Not three words you want to see strung together, but that’s where we are right now.
This is Beverlee’s son Matthew, creating a place where we can keep you all updated. Any words of comfort or support you want to get to Mom, you can post them here and we will relay them to her.
If you wish to send a card in the mail, you can send it to her her at the home address - 18 Foster Lane, Downingtown, PA 19335, and we’ll get it to her.
CURRENT STATUS 6/25/2019
BIG NEWS - Beverlee moved down the hall yesterday. She's now in room C-114 on the Center (rehab) unit - and she has a roommate now. (More on that in a separate post)
Radiation and chemotherapy continues - the schedule will be breakfast, radiation, power nap, lunch, physical therapy - which will leave Beverlee free for visits and calls after 2pm.
For visitors: Beverlee is on the rehab section of Parkhouse Nursing & Rehabilitation in room C-114 (NOTE THE ROOM NUMBER CHANGE). The address is 1600 Black Rock Road, Royersford PA 19468. The C in her room number stands for Center (there's a Center unit, a North and a West).
(If you've recently sent mail to C-108, no worries. The nurses know her, they'll get her the mail.)
Visiting hours are fluid but they prefer people come by after 10am but before 8pm, if possible. They are flexible, though.
For phone calls: Mom has her cell phone with her (wherever she may be), call her at 610-220-3102 if you want to chat.
Month 2 of (3?) (6?) (12?) (more?)
Day 33 of (30?) (100?) on Medicare Part A coverage
Radiation treatment 15 of 34
High grade glioma, aka gliobastoma multiform (GBM)
Without treatment, Beverlee has three to six months
With treatment, Beverlee has six to twelve months
Treatment would be a combination of chemo and radiation. Beverlee says she wants to try and fight it. She feels it'd be foolish not to try if there's a chance of getting a little more time.
As Beverlee has said, “This is crazy.” There’s no history of this kind of thing happening in our family, at least that I’m aware of. In the immediate family unit, it’s always been heart problems, rather than anything cancerous. And she was just in for cataract surgeries on each of her eyes just a month or so ago. She was getting used to the new world of not needing glasses all the time. Now instead of needing them to see across the room, she needs little reading glasses to help read what’s right in front of her instead. So a lot of the time, she’s glasses-free. Doctors were just poking around her head not once but twice, nobody ran across anything. Of course, no one was looking at her brain, but still… Beverlee is one of the more closely monitored people I’ve ever known (regular doctor appointments of all sorts) and nobody saw this coming.
There were no real symptoms until just a few days before my brother Mark took her to Phoenixville Hospital. Everything was going along fine and then suddenly she was having trouble getting any sleep. Then she would oversleep or forget and then miss appointments. It was Easter week and she had a lot of things to help with for church. She also was a regular driver for people who needed to go to the local food cupboard. And she started to miss several of these things. She even missed the sunrise service on Easter Sunday (4/21), which she loves.
Post-Easter, Mark began to notice that Beverlee wasn’t engaging in her normal routine. She’d just sit, and not really do anything all day, which wasn’t like her. Then there came a day where she didn’t even bother to get out of bed, and Mark had to help her. He later realized she also hadn’t been remembering to really eat or drink anything unless he reminded her, or ate with her. Then she couldn’t really get around at all on her own and he needed to assist her. She would try to help but the messages from her brain weren’t really getting to any of her limbs. Basic motor function had abandoned her, and this included being able to control how and when she would go to the bathroom. At this point he called in to work to take the weekend and get her to the doctor for some attention.
The doctor ran some tests and scheduled her for others and Mark drove Beverlee home. But at this point the neighbors conferred with him in the driveway when he arrived (they’d seen the two of them struggling to get to and from the car, and noticed Beverlee had not really been herself for a few days), and he agreed he probably shouldn’t wait but take her to the hospital for immediate attention.
The wait in the emergency room wasn’t long, and the staff quickly agreed that she should be admitted for more tests and observation. This was late Monday night (4/29), early Tuesday (4/30).
Tuesday morning the results from the CAT scan revealed a large mass on the right side of Beverlee’s brain. While Mark waited for the more detailed results of the MRI, he called Matthew. They waited. The MRI revealed a few things: that the tumor hadn’t originated anywhere else, so there wasn’t cancer or anything else concerning elsewhere in her body, but that’s also kind of a good news/bad news thing. The sort of tumor that would originate in the brain isn’t the kind of tumor you want (not that, I suppose, you want any kind of brain tumor at all). The tumor was a rapidly growing sort and had grown from the right side and now was encroaching down the back of her head as well. The swelling associated with all this was putting pressure on the brain that was causing a lot of the problems with headaches, general awareness, and motor functions. And unfortunately, because the mass was already so big and widespread, removing it wasn’t an option. In taking that much out, they’d inevitably also take enough of the brain with it that Beverlee wouldn’t be herself anymore, or be able to do anything for herself.
They put Beverlee on some steroids (decadron), which reduced the swelling and quickly started to return a lot of the awareness and function she’d lost. When the results of the MRI were reported, Matthew got a plane flight out of Minneapolis, Minnesota for the next morning (5/1) to join Mark in Pennsylvania and help out for a few weeks with the situation both at the hospital and at home.
Over the next several days, with the swelling and pressure on her brain reduced, Beverlee was more like herself. Regular meals and some rehydration through an IV, got her body back on track. Staff was impressed with her continued progress in terms of strength and ability to move around. She still needs a lot of assistance getting in and out of the bed and chair in her room, but when she’s moving using the walker, she gets around quite well. Going to the bathroom is still a challenge, but as the days progressed she was better at getting to the bathroom in time to take care of business, rather than just doing it where she was sitting or lying down. She’d feel better if she were back in full control on that front, but they’re working on it.
Something most visitors probably don’t notice, but her sons do, is that Beverlee is remarkably unperturbed by the whole situation in a way that isn’t entirely like her. Normally, she would be worrying either about the medical situation, or about how things are running at home. Normally, she would be sad when people, particularly her boys, had to leave. But none of this bothers her. Which is a blessing, for her, for which we’re very grateful. But it’s also a little piece of her that’s gone right now. And we don’t know if it will return. And so we mourn a little that piece of Beverlee that has left us. But we are very happy for all that we still have.
There will be rough times ahead. If you’re the praying type, please keep us in your prayers. If you’re not the religious sort, all positive energy and good wishes are welcome.