Alisa has had 2 doses of chemotherapy and should get 3 more over the next 3 days. Joan is really happy about how things are going. Alisa is not retaining nearly as much fluid as last time. Joan decided to give her less IV fluids and give Alisa most of her fluids through the feeding tube. This seems to have helped a lot. After 2 doses she has only gained like 3 pounds (I think she was up 15 at this point last time).
She still gets fevers occasionally, and sometimes she just feels sick. Her pain has been pretty much under control, she is only pushing her pain button a couple of times each day.
In our optimism, Joan and I discussed going home Friday night if everything continues to go smoothly. Lets hope.
- Josh
Wednesday, February 11, 2015
Monday, February 9, 2015
BioChemo Cycle #2
So we made it to the hospital this morning and everything checked out ok for Alisa to start another cycle of BioChemo. We will be here through Friday (at least).
Alisa doesn't remember much of the last time we were here. In fact, she doesn't remember much of January.
The inflammation in her lung was some random virus (or something) that Dr. Grossman didn't think was very serious, but needs to be treated with some very specific antibiotics, which she started today.
Dr. Grossman basically started today by telling us that there are some risks with this round of chemo. Starting chemotherapy with an infection, not recommended. Starting chemo while not in the best of health, not ideal. But he also said, the bigger risk is the tumor, and we need to attack it with everything we have. So here we go.
- Josh
Alisa doesn't remember much of the last time we were here. In fact, she doesn't remember much of January.
The inflammation in her lung was some random virus (or something) that Dr. Grossman didn't think was very serious, but needs to be treated with some very specific antibiotics, which she started today.
Dr. Grossman basically started today by telling us that there are some risks with this round of chemo. Starting chemotherapy with an infection, not recommended. Starting chemo while not in the best of health, not ideal. But he also said, the bigger risk is the tumor, and we need to attack it with everything we have. So here we go.
- Josh
Friday, February 6, 2015
Home Sweet Home
We came home last night.
I know I should have updated everyone since my last post. Sorry.
They did the bronchoscopy yesterday but won't have results until Monday.
We will start chemotherapy again Monday, depending on the results of the bronchoscopy. I think if there is an infection, they will need to treat it and get it under control before they start chemo.
Alisa had a better night last night than she has in a couple weeks. She is still in pain, and gets tired very quickly. She did have enough energy this morning to get up and make the kids breakfast and see them off to school. It was nice to have a glimpse of our old normal life.
I am sure she will try and post something this weekend.
- Josh
ps - thought I had published this already this morning.
I know I should have updated everyone since my last post. Sorry.
They did the bronchoscopy yesterday but won't have results until Monday.
We will start chemotherapy again Monday, depending on the results of the bronchoscopy. I think if there is an infection, they will need to treat it and get it under control before they start chemo.
Alisa had a better night last night than she has in a couple weeks. She is still in pain, and gets tired very quickly. She did have enough energy this morning to get up and make the kids breakfast and see them off to school. It was nice to have a glimpse of our old normal life.
I am sure she will try and post something this weekend.
- Josh
ps - thought I had published this already this morning.
Wednesday, February 4, 2015
Home - Almost
We were packed up and ready to go at 6:30. The PA that has been helping us came in at 4:30 and told us we should be able to go at 6:30 when Alisa's blood transfusion was finished.
At 6:25 he showed up, obviously distressed. He had been on the phone for 2 hours talking to the pulmonary doctors and the radiologists trying to determine how concerned they are about what they found on the chest CT scan.
They found a little bit of inflammation in her upper right lobe. They don't know why after 5 days of strong antibiotics she would still have an infection. It possibly explains why she is still having fevers. They are going to keep her here overnight and possibly do a bronchoscopy in the morning to see what is going on.
Maybe tomorrow.
- Josh
At 6:25 he showed up, obviously distressed. He had been on the phone for 2 hours talking to the pulmonary doctors and the radiologists trying to determine how concerned they are about what they found on the chest CT scan.
They found a little bit of inflammation in her upper right lobe. They don't know why after 5 days of strong antibiotics she would still have an infection. It possibly explains why she is still having fevers. They are going to keep her here overnight and possibly do a bronchoscopy in the morning to see what is going on.
Maybe tomorrow.
- Josh
Tuesday, February 3, 2015
3 February 2015- 11:38 PM
We learned today that the reason they have not put the drain in is because they want Alisa to have 24 hours without a fever. She has had one every night.
They decided to do another CT scan to see if they could identify a reason for the fevers. The blood cultures have come back negative for the last 3 days (meaning there is no bacteria in the blood causing the fevers) and no outward sign of an infection. They think the fevers might be related to the tumor, which would allow them to put in the drain.
We thought maybe they would do it tomorrow.
I left the hospital around 4:00 to go down for Sam and Luke's parent teacher conferences. I made it about 5 minutes when I got a call from Alisa saying they were in her room ready to take her to get the drain placed. I turned around and came back.
I waited in the room for about 30 minutes when the nurse came in and said to go downstairs. They want to show me how the drain works. To my surprise they hadn't even started. They walked me into the room and asked me to sit down, just in case I fainted. Then they started the procedure. The doctor, the nurse just called him Chak (sounded like chalk, but he was from India, or that part of the world, so I picked my own spelling) started sticking needles and drains in her back, and they let me watch. It was fascinating. He talked about how he does training for other doctors on how to do this procedure, because he does it with just local anesthesia while most other doctors do it under general anesthesia. I can see why they get nervous, he kind of manhandled Alisa's back, but she seemed to do just fine (she is exceptionally tough). I didn't pass out.
We drained 1 liter of fluid, and he told us to drain 1 liter every day until we don't get 1 liter, then every other day.
It hasn't really reduced Alisa's pain, but she is breathing better.
I blame it on my optimism, but I think we might go home tomorrow. We will see.
- Josh
They decided to do another CT scan to see if they could identify a reason for the fevers. The blood cultures have come back negative for the last 3 days (meaning there is no bacteria in the blood causing the fevers) and no outward sign of an infection. They think the fevers might be related to the tumor, which would allow them to put in the drain.
We thought maybe they would do it tomorrow.
I left the hospital around 4:00 to go down for Sam and Luke's parent teacher conferences. I made it about 5 minutes when I got a call from Alisa saying they were in her room ready to take her to get the drain placed. I turned around and came back.
I waited in the room for about 30 minutes when the nurse came in and said to go downstairs. They want to show me how the drain works. To my surprise they hadn't even started. They walked me into the room and asked me to sit down, just in case I fainted. Then they started the procedure. The doctor, the nurse just called him Chak (sounded like chalk, but he was from India, or that part of the world, so I picked my own spelling) started sticking needles and drains in her back, and they let me watch. It was fascinating. He talked about how he does training for other doctors on how to do this procedure, because he does it with just local anesthesia while most other doctors do it under general anesthesia. I can see why they get nervous, he kind of manhandled Alisa's back, but she seemed to do just fine (she is exceptionally tough). I didn't pass out.
We drained 1 liter of fluid, and he told us to drain 1 liter every day until we don't get 1 liter, then every other day.
It hasn't really reduced Alisa's pain, but she is breathing better.
I blame it on my optimism, but I think we might go home tomorrow. We will see.
- Josh
Monday, February 2, 2015
2 February 2015 - 7:37 PM
It looks like tomorrow they will place the drain.
Alisa continues to have escalating pain.
Her doctor said he is worried. He is worried we haven't been able to stop the fevers, and that the pain getting worse is the tumor getting bigger.
We still have a couple of tricks to try, but today was a discouraging day.
We will try and let you know when things come up. It is really hard for Alisa to respond to all the emails and texts, she falls asleep easily during any of these tasks...
We do believe there will be brighter days. We are looking forward to them.
- Josh
Alisa continues to have escalating pain.
Her doctor said he is worried. He is worried we haven't been able to stop the fevers, and that the pain getting worse is the tumor getting bigger.
We still have a couple of tricks to try, but today was a discouraging day.
We will try and let you know when things come up. It is really hard for Alisa to respond to all the emails and texts, she falls asleep easily during any of these tasks...
We do believe there will be brighter days. We are looking forward to them.
- Josh
Sunday, February 1, 2015
Super Bowl Sunday
Alisa slept well last night. I think I was hoping for a relatively easy day.
Not so., at least not since the afternoon started.
Some good news.
After re-running the blood work they found her INR to be normal and after some additional tests they decided they could also rule out DIC. They decided they would go through with the thoracentesis after all and that the Doctor would stop by and discuss. Turns out there is more than one option when you have fluid all over your lungs.
They talked about putting a semi-permanent (it can be removed at a later date if no longer needed) catheter in so that we can drain the fluid that accumulates near her lung from home. They think this is the best option because the fluid came back so quickly. The doctor that performs this procedure is not in till tomorrow. They decided to take a sample out to make sure there is no infection (might be causing the fever) in the fluid around the lungs, because if the fluid is infected the semi-permanent drain may not be an option. They took out 500ml of fluid and "left plenty for the procedure tomorrow, it is much easier to place the catheter if there is more fluid. They thought this might relieve some of her pain a little, but it didn't.
She has been in as much pain this afternoon since we came to the hospital...can't recall the date..mid January? She has her pain pump, oxycodone and dilaudid and still only finds relief when she is sleeping.
She still has a fever.
Pretty exciting end to the Super Bowl though. I thought the commercials were a bit disappointing.
Not so., at least not since the afternoon started.
Some good news.
After re-running the blood work they found her INR to be normal and after some additional tests they decided they could also rule out DIC. They decided they would go through with the thoracentesis after all and that the Doctor would stop by and discuss. Turns out there is more than one option when you have fluid all over your lungs.
They talked about putting a semi-permanent (it can be removed at a later date if no longer needed) catheter in so that we can drain the fluid that accumulates near her lung from home. They think this is the best option because the fluid came back so quickly. The doctor that performs this procedure is not in till tomorrow. They decided to take a sample out to make sure there is no infection (might be causing the fever) in the fluid around the lungs, because if the fluid is infected the semi-permanent drain may not be an option. They took out 500ml of fluid and "left plenty for the procedure tomorrow, it is much easier to place the catheter if there is more fluid. They thought this might relieve some of her pain a little, but it didn't.
She has been in as much pain this afternoon since we came to the hospital...can't recall the date..mid January? She has her pain pump, oxycodone and dilaudid and still only finds relief when she is sleeping.
She still has a fever.
Pretty exciting end to the Super Bowl though. I thought the commercials were a bit disappointing.
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