Well I don't know where to start because it has been such a great day. I guess I will start with how she slept. She slept from 11:30-6:00 and she was finally comfortable and she slept very soundly. She slept with the pressurized mask. She asked around 6:00 if she could have a break from it. We put on the other and she fell asleep off and on.
When she got up we were asking her questions and she was alot more coherent. She could move her fingers they kept asking if she could touch her thumb to all of her fingers. Yesterday she couldn't do that but today she did it with both hands. Me and the nurse were thrilled. She could not understand why we were so excited. We told her that she couldn't do that yesterday. She said that she could remember that. I am so grateful that she doesn't remember what has happened the last couple of days.
After the little hand exercise we asked her where she was and how long she has been there. She told us that she was in the hospital and she had been here for a week. Yesterday she knew she was in the hospital but she didn't know how long she had been there. She also thought it was January 23, 2007. Today she still thought it was January and then she said I think that is wrong.
After all that she said that she wanted food. The nurse went and found out if she could eat. She came back with a menu. Alyssa asked why she needed the feeding tube if she could eat through mouth. We told her that they put that in last night so she could take medicine that she couldn't swallow. She ordered mandarin oranges, applesauce , blueberry muffin, chocolate milk. There was only a apple muffin on the menu and she wanted a blueberry muffin. The nurse asked if there was a blueberry muffin. They did so we waited for her breakfast. Her breakfast came and she was thrilled to eat. Her arms still don't work quite right so I had to feed her. She said that it probably felt weird to feed her. I told it was better than when you were little because you can tell me what you wanted and you didn't spit it out at me. She took 2 bites of the muffin and she said it was awful. The oranges is what she liked best.
After breakfast she wanted to walk so we went and walked. After her walk her nurse asked her to make 3 goals for the day. Her goals were to reduce her oxygen needs, take out the catheter and get the feeding tube out. She said that she wanted to get a shower so we were preparing to get her ready to shower.
In the middle of it the nurse had to go to rounds and she asked me to go with her. Rounds are when all the doctors and nurses helping her come and talk about what kind of things they are doing for her. They have determined that all of the blasts or leukemia cells are out of her body. So the chemo is doing their job. Most of the tests from the spinal tap are coming in negative. They have determined that she DOESN'T have Leukemia IN THE BRAIN. It is due to a drug reaction. They have determined that the ATRA is the cause so they have stopped that. The doctor said that there are different options and they are going to do that and we have plenty of time to start that. They are almost certain that she can get back to normal.
They have been giving her medicine to make it so she wont have seizures. She is done with her first round of chemo. She is only down to iv's when she has to have her antibodies. Her IV pole's name is Frank.
So after rounds the nurse went and found out if she could have the catheter out. She came and took it out and she was thrilled. We were getting ready to go to the shower when the eeg lady called and asked if they could come and do another eeg. We decided to shower after that because they have to put goop in her hair. Yesterday when she had the eeg she was very agitated, today she fell asleep after her friend Riley left.
While she was having her eeg I left with my dad to do a errand and go back to their hotel to have a nap and shower. While I was gone my mom said that she had a shower and the nurses french braided her hair. Put pajama bottoms on and ordered some more food. Mashed potatoes, jello and strawberry shake. She ate them all gone. She also got her feeding tube out and her oxygen was down to 40% and she was keeping her level up above 90. 90 is where they want her to be without having to have oxygen. She met all of her goals. We told her she needed to make some more goals and she said right off the bat I want to go upstairs to her other room.
When I came back she was happy and talkative. She took another walk. I hung up a stocking on the wall and a advent quilt that I had made her a couple of years ago. I asked Kirk to bring it when he was cleaning out her apartment. She was so excited to see it.
We got her to bed and she was not comfortable. They came in and gave her a breathing treatment and put the cpac mask back on (pressurized mask). They told her that this helps her when she sleeps so she can decrease her oxygen during the day. She thought that was a good alternative. She is now sleeping peacefully.
I took some pictures of her and her favorite nurses. When I figure out how to get them on here I will post them. Maybe when someone comes to visit they can help me out. My helper husband has gone home and he is safe and sound.
I am so grateful for my parents and how much of a help they are to me and Alyssa. Also for all of the priesthood blessings that have been given to her. I know that the Lord has his hand in all of this. The power of the priesthood is an amazing thing. I am so grateful that I have it in my life. Thanks again for everything everyone is doing for me and my family. Well that is the nightly report, here's to having a good night and even a better day tomorrow.
Tuesday, November 30, 2010
Monday, November 29, 2010
Another day
I stayed a hotel last night with my parents. They had this planned for sometime before this ever happened. They are going to be their all week long and it is right by the conference center, so it is right down the street from the hospital.
Kirk said she had another rough night. She was very anxious and she wanted water all night long. When I arrived she was sitting up in the chair. She was talking and wanting her speech evaluation. When the speech therapist comes in they have to make sure that they can swallow before they clear them to eat.
Kirk said that they did a echo to see if she had a hole in heart. I guess if she had a hole in the heart that would be a reason that she would have the bright spots in her mri. That came back negative. She was very anxious to get the speech evaluation done.
The speech therapist came and gave her two bites of jello, two bites of graham cracker and some water. She then evaluated her. When they evaluate they ask a bunch of questions. One of the questions was telling her 5 words and she had to repeat them back to her. She repeated them back to her perfectly. She told her to remember those words and she would ask her to give them back to her later. She then finished the other questions. She then asked her to repeat the words. I could not remember them. She then said do you want a hint. Alyssa said yes. When she gave her hints she got the words right. She was cleared her to eat.
She wanted to eat but the nurse said that we had to do one more test. She had to swallow her pills. The nurse came in and gave her a pill. She took the pill and drank one glass of water with it, they gave her another pill and she drank another glass of water. The nurse asked her if she was having a hard time swallowing and she look him in the eye and said no I am just thirsty. When he came with the 3rd pill her eyes got really big and said I get to have another pill and he said you get 2 more. She said cook I get to have one water.
She was clear to eat so we got want she wanted from the menu. I called down and the cafeteria said that the nurse need to call down to say what kind of diet she was on. I asked the nurse about it and she said that she needed to wait until she got her spinal tap done. She was very anxious about eating all day. I felt so bad for her.
She had a busy day talking to all sort of doctors trying figure out what is going on with her brain. She talked to speech therapy, infectious disease, neurologist, leukemia, lung specialist. She has hot spots on her brain and they are trying to figure it out. They did a echo on her heart and that was negative. They did a eeg or ekg and it is showing there is still small brain seizures going on.
She was still very anxious about food. We finally went down to have the spinal tap. Her breathing was kind of sketchy. She did fine for the spinal tap but when they put her back on her bed she coughed up blood. We ran back to the room to get her back on the pressurized mask. It was pretty scary for awhile. She was finally resting comfortably for a couple of hours. I went to dinner with my mom and my dad watched her. When we came back she had spit up blood again. They had to put the feeding tube back in. The nurse and I finally got her comfortable after about 3 hours. She has her meds in her right now. Cross your fingers that she can stay comfortable and she can get a good night's rest.
PS Thanks Brenda for coming up and letting me go to lunch. It was very nice to leave for a minute or two. Thanks again for everything that is being done in Alyssa's half. Kirk & Kelsey are leaving for Omaha tomorrow morning. She loves to hear the comments. I read them to her when she is feeling good it brightens her day.
Kirk said she had another rough night. She was very anxious and she wanted water all night long. When I arrived she was sitting up in the chair. She was talking and wanting her speech evaluation. When the speech therapist comes in they have to make sure that they can swallow before they clear them to eat.
Kirk said that they did a echo to see if she had a hole in heart. I guess if she had a hole in the heart that would be a reason that she would have the bright spots in her mri. That came back negative. She was very anxious to get the speech evaluation done.
The speech therapist came and gave her two bites of jello, two bites of graham cracker and some water. She then evaluated her. When they evaluate they ask a bunch of questions. One of the questions was telling her 5 words and she had to repeat them back to her. She repeated them back to her perfectly. She told her to remember those words and she would ask her to give them back to her later. She then finished the other questions. She then asked her to repeat the words. I could not remember them. She then said do you want a hint. Alyssa said yes. When she gave her hints she got the words right. She was cleared her to eat.
She wanted to eat but the nurse said that we had to do one more test. She had to swallow her pills. The nurse came in and gave her a pill. She took the pill and drank one glass of water with it, they gave her another pill and she drank another glass of water. The nurse asked her if she was having a hard time swallowing and she look him in the eye and said no I am just thirsty. When he came with the 3rd pill her eyes got really big and said I get to have another pill and he said you get 2 more. She said cook I get to have one water.
She was clear to eat so we got want she wanted from the menu. I called down and the cafeteria said that the nurse need to call down to say what kind of diet she was on. I asked the nurse about it and she said that she needed to wait until she got her spinal tap done. She was very anxious about eating all day. I felt so bad for her.
She had a busy day talking to all sort of doctors trying figure out what is going on with her brain. She talked to speech therapy, infectious disease, neurologist, leukemia, lung specialist. She has hot spots on her brain and they are trying to figure it out. They did a echo on her heart and that was negative. They did a eeg or ekg and it is showing there is still small brain seizures going on.
She was still very anxious about food. We finally went down to have the spinal tap. Her breathing was kind of sketchy. She did fine for the spinal tap but when they put her back on her bed she coughed up blood. We ran back to the room to get her back on the pressurized mask. It was pretty scary for awhile. She was finally resting comfortably for a couple of hours. I went to dinner with my mom and my dad watched her. When we came back she had spit up blood again. They had to put the feeding tube back in. The nurse and I finally got her comfortable after about 3 hours. She has her meds in her right now. Cross your fingers that she can stay comfortable and she can get a good night's rest.
PS Thanks Brenda for coming up and letting me go to lunch. It was very nice to leave for a minute or two. Thanks again for everything that is being done in Alyssa's half. Kirk & Kelsey are leaving for Omaha tomorrow morning. She loves to hear the comments. I read them to her when she is feeling good it brightens her day.
Sunday, November 28, 2010
Bad news
She just got back from her MRI. Things are not looking good. They found spots of leukemia in her brain. This is the reason that she can't move her left arm and is kind of touchy moving her right arm and legs.
They are going to treat it the same way as the other leukemia. They have put a feeding tube in and if they need to put a tube down her throat to help her breath they will. They have started up the ATRA again through her feeding tube.
My heart is broken right now. I am so scared! I am she is more scared than we all are. Kirk has felt all along that she would recover from this. He as assured me that he gets that feeling strongly every time he blesses her. I don't know if I have that much faith. I am going to need to pull up my boot strings and find that faith.
She still has her cute sense of humor. The PA asked if she could move her arms and she said yes. After she didn't move her left arm the the PA asked about that and she said, oh yea I can move everything but that one.
Her favorite nurse Amber came in here to talk to her and she got a huge smile on her face. She asked her how she was doing. Alyssa thought for a minute and said I am just thankful. I asked her what she was thankful for and she said for such good nurses. We all need to take that attitude about our lives.
We asked her this morning if she wanted Dad to read scriptures with her. I needed to go get some breakfast before he left. She said that she would like him to read to her but not so long this time. Kirk told her it was okay to fall asleep while he was reading and she said that she fills bad when he is reading to fall asleep. We assured her that it was okay to fall asleep.
I don't think that Kirk and Kelsey are going to Nebraska tomorrow. It has been snowing all day and the roads are not good.
Thanks again for all of the love and support.
They are going to treat it the same way as the other leukemia. They have put a feeding tube in and if they need to put a tube down her throat to help her breath they will. They have started up the ATRA again through her feeding tube.
My heart is broken right now. I am so scared! I am she is more scared than we all are. Kirk has felt all along that she would recover from this. He as assured me that he gets that feeling strongly every time he blesses her. I don't know if I have that much faith. I am going to need to pull up my boot strings and find that faith.
She still has her cute sense of humor. The PA asked if she could move her arms and she said yes. After she didn't move her left arm the the PA asked about that and she said, oh yea I can move everything but that one.
Her favorite nurse Amber came in here to talk to her and she got a huge smile on her face. She asked her how she was doing. Alyssa thought for a minute and said I am just thankful. I asked her what she was thankful for and she said for such good nurses. We all need to take that attitude about our lives.
We asked her this morning if she wanted Dad to read scriptures with her. I needed to go get some breakfast before he left. She said that she would like him to read to her but not so long this time. Kirk told her it was okay to fall asleep while he was reading and she said that she fills bad when he is reading to fall asleep. We assured her that it was okay to fall asleep.
I don't think that Kirk and Kelsey are going to Nebraska tomorrow. It has been snowing all day and the roads are not good.
Thanks again for all of the love and support.
Rough Night
Well she had a very rough night. They gave her some medicine for the pain and she fought her demons all night. She was very delirious and her heart rate was all over the place. Around 5:00 this morning she finally went to sleep but then around 6:00 she had another small seizure. She knew she was having it and right after it got done she said that her muscles hurt and she doesn't want anymore of these. Her heart rate didn't race as much and her blood oxygen didn't drop like the other times.
She is very lethargic. When they have come in and done the neurological tests she can't make her arms and legs do what they want her to do. She is very frustrated. They have ordered a MRI to see what is going on in her brain.
She told Kirk and I that she is afraid to go to sleep because every time she goes to sleep something happens to her. She is terrified to have another seizure. The doctors are telling us that it usually takes around 24 hours to get the medicine out of her system that caused the seizure.
I feel so bad for her. She has been through so much. She is such a sweet girl. She reads the blog when she can and loves to read the comments. Thank you all for your love and concern. I really don't know how much more she can take. I am so grateful that she is in this hospital. It is so comforting that I can call the elders anytime and they will come and give her a blessing. Keep praying for her.
She is very lethargic. When they have come in and done the neurological tests she can't make her arms and legs do what they want her to do. She is very frustrated. They have ordered a MRI to see what is going on in her brain.
She told Kirk and I that she is afraid to go to sleep because every time she goes to sleep something happens to her. She is terrified to have another seizure. The doctors are telling us that it usually takes around 24 hours to get the medicine out of her system that caused the seizure.
I feel so bad for her. She has been through so much. She is such a sweet girl. She reads the blog when she can and loves to read the comments. Thank you all for your love and concern. I really don't know how much more she can take. I am so grateful that she is in this hospital. It is so comforting that I can call the elders anytime and they will come and give her a blessing. Keep praying for her.
Saturday, November 27, 2010
Just when we thought we were out of the woods
She was doing great. Ate some lunch had a good walk, 2 laps around ICU. Played two games of uno with me and then everything went downhill.
She said that she was feeling kind of nauseated. The nurse gave her some medicine and she said that she wanted to lay down. We got her situated and then she kept pulling at her arms saying that she couldn't get comfortable. Her heart rate was racing and so was mine. The nurse and I finally got her calmed down and she went to sleep. I ran downstairs to get something to eat and came back and the nurse said she woke up and wanted to move. The nurse moved her to her side and I came back.
I sat down and then her arm went stiff and I called the nurse and she started having a seizure. Everyone one from the floor came running. I just kept talking to her and then she finally calmed down. They told me it was about 15 seconds, it felt like hours. Kirk was on his way from cleaning out her apartment. I texted him and asked him how far away he was. I asked him if he could drive a little faster because Alyssa needed a blessing.
When she was trying to talk to me all she could get out was blessing and hot. I told her, Dad was on the way. Kirk, Patrick & Christopher, (Kirk's brothers) came rushing in. They were about ready to give her a blessing and she had another seizure. They got her calmed down enough for them to give her a blessing. In the blessing Kirk told her that she was going to be fine and that Heavenly Father loves her and her time on the earth is not finished. After the blessing they did a chest ex ray and took her to have have a ct scan. This came back negative so she doesn't have any bleeding. They think it is a reaction to that medicine. We will not be giving her that medicine again.
She was resting comfortably and then she was in pain again and they gave her some more medicine and she asked if it was going to give her seizures. The nurse assured her that it would not. I hope we have a better night.
She said that she was feeling kind of nauseated. The nurse gave her some medicine and she said that she wanted to lay down. We got her situated and then she kept pulling at her arms saying that she couldn't get comfortable. Her heart rate was racing and so was mine. The nurse and I finally got her calmed down and she went to sleep. I ran downstairs to get something to eat and came back and the nurse said she woke up and wanted to move. The nurse moved her to her side and I came back.
I sat down and then her arm went stiff and I called the nurse and she started having a seizure. Everyone one from the floor came running. I just kept talking to her and then she finally calmed down. They told me it was about 15 seconds, it felt like hours. Kirk was on his way from cleaning out her apartment. I texted him and asked him how far away he was. I asked him if he could drive a little faster because Alyssa needed a blessing.
When she was trying to talk to me all she could get out was blessing and hot. I told her, Dad was on the way. Kirk, Patrick & Christopher, (Kirk's brothers) came rushing in. They were about ready to give her a blessing and she had another seizure. They got her calmed down enough for them to give her a blessing. In the blessing Kirk told her that she was going to be fine and that Heavenly Father loves her and her time on the earth is not finished. After the blessing they did a chest ex ray and took her to have have a ct scan. This came back negative so she doesn't have any bleeding. They think it is a reaction to that medicine. We will not be giving her that medicine again.
She was resting comfortably and then she was in pain again and they gave her some more medicine and she asked if it was going to give her seizures. The nurse assured her that it would not. I hope we have a better night.
Her numbers are coming down
I just got back here after spending Thanksgiving with my family yesterday. What I heard from Kirk she had a pretty rough day.
When I got here Kirk said that she looks a lot better than this morning. When I came in the PA told me that her numbers are looking good. He said that the PA told him that her blasts are down to 2%. When she came in her numbers were around 60-90. They want them to be at zero. They told Kirk that she will be down to zero in the next couple of days.
She didn't have to use the pressurized mask last night. She has just been on the oxygen mask with humidity. I think she has turned the corner.
Kirk left and went to Provo to pack up her apartment. My parents are going to keep her stuff in a shed at their house. I will contact the apartment and BYU again tomorrow so we can get the school things done.
She is very anxious to get to her room upstairs. Kirk said that she ate a good breakfast and when I came in we ordered lunch and she ate it all gone. She has not thrown up since the first couple days. She complains about her back always hurting her. I think that she is just uncomfortable.
Kirk and Kelsey are leaving to go back to Omaha tomorrow if the weather holds. If it is stormy they will leave early Monday. I am sure that he will find all is well at home. I am sure going to miss that man and that girl! My dad took Bryan back to school today, I am going to miss him also.
I think that is all for now. Thanks again for everything everyone is doing for us. I am sure there are many people doing things that we are not even aware of. Thanks for your prayers.
When I got here Kirk said that she looks a lot better than this morning. When I came in the PA told me that her numbers are looking good. He said that the PA told him that her blasts are down to 2%. When she came in her numbers were around 60-90. They want them to be at zero. They told Kirk that she will be down to zero in the next couple of days.
She didn't have to use the pressurized mask last night. She has just been on the oxygen mask with humidity. I think she has turned the corner.
Kirk left and went to Provo to pack up her apartment. My parents are going to keep her stuff in a shed at their house. I will contact the apartment and BYU again tomorrow so we can get the school things done.
She is very anxious to get to her room upstairs. Kirk said that she ate a good breakfast and when I came in we ordered lunch and she ate it all gone. She has not thrown up since the first couple days. She complains about her back always hurting her. I think that she is just uncomfortable.
Kirk and Kelsey are leaving to go back to Omaha tomorrow if the weather holds. If it is stormy they will leave early Monday. I am sure that he will find all is well at home. I am sure going to miss that man and that girl! My dad took Bryan back to school today, I am going to miss him also.
I think that is all for now. Thanks again for everything everyone is doing for us. I am sure there are many people doing things that we are not even aware of. Thanks for your prayers.
Friday, November 26, 2010
Still in ICU
Alyssa is finally sleeping so I am going to take a minute and try to get an update posted. She has had a very hard day today. She can't get comfortable, her back hurts and her shoulders hurt. Overall she feels lousy and just wants to get rid of the oxygen masks.
As the chemo breaks down the leukemia cells, they get flushed out through the kidney's, so she is on a lot of fluids to aid that flushing process. Part of the side effects of all those fluids going through her system is the possibility of fluid building up in her lungs, which would cause the diminished breathing capacity. The doctors look for a certain level of urination to make sure the fluids are not building up. Alyssa's urination is way above the level they need. That plus the lack of blood and fluid when they did the scope, gives more precedence that there is not a fluid build up.
In an earlier post I mentioned that the breathing troubles could be because of a reaction to one of the medications. Based on the fluid levels as stated above, the doctors are now almost positive that a reacton is the cause and have stopped giving her ATRA. There have been several xrays since the scope and each time the xrays are either the same or worse. As a test they did an xray of her lungs this morning and gave her a does of ATRA, then xrayed her lungs again this afternoon. They had gotten worse, which tells them it was the ATRA causing the problem. They have stopped that for the time being, and will not start it up again until her lungs get better. I asked about this happening again once they start her on ATRA again and the doctor said that this is only an issue during the initial stages of chemo, by the time she is back on ATRA she will be far enough along in her chemo treatment that this won't be an issue. Their primary concern now is to get her lungs and her breathing capacity back to normal, at the expense of the benefits the ATRA is doing for her. As one of the nurses explained it to me, the ATRA helps the baby blood cells to know what they should do, whether the become white blood cells, red blood cells, clotting agents, etc. So although that is needed, it is not going to hurt to not have that for a short period of time. If her lungs don't clear up, then the next step is a ventilator and they don't want that unless it is absolutely necessary. Taking her off ATRA is a little bump in her progression, but the ventilator is a major step backwords.
Right now they are thinking she will stay in ICU through Saturday and possibly Sunday. They want to make sure that she is breathing well enough on her own before moving her. It's better to stay here for longer rather than making trips up and down between ICU and her leukemia room.
As the chemo breaks down the leukemia cells, they get flushed out through the kidney's, so she is on a lot of fluids to aid that flushing process. Part of the side effects of all those fluids going through her system is the possibility of fluid building up in her lungs, which would cause the diminished breathing capacity. The doctors look for a certain level of urination to make sure the fluids are not building up. Alyssa's urination is way above the level they need. That plus the lack of blood and fluid when they did the scope, gives more precedence that there is not a fluid build up.
In an earlier post I mentioned that the breathing troubles could be because of a reaction to one of the medications. Based on the fluid levels as stated above, the doctors are now almost positive that a reacton is the cause and have stopped giving her ATRA. There have been several xrays since the scope and each time the xrays are either the same or worse. As a test they did an xray of her lungs this morning and gave her a does of ATRA, then xrayed her lungs again this afternoon. They had gotten worse, which tells them it was the ATRA causing the problem. They have stopped that for the time being, and will not start it up again until her lungs get better. I asked about this happening again once they start her on ATRA again and the doctor said that this is only an issue during the initial stages of chemo, by the time she is back on ATRA she will be far enough along in her chemo treatment that this won't be an issue. Their primary concern now is to get her lungs and her breathing capacity back to normal, at the expense of the benefits the ATRA is doing for her. As one of the nurses explained it to me, the ATRA helps the baby blood cells to know what they should do, whether the become white blood cells, red blood cells, clotting agents, etc. So although that is needed, it is not going to hurt to not have that for a short period of time. If her lungs don't clear up, then the next step is a ventilator and they don't want that unless it is absolutely necessary. Taking her off ATRA is a little bump in her progression, but the ventilator is a major step backwords.
Right now they are thinking she will stay in ICU through Saturday and possibly Sunday. They want to make sure that she is breathing well enough on her own before moving her. It's better to stay here for longer rather than making trips up and down between ICU and her leukemia room.
Thursday, November 25, 2010
Happy Thanksgiving
Now thatI have got caught up I can tell you what is going on for the current day. When I got here she had just ordered breakfast. She has not eaten since Monday. She ordered pancakes and strawberries. She was pretty excited to eat.
The respiratory therapist just came in and said that she was his best patient. He just turned down her oxygen so we are moving in the right direction! The P.A. just came in and she said that she was going to rounds and then would come in and let me know what the game plan is.
Alyssa is a little discouraged that she has to be in ICU and that she is in the hospital on Thanksgiving.
I wanted to write down what I am thankful for:
1. My family
2. My parents that would drop everything to be with my daughter when I couldn't be there with her.
3. My husband and that the support that he is to me and Alyssa.
4. The power of the priesthood and a husband and son that are worthy to hold it.
5. The love and concern of so many people.
6. I never thought I would say this but I am very thankful for texting. While in ICU that is the only way to communicate.
7. Laptops and the internet.
8. The nurses and doctors taking care of Alyssa.
9. Health Insurance.
10. A bed and showers.
I will be staying with Alyssa until this is done. I am going on FLMA, that protects my job. However, I will be paid for the rest of my PTO, which I think is about 2 weeks. After that is done I am not paid. Kirk and Kesley are going back to Nebraska on Sunday. Kirk is hoping to work from home and if he can do that he we pack up and move out here. If he can't do that we will go to plan B. We have not figured out what plan B is yet though. We are taking it hour by hour.
By the way, anyone can visit her the only restriction is that if you have been sick you can't visit her. Her immune system is shot. You have to wash your hands before coming into her room and put hand sanitizer on. Also, she can not have flowers in her room, so as sweet as that is please don't send them.
She has a dvd player in her room so I suppose we will watch several movies together. She loves to read but she can't concentrate on that right now.
She has been very worried about school. She had this semester to finish and then next semester and then she would be graduated. I have talked to the school and we are waiting to hear back from the professors. We think that she can take a incomplete in her major classes and drop her other 2 classes. Hopefully she can work with her professors and take her finals sometime when she is feeling up to that. The school said that she can take them up to one year. Hopefully when she takes those finals she can then take her last two classes and graduate. For anyone that doesn't know her major is speech therapy. After she graduates she will go on to graduate school when she is up to it.
Thank you to all of your prayers and concern. It feels so good to know that we have so many friends and family that are very willing to help and do whatever is necessary to help us out. Happy Thanksgiving to everyone. Be thankful the little things in your life, you never know what is in front of you!
The respiratory therapist just came in and said that she was his best patient. He just turned down her oxygen so we are moving in the right direction! The P.A. just came in and she said that she was going to rounds and then would come in and let me know what the game plan is.
Alyssa is a little discouraged that she has to be in ICU and that she is in the hospital on Thanksgiving.
I wanted to write down what I am thankful for:
1. My family
2. My parents that would drop everything to be with my daughter when I couldn't be there with her.
3. My husband and that the support that he is to me and Alyssa.
4. The power of the priesthood and a husband and son that are worthy to hold it.
5. The love and concern of so many people.
6. I never thought I would say this but I am very thankful for texting. While in ICU that is the only way to communicate.
7. Laptops and the internet.
8. The nurses and doctors taking care of Alyssa.
9. Health Insurance.
10. A bed and showers.
I will be staying with Alyssa until this is done. I am going on FLMA, that protects my job. However, I will be paid for the rest of my PTO, which I think is about 2 weeks. After that is done I am not paid. Kirk and Kesley are going back to Nebraska on Sunday. Kirk is hoping to work from home and if he can do that he we pack up and move out here. If he can't do that we will go to plan B. We have not figured out what plan B is yet though. We are taking it hour by hour.
By the way, anyone can visit her the only restriction is that if you have been sick you can't visit her. Her immune system is shot. You have to wash your hands before coming into her room and put hand sanitizer on. Also, she can not have flowers in her room, so as sweet as that is please don't send them.
She has a dvd player in her room so I suppose we will watch several movies together. She loves to read but she can't concentrate on that right now.
She has been very worried about school. She had this semester to finish and then next semester and then she would be graduated. I have talked to the school and we are waiting to hear back from the professors. We think that she can take a incomplete in her major classes and drop her other 2 classes. Hopefully she can work with her professors and take her finals sometime when she is feeling up to that. The school said that she can take them up to one year. Hopefully when she takes those finals she can then take her last two classes and graduate. For anyone that doesn't know her major is speech therapy. After she graduates she will go on to graduate school when she is up to it.
Thank you to all of your prayers and concern. It feels so good to know that we have so many friends and family that are very willing to help and do whatever is necessary to help us out. Happy Thanksgiving to everyone. Be thankful the little things in your life, you never know what is in front of you!
LDS Hospital
I (Annalee) will probably be making most of the posts. When Alyssa is feeling up to it she will be adding to it also. Kirk has been posting the first two posts.
Alyssa got admitted to LDS Hospital late Saturday night. When we got there Monday afternoon they were pretty sure that she had APL but they needed to wait for her bone marrow test to come back. In the mean time she was having every kind of blood products to help boost her blood counts. Everything in her blood was extremely low. Some times she has had 10 things hanging on her iv pole at a time. After seeing how much blood products she is using it makes me very grateful for the people that have donated them If you are able I highly recommend giving blood to help anyone needing blood.
Anyways, on to Alyssa's stay at the hospital. On Monday night she finally got to sleep and had a good night. Around 5:00 am she got up to go to the bathroom and when she got back to bed she couldn't breathe. I called for the nurse. They came rushing in and they couldn't give her enough oxygen. They called the respiratory team in and she was very scared. I kept telling her it was going to be okay. She was rushed to ICU.
She was on 100 percent oxygen and she had fluid in her lungs. They took ex rays and were waiting for the results to come back. They had taken ex rays the day before and found the fluid and they were going to watch and if it didn't do any better they would have to do a scope down her throat. When she got to the ICU the lung specialist came in and said she needed to do the scope. She was now very scared. They put the numbing spray down her throat and did the scope.
After the scope was done they didn't see a lot of blood so they didn't think she was bleeding. Bleeding is a real concern with her because she doesn't have any clotting agents in her blood. The results came back and they determined that she was not bleeding and it was a reaction to her chemo that she had started. They started her iv chemo then and they said that when that kicked in her breathing would get better.
The days are really running together so you will need to forgive while I get caught up. On Wednesday Kirk came and I went to his mom's house for a shower and good sleep on a bed. He said that they had to put the pressure mask back on last night. That mask gives her more oxygen. On Thursday when I got here she was on oxygen just through the nose. She is a little discouraged because she thought she was going up to her room today. We keep telling her that we need to get this breathing thing under control and then she doesn't have to come back down here
Alyssa got admitted to LDS Hospital late Saturday night. When we got there Monday afternoon they were pretty sure that she had APL but they needed to wait for her bone marrow test to come back. In the mean time she was having every kind of blood products to help boost her blood counts. Everything in her blood was extremely low. Some times she has had 10 things hanging on her iv pole at a time. After seeing how much blood products she is using it makes me very grateful for the people that have donated them If you are able I highly recommend giving blood to help anyone needing blood.
Anyways, on to Alyssa's stay at the hospital. On Monday night she finally got to sleep and had a good night. Around 5:00 am she got up to go to the bathroom and when she got back to bed she couldn't breathe. I called for the nurse. They came rushing in and they couldn't give her enough oxygen. They called the respiratory team in and she was very scared. I kept telling her it was going to be okay. She was rushed to ICU.
She was on 100 percent oxygen and she had fluid in her lungs. They took ex rays and were waiting for the results to come back. They had taken ex rays the day before and found the fluid and they were going to watch and if it didn't do any better they would have to do a scope down her throat. When she got to the ICU the lung specialist came in and said she needed to do the scope. She was now very scared. They put the numbing spray down her throat and did the scope.
After the scope was done they didn't see a lot of blood so they didn't think she was bleeding. Bleeding is a real concern with her because she doesn't have any clotting agents in her blood. The results came back and they determined that she was not bleeding and it was a reaction to her chemo that she had started. They started her iv chemo then and they said that when that kicked in her breathing would get better.
The days are really running together so you will need to forgive while I get caught up. On Wednesday Kirk came and I went to his mom's house for a shower and good sleep on a bed. He said that they had to put the pressure mask back on last night. That mask gives her more oxygen. On Thursday when I got here she was on oxygen just through the nose. She is a little discouraged because she thought she was going up to her room today. We keep telling her that we need to get this breathing thing under control and then she doesn't have to come back down here
Admitted to the hospital
About two weeks ago Alyssa started noticing small bruises on her legs. At first she didn't think much of it, she thought she just bumped into something, and she does bruise easily. She had just made a new skirt in her sewing class and wore it to church the following Sunday. Annalee called her later that day to see if anyone commented on her new skirt. Her response was no, but they commented on the bruises on her legs. When Annalee asked what she meant, she said she had big bruises all over her legs. She was going to the doctor the following day for a sinus infection and mentioned the bruising then. The doctor didn't seem to overly concerned and said it probably wasn't anything to worry about.
On Friday Annalee called her again to see how the bruises were and if they had cleared up. She said that they had gotten worse and that she now had them on other parts of her body. She was very strongly admonished to call the doctor and get in to see him, this was not normal! Her appointment was the next day (Saturday). The doctor ordered some blood work and she went to the lab to have blood drawn. She was told they would call her in a day or two with the results. Her brother Bryan was on his way down from BYU-Idaho and Alyssa went to pick him up at the drop off place and take him to Grandma Ward's where he would be staying until Annalee and I arrived in town on Wednesday. About an hour after leaving the lab, she gets a call saying she needs to go to the emergency room for more blood work, the results came back abnormal. She called us and told us the news, Annalee could tell she was near tears and asked if she wanted Grandma and Grandpa Beecher to pick her up and take her. Annalee's parents left immediately from Brigham City, picked her up at my mom's in Sandy and then down to the emergency room in Orem where they waited with her through the rest of the time.
Meanwhile, Annalee and I are back home in Omaha waiting on pins and needles; hoping for the best, but expecting the worst. The result was even worse than what we expected. We were already planning on driving out to Utah on Tuesday for Thanksgiving, so we started preparations for leaving earlier if needed. The phone call came about 9:00 p.m. where we found out that Alyssa had a form of leukemia. We hurried and finished packing, made a few phone calls to friends to tell them the news and to ask them to watch over the house. We got a few hours of sleep and left about 4:30 the following morning for the 15 hour drive to Utah.
Once the test results came back indicating leukemia, preparations were made to transfer Alyssa via ambulance to LDS hospital in Salt Lake City. This was the first time she had been in an ambulance, was quite taken with all the paraphernalia in there, and thought it was kind of cool. Her Grandma rode in the ambulance with her, while her Grandpa followed in the car. They both stayed with Alyssa until we were finally able to get here Monday afternoon.
What we thought was going to be a 15 hour drive, ended up taking a day and a half. We ran into storms throughout Wyoming that slowed us down, then got stopped by a road closure when we were about 2 hours from our destination. We sat on the interstate for three hours trying to get off the exit, it was blocked by semi after semi after semi. We finally turned around headed the wrong way down the interstate for about half a mile until we found a place where we could cross over to the correct side. We traveled back the way we had come about 5 to 10 miles, looking for anyplace that had rooms available where we could spend the night. We found a dive of a motel in Lyman, Wyoming where we spent the night, and continued the rest of our drive the following morning. It was still slow going because of winds, snow packed roads and blowing snow, but we finally made it the hospital about 10:30 non the worse for wear.
Annalee and I are so thankful for the family who was here, that was able to spend the time necessary with Alyssa while we were enroute. I don't even want to think about what she would have had to go through had she had to do this all by herself.
On Friday Annalee called her again to see how the bruises were and if they had cleared up. She said that they had gotten worse and that she now had them on other parts of her body. She was very strongly admonished to call the doctor and get in to see him, this was not normal! Her appointment was the next day (Saturday). The doctor ordered some blood work and she went to the lab to have blood drawn. She was told they would call her in a day or two with the results. Her brother Bryan was on his way down from BYU-Idaho and Alyssa went to pick him up at the drop off place and take him to Grandma Ward's where he would be staying until Annalee and I arrived in town on Wednesday. About an hour after leaving the lab, she gets a call saying she needs to go to the emergency room for more blood work, the results came back abnormal. She called us and told us the news, Annalee could tell she was near tears and asked if she wanted Grandma and Grandpa Beecher to pick her up and take her. Annalee's parents left immediately from Brigham City, picked her up at my mom's in Sandy and then down to the emergency room in Orem where they waited with her through the rest of the time.
Meanwhile, Annalee and I are back home in Omaha waiting on pins and needles; hoping for the best, but expecting the worst. The result was even worse than what we expected. We were already planning on driving out to Utah on Tuesday for Thanksgiving, so we started preparations for leaving earlier if needed. The phone call came about 9:00 p.m. where we found out that Alyssa had a form of leukemia. We hurried and finished packing, made a few phone calls to friends to tell them the news and to ask them to watch over the house. We got a few hours of sleep and left about 4:30 the following morning for the 15 hour drive to Utah.
Once the test results came back indicating leukemia, preparations were made to transfer Alyssa via ambulance to LDS hospital in Salt Lake City. This was the first time she had been in an ambulance, was quite taken with all the paraphernalia in there, and thought it was kind of cool. Her Grandma rode in the ambulance with her, while her Grandpa followed in the car. They both stayed with Alyssa until we were finally able to get here Monday afternoon.
What we thought was going to be a 15 hour drive, ended up taking a day and a half. We ran into storms throughout Wyoming that slowed us down, then got stopped by a road closure when we were about 2 hours from our destination. We sat on the interstate for three hours trying to get off the exit, it was blocked by semi after semi after semi. We finally turned around headed the wrong way down the interstate for about half a mile until we found a place where we could cross over to the correct side. We traveled back the way we had come about 5 to 10 miles, looking for anyplace that had rooms available where we could spend the night. We found a dive of a motel in Lyman, Wyoming where we spent the night, and continued the rest of our drive the following morning. It was still slow going because of winds, snow packed roads and blowing snow, but we finally made it the hospital about 10:30 non the worse for wear.
Annalee and I are so thankful for the family who was here, that was able to spend the time necessary with Alyssa while we were enroute. I don't even want to think about what she would have had to go through had she had to do this all by herself.
Wednesday, November 24, 2010
What is APL and how is it treated?
Alyssa was diagnosed with Acute Promyelocytic leukemia (APL) on Nov 20, 2010. This is a subtype of Acute Myeloblastic leukemia (AML), and is one of the better subtypes to have. It has a survival rate of over 90%, and can be treated with chemotherapy only (no bone marrow transplant).
APL differs from the other subtypes in that the leukemia cells have a unique chromosome abnormality known as a 15 - 17 translocation. This chromosome abnormality makes the leukemia cells particularly susceptible to certain medications, one of which is called retinoic acid (ATRA). Studies have shown that when ATRA is given with standard leukemia chemotherapy, there is a much greater chance of resulting in cure than in any of the other known AML's where ATRA has no effect.
The treatment of APL is aimed at first making the symptoms of the leukemia disappear, and next to cure the patient of the disease for good. While there is a good chance to succeed in these goals, they can only be reached by applying a complicated and lengthy treatment that is divided into different phases. The first phase is called induction therapy. During this phase, you start by taking the ATRA by mouth followed by infusion of 1 to 2 chemotherapy agents. The chemotherapy is given over approximately one week, and the ATRA is given for up to 3 months with the goal of this phase being to destroy all of the measurable leukemia cells in the blood and bone marrow. The treatment will result in a significant suppression of the blood count, and it usually takes approximately 30 days after starting chemotherapy before the blood counts normalize. Alyssa will remain in the hospital during this time. Once the blood count has recovered and there is no evidence in the bone marrow, Alyssa will be in remission. However, even when there are no visible leukemia cells in the blood or marrow, without further treatment, residual leukemia cells present at a level that can't be seen will grow, causing a relapse. Thus further chemotherapy is needed to prevent these cells from multiplying and causing a relapse. The chemotherapy after induction is called consolidation. Repeated courses of consolidation will be needed and this will be followed by maintenance therapy with the entire treatment lasting approximately 18 months. After the initial hospital stay, the other courses of chemotherapy can be received as outpatient
APL differs from the other subtypes in that the leukemia cells have a unique chromosome abnormality known as a 15 - 17 translocation. This chromosome abnormality makes the leukemia cells particularly susceptible to certain medications, one of which is called retinoic acid (ATRA). Studies have shown that when ATRA is given with standard leukemia chemotherapy, there is a much greater chance of resulting in cure than in any of the other known AML's where ATRA has no effect.
The treatment of APL is aimed at first making the symptoms of the leukemia disappear, and next to cure the patient of the disease for good. While there is a good chance to succeed in these goals, they can only be reached by applying a complicated and lengthy treatment that is divided into different phases. The first phase is called induction therapy. During this phase, you start by taking the ATRA by mouth followed by infusion of 1 to 2 chemotherapy agents. The chemotherapy is given over approximately one week, and the ATRA is given for up to 3 months with the goal of this phase being to destroy all of the measurable leukemia cells in the blood and bone marrow. The treatment will result in a significant suppression of the blood count, and it usually takes approximately 30 days after starting chemotherapy before the blood counts normalize. Alyssa will remain in the hospital during this time. Once the blood count has recovered and there is no evidence in the bone marrow, Alyssa will be in remission. However, even when there are no visible leukemia cells in the blood or marrow, without further treatment, residual leukemia cells present at a level that can't be seen will grow, causing a relapse. Thus further chemotherapy is needed to prevent these cells from multiplying and causing a relapse. The chemotherapy after induction is called consolidation. Repeated courses of consolidation will be needed and this will be followed by maintenance therapy with the entire treatment lasting approximately 18 months. After the initial hospital stay, the other courses of chemotherapy can be received as outpatient
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