Annie: On Memorial Day (5/29) in the morning Matt was really excited to tell me about a dream he’d had and the three-tiered structure of a concept that was coming to mind. I don’t think he’d slept much the night before as he mulled over this new idea. After more than an hour of Matt trying to describe it verbally and in writing and in drawings, I asked to take a break so I could make progress on some other household tasks.
I mowed the lawns while Matt watched a movie and when I was done asked him if we could watch the replay of the church service we’d missed out on the day before. We watched it and it involved the use of post-it notes to demonstrate that throughout time God has been working through moments of trauma and moments of joy.
We probably finished up watching around 1pm and Matt began to look back and forth repeatedly between his snack on a plate and a bag of chips nearby and started talking in repeated loops of words and ideas. He was clearly distressed about what was happening, but was able to break out of it for about 20 minutes to talk about what he was experiencing and for us to both pray. Then the loops of words and ideas came back with intensity and with the addition of paranoia.
Matt was still able to follow directions to eat and take medicines and get ready for bed, but it was a struggle since he was compelled to keep talking. Several of his loops of words included trying to reach a key phrase or word that just wouldn’t come forth and then rebounded him back to the beginning. I don’t know if the power of suggestion had anything to do with it, but Matt began repeating the word Memento–the name of a movie that features a character who uses post-it notes to manage his severe short-term memory impairment.
Matt did not sleep, but rather talked all through the night. Many, many times I prayed that Matt would be freed from whatever he was stuck in and tried my best to remain attuned and responsive to him. Matt’s ramblings became more disturbing and it made me wonder if he was headed toward his passing from this life.
In the morning I decided to take Matt to the hospital. As I packed the car to get ready to go, Matt followed me around trying communicate to me about the “missing word”. He went downstairs and upstairs and navigated all around the house without using his walker–and he did really well, but he was clearly very agitated. Sometimes he screamed and cried also. I tried to get him into the car, but he was resistant. I ended up calling for an ambulance.
They arrived quickly as we’re less than a mile from the fire station. The medics remembered Matt and I from earlier in the month. They checked his vitals (all fine) and tried to calm him while I called the oncologist office. The consensus was to go ahead to take Matt to the hospital since a scan was probably needed with this significant change in cognition and behavior.
The ambulance took Matt since we were able to get him onto a stretcher and I followed behind. I regretted having just posted a “success” story in MP 35 when we were clearly going downhill–fast. Miraculously the ER waiting room was empty so Matt got right in to be seen. Although he was agitated, talking constantly, he was still able to answer some questions from the doctors. All vitals were good, but they still wanted to do a CT scan of the brain. Matt had to be sedated so that it could get done.
The initial results from the CT were that the tumors and the swelling in the brain from them had greatly reduced and that there wasn’t any clear evidence if seizure activity. So, the initial hypothesis was that Matt had had a BAD reaction to having too much steroid in his system. He was admitted to the neuro unit to do an overnight EEG scan of brainwave activity to definitively see if there were micro seizures happening.
Matt’s mom came to be with us in the hospital and she and I distracted Matt from moving around while 25 electrodes were glued to his scalp. I reassured him dozens of times that he was okay and safe and that he was just getting a scan of his brain waves. He kept thinking that he was being given full-brain radiation–it was so hard to see him not be able to hold onto new information.
I briefly ran home to check on the pets and pack an overnight bag for Matt. When I returned I continued to answer the same questions over and over for Matt and reassure him that he was safe and getting good help. His voice became more and more hoarse from having talked constantly for over 24 hours (and from having been awake for much more than that!). Around 11pm I lay down on the couch in the room to try to get some sleep myself and Matt became concerned that I was unwell. He wanted the nurse to take care of me–he insisted that I needed more water when I told him that I’d just had some only 20 minutes ago and said to the nurse, “Look at my wife, she’s so lethargic.” He eventually fell asleep around midnight.
I left the hospital around 1am (5/31) and was awakened at 2:45am because a smoke alarm was chirping–so I changed a battery–why does this always happen in the middle of the night!?
I was reawakened at 5:25am with a call from Matt’s nurse as Matt was insisting that he needed to be taking his medicine. I had only silenced the “take meds” alerts on his phone from the previous day and had to reassure Matt that he could follow the nurse’s directions on when to take medications. I got back to the hospital around 8 and by 9:30 we received the results that Matt had not had any seizure activity. All of this tribulation had come from having too much steroid. The doctor put him on a plan to continually step down the amount of steroid over the next two weeks and then to be on the minimum dose until Matt’s next scan where, hopefully, there will be zero swelling and he can stop taking it altogether. We were discharged that morning with a much more simplified medication schedule!
This was wonderful news to learn that the tumors are shrinking and Matt wasn’t having any seizures. We were both extremely fatigued and Matt’s voice was gone, but I was still able to see my clients on Wednesday and Thursday between lots of naps. Matt has again made steady progress once he was more caught up on sleep. He has shared with me other ways that he’s also experiencing improvements. Yesterday evening we got out to our backyard arm-in-arm for a slow loop around the perimeter to see what’s blooming and what’s still to come.
We’d appreciate prayer for: the ability to healthily process the mental/emotional trauma that the steroid caused (and relief from the hyper-vigilance/anxiety it has caused over every bodily sensation), continued restorative sleep at night, healing for Matt’s voice and continued overall healing.



























