Alyssa and I went up to the clinic at 7:30 a.m. She got her blood drawn and then we had to wait for her counts from her blood. We then had to wait for 45 minutes to have the PA come in a talk to us. After the PA gave the okay to collect her stem cells, we went to the collection room and started that process.
They hooked her up to a machine that took out her blood and separated her stem cells and collected them in a iv bag. Her blood then went into another tube back to her body. They explained it to me that it is similar to giving platelets. They told her that her number on Monday was 2.6 and went up to 6.6. They took out more than what they needed in hopes that they could collect enough cells today so she wouldn't have to come in again for collection. It was a hard day for her. She had to lay very still from 9:00 am to 4:00 pm. She was getting very frustrated after about 2 hours. The nurse gave her some medicine to relax her and she fell asleep. She was really hoping that she didn't have to do this again.
We just got a call from the clinic and they told us that we have very good news. They needed to collect 5-10 million cells. They collected 11.9 enough for 2 transplants! This means that she doesn't have collect again. The plan now is that they send some of her stem cells to get tested one more time to make sure that there is no more leukemia. This test takes a week to get back. We will then go in and talk to the doctors and be admitted to the hospital. We think that she will get admitted next Wednesday.
The nurse explained it to us about the transplant that made sense to us. Alyssa has APL and that means that her leukemia is in the tissue not in the bone marrow. Since the bone marrow is not damaged from the leukemia that is why she can donate her stem cells back to herself without the worry of the leukemia coming back.
All in all we started off with a rough day but had a very good ending. Still trying to sell our house. If anyone wants to buy it just let us know!
Tuesday, March 29, 2011
Saturday, March 26, 2011
We are starting next phase
We went and talked to the doctor on Thursday and they said that we need to start the next phase. Alyssa has to go up to hospital Friday-Monday and get a shot to boost her white blood cells. On Monday after getting the shot they will take a blood sample and see if it is high enough to start the collection process of her stem cells. If the number is high enough we will go in on Tuesday and start the collection. They use 2 of her central lines and pull blood out of her and get the stem cells and they but the blood back into her. This usually takes around 4 hours. After they collect it they send it to the lab. They have to collect 500 million cells. If they get enough the first collection then we are done, if they don't get enough cells then we keep going every day until they get enough. They have to send the blood to be tested to make sure there are no leukemia cells in her blood. The blood test takes a week to get the results. When the test results come back negative then we start the next process of being admitted to the hospital and getting chemo and the transplant.
With the shot that they give her they told her she would have a headache and some bone ache. She said that she had a slight headache today. We are pretty excited to move on to this next phase. We are just hoping that our house sells fast so we can finally get settled in our own home.
With the shot that they give her they told her she would have a headache and some bone ache. She said that she had a slight headache today. We are pretty excited to move on to this next phase. We are just hoping that our house sells fast so we can finally get settled in our own home.
Tuesday, March 22, 2011
It's Negative!
Sorry for the lack of posting lately. We have been a little busy these last few days. We moved into Kirk's mom's basement and cleaned out the townhome. Kirk came last night so we are finally together. We will have to move our stuff from the truck to a storage unit when the truck gets here. We think that the truck will be here sometime later in the week. If anyone feels like helping move the contents out of the truck to a storage unit just let us know. We hope that our house sells fast so we can finally feel some sense of normalcy.
Now for the really good news. We have been waiting for the results of the bone marrow biopsy. The hospital called this morning telling us that it is negative. What that means is that she can get the transplant from her not from the donor. It is such a releif to know that she won't have so many complications after the transplant.
She has to go in this week to have 2 tests before they can start the process of the transplant. From what we know now she will have to have a shot for 3 days to boost her white blood cells. After the shot she will go into the clinic everyday to collect her blood. This has changed since the last time I told you about the transplant. There are two ways to get the bone marrow, the first way is taking the marrow like a bone marrow biopsy where they put a huge needle in her back and drill it into the bone and suction out the marrow. The second way is taking her blood out of her through her central line. It is like a transfusion but reverse. Apparently the reason that it has been changed is because all of the literature out there says that taking her blood through the central line has better results than the bone marrow biopsy source. Alyssa is more excited about doing it through her central line than the biopsy way. She will just have to go up to the clinic for 3 or 4 days and lay in a bed for 3 hours while they draw her blood and run it through a spinning machine.
We have to go see the doctor on Thursday for a meeting to explain more about what we are doing next. After that meeting I will let you know more. We are so excited that we are finally together as a family and that the test came out negative!
Now for the really good news. We have been waiting for the results of the bone marrow biopsy. The hospital called this morning telling us that it is negative. What that means is that she can get the transplant from her not from the donor. It is such a releif to know that she won't have so many complications after the transplant.
She has to go in this week to have 2 tests before they can start the process of the transplant. From what we know now she will have to have a shot for 3 days to boost her white blood cells. After the shot she will go into the clinic everyday to collect her blood. This has changed since the last time I told you about the transplant. There are two ways to get the bone marrow, the first way is taking the marrow like a bone marrow biopsy where they put a huge needle in her back and drill it into the bone and suction out the marrow. The second way is taking her blood out of her through her central line. It is like a transfusion but reverse. Apparently the reason that it has been changed is because all of the literature out there says that taking her blood through the central line has better results than the bone marrow biopsy source. Alyssa is more excited about doing it through her central line than the biopsy way. She will just have to go up to the clinic for 3 or 4 days and lay in a bed for 3 hours while they draw her blood and run it through a spinning machine.
We have to go see the doctor on Thursday for a meeting to explain more about what we are doing next. After that meeting I will let you know more. We are so excited that we are finally together as a family and that the test came out negative!
Wednesday, March 16, 2011
No more arsenic for now
We got a phone call from the clinic today telling us that Alyssa didn't have to get the last three doses of arsenic. We need to wait for the results to come back from the biopsy and then we will know what the next steps will be. Alyssa is so excited to not have to get arsenic for awhile. Keep you posted when we get the results of the biopsy.
Kirk is finally coming here. He is packing the truck on Friday and Saturday and then his brother, Kevin and him are driving home. Kevin flew out on Thursday to help Kirk. Thanks Kevin, I am so glad that Kirk doesn't have to drive that long ride all by himself
Kirk is finally coming here. He is packing the truck on Friday and Saturday and then his brother, Kevin and him are driving home. Kevin flew out on Thursday to help Kirk. Thanks Kevin, I am so glad that Kirk doesn't have to drive that long ride all by himself
Tuesday, March 15, 2011
Very Frustrated!
The last time Alyssa has had arsenic was Thursday. Everyday since Thursday her QTC numbers have been too high. We think that Friday was calculated wrong. When she doesn't get it for the day her number has go below 460 and it has never gone below that. Alyssa was upset on Friday but more on Monday.
When we went in today the number was still too high. She was having her bone marrow biopsy today so we talked to the doctor. We asked if it is really beneficial to have the last 3 doses. Right now it has been 6 days since she has had any. The doctor said that she was fully prepared to tell us that we needed to complete all the doses. After talking to us she doesn't know what to do. There is a tumor board meeting tomorrow and they are going to discuss Alyssa's case. After all the doctors talk it out they are going to call us and let us know what the plan is. We told them that we are going to do what they want us to do but I was just concerned for Alyssa's mental state.
Why does this treatment have to be different all the time?????? I guess we will see tomorrow what the next step is. The biopsy results will take a week to get back. They are planning on the harvesting of the bone marrow on March 24th if the results are negative from the bone marrow.
When we went in today the number was still too high. She was having her bone marrow biopsy today so we talked to the doctor. We asked if it is really beneficial to have the last 3 doses. Right now it has been 6 days since she has had any. The doctor said that she was fully prepared to tell us that we needed to complete all the doses. After talking to us she doesn't know what to do. There is a tumor board meeting tomorrow and they are going to discuss Alyssa's case. After all the doctors talk it out they are going to call us and let us know what the plan is. We told them that we are going to do what they want us to do but I was just concerned for Alyssa's mental state.
Why does this treatment have to be different all the time?????? I guess we will see tomorrow what the next step is. The biopsy results will take a week to get back. They are planning on the harvesting of the bone marrow on March 24th if the results are negative from the bone marrow.
Wednesday, March 9, 2011
Day 25 down
I wrote about day 24 but it must have gotten lost in cyberspace. Our friends Mike and Lisa came back down from Idaho for her next set of treatments and they were giving me a hard time for not posting. I guess I figure there is nothing new so why post. Sorry for the delay in postings!
Anyway Alyssa has gotten 25 doses. We have decided not to go in on the weekend because it is a very frustrating time. The cardiologists either read the ekg wrong or we have to wait for 3 hours just for them to read it. If all goes well she will be done with arsenic FOREVER on Tuesday. After she gets that done she will have the bone marrow biopsy and then we go from there. It takes a week for the results from the biopsy. She had to go to the doctor and get a physical and the dentist for a checkup before her transplant. We found a doctor and a dentist that our insurance would pay for and went to them this week.
Kelsey got here yesterday. She decided she wanted to come a little earlier than Kirk. Her Uncle Kevin and Aunt Debbie were in Omaha picking up their son. He served in the Omaha Mission for our church. Kelsey drove out with them. They ran into bad weather so they stayed the night in Evanston. She is looking for a job and wants to go to school in the fall. If you know of any jobs out there please let us know.
Kirk's last day in the office is March 18th. He is busy getting the house packed up with the help of some sweet ladies from our church. He is also painting some rooms in the house because the feedback of the people looking at the house have said they don't like the paint. We are hoping that this will speed the selling of our house. Please keep us in your prayers that this house can sell fast so we can begin a somewhat normal life again.
My dear friend, Cheri, sent me the news story below. I wanted to share it with you. It is about a blind quilter. As you all know I love to quilt. This lady's story is very good. I hope that it will inspire you to be a better person.
http://www.youtube.com/watch?v=7lfaSmDxVZQ
Thanks again for everyone's concern for Alyssa and my family. Words could never express my gratitude.
Anyway Alyssa has gotten 25 doses. We have decided not to go in on the weekend because it is a very frustrating time. The cardiologists either read the ekg wrong or we have to wait for 3 hours just for them to read it. If all goes well she will be done with arsenic FOREVER on Tuesday. After she gets that done she will have the bone marrow biopsy and then we go from there. It takes a week for the results from the biopsy. She had to go to the doctor and get a physical and the dentist for a checkup before her transplant. We found a doctor and a dentist that our insurance would pay for and went to them this week.
Kelsey got here yesterday. She decided she wanted to come a little earlier than Kirk. Her Uncle Kevin and Aunt Debbie were in Omaha picking up their son. He served in the Omaha Mission for our church. Kelsey drove out with them. They ran into bad weather so they stayed the night in Evanston. She is looking for a job and wants to go to school in the fall. If you know of any jobs out there please let us know.
Kirk's last day in the office is March 18th. He is busy getting the house packed up with the help of some sweet ladies from our church. He is also painting some rooms in the house because the feedback of the people looking at the house have said they don't like the paint. We are hoping that this will speed the selling of our house. Please keep us in your prayers that this house can sell fast so we can begin a somewhat normal life again.
My dear friend, Cheri, sent me the news story below. I wanted to share it with you. It is about a blind quilter. As you all know I love to quilt. This lady's story is very good. I hope that it will inspire you to be a better person.
http://www.youtube.com/watch?v=7lfaSmDxVZQ
Thanks again for everyone's concern for Alyssa and my family. Words could never express my gratitude.
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