Wednesday, June 25, 2008

If it's Thursday, it must be surgery

Tomorrow 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.

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.

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.

Monday, June 23, 2008

Subject: MIBG & MRI - GREAT!

I cannot wait even a minute to share our good news. Here's the email from Dr. Kushner:

Revel in it.
We are so, so, so grateful. Thank you for believing in Toby.

Wednesday, June 18, 2008

Prayers wanted

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.

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.


Thursday, June 12, 2008

Things I thought I knew

You can’t be in two places at the same time. Or, work and chemo don’t mix.
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. Click. 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.

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.

Heaven does not exist.
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.

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.

But this spring we lost so many children to neuroblastoma: Justin, Austin, Cooper, Courtney, Emily, Spencer. 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.

Please honor their memories by visiting their sites.

I caused Toby’s cancer.
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.

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.

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.

Since I’m Jewish I’ll carry the guilt no matter what, but this news is a comfort nonetheless.

95 degrees and sunny automatically means a beach day.
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.

There’s a beginning, middle and end.
I can’t say it better than Vickie.!

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.

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.

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).

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.

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.

I didn't like my prom.
but then i came here

And I obviously don't know much about anything.