Toby et al. I hadn't seen Toby in a month and I was greeted by a fuzzy-haired and less gaunt little boy who still walks somewhat awkwardly. My girls and Toby played in Prospect and Central Park, they put on shows for us, they watched TV together, and just hung out. While we all were enjoying each others' company, I could sense that Mooki had attained a new and more mature station on the neuroblastoma learning curve. She was uneasy with the news of Toby's MIBG / marrow results (a true sign of understanding). Several times she probed me with the question, "it is good isn't it?" At the time, we didn't know that Toby's marrows were clean, and I found myself doing what I am so critical of some of my colleagues for doing - that is, rather than being a straight shooter, I hedged and I qualified. Instead of giving Mooki the honest answer that she deserved, "yes, it's good news, but we both know how neuroblastoma has a tendency to come back and bite you in the butt, so let's take it face value," I said, "yes it's good, but let's wait until the marrow results are back." I hadn't given Mooki enough credit, her level of understanding was greater than I had realized. She appreciated what I was trying to say, what I wanted to say, but what I was unable to verbalize. Maybe this is why she asked me to post an update, because she knew that what I couldn't do in person, would be easier for me to do in writing. Another reason for my posting is to let you know that Toby was readmitted to the hospital yesterday evening after getting the first of five daily infusions of 3F8-antibody treatment and Mooki's plans to finish what she had started took a back seat to more pressing matters.
Toby spiked a high fever, broke out in hives, and developed shaking chills. This constellation of symptoms necessitated hospitalization and starting a cocktail of three intravenous antibiotics in case the cause was a bacterial infection and not an allergic reaction to the 3F8. Toby and Mooki spent New Year's eve at Sloan, not exactly how they had "PLANNED" to bring in the new year. As of this morning, Toby was still having fevers, but he was in pretty good spirits and relatively upbeat.
What comes next is unclear. If the cause of Toby's fever is a bacterial infection, he might need to have his "tubies" surgically removed. This is because "tubies" are a common source of bacterial infections and once infected they tend to "reinfect." Toby's also due to resume 3F8 tomorrow, but it's not sure that this will happen either. The medical team has yet to decide what the next step is. This is very frustrating for Mooki and Stephen. Mooki told me that she wished that the medical aspect of Toby's care was more "scientific and less wait and see." I told her that I sympathize with her and that I know what she means - I do.
Mooki asked that I send her and Stephen's best wishes to you all this New Year. Let's hope that 2008 will be a better year for Toby, Mooki, Stephen, and Yoni than 2007.
Yoram
As the new year is upon us, many of us make resolutions and plan for the future. We look ahead and we forecast. We recognize that while we may not see each endeavor through to its end, we can always try next year because for the most part, time is on our side. This is natural. For Mooki and Stephen the future is far less natural and certain. For the most part, their future is defined by increments between re-evaluation scans and bone marrows, HAMA and urine tests. Perhaps more than anything, they have come to realize that no matter how much they want to plan ahead, living with neuroblastoma is at best day-to-day. Yet my portrayal is too simplistic, because even day-to-day planning is often only tenuous and subject to sudden change. The past eight months have given Mooki and Stephen reason to pause. Where they used to take good news about Toby's "state" as a harbinger of future good, they now do so only provisionally. Not infrequently, they have seen their own and others' good news quickly turn sour. They know too many children who have gotten good news only to have their disease ultimately progress or relapse, and some have died. For this reason, Mooki has been reluctant to share with you that Toby's most recent MIBG scan and bone marrow biopsies (the results of the bone marrow aspirates are still pending) were both "clean." By publicly declaring their good news, Mooki didn't want to jinx things. She knows that today's good tidings might be tomorrow's discontent. I also partially blame myself for Mooki's dis-ease and unwillingness to update the blog.
This past week my family and I spent several days with Toby et al. I hadn't seen Toby in a month and I was greeted by a fuzzy-haired and less gaunt little boy who still walks somewhat awkwardly. My girls and Toby played in Prospect and Central Park, they put on shows for us, they watched TV together, and just hung out. While we all were enjoying each others' company, I could sense that Mooki had attained a new and more mature station on the neuroblastoma learning curve. She was uneasy with the news of Toby's MIBG / marrow results (a true sign of understanding). Several times she probed me with the question, "it is good isn't it?" At the time, we didn't know that Toby's marrows were clean, and I found myself doing what I am so critical of some of my colleagues for doing - that is, rather than being a straight shooter, I hedged and I qualified. Instead of giving Mooki the honest answer that she deserved, "yes, it's good news, but we both know how neuroblastoma has a tendency to come back and bite you in the butt, so let's take it face value," I said, "yes it's good, but let's wait until the marrow results are back." I hadn't given Mooki enough credit, her level of understanding was greater than I had realized. She appreciated what I was trying to say, what I wanted to say, but what I was unable to verbalize. Maybe this is why she asked me to post an update, because she knew that what I couldn't do in person, would be easier for me to do in writing. Another reason for my posting is to let you know that Toby was readmitted to the hospital yesterday evening after getting the first of five daily infusions of 3F8-antibody treatment and Mooki's plans to finish what she had started took a back seat to more pressing matters.
Toby spiked a high fever, broke out in hives, and developed shaking chills. This constellation of symptoms necessitated hospitalization and starting a cocktail of three intravenous antibiotics in case the cause was a bacterial infection and not an allergic reaction to the 3F8. Toby and Mooki spent New Year's eve at Sloan, not exactly how they had "PLANNED" to bring in the new year. As of this morning, Toby was still having fevers, but he was in pretty good spirits and relatively upbeat.
What comes next is unclear. If the cause of Toby's fever is a bacterial infection, he might need to have his "tubies" surgically removed. This is because "tubies" are a common source of bacterial infections and once infected they tend to "reinfect." Toby's also due to resume 3F8 tomorrow, but it's not sure that this will happen either. The medical team has yet to decide what the next step is. This is very frustrating for Mooki and Stephen. Mooki told me that she wished that the medical aspect of Toby's care was more "scientific and less wait and see." I told her that I sympathize with her and that I know what she means - I do.
Mooki asked that I send her and Stephen's best wishes to you all this New Year. Let's hope that 2008 will be a better year for Toby, Mooki, Stephen, and Yoni than 2007.
Yoram
Subscribe to:
Posts (Atom)
