Posts from Wednesday, August 28th, 2013

So Very Lucky

Published 5 years, 1 month ago

All things considered, we were incredibly lucky that Rebecca’s brain tumor emerged on vacation.  We were incredibly lucky in so many ways that it almost defies believability.

For starters, because we were in New Jersey, Rebecca was transferred to The Children’s Hospital of Philadelphia, which is very likely the absolute best place she could have been treated for her particular problem.  I sent a copy of her MRIs to a cousin of mine who’s a highly respected radiologist, and he showed it to a colleague, and they both can scarcely believe how much of the tumor was removed.  It’s essentially a total resection in an incredibly risky and difficult-to-reach area of the brain.

Anywhere else, with any other surgery team, there might have been more of the tumor left in her head, leading to significantly lower odds of long-term survival.  Furthermore, CHOP is one of the few places in the country with a proton radiation facility, which allows us continuity of care in a great program, and they are participating in a study of chemotherapy/radiation therapy combinations that could raise the odds even further.  This is the place that will give her the best shot at complete elimination of the cancer.  If we’d been at home, it’s incredibly unlikely we’d have come here.  Even if it had been suggested, Rebecca would have been far too ill to transport so far.  Instead, we transported her within range of CHOP in the family minivan just before (or even as) her symptoms began to manifest.

Just as lucky is that we were on vacation and so able to pay closer attention to Rebecca’s initial symptoms over periods of time unbroken by work or errands.  We were deeply in tune with what was going on, and so Kat knew when it was time to go back to the emergency room.  That’s where Rebecca’s seizures happened, and the ER staff responded instantly and flawlessly, which means she was stabilized in the minimum possible time.  That very well may have spared her, neurologically; in those situations, every second counts.  If we had been out of the ER, or maybe even in a different ER, she might not have fared so well.  If we had been in Cleveland, given the time that she seized, we might well have been driving her from the pediatrician’s office to the ER.

Then there was the logistical luck.

Kat’s high school friend Lisa, who lives just north of New York City and was already planning to come with her daughter to join us for the second week of our vacation, was able to come south as soon as she got our call, even before we knew exactly where we wanted her to go.

Even more incredibly, our very good Cleveland friends Gini and Ferrett were on the road, on their way to a convention in New England, and were paying the toll at the Tappan Zee Bridge when I called them with the news.  They immediately turned around to head south as well, and arrived at our vacation rental exactly the same time Lisa did.

We sent everyone there instead of Philadelphia so they could take care of our children Carolyn and Joshua, who were being watched by a sitter who turned out to be someone we already knew.  Kat and I had already left for Philadelphia, driven there by the woman who runs the sitter service we’ve always used on our vacations in New Jersey.  We didn’t even ask.  We were still trying to figure out how to get to Philadelphia when she found us a sitter—her own daughter—who could stay until our friends arrived, and then volunteered to drive us to CHOP so we could be with Rebecca, to support her and each other.  Even after all those years of using her service, that evening was the first time we’d actually met in person.

The kids came up to CHOP with Lisa, Gini, and Ferrett the next morning, bringing the whole family together.  Everyone needed a place to stay, and lo: Kat’s cousin Wendy and her family, who live 20 minutes west of Philadelphia, were leaving that same day for a week of their own on the Jersey shore.  They offered their house without a second thought, allowing everyone to stay less than half an hour away instead of five times that distance.

And further, the fact that it was late summer made it possible for more people to come to our without being hampered by the weather or school being in session and so on.  My parents could make the drive from Florida to Philadelphia on a moment’s notice, pushing through the entire 15-hour trip, and stay with us for almost a week.  Kat’s friend Dena could take the Acela down to help out the very next morning, mere hours after we’d arrived at the hospital.  Our friends Jen and Alyx were able to drive from Cleveland to Philadelphia later in the week to give Rebecca’s brother and sister more familiar faces.  Our various friends were able to get Rebecca’s siblings back to the shore so they could finish their vacation, away from the constant stress of the hospital, and they were able to meet up with Kat’s cousin’s family for a night on the boardwalk.

Everything came together.  So much support assembled in so little time with so few roadblocks that it still amazes me just a bit.

All things considered, I’d rather my daughter had never had a brain tumor, especially one so rare, in the first place…but given that she did, we are so, so lucky that it emerged on vacation.