There is not a great deal more that I can update about Jack’s care plan, as we still have not got the final word from pathology. So much hinges on that right now. Although I feel uplifted, (as I know so many of you do) by the prospect that this may not be cancer, I’m getting very wary of the phrase “almost certainly” around here. The first words out of the neurosurgeon’s mouth a week ago were “almost certainly malignant”, followed up, a day later, by the phrase “high level malignancy”. And now we’re hearing “almost certainly NOT malignant”. I don’t really dare draw any conclusions until we have that pathology report.
We did have a chat with Dr. Walter, the amazing oncology doctor who took the time to write me a lengthy email over the weekend in response to my frantic worries. He gives out information in a beautifully slow and steady drip, allowing us to process one thing at a time. There are several paths that Jack’s treatment may take, depending upon upcoming conversations between the neurosurgery, oncology, and PICU teams, so I won’t detail that here just yet.
What I can say is that because of initial results indicating that this is “most likely” not the highly malignant cancer that it was initially “almost certainly” going to be, the treatment plan is shifting away from doing chemo first in order to shrink the tumor, and is instead moving towards a big and very scary surgery.
What we are struggling with today are the risks of that surgery, which are significant. Once we have a more concrete plan of action, I will update everyone on what those risks might entail. Thanks for your patience, everyone. I hope we will know more soon about that.
As for Jack’s day today…. it started out strong, but things got tougher as the day wore on. Jack was sleepy all day, but by around 4:30, he started acting pretty non-responsive… just staring, unblinking, not even the nystagmus to move his pupils, for ten seconds at a clip. It just made my stomach lurch when I witnessed it. The decision was made to open up the drain in Jack’s head and let out some of the cerebral-spinal fluid that was causing the pressure to build once again.
I had expected the drain to work like a faucet – you turn it on, you take the amount of fluid that you need, and then you turn it off. But that’s not how it goes. Instead, the drain just stays open. A fairly large amount of fluid comes out initially — by fairly large, I mean like, two tablespoons— (bet you never thought you’d read a blog measuring spinal fluid in tablespoons), and then it tapers off as the pressure equalizes. The drain stays open, because the best way to know how much or how little to drain (apparently) is to let it just work its way out. If anyone can find me a good layman’s description of how such a drain works, I’d appreciate it, because I was so horrified and grossed out that I wasn’t able to pay much attention the four times it was explained to me.
The good news is that the drain definitely worked. We had our old Jack back for a few hours after the drain was put into action. He pulled my hair, shook his rattle, fought the nurse who was trying to change his diaper, and even gave our amazing nurse, Chuck, a taste of his impressive stink-eye while Chuck took his temperature. If looks could kill….
Jack is now resting. His breathing is still not stable, and he’s had to go through some pretty awful suctioning today. Sounds like yet another breathing tube will soon be a reality for him, although with the likelihood of surgery looming, that may not be the worst thing.
So this is one tired mamma, signing off for now… but first, a big thank you to Marie Seymour Green and John Green for the beautiful gesture of burning a candle in their window until Jack has recovered. I’ve thought about that light all day- it’s like a light house, keeping us safely on the road.