If you are reading this blog, you have probably heard about my son Jack. This blog was created for a class project, but I’m going to use it for now as a central place to put information on Jack’s care, an idea which I am shamelessly stealing from Marie Seymour Green.
Jack is an eight-month old fraternal twin boy. He’s a sweet, sensitive guy, the type of baby that will touch your face and smile at you as if re-discovering how awesome you are every time you pick him up. We don’t know him that well yet, since he’s only started developing his little personality, but we know that he’s a little bit timid, very curious and observant, and loves watching his bird mobile or the wind stirring the curtains, and bouncing athletically in his bouncer. He’s not the kind to shriek with enthusiasm (that’s his brother’s thing) but he has a quiet way about him, and the sweet smiles and little coos of happiness are always 100% joyful when he gives them out. Pears mixed with raspberries are his favorite food.
This pic was taken at about six months (note the bro photobombing in the background).
Jack is fighting a brain tumor. I don’t know what kind of tumor it is yet, but it’s the kind that make people look at you with very, very grave expressions. We are now in the ICU at Nemours, and Jack is stable so far.
Here’s what happened: Over the past three weeks, Jack’s become much more fussy than usual, more needy. He’s slowly lost interest in the bouncer, and in sitting up to play. His sitting posture was never great, but his balance seemed to have deteriorated. We knew Jack had some torticollis, a minor muscular issue in the neck (likely as a result of being in cramped conditions for nine months), so we attributed the posture to that. He also began spluttering and coughing on his bottle. He’d been doing this since Christmas, when he had a bad chest cold, but it seemed to get worse. Then, about a week ago, I thought I noticed a slight horizontal twitch in his irises. But then I didn’t see it… and then I did. It was hard to be sure that I was seeing something at all. I was worried. Something just wasn’t right. On Saturday, September 15th, the watershed moment came when I was getting the boys’ dinner ready. Both Sam and Jack were in their high chairs, and I happened to run my fingers over Sam’s head, and then over Jack’s. That’s when I realized that Sam’s soft-spot was still a pronounced divet, and Jack’s felt swollen and kind of puffy. I had no idea what could cause the things I felt I’d been seeing, but suddenly I felt sure there was a neurological cause, and I hit the panic button big time.
The pediatrician saw us first thing Sunday morning. He did not notice the pupil twitch– (which I now know is called nystagmus) although it was later confirmed by the Nemours doctors– but he recognized that Jack had developed what he called truncal ataxia… poor muscle coordination in the trunk of the body. He noticed the swelling of the head and sent us off to Nemours. At Nemours, a CT scan was done, revealing a large mass in the cerebellum (back of the head, controlling muscle movement, etc.)
The neurosurgeon (Dr. Pyett) saw us right away and didn’t hold back. He said that the mass was “very large” and “almost certainly malignant”.
And in that minute, the once-stable world shakes loose from its moorings and lists wildly to the side, and you are suddenly staring the human condition right in the face. It’s a stark, horrible place to be.
That’s all I’ll say about my experience here. I’m going to try to keep the focus on Jack’s care.
So far, here’s the plan.
Today, Monday the 17th, Jack had an MRI to take a much closer look at the tumor and to examine his spine. As the head doctor of the ICU explained to us, they were looking for “metastatic drips”, cancer spreading downward through the spine. Jack had to be intubated, as it was a 3.5 hour session. But they found NO CANCER in the spine! First good news we’ve had yet. At least this thing is contained right now.
Thursday, the 20th, there will be a surgery to biopsy the tumor and to remove the excess cerebral fluid that is putting pressure on Jack’s brain, due to the tumor blocking the normal drainage pathways. The pathology report will tell us exactly what we are dealing with, and will allow us to make a plan for long-term chemo and further surgeries. We don’t expect the pathology report to be available until Monday the 24th at the earliest.
Here’s the most recent picture of Jack that I have of him on one of the last “good days” before he became unwell. It was taken last week. You can see the posture issue pretty clearly… but also his smile and joy. Those of you who know us well know that Jack’s always been the tricky baby of the two, always feisty, especially when it’s bedtime. Keep up the feistiness, little one!
Please send prayers, everyone!
I will update as I can.