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

7 comments:

Anonymous said...

Sending New Year and healing wishes to Toby and family, and thinking of you all at Sloan. And just to say how grateful I've felt for inclusion in the audience for this blog. Families can go in so many different ways in these kinds of circumstances, and your model of connectedness to one another, and to the layers of feelings you experience, seems remarkable and unusual. To the extent that I can, I'm trying to feel along with you, and offer wishes of support. Thanks to Yoram for his sensitivity, insight and apparent devotion, and cyberhugs to all.

Nancy W.

donna said...

yoram -

thank you for the update. i think of toby often and check in on the blog frequently. it's always reassuring to see a new post.

"stay positive" and "i'm so sorry for what you're going through" seem like such empty things to say. i wish i could come close to being as eloquent as mooki (and you, yoram).

from everything i've read, toby really seems to be a little survivor. here's to his amazing strength, your unbelievable perseverance and a happier year ahead for all of you.

Regina said...

YES--

Affirming all of the above, with much love.

Regina

martha said...

Well- what a boon to see the fuzzy head and grinning face we all love so much- thanks to Yorum for the news and Mookie, Stephen, Toby and Yoni please know we are sending all our love your way here and in our prayers- martha,nils, jens and chris- we'll see you soon.

Anonymous said...

It was so nice to see Toby happy. All of our prayers are with you. We hope Toby feels better from the fever. Love always,
sarah jo, chris, michael, e'mon, chrisshawna, and ericka

Anonymous said...

Thanks Yoram for such an eloquent and thorough update. I want to be/need to be cautiously optimistic-- and completely understand the "superstition" and fear of "jinxing". I echo the above thanks for being a part of this amazing web of connectivity-- it is part of my life now and I appreciate the courage it takes to be so open and candid. Let's pray for a better 2008.
much love, Balinda, Phil & Felix

Anonymous said...

I wish you health and happiness in 2008. As I sat among my family on Christmas day and watched the 9 grandchildren (all under six years old) play together, I said a short prayer to keep them safe and I included Toby. It is unfair that he, too, cannot be as worry-free and joyful as a child should be.

Brooklyn Mom