Adam's Tumor

Some bad news: we found out on Thursday that Adam has a serious brain tumor. He’s in the hospital now and is going to have at least two operations in the next few days.

Some background: when we adopted Adam in Ethiopia last June, he was somewhat delayed, due to being in orphanages for about a year. At the time, he could barely crawl. After bringing him home, he advanced quite quickly, and was walking by the end of the year. He’s always been a little unsteady, and never learned to run or jump, but we chalked this up to his delayed development.

However, a few months ago, while he was going up & down stairs well, we became more concerned that he wasn’t making as much progress as we hoped; he was also noticeably shaky (wobbly, having trouble standing still), particularly right after waking in the morning or after his nap. However, other than that, he was doing well; in particular, his speech has continued to develop.

A few weeks ago, we took him to his pediatrician, who agreed that his symptoms called for him to be seen by a neurologist; when we saw the neurologist, she recommended some tests, including an EEG and an MRI. When he had the MRI on Thursday, it was clear that he has a large tumor in his brain’s ventricles; the tumor is causing overproduction of cerebrospinal fluid, which is causing hydrocephalus.

Thankfully, he thus far hasn’t had any acute symptoms (no seizures or other obvious neurological issues). However, out of fear that acute symptoms could develop, he’s been admitted to the hospital (Weill Cornell / NewYork-Presbyterian in Manhattan).

On Monday, he’ll have a procedure where they will thread a catheter up to his brain and inject a dye to take detailed images of the tumor (an angiogram); they may also close off some of the blood vessels serving it (embolization), and I believe they’ll install a drain to allow taking off some of the fluid pressure.

On Tuesday, he’ll have surgery to remove the tumor. Then they’ll biopsy the tumor to determine if it’s benign or malignant; that will tell us more about what the future will hold for him.

He’s in the hospital as a precautionary measure, not because he’s noticably ill: he’s the same happy, active kid he was a few days ago, although a little tired of being stuck in bed all day and hooked up to monitors. (Not to mention the hospital food.)

While this is tragic, let’s remember that Adam’s a very lucky kid: I think that if you’re going to have a brain tumor, New York City is as good a place as any to have it, at least presuming you have good insurance (certainly better than Addis Ababa). His surgeon is a world-class pediatric neurosurgeon, a specialist in removal of intraventricular tumors. (He’s also got a room with a beautiful view of the East River.)

Lucy & Henry are dealing with it well so far; they’re sending their love and their drawings.

Thanks for all your offers of help & support. We’ll be happy to take you up on your offers of play dates, etc.; right now, we have two grandparents in town, so we have enough pairs of hands for watching kids, etc.