After the Storm

The Seattle Snowpocalypse has finally subsided and the streets are dissolving into a slushy slurry of snow-mixed mud. It's amazing how the city can almost completely shut down with the tiniest bit of snow, let alone after the dumping we've gotten in the last couple weeks. We hadn't planned on taking time off for the holidays, but we were forced to--only a handful of clients wanted to try their hand at driving through snow to our house.

Our big excitement lately that Jeff didn't mention in the previous post was some swelling in Zoe's scalp that appeared all of the sudden over the spot in her skull where she had had the most trauma during the surgery. The quarter-sized bump caught my eye 3 weeks ago over her right ear. A call to Cunningham had Jeff taking her in the next day for a viewing and CT scan. The verdict was that they weren't acutely worried, but that we should keep our eye on it.

It doubled in size over the next week and a half. More conversations with the team had them surmising that she had likely "sprung a leak" of cerebral spinal fluid at that location, but that, since her mood was not altered, since there was no accompanying fever, no red inflammation, there was really nothing to be done. It existed in an enclosed system--and, opening her up for any patchwork would only serve to push off the BMT.

Even though the doctors' and nurses' words on the subject were pragmatic, we couldn't help but watch our minds wrestle with this new worry. A leak! Ack! To help us feel better about it neurosurgery scheduled us for another check-up for what was this last Friday the 26th. Somewhere in the middle of the night of Sunday the 21st, Zoe's swelling deflated by 80%. In the morning it was the smallest hint of a bump. The check up on Friday was basically a "yep, probably a small leak--and nope, nothing to interfere with the scheduled BMT."

Phew! And....now she's sick.

It seems like we've already traversed this path. Our efforts to keep her cloistered haven't prevented what seems inevitable in cold and flu season. In fact, we've all got the crud. Of the three of us, Zoe seems the most chipper. Tomorrow at our first SCCA appointment we'll find out what effect this latest development has on her BMT start date.

We are learning to laugh. Well, at least chuckle -- if a little mirthlessly -- at the ongoing bumps in the road. One thing after another. Our minds swing on a jungle-gym of worry, from one rung to the next--all with no real purpose other than to give us the illusion of having any control at all in this mind bogglingly immense experience. We've been telling ourselves to get used to it, that it will likely be a constant stream of perils of varying degrees.

How can it not be? A risky treatment for a fatal disorder. It's all about life and death and becoming accustomed to walking the line between the two. Some days we walk more gracefully than others.

Christmas was a very mellow day for us. Our Postal Service Champions got hit pretty hard by this terrible weather we had. We got a call a couple days before Christmas from the post office saying that, due to the craziness of trying to deal with the snow, no time had been had for shopping for us; they would do it after the holiday rush and thaw.

Carol, our carrier that's been subbing for Robin, showed up on our doorstep later that day with a couple gifts for Zoe and a grocery bag of drinks and sweets. She just wanted to be sure that we had a few goodies for Christmas! Again--the kindness and care being sent our way astounds and humbles me. She had been stuck in a ditch for 4 1/2 hours the day before, the snow was still bad the day we saw her, and yet she stuck her neck out to help make our Christmas special.

Holiday spirit on our doorstep, incarnate.

Of the two presents delivered, one contained a couple of blankets made especially for Zoe by the wife of one of the postal workers. Designed with a blind baby in mind, they were soft and fuzzy on one side and silky smooth on the other. One was large enough to cover her in bed, the other, small enough for her to hold and hug. So sweet!

Tomorrow, finally, are the first of three, maybe four preparation appointments with Seattle Cancer Care Alliance. Funny how that name now rolls off the tongue without the angst and trauma it initially produced in me when we first realized we had to work with them. So much fear of the "Mythic Bone Marrow Transplant"--but it's the only thing that can cure her. And, as her abdomen swells before our eyes from an ever-enlarging spleen trying to do the work of her diminishing bone marrow, we are anxious to get started. And, we are grateful that there is even hope of a cure.

So, folks, let's get 'er done!