Friday, February 15, 2008

Zoster and boxers

Toby was readmitted to the hospital earlier this afternoon.

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.

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.

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.

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.

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.

Let's hope for softer more forgiving blows.



Anonymous said...

Perhaps Toby doesn't need creative or ingenious today. Perhaps simply being with him is exactly what he needs.

And if you need a break, then maybe someone from the community can take a bit of time.

Wishing strength and comfort and healing to Toby and to each of you in your precious family.

Anonymous said...

Yoram....Is there anything concrete we can do to help? I know that Mookie and Stephen were feeling like things were getting back to normal and they were ready to start cooking again and didn't need meals....perhaps we can continue with meals for a while? Would a care package of toys/games/books be helpful? Since there is nothing (unfortunately) that we can do to ease the physical challenges Toby is enduring at the there something we can do to ease the emotional challenges? Sending love and prayers for you all. I know that there are many many many of us who would jump at the chance to offer any support that we can.

Anonymous said...

What can I do? I am available all week this week. If Mooki, Stephen &Y oni want to have dinner with a family in the neighborhood, we are here. I would be delighted to bring games/puzzles/play-doh/books/arts&crafts to Toby at the hospital and give them some support.
On call,
Mother of Isaac, The Juggler.

Anonymous said...

Ay, so sorry to hear this latest. I hope that the urgent care folks will be able to help turn things around and that Toby is feeling better soon. And I agree that maybe "creative and ingenious" isn't even what Toby needs right now, and that Mooki, Stephen and Yoni get a chance to replenish and refuel. Easier said than done, maybe--but just to say I hope you all get some down time, and wishing you comfort and strength.

Nancy W.

Anonymous said...

I am so sorry to hear that you are back in the hospital. We will continue to pray for you.
Love always,
sarah josephine

Anonymous said...

it's so hard to feel like you are taking a step back, but i truly believe you are still moving forward.

it's OK to be empty for awhile. this time will pass, and i will pray fervently for it to pass quickly.


Anonymous said...

My thoughts, as always, are with you all. I miss you and I can't wait to see Toby next month when I get back to Brooklyn. Love, Randy

Jessica said...

Mooki - please add me to the list of people who will do anything you need to help out. Your community is still right here, waiting for any chance to give you the support you need. Just say the word.

much love,


Anonymous said...

It's been a few days since this post. I hope Toby is doing better and that Steven, Mooki, and Yoni are on steadier footing, so to speak.

As always, I am thinking of and praying for all of you. I wish circumstances would allow me to do more.

Sarah said...

I'm so sorry things are terribly hard right now. I wish that I could say that I don't know how exhausted you feel right now - but I do. I'm just so sorry. Please contact me if there is anything at all that I can do by way of a listening ear, if nothing else. We are praying for you guys!
Love, Sarah