Report from Rory this week: "Colton is turning into an amazing 'helicopter parent.'" Since witnessing last week's episode, he's been the one to literally hover over her, checking on her often and making sure she's on her medications schedule. I guess having a strong need for having and keeping a schedule is coming in as useful! We loaded up the Alexa devices with reminders for many things, including Rory's medications, and all of the kids are very good to drop whatever they are doing to make sure she has water, meds, snack, and whatever else she needs.
Monday I attended her regular Dr appointment with her primary care physician. Mostly Dr. Schaplow is the manager of all the other specialists, but she's really good to listen to all of what's going on and offer her support and ideas. For better or worse, Rory had another seizure right there during the appointment. We think maybe all the rapid-fire discussion of all the things going on might have triggered that place of stress in her brain at that very moment. She is going to look into the possibility of Tricare covering some visits to their newly-arrived therapist to try to figure out more of those stress triggers and hopefully set up some safeguards.
This was week 1 again of the next round of chemo. Sounds like Rory was mostly "down" with some brief slivers of light. Thankfully some members of the ward were happy to step in and help with visits, drivers for Kylan, and other pick-me-ups, especially while my parents were out of town.
Saturday the ward sponsored a community "Fall Festival" complete with carnival-type games for the kids. Rory decided last-minute that she had enough energy to give it a try, and she came home both thrilled at the chance to visit with so many people, and thoroughly exhausted after visiting with so many people. Was the best kind of therapy to exchange hugs with people she hadn't seen for way too long.
Yesterday we kind of had to boss her to get up and eat after we found her blood sugars back down into the 40's. (Doctor says anything below 100 is considered "Go Time" for food intervention.) We'll probably have to move up her Sunday morning 9:00 levels checks, medications and breakfast since the rest of us all leave before 8:30 and she apparently will choose sleep over snacks. Hey, if we're learning something new each week to make things work better, that's progress, right?
Got another week full of appointments and events. Hoping to keep that positive momentum going.
Monday, October 28, 2019
Sunday, October 20, 2019
More helpers?
Yesterday (Saturday) Rory had visitors in the morning, and we all went to Cross-E for the pumpkin patch outing. So in all, it was a good day for her. True, we got "rained out" at the ranch, and they closed up the site before we got to do much, so that wasn't so great. However, we all got to go, spent time together, got wet together, and made memories. Oh, and we got Rory's new favorite donuts!
We decided on the way home to stop by Deseret Book to pick up an ordered copy of last year's Christmas Special with Kristen Chenowith and the Choir at Temple Square, something for which Rory had made a special request. Since the rest of our day kind of went south with the wind and rain and mixed snow, we made the decision to do dinner at Chuck-A-Rama. Everyone certainly had their fill, including Rory, so the day ended well!
This morning when I checked in with Rory she said she wasn't feeling well enough to go to church. We kind of figured after such an energy-draining day yesterday, that today would likely be one of her "recovery" days. She wasn't awake when we left for the ward activity at the Salt Lake Cemetery, and was asleep when we were meeting for family dinner. She had requested a special discussion with all the kids about her seizure last Friday and plans going forward, so that got done after some good Come, Follow Me discussion.
As we headed into some family game time with the grandparents, we heard Rory calling from downstairs. When I got to her, she was frantically asking what day it was, and what time it was. She started sobbing that she had "slept the whole day away" and was more than distraught that she had missed out on everything. Her emotions were much more severe than seemed reasonable, and eventually we were able to talk enough to find out she really HAD slept the whole day, meaning she hadn't even eaten anything! Blood sugar levels were checked and found to be in the 40's, which to me explained her extreme emotional reaction. We heated up the dinner for her, got her medications taken, and slowly her speech and overall emotional state seemed to stabilize. The kids came down to check on us, and we had some additional discussion and made plans to ensure she doesn't miss meals again in the future. During that discussion Colton realized that Rory wasn't responding, so we walked her down to the bedroom just as another seizure started up. This time I was able to coach all of the kids through the event, and they were true troopers! Colton held his mom's hands, asking her to respond by squeezing his hands. The kids collected bottles of cold water. After a couple of minutes the shaking subsided and she came back to regular consciousness. Again, the kids were all very attentive and mostly seemed to handle things.
Except Colton.
He really struggled for the rest of the night, and every few minutes felt like he needed to check on Rory or thought he heard her medical whistle or just decided to go see if she was OK. He asked for a blessing, and afterwards has apparently calmed down for the evening. Rory repeatedly told him that she's going to be OK, and that she wants him to be able to continue with his exercise and lessons and school and other activities, that she has help here at home to allow him to continue being himself. I'm hopeful that he is able to process all of what's going on, to the point that he will be able to have a semblance of normalcy while still being able to give attention to his mother. His comment, "I'm not ready to lose her yet" was both heartbreaking and hopeful. I guess it was good that her first cancer came when these three kids were basically too young to really understand the gravity of the situation. This time around they certainly DO "get it" and the concern is obviously how they will ultimately react. I would never wish this on anyone's kids; what a blessing to have older siblings and grandparents and friends who are ready to step in and help them.
We decided on the way home to stop by Deseret Book to pick up an ordered copy of last year's Christmas Special with Kristen Chenowith and the Choir at Temple Square, something for which Rory had made a special request. Since the rest of our day kind of went south with the wind and rain and mixed snow, we made the decision to do dinner at Chuck-A-Rama. Everyone certainly had their fill, including Rory, so the day ended well!
This morning when I checked in with Rory she said she wasn't feeling well enough to go to church. We kind of figured after such an energy-draining day yesterday, that today would likely be one of her "recovery" days. She wasn't awake when we left for the ward activity at the Salt Lake Cemetery, and was asleep when we were meeting for family dinner. She had requested a special discussion with all the kids about her seizure last Friday and plans going forward, so that got done after some good Come, Follow Me discussion.
As we headed into some family game time with the grandparents, we heard Rory calling from downstairs. When I got to her, she was frantically asking what day it was, and what time it was. She started sobbing that she had "slept the whole day away" and was more than distraught that she had missed out on everything. Her emotions were much more severe than seemed reasonable, and eventually we were able to talk enough to find out she really HAD slept the whole day, meaning she hadn't even eaten anything! Blood sugar levels were checked and found to be in the 40's, which to me explained her extreme emotional reaction. We heated up the dinner for her, got her medications taken, and slowly her speech and overall emotional state seemed to stabilize. The kids came down to check on us, and we had some additional discussion and made plans to ensure she doesn't miss meals again in the future. During that discussion Colton realized that Rory wasn't responding, so we walked her down to the bedroom just as another seizure started up. This time I was able to coach all of the kids through the event, and they were true troopers! Colton held his mom's hands, asking her to respond by squeezing his hands. The kids collected bottles of cold water. After a couple of minutes the shaking subsided and she came back to regular consciousness. Again, the kids were all very attentive and mostly seemed to handle things.
Except Colton.
He really struggled for the rest of the night, and every few minutes felt like he needed to check on Rory or thought he heard her medical whistle or just decided to go see if she was OK. He asked for a blessing, and afterwards has apparently calmed down for the evening. Rory repeatedly told him that she's going to be OK, and that she wants him to be able to continue with his exercise and lessons and school and other activities, that she has help here at home to allow him to continue being himself. I'm hopeful that he is able to process all of what's going on, to the point that he will be able to have a semblance of normalcy while still being able to give attention to his mother. His comment, "I'm not ready to lose her yet" was both heartbreaking and hopeful. I guess it was good that her first cancer came when these three kids were basically too young to really understand the gravity of the situation. This time around they certainly DO "get it" and the concern is obviously how they will ultimately react. I would never wish this on anyone's kids; what a blessing to have older siblings and grandparents and friends who are ready to step in and help them.
Friday, October 18, 2019
Dizzy yet?
Getting dizzy from this ride? I think I am.
Tuesday Rory said was a REALLY good day. She felt good, no pain, had energy. She spent most of the day with the kids, had an in-home visit from a good friend, and probably more that I'm forgetting. Since this is her "OFF" week from chemo, that was certainly something we all hoped to see more of this week. However, Wednesday was a half-way good day - I figured after such a GREAT day on Tuesday, maybe she had over-done it and was worn out? By Thursday it was a NO GOOD day again, mostly due to a raging headache accompanied by extreme fatigue and nausea again. Hoping for another upward trend?
Thursday we also met with the Palliative Care team again. Kevin in particular speaks to Rory exactly the way she needs. He listens, responds in a way that proves he's hearing and understanding and incorporating what she tells him, and she really appreciates that. So even on a day like yesterday that was so crummy, she always feels better after consulting with that team. The result of that consult is we're trying a different medication for the nausea, and by mid-day Friday Rory said it was much better. So write that one down as a "win." They still aren't ready to start tapering off from the heavy-duty pain meds, though, so we'll probably keep dealing with fatigue issues.
Another struggle is that nothing seems to taste good to her right now. That of course leads to low blood sugars which could be contributing to both the headaches and nausea. Very hard to "just eat" when anything and everything is gross, and when she feels like (and sometimes does) she's just going to throw it all up anyway. But hopefully that will improve for her over time.
This afternoon was another seizure spell, probably the first one since the day after we got home from the hospital. I recently got a couple more Amazon "Dot" devices, specifically so we have one near Rory and another one in my office. So today I was talking my dad and Kaeli through what to do and say for Rory, based on what I observed from the nurses. It took a few minutes, but she came back around eventually and was back to normal. As usual, she didn't remember what had happened. This time she called just before it started and told me she felt like what it felt like last week, but that she wasn't shaking, which was odd. And then she had the episode. So maybe we'll get some warning before they happen? As a reminder, the doctors concluded these seizures aren't epileptic, meaning they aren't medically dangerous. Although that's reassuring on some level, they sure are scary for her and for us, though!
Keeping our fingers cross that Rory is able to go with us to Cross-E Ranch tomorrow. She really enjoyed going last year after having it recommended, and she is looking forward to it being an annual family pumpkin patch tradition.
Tuesday Rory said was a REALLY good day. She felt good, no pain, had energy. She spent most of the day with the kids, had an in-home visit from a good friend, and probably more that I'm forgetting. Since this is her "OFF" week from chemo, that was certainly something we all hoped to see more of this week. However, Wednesday was a half-way good day - I figured after such a GREAT day on Tuesday, maybe she had over-done it and was worn out? By Thursday it was a NO GOOD day again, mostly due to a raging headache accompanied by extreme fatigue and nausea again. Hoping for another upward trend?
Thursday we also met with the Palliative Care team again. Kevin in particular speaks to Rory exactly the way she needs. He listens, responds in a way that proves he's hearing and understanding and incorporating what she tells him, and she really appreciates that. So even on a day like yesterday that was so crummy, she always feels better after consulting with that team. The result of that consult is we're trying a different medication for the nausea, and by mid-day Friday Rory said it was much better. So write that one down as a "win." They still aren't ready to start tapering off from the heavy-duty pain meds, though, so we'll probably keep dealing with fatigue issues.
Another struggle is that nothing seems to taste good to her right now. That of course leads to low blood sugars which could be contributing to both the headaches and nausea. Very hard to "just eat" when anything and everything is gross, and when she feels like (and sometimes does) she's just going to throw it all up anyway. But hopefully that will improve for her over time.
This afternoon was another seizure spell, probably the first one since the day after we got home from the hospital. I recently got a couple more Amazon "Dot" devices, specifically so we have one near Rory and another one in my office. So today I was talking my dad and Kaeli through what to do and say for Rory, based on what I observed from the nurses. It took a few minutes, but she came back around eventually and was back to normal. As usual, she didn't remember what had happened. This time she called just before it started and told me she felt like what it felt like last week, but that she wasn't shaking, which was odd. And then she had the episode. So maybe we'll get some warning before they happen? As a reminder, the doctors concluded these seizures aren't epileptic, meaning they aren't medically dangerous. Although that's reassuring on some level, they sure are scary for her and for us, though!
Keeping our fingers cross that Rory is able to go with us to Cross-E Ranch tomorrow. She really enjoyed going last year after having it recommended, and she is looking forward to it being an annual family pumpkin patch tradition.
Wednesday, October 9, 2019
Plan forward
Rory was discharged from the hospital yesterday afternoon with a repeat of instructions / recommendation to meet with a Psychologist to investigate other non-epilepsy potential triggers for the seizures. We have that appointment set for Thursday. They also set an appointment to meet with their epilepsy team ... on JANUARY 8! Seems a bit "far" into the future to me, but I guess we'll see how the next few months go.
Everyone was very happy to have Rory back home. She did have at least one other event during the evening, and we're trying not to be worried about them. Yeah, that's not so easy. But hopefully some extra rest will help calm things down.
Will check in here again when there is more to update. Thanks to everyone who has let Rory know she is in your thoughts and prayers!
Everyone was very happy to have Rory back home. She did have at least one other event during the evening, and we're trying not to be worried about them. Yeah, that's not so easy. But hopefully some extra rest will help calm things down.
Will check in here again when there is more to update. Thanks to everyone who has let Rory know she is in your thoughts and prayers!
Tuesday, October 8, 2019
What it isn't
Just heard again from the doctor. He confirmed that the epilepsy team specialist agreed that Rory's tremors are not the dangerous epileptic variety. They will make a follow-up appointment with that specialty team a couple of days from now, and he recommended she meet with her psychologist as well. Between all the specialists we'll get a good plan in place.
I haven't seen or noticed any more episodes all day today, which everyone is taking as a great sign. But, even if they do occur again, there is no danger or concern medically. At this point there must be something else triggering them, quite likely the shock her body has been going through with everything over the past few months. Since most of those stressors aren't going away any time soon, it won't be a surprise if the episodes return. But at least now we know not to be too concerned for her health or safety if that happens again.
Hoping for discharge to be processed shortly.
I haven't seen or noticed any more episodes all day today, which everyone is taking as a great sign. But, even if they do occur again, there is no danger or concern medically. At this point there must be something else triggering them, quite likely the shock her body has been going through with everything over the past few months. Since most of those stressors aren't going away any time soon, it won't be a surprise if the episodes return. But at least now we know not to be too concerned for her health or safety if that happens again.
Hoping for discharge to be processed shortly.
Tough Love
I mentioned the EEG team is removing the electrodes. One of the members is having a "tough love" discussion with her right now that is probably worth me writing down so she can remember it later.
Rory's reaction started towards the self blaming that she's been wasting everyone's time since they haven't been able to definitively figure out the cause. The tech got down "in her face" to try to turn around her approach. There was a lot of "Hey, there was no time wasted at all from you coming in here. Please don't cry, listen to me. I'm not even kidding here. There are so many reasons why your body is doing this. Just because it isn't coming from the brain just means there is one of a ton of other possible reasons. Obviously what you're experiencing is real, so don't be upset or cry that you think you're making things up or are wasting our time. NONE of our time has been wasted for you."
Yeah, he was pretty blunt and I hope it got through to her. I know that guilt comes quickly to her, and it's a natural reaction, but he was pretty in-her-face with his own reaction to her reaction. But in the end it was out of concern and support and I hope she remembers that part of it.
Rory's reaction started towards the self blaming that she's been wasting everyone's time since they haven't been able to definitively figure out the cause. The tech got down "in her face" to try to turn around her approach. There was a lot of "Hey, there was no time wasted at all from you coming in here. Please don't cry, listen to me. I'm not even kidding here. There are so many reasons why your body is doing this. Just because it isn't coming from the brain just means there is one of a ton of other possible reasons. Obviously what you're experiencing is real, so don't be upset or cry that you think you're making things up or are wasting our time. NONE of our time has been wasted for you."
Yeah, he was pretty blunt and I hope it got through to her. I know that guilt comes quickly to her, and it's a natural reaction, but he was pretty in-her-face with his own reaction to her reaction. But in the end it was out of concern and support and I hope she remembers that part of it.
Roller coaster
Rory took a selfie with her EEG hookups:
It was interesting to me that the whole EEG setup includes video monitoring:
She had several more "events" during the night, which was exactly what they were hoping for.
The doctor just came in to discuss things with us. He is waiting for a final report from the epilepsy specialist, but he said based on what he saw on the reports that he would be very surprised if they came back saying the shaking is due to epilepsy. No epilepsy = good. He also talked through her current medications that could be a slight contributor to muscle weakness or shaking, but again he didn't think those were very likely. Instead, he said it is quite normal for this sort of manifestation being caused by underlying stress, which she has certainly been under! They have enough data from the night to definitively say (pending epilepsy final report) that the shaking isn't medically harmful, and the most difficult thing will be for us as family to watch if they continue. But, unless something dramatically changes in the symptoms there will be nothing to worry about. Oh - he did say she won't be allowed to drive for 3 months following an event where she loses consciousness, but she hasn't been driving anyway.
So the EEG team is working to remove all the electrodes, and at the same time EKG is running another heart scan just to make sure everything still looks good. Their hope is that we'll be going home sometime today. Rory is understandably a bit disappointed that they haven't been able to definitively say "this is what's causing the shaking" but at least they have ruled out some of the more ominous potential causes. Still, it's frustrating for her to not have a clear answer.
We'll have an appointment with the team's epilepsy specialists to discuss things to watch for going forward. Also, she's supposed to see her mental health provider within the next week so we'll try to get that set up soon.
It was interesting to me that the whole EEG setup includes video monitoring:
She had several more "events" during the night, which was exactly what they were hoping for.
The doctor just came in to discuss things with us. He is waiting for a final report from the epilepsy specialist, but he said based on what he saw on the reports that he would be very surprised if they came back saying the shaking is due to epilepsy. No epilepsy = good. He also talked through her current medications that could be a slight contributor to muscle weakness or shaking, but again he didn't think those were very likely. Instead, he said it is quite normal for this sort of manifestation being caused by underlying stress, which she has certainly been under! They have enough data from the night to definitively say (pending epilepsy final report) that the shaking isn't medically harmful, and the most difficult thing will be for us as family to watch if they continue. But, unless something dramatically changes in the symptoms there will be nothing to worry about. Oh - he did say she won't be allowed to drive for 3 months following an event where she loses consciousness, but she hasn't been driving anyway.
So the EEG team is working to remove all the electrodes, and at the same time EKG is running another heart scan just to make sure everything still looks good. Their hope is that we'll be going home sometime today. Rory is understandably a bit disappointed that they haven't been able to definitively say "this is what's causing the shaking" but at least they have ruled out some of the more ominous potential causes. Still, it's frustrating for her to not have a clear answer.
We'll have an appointment with the team's epilepsy specialists to discuss things to watch for going forward. Also, she's supposed to see her mental health provider within the next week so we'll try to get that set up soon.
Monday, October 7, 2019
Here we go again
After arriving at drill tonight Rory called to say she was heading to the ER. Much of the afternoon she had been experiencing tremors, more than usual, and at times she couldn’t get her computer mouse to do what she wanted. Her hand would periodically spasm, and she was having some difficulty speaking. After talking to a nurse over the phone they decided that going to the ER was warranted. Maybe it was a reaction to some of the new medication? Or maybe something else? After living with cancer for the past 8 years, a little trip to the ER wasn’t all that worrisome. Maybe we are just de-sensitized. Kaeli planned to take Rory to the hospital and I planned to stay at drill.
It was only a few minutes later that I got a frantic call from Kaeli saying, “You need to be here NOW.” I drove across the valley to find a party going on in room 9. The story eventually came out. After walking into the ER on her own, apparently Rory had some difficulty during checkin. The doctors described trembling as “partial seizures” because she had responsive eyes and was able to speak again almost immediately after the tremor stopped. Also before I arrived they did a brain CT.
They had several staff come in and check whether they could start an IV, but eventually decided to call in the specialist with the ultrasound machine. The parade continued with doctors coming in to tell us that they had consulted with the on call oncologist who didn’t think the medications were causing the tremors, so they thought it must be a neurological issue. THAT meant she would be transported to and admitted at the big hospital in Murray where the IMC neurological specialists are located. While all this was going on the IV nurse was prepping, until a much more seizure happened. This time the doctors came in to observe, and they agreed that one was a “real seizure.”
Eventually they got all the fluids they wanted to start some testing, and the transport ambulance arrived to take her away. I went back home to change clothes, gather some items that Rory wanted (especially her pillow), and talk to the kids about what was going on. Then it was off to the hospital.
We are on the 14th floor and it looks like we will have a great view in the morning. I talked to the doctor for just a minute to describe the episodes at Alta View, and she told me that the initial CT looked really good. As I am writing this there are a couple of techs gluing electrodes to Rory’s head which will monitor brain waves (EEG) for at least the next 24 hours. Odd to think that we hope she has another seizure so they can record it. The techs have really got Rory talking about the kids, we are sharing photos of the grand babies, talking school and music, and more. All while they are using some VERY nasty-smelling glue to affix the EEG equipment.
Might have another update shortly, but I want to pause here to email the blog link out to everyone with at least this much info.
It was only a few minutes later that I got a frantic call from Kaeli saying, “You need to be here NOW.” I drove across the valley to find a party going on in room 9. The story eventually came out. After walking into the ER on her own, apparently Rory had some difficulty during checkin. The doctors described trembling as “partial seizures” because she had responsive eyes and was able to speak again almost immediately after the tremor stopped. Also before I arrived they did a brain CT.
They had several staff come in and check whether they could start an IV, but eventually decided to call in the specialist with the ultrasound machine. The parade continued with doctors coming in to tell us that they had consulted with the on call oncologist who didn’t think the medications were causing the tremors, so they thought it must be a neurological issue. THAT meant she would be transported to and admitted at the big hospital in Murray where the IMC neurological specialists are located. While all this was going on the IV nurse was prepping, until a much more seizure happened. This time the doctors came in to observe, and they agreed that one was a “real seizure.”
Eventually they got all the fluids they wanted to start some testing, and the transport ambulance arrived to take her away. I went back home to change clothes, gather some items that Rory wanted (especially her pillow), and talk to the kids about what was going on. Then it was off to the hospital.
We are on the 14th floor and it looks like we will have a great view in the morning. I talked to the doctor for just a minute to describe the episodes at Alta View, and she told me that the initial CT looked really good. As I am writing this there are a couple of techs gluing electrodes to Rory’s head which will monitor brain waves (EEG) for at least the next 24 hours. Odd to think that we hope she has another seizure so they can record it. The techs have really got Rory talking about the kids, we are sharing photos of the grand babies, talking school and music, and more. All while they are using some VERY nasty-smelling glue to affix the EEG equipment.
Might have another update shortly, but I want to pause here to email the blog link out to everyone with at least this much info.
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