We hit the road for Cleveland yesterday morning at 9:15, arriving a little late to our appointment with the radiologic oncologist. No worries, though; after being shuffled back and forth from one floor to another, we finally connected with him and he laid out an initial plan for the next week or so.
I’m glad we saw him first, as some of what he said was hard to hear. The initial reaction to the pathology from our primary oncologist was that at first glance, Michael has a small brain tumor. According to the radiologic oncologist who examined the imaging in greater detail, there are three tumors in his brain. “At least three,” to be specific. We asked some questions about the planned gamma knife radiation surgery, and discussed other options as well. It was decided that gamma knife was the preferred procedure (as opposed to brain surgery or whole-brain radiation), as it is minimally invasive and doesn’t carry the more dramatic side-effects of whole brain radiation, such as memory loss, hair loss, and vision issues.
While this doctor pulled no punches with regard to the stage of Michael’s disease, he was confident that they could zap these tumors — or at least shrink them — with the gamma knife.
Then it was on to see the neurologist who’ll perform the procedure. He walked in the room, and it was like a performance. Energetic, friendly, funny guy, and definitely not what we were expecting! I fought the urge to giggle at his likeness to Eugene Levy, so I snapped a surreptitious photo for later sharing. haha
He had us both laughing and feeling a bit more at ease, and we appreciated that.
Bottom line with both doctors was that we can’t move forward with chemo for the lung cancer until the brain issue is sorted. I confess it’s been frustrating that we are now 23 days out from his diagnosis, and he has received not one single treatment. This patience thing, lemmetellya…good thing we both already have a head full of silver hair. We’re keen to get this train moving.
All was said and done by 3:00, and we were both mentally exhausted and starving. We stopped to pick up dinner at Chipotle in Brunswick, took it home and wolfed it down. Then our new sleeper sofa arrived, and here was baby boy to the rescue, schlepping it around and assembling it at 9:30 p.m. after he’d worked all day. He’s a good son.
Today, we travel to Columbus to see about getting Michael a car to take to treatments once school starts. He may not always feel like driving, so Mavis has graciously consented to take him to Cleveland when I can’t go with him, which is a great comfort. I cannot overstate my appreciation and love for my family members who have flown to our side, both physically and otherwise. I know it’s hard on four of Michael’s children who live in Texas, but they’re in contact with us every single day, and we’re all discussing a visit soon, which brings their father and me great joy.
And speaking of comfort and joy, have I thanked you all for praying for him and for our family? A friend texted yesterday and wanted to know how Michael was doing, but admitted to being reticent to ask because “everyone is probably asking you the same questions.” On the contrary, I will never tire of talking about his bravery, humor and grace in the face of this vicious disease.
More updates soon! Thanks again for coming along on this journey with us.
#teamthriller
Whole brain radiation used to be a major aspect of the treatment of children with acute leukemia because the disease is so aggressive and clever that it learns to hide from standard chemo behind the blood-brain barrier. But the side effects, as you note, are bad- and especially so for kids, since often things like their growth glands were being tweeked. Now they use intrathecal chemo, which is putting chemo in via spinal tap.
Weird that its been over 3 weeks and not a single treatment. If intetested I can direct you to a site that gives you access to standard oncology treatment guidelines for all US health networks. it’s this enormous, evidence-based flow chart used by all oncologists and you can see exactly what they are thinking and you can see several steps ahead of where you are. It takes some of the uncertainty and seeming randomness out of this otherwise overwhelming process. Some people like to know, some prefer not to. Go TeamThriller!
Ross, please do send me that information. We are both “the devil you know” types, and I am interested to learn what goes on outside our situation.
Thanks for the update, with pics even!
Praying…without ceasing!
All in for #team thriller
Peace
Hugs to you Dave! Thanks for always being there,dear friend.
Praying! Praying! Praying! for both of you collectively and individually. Thanks for the update. If help can help with transportation, please do not hesitate to let me know.
Thanks RD – we love you!
So good to hear that you have such a fabulous support system! Your “Dr. Levy” would have been the highlight for me too…no one can eyebrow quite like he does!
Continued prayers for the kick-arse #teamthriller <3
“Eyebrow” as a verb….I’m totally stealing that!
Thanks Darice – we are so so so fortunate to have this support around us as we set out to kick this thing to the curb. This little journaling project helps me personally, and it’s great to know others are reading and supporting that way, too!
You guys make it easy to support you. You’re both loving and caring to all of us! We are going to take this “Odyssey” one day at a time, and kick it to the moon and back! Thriller still has lots of mileage to cover and we will all be with you both for every mile. We all love you guys!!!
We love you too, Mave — one day at a time, absolutely!
Keeping you in my prayers. If there is anything I can do from the Cleveland end, please don’t hesitate to ask.
Thank you Nancy — that means the world!