Jeanne reported in to me in the morning. Around 7:30am the neurologist came in and said Jenney was doing better than he anticipated with the drain clamped. One more day and then it most likely can come out. Woohoo! He said he was meeting with oncology and OB the following day to discuss next steps. Jenney still had a small headache and double vision from the trauma of the migraines, but she was doing better than expected as he didn’t think her body was going to tolerate the drain being clamped yet.
The oncologist had asked the neurologist to send him a sample of the CSF to see if the cancer cells were present, but the neurologist thought there most likely would be because of the surgery and it wouldn’t mean a whole lot at this point. A spinal tap later on might be more prudent.
He also mentioned that an oncology surgeon would be in to consult with us about removing the nodules that were found in her back to hopefully slow down the progression until after the baby is born.
At home Mom and I got the kids ready for school. I also talked with our neighbor Carl who had been generous enough to redo our front porch steps, getting them to code and putting up some solid hand rails. I took him through the house to look at a few other things; the rails up the stairs to the second floor could use some extra securing, and the showers where we might put in a handrail in case Jenney would need it. Then he took my trash can down the lane and out to the road for me. What a guy. I don’t know how I got so lucky to have such amazing neighbors.
After walking the kids to the bus stop and talking to the moms who were also dropping of their kids, giving them updates on Jenney and assuring them we had all the food and groceries we needed right now, we put Sebastian into a friend’s car who took him to preschool for us. Once he was off, I grabbed my backpack of things for Jenney and myself at the hospital and headed back in, around 10:15am.
Around 12:20 I was on the phone with a nurse from the insurance company. It turns out my insurance company provides nurse specialist to help you through times like this, offering advice and help in choosing procedures, providers, and questions to ask doctors. So far I have one for OB and one for oncology, and they’ve both been super helpful, not at all what I’d expect from an insurance rep. But then they’re nurses first and foremost.
At 1pm another oncologist came to see us, one who specialized in the gamma knife. He answered all of our questions and provided materials on the procedure and the machine. He mentioned that there is a significant enough amount of radiation scatter that he would prefer to see the baby born before going forward with the procedure. He said that it has been done before, but the number of cases are so rare that they really don’t have enough data to convince him that it’s safe for the baby.
So we were back to now thinking we need to have the baby early again. Jesus, please let us off this roller coaster…
Mom brought Sebastian to see us around 1:30. He ate up his snack and talked his mom’s ear off, gave her some much-needed snuggles, and flirted with the nurses. He’s such a character and the nurses talk about him when he’s not around. They left a bit later as a speech therapist came in to see us at 2pm.
The speech therapist said she thought everything seemed good, but I pushed her a little to do some typical evaluations so that we could measure progress over the last week. Jenney went through much of it with flying colors. She did get hung up on generating data - doing activities such as naming things in a category, like 5 things that are the color red. Or finishing a sentence like, “Last night we…” without repeating a phrase. Another related difficulty is generating a lot of things over a minute in some category, like “List things that start with w”. The therapist gave us some worksheets so that we can work on those things, but said they are the more advanced cognitive skills and they would no doubt get better with a little more practice and time, and she was going to recommend that and not therapy at this time. Another win!
Jenney’s headache started going up after all that, and so we stopped and got some Tylenol from the nurse, and she took a nap while I wrote.
When she awoke around 4pm, her headache was gone and she wanted to walk. We walked around the quad without a walker. This was the first time I’d seen her walk without a walker and I felt so damned proud of her! When we got back to the room, she sat up in the chair for about 30 minutes, then wanted to lay back down.
Mom brought Vincent to visit around 5:30pm. My mom needs an Uber sticker on the van evidently. ;) Vincent hugged his mom and me and asked questions about everything in the room again, noting things that had changed. He talked a little about his day and then we played tic tac toe a few times. When it was time to go, Jenney started crying, which set Vincent to crying as well. He seems to be afraid of being sad and ran to my mom instead. I calmly walked over to him, took his hand and Jenney’s hand and explained to him that it was okay to be sad. We miss mom, and this is a sad situation we’re in, and it’s ok to cry - in fact it may make you feel better. We all hugged and he continued to fight the tears. It’s so not fair that he has to deal with this, and I think that is what set Jenney off in the first place. Vincent and Mom left and I held Jenney as we cried it out a little more. Then she fell asleep for almost 2 blessed hours. I wrote some more, and prayed.
Jenney woke up around 8pm and we watched a couple of shows online, and got some more intermittent sleep throughout the night. She awoke at 1am to go to the bathroom and I shot up out of the chair I sleep in, full of adrenaline. I’m not exactly sure why. I couldn’t get back to sleep and started worrying - all the dark thoughts come in the night it seems. Corona virus outbreaks, how the kids are dealing with this, thoughts of my father dying of melanoma back in 2006… then a friend messaged me. We talked for a hour or so about virtual reality, our friends, reverse engineering, obsessions and dreams. I thanked him for getting me out of a panic attack, then fell back asleep until they came for blood at 3.