We will not be going home today.
They have been trying to balance Alisa's fluids all week. They don't want to give her too much (she is retaining all of it) but they have to give her enough to keep her kidney's functioning properly.
Her blood work came back this morning showing her kidney function was down a bit, so they are giving her fluids today and don't feel good sending her home yet.
She sleeps a lot. Sorry for the short/lame update.
Friday, January 23, 2015
Wednesday, January 21, 2015
21 January 2015 - 10:07 PM
They took a 2.1 liters of fluid out of Alisa's abdomen today. We hoped it would provide more pain relief. It has seemed to help with the pressure around her middle, but she still has pain, especially in her back.
We will investigate tomorrow the cause of the pain. We think the soonest we could leave would be the weekend.
Alisa really wishes she could write. She is pretty groggy from her medications.
She wishes she felt good enough to blog.
-Josh (although Alisa basically told me everything to say, she tried dictating a good blog after reading my previous posts, but she keeps dozing off, so this is what we came up with)
21 January 2015 - 10:33 AM
here is what happened in the last 24 hours.
- They moved us from the 5th (ICU) floor to the 4th (not ICU??) floor. She does not have to be monitored constantly since stopping the IL2 portion of BioChemotherapy
- Downgrade - the room is a bit of a downgrade.
- It is smaller (less room for my mess).
- the view is not as pretty (lower floor), although not a bad view. kind of like the difference between the ocean view of a hotel in Cancun versus the garden view.
- Upgrade - you could also consider it an upgrade
- the room is private. there is a door and it is very quiet. The other room had big glass doors that they never shut so you could hear everyone's alarms going off.
- Because we are not in the ICU anymore the nurses only come every 4 hours to check vital signs. Alisa can get a little more rest at night.
- Alisa got a thoracentesis to remove some fluid from her lungs. I think around her lungs, not necessarily in her lungs.
- She was transported to the U of U hospital for the procedure. I only mention this because I learned there are underground tunnels connecting the two hospitals, and on her return trip back she had some fun with her "rookie" transporter who kept taking wrong turns and getting stuck in the elevator. We probably should give him a little bit of a break, he has to move a huge hospital bed plus Alisa's tree of fluids, drugs, etc.
- They removed 1 liter of fluid from just one spot near her lungs. Seems like a lot. They will do a...similar treatment on her stomach today. (I should mention that by stomach I mean her belly area. She gives me a disappointed look when I say stomach because it isn't technically the stomach. I imagine the nurses reading this are rolling their eyes at my ignorance, go ahead, I am used to it. I am hoping the rest of you understand what I am trying to say)
We have had a couple visits from the nurse practitioner today, but I haven't had a chance to ask when we might go home. Not today.
Tuesday, January 20, 2015
20 January 2015 - 9:25 AM
I have a feeling Alisa will be "improving" some of my blog posts when she is feeling better.
Her pain has gotten a bit worse since Saturday. We can't tell if it is because of the tumor or because of the water retention. the treatment she is receiving makes her retain water. She is very uncomfortable. I will let her tell you how much weight she has gained...
They are going to try and drain some of the fluids today, hopefully this morning, to try and relieve some of the pressure.
Tonight she will receive her last dose of the chemotherapy. Tomorrow we will hopefully start preparing to go home. I think they will need to make sure we can control her pain without using IV medications. I am not sure we will be going home tomorrow, but we will be closer.
- Josh
Her pain has gotten a bit worse since Saturday. We can't tell if it is because of the tumor or because of the water retention. the treatment she is receiving makes her retain water. She is very uncomfortable. I will let her tell you how much weight she has gained...
They are going to try and drain some of the fluids today, hopefully this morning, to try and relieve some of the pressure.
Tonight she will receive her last dose of the chemotherapy. Tomorrow we will hopefully start preparing to go home. I think they will need to make sure we can control her pain without using IV medications. I am not sure we will be going home tomorrow, but we will be closer.
- Josh
Sunday, January 18, 2015
Birthday Girl
This is Sonja again. I don't know that I can do this story justice, but it is one that I really want those who love Alisa to know about, to share a bit of joy she had today on her birthday.
When Alisa's cancer was in her brain a few years ago, Alisa posed for a portrait for James Christensen, her favorite artist. He knew of her story through his daughter-in-law, Jennie, one of Alisa's dearest friends.
Since then, she has waited with anticipation to see the painting. Jennie had seen glimpses of the progress, but Alisa had no idea what it would look like.
This week, James finished the painting and Jennie was able to present it to her for her birthday. Jenny showed her the unglazed painting on Wednesday at the hospital, and then today, for her birthday, Alisa got the framed painting to keep.
She was completely overwhelmed by the gift. Since Wednesday, Jennie's visit with the painting is really the only event in the hospital she remembers consistently. When we come to visit, she asks if we have seen it. She just loves and it you can see why.
Today for her birthday, we broke the visiting rules and marched into the ICU with all 8 of her siblings , our parents, and Alisa's three boys. We had balloons, flowers, gifts, and her nurses had brought her a cake. We told her we were coming, but the big surprise was the painting. She was overcome with emotion, really. As Josh read the artist's description, we teared up.
"The square represents Earth, it is mortality with edges, it has boundaries. (A circle is eternity).
She is partially in the square an partially out. Her body inside the square represents mortality, outside the square represents eternity.
The jewels represent her boys birthstones."
I can't totally put myself in her place, but I know my sister well enough to understand just how much this means to her. First of all, that someone would spend the time to create such a beautiful thing for her is just incredible. And that the painting so beautifully portrays her, with her long hair and free from the lymphedema and scars of cancer. Also, the significance of the jewels representing her greatest treasure, her children. Alisa has an incredible eye for beauty and I think this painting has captured her beauty in a way that goes beyond just a physical likeness, there is something of her beautiful spirit as well.
So thank you, Mr. Christensen, for a making Alisa's day. This is a work of art that will be treasured by Alisa and all of us who love her.
-Sonja
When Alisa's cancer was in her brain a few years ago, Alisa posed for a portrait for James Christensen, her favorite artist. He knew of her story through his daughter-in-law, Jennie, one of Alisa's dearest friends.
Since then, she has waited with anticipation to see the painting. Jennie had seen glimpses of the progress, but Alisa had no idea what it would look like.
This week, James finished the painting and Jennie was able to present it to her for her birthday. Jenny showed her the unglazed painting on Wednesday at the hospital, and then today, for her birthday, Alisa got the framed painting to keep.
She was completely overwhelmed by the gift. Since Wednesday, Jennie's visit with the painting is really the only event in the hospital she remembers consistently. When we come to visit, she asks if we have seen it. She just loves and it you can see why.
Today for her birthday, we broke the visiting rules and marched into the ICU with all 8 of her siblings , our parents, and Alisa's three boys. We had balloons, flowers, gifts, and her nurses had brought her a cake. We told her we were coming, but the big surprise was the painting. She was overcome with emotion, really. As Josh read the artist's description, we teared up.
"The square represents Earth, it is mortality with edges, it has boundaries. (A circle is eternity).
She is partially in the square an partially out. Her body inside the square represents mortality, outside the square represents eternity.
The jewels represent her boys birthstones."
I can't totally put myself in her place, but I know my sister well enough to understand just how much this means to her. First of all, that someone would spend the time to create such a beautiful thing for her is just incredible. And that the painting so beautifully portrays her, with her long hair and free from the lymphedema and scars of cancer. Also, the significance of the jewels representing her greatest treasure, her children. Alisa has an incredible eye for beauty and I think this painting has captured her beauty in a way that goes beyond just a physical likeness, there is something of her beautiful spirit as well.
So thank you, Mr. Christensen, for a making Alisa's day. This is a work of art that will be treasured by Alisa and all of us who love her.
-Sonja
The big reveal. My hands! My youth! My hair! Painted by a maser. I'll have to write more of what this means to me, but check out some of his work here
18 January 2015 - 9:30 AM
Sorry we haven't updated you for a while. Alisa was actually feeling up to posting herself last night and then fell asleep before she had a chance to start.
She has been feeling much better. We think it is because of the nerve blocks they gave her, but we are thankful they do work.
She goes in and out of awareness throughout the day. It is not as bad as when she was on the ketamine, but she still has a hard time remembering dates, and some other things. It is most likely just because of all the medications she is taking.
There is not much more to report. Assuming they can keep her comfortable (out of pain) each of the next 3-4 days should be pretty similar. Sleeping on and off during the day, chemo at night.
I will keep you updated on her progress. Thanks for all your concern.
PS - Happy Birthday Alisa!!!
-Josh
Friday, January 16, 2015
16 January 2015 - 10:10 PM
Alisa just started bio-chemotherapy. She will receive her last dose Tuesday night.
They took her off the Ketamine and gave her a Fentanyl patch that is slow acting pain relief. It seems to be working better than the Ketamine. She doesn't use her PCA as often and she is less crazy (still a little crazy, something about the girl behind me taking down all the BYU decorations came up a couple of times)
Really happy her pain is controlled better, happy her treatment is started.
Thanks for all the kinds words, thoughts, and prayers.
They took her off the Ketamine and gave her a Fentanyl patch that is slow acting pain relief. It seems to be working better than the Ketamine. She doesn't use her PCA as often and she is less crazy (still a little crazy, something about the girl behind me taking down all the BYU decorations came up a couple of times)
Really happy her pain is controlled better, happy her treatment is started.
Thanks for all the kinds words, thoughts, and prayers.
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