EditJenney Journal, part 28

I believe that Jenney will be healed, fully and completely, and by the grace of God will see her children grow and meet her grandchildren.

“But let him ask in faith without any doubting, for the one who doubts is like the surf of the sea driven and tossed by the wind.” - James 1:6

I’m doing my best to not feel driven and tossed by the wind, to believe without doubting. When I can manage it, I feel peace, and when I cannot, I’m ravaged like the surf in a storm.

Jenney has been losing weight over the last month. When she stopped eating everything on her plate at dinner, I started taking note. She said she felt nauseas after eating. After a little while it was after drinking as well. I started tracking how much she ate, encouraging her to drink by making her tea, or finding novel sugar-free beverages.

About a week ago she started feeling cold, all the time. Jenney had her last double immunotherapy treatment on Friday. The Thursday before, she said she couldn’t get warm. On a warm day we went to her typical neuro post-op and while I wore shorts, she covered up with long pants, long sleeves, and wore a winter coat. She had a slight fever when the nurse checked, and we blew it off a little as during the previous visit to her oncologist, he mentioned that feeling cold was typical. We figured the elevated temp was due to wearing such warm clothes on a hot day.

Over the weekend I started recording her temperatures. She had fevers during the night, chills during the day, and headaches sometimes accompanying the fevers. I consulted with the oncologist who recommended Tylenol every 4 hours, which seemed to help bring her temperature down. She would barely eat, and barely drink. The fever continued, and on Monday, our oncologist asked us to come in to get blood cultures and urinalysis to check for infection. They found nothing. Her fevers continued.

8/11/2020 On Tuesday around 3 she awoke from a nap and her fever hit 102.5. I took her to the emergency room at the recommendation of her oncologist. They wouldn’t let me wait with her to be admitted, but she could call me once she was admitted. I made sure to iterate that to Jenney, to call me as soon as she went back. I waited in the car for over an hour and finally called to check if she had been admitted. She answered and said she had. I tried to go in but couldn’t get past security as I had forgotten my ID, so drove back home (just 10 minutes away thankfully) got my wallet, and headed back to the hospital.

In the ER Jenney laid there on the bed, awaiting a doctor or nurse. They wheeled her back to get a CT scan, and a chest x-ray. Then they drew blood again for lab cultures from both arms. Then wanted to do a covid test, but Jenney refused. She’d had two of them previously and really couldn’t tolerate the swab being pushed so far into her nose. The doctor came back to explain that they wanted to do an MRI but had to go through the hospital to do it, and for that she needed a test. She offered Ativan to sedate her, and said she did not have to have the test, and they would still admit her, but she’d need to be quarantined and would not be able to have any visitors.

I asked how long the results would take and she said about 2 days. “So she won’t be quarantined until the results? She just has to have the test, not a negative result? How does that make any sense?” She couldn’t explain.

Jenney agreed to the test so that I’d be able to be with her. Once the Ativan kicked in the nurse came back and said she’d be super quick and very gentle. She’d had the test herself and knew how to do it well. Jenney tolerated it pretty well under the influence of the Ativan.

They admitted her to the hospital and I left to go get the kids dinner and help Jeanne get them ready for bed. Jeanne was going to leave just the day before but decided not to since Jenney was having fevers and was in bed all the time. Once the boys were down, I left to go sit with Jenney. Her short term memory was deteriorating, but she was conversing with me at least. They had her on antibiotics and saline with electrolytes and she at least had her appetite back. I fed her some dinner that she ordered from the hospital. That alone felt nice as she hadn’t been able to eat anything other than a little soup and crackers in almost a week now.

8/12/2020 The results of the x-ray of her chest were clean. There were some markers in her blood though for pneumonia which was why they had her on a general antibiotic IV. They would do the MRI today and I noted that Jenney was having more trouble finding words, and couldn’t remember something we were talking about just 5 or 10 minutes ago.

I visited her three times, morning, afternoon, and evening, and each time she was only getting worse. Being 10 minutes away was convenient, but it was still hard to go back and see her worsen each time, and come back home to report to Jeanne that I saw no improvement. I kept texting her oncologist and neurosurgeon to keep them updated with what I saw.

8/13/2020 When I went in to see her in the morning, she recognized me, said she recognized me, but couldn’t tell me my name, nor her own. I fed her breakfast and talked with her nurse. She was extremely tired and kept falling asleep. Around noon the Dr whose care she was under called to say they were going to order a lumbar puncture (spinal tap) to check her spinal fluid for infection. I went in and signed some papers and they did the procedure around 2:45pm.

I admit that at this point I was starting to despair. I kept the words of James in my head, to not doubt. I rebuked the spirits of fear, worry, and doubt out loud in Jesus name. I asked Jesus to guard my heart and guard my mind. I haven’t stopped asking Him multiple times a day.

8/14/2020 I got to the hospital early as Dr Senecal said he would be there around 7am. At 7 they started her IV drips and she immediately starting having a very bad headache, worse than I’d seen since before her first surgery. She laid there cringing and crying and trying to breath as I held her hand and cried with her. They gave her some Tylenol and then wheeled her out to get a CT scan stat. They tried to get her into a wheel chair but couldn’t so wheeled her bed instead.

Dr Senecal came in around 7:45, took her vitals, and did a nuero test. She was not able to say her name, but was strong and could follow some simple directions. She lifted the wrong leg when asked, but got it after some tries. Dr Senecal called our neurosurgeon Dr Goldman and I listened to them go over possibilities, results from the spinal tap, etc. They had no ideas, but wanted to transfer her over to St Joseph’s in Tacoma where they have more specialists and could access her more easily since they are both based there.

Dr Senecal left and came rushing back in about 10 minutes later stating he thought it was encephalitis due to the immunotherapy. He ordered dexamethasone (a steroid she’s been on more than not this year) and left again.

They came to transfer her around 4:30pm. At this point she didn’t recognize or acknowledge me, and I lost it. She just looked uncomfortable and upset. I signed the papers to transfer her, gathered her things and headed home again.

I went over to her room at St Joseph’s around 8pm. Her nurse came in briefly but I visiting hours were over at 9 and I had to leave. I took our calendars again, the ones she’s made over the years with pictures from the year, and placed them around her room then left my contact information and a bunch of notes on the board for her nurse.

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