Mia is working on her second round of chemo. This drug, romedepsin, is given on a 28-day cycle. She receives a four hour infusion on days one, eight and fifteen. Today is day eight of her second cycle. The first round caught us off guard. We were unprepared for the vomiting and diarrhea. Because of that she was dehydrated and lost a lot of weight. This time around we are ready. The first week has been better. She has still experienced some vomiting and diarrhea, but not anything compared to the first time. She did have a blood transfusion last week and she will get another today. She also got a platelet transfusion on Saturday because her gums were bleeding quite a bit.
So today is another long day. We came in expecting to get chemo and a four hour IVIG infusion. But Mia's hemoglobin is down so we will also be getting red blood cells. She had an EKG when we got here so now we are waiting on the cardiologist as well. Mia has a heart murmur that seems to be getting more pronounced. Also her blood pressure is always on the low side while her heart rate runs on the high side. Just a couple of things to keep track of on top of everything else.
We haven't heard yet on the transplant but it is a little early still.
Wednesday, June 19, 2013
Sunday, June 9, 2013
Transplant Info
One final post for today. A week ago Friday we received word that Jessica is a donor match. When I told her, Jessica said "I get to help Mia again!" with a big smile. Having a donor is a big deal. So we went to SLC to have a consultation with the transplant doctor, Dr. Pulsipher.
Mia's first transplant was an autologous transplant, meaning they used her own stem cells. They are fewer complications with that kind of transplant. She will be having a allogenic transplant this time around. And the complications and side effects are many.
Dr Pulsipher explained why they do these transplant very clearly. Over time the medical world has discovered that the best way to fight cancer is not with chemotherapy drugs but rather it is with immunotherapy. We each have an immune system that is supposed to fight off any foreign or abnormal cell in the body. The immune system should fight off cancer cells however somehow the cancer cells in a patient's body have managed to fool the immune system. So a transplant is in reality an immune system transplant. We are taking the cells from Jessica. Her cells should react with Mia's cells and through a very carefully calculated procedure begin to fight Mia's cells. This is Graph vs Host syndrome. The idea is that while Jessica's cells are fighting Mia's immune system they are also fighting the cancer cells as well. In order for Mia's body to not reject or fight off all of Jessica's cells, Mia will be on immunosuppressant drugs. This allows the new cells to fight more effectively against Mia's cells. Over a course of one to five years Mia will be weaned off the immunosuppressant drugs. Donor, Allogenic, transplants are much harder on a persons body. Given Mia's medical history there is always the possibility of severe side effects. However when the donor is a sibling the side effects are somewhat lessened.
This transplant will require that we be in SLC for a minimum of 107 days. This is what they told us the first time around, but this time they really do mean it. Graph vs host can be very dangerous and doesn't always show up right away. Also the engraphment period takes longer. So she will actually be in the hospital longer than the first time around.
Being able to do the transplant is a good thing, despite the separation from family. Being able to do the transplant means that her body has responded to the latest cancer drug that we tried. It also means that her body is reasonably stable. And she has responded very well to this last drug. Her spleen is back where it should be and can only be felt with very careful examination. Her numbers are better than they have been for three months. Other than not eating and having lost so much weight she is doing really well. A month ago I said that a transplant was not happening anytime soon. In fact I felt that there was a very real possibility that we wouldn't be able to do a transplant at all, that she would never be well enough to have one.
And now here we are. We will will do the transplant just as soon as we can get insurance approval. There is some question as to whether that will be easy or we will have to fight for it. But either way I think we will get approval. And then it is on to SLC.
Mia's first transplant was an autologous transplant, meaning they used her own stem cells. They are fewer complications with that kind of transplant. She will be having a allogenic transplant this time around. And the complications and side effects are many.
Dr Pulsipher explained why they do these transplant very clearly. Over time the medical world has discovered that the best way to fight cancer is not with chemotherapy drugs but rather it is with immunotherapy. We each have an immune system that is supposed to fight off any foreign or abnormal cell in the body. The immune system should fight off cancer cells however somehow the cancer cells in a patient's body have managed to fool the immune system. So a transplant is in reality an immune system transplant. We are taking the cells from Jessica. Her cells should react with Mia's cells and through a very carefully calculated procedure begin to fight Mia's cells. This is Graph vs Host syndrome. The idea is that while Jessica's cells are fighting Mia's immune system they are also fighting the cancer cells as well. In order for Mia's body to not reject or fight off all of Jessica's cells, Mia will be on immunosuppressant drugs. This allows the new cells to fight more effectively against Mia's cells. Over a course of one to five years Mia will be weaned off the immunosuppressant drugs. Donor, Allogenic, transplants are much harder on a persons body. Given Mia's medical history there is always the possibility of severe side effects. However when the donor is a sibling the side effects are somewhat lessened.
This transplant will require that we be in SLC for a minimum of 107 days. This is what they told us the first time around, but this time they really do mean it. Graph vs host can be very dangerous and doesn't always show up right away. Also the engraphment period takes longer. So she will actually be in the hospital longer than the first time around.
Being able to do the transplant is a good thing, despite the separation from family. Being able to do the transplant means that her body has responded to the latest cancer drug that we tried. It also means that her body is reasonably stable. And she has responded very well to this last drug. Her spleen is back where it should be and can only be felt with very careful examination. Her numbers are better than they have been for three months. Other than not eating and having lost so much weight she is doing really well. A month ago I said that a transplant was not happening anytime soon. In fact I felt that there was a very real possibility that we wouldn't be able to do a transplant at all, that she would never be well enough to have one.
And now here we are. We will will do the transplant just as soon as we can get insurance approval. There is some question as to whether that will be easy or we will have to fight for it. But either way I think we will get approval. And then it is on to SLC.
Make-A-Wish
We had been contacted by Make-A-Wish about a month ago. Originally we thought that if we got to do a wish then maybe we could take a family trip. But it has become obvious that Mia will be unable to travel for a very long time, so we had to think of something else.
she has been asking for some time for a new desk. Here is her old one. It is falling apart and was a hand me down from Uncle James before he joined the military. She also loves to watch tv, especially netflix. Obviously this old tv is good for watching dvd's and that is it.
She spends a lot of time sitting in her room, and we thought that an inclining bed would be very comfortable for her.
And her dresser is another hand me down that was very hard to open and not big enough for her clothes. So we asked for a room makeover for her wish. She was so excited about the whole thing. She told everyone about it. All the new furniture, tv and blue ray dvd player were donated and installed by RC Willey
Getting the tv installed
Mia with both her new remotes!
All done!
Putting in the furniture. The guys snuck out before I could get another picture.
Brenda from Make a wish brought over all the decor and new bedding. While she was putting it all together Mia was banished to the upstairs to wait. Here she is with Heidi and her cousin Cassie waiting for the big reveal!
Finally the big moment! She was so excited. The room was amazing!
Mia and Brenda
Just chilling on her new fabulous bed!
The hardest part was getting all her stuff back in the room. But she now has room for her clothes.
Her new desk and nightstand give her lots of room for all her drawing supplies. We are very thankful for Make A Wish and how quickly they pulled this all together. Mia is very comfortable in her room. She has three new best friends, her brother and two sisters. They all want to spend time in there with her. I am really glad it worked out like this. Mia wouldn't have enjoyed a trip as much as she will this room.
Jessica
Wednesday, May 29, 2013
Pictures at Last!
I discovered that after I got my new phone I wasn't signed on to my google plus account which prevented my phone from uploaded my pictures to my computer. All fixed now so here are a few pictures from the last month or so.
When Mia first started coming to the clinic she really liked Justin Bieber. They gave her a beanie bear of Justin Bieber. but since then she has moved on to One Direction and wanted to get rid of her bear. At the hospital one of the housekeepers absolutely LOVES Justin Bieber. So we gave it to her. She was very excited. We love Amber and she is always so excited to see Mia.
Jessica likes to take self portraits.
Home from the hospital snuggling with dad.
Heidi is helping me make dinner.
Here Mia is waiting to be admitted to the hospital.
In the hospital.
Heidi and her friends, Kezzi and Julia, tried out for the end of year school talent show. They sang
"The Lion Sleeps Tonight." Becasue the High school's mascot is lions they all wore Borah high school shirts.
On Monday we planned a picnic at Eagle Island State Park. It was the first family outing we have had in a very long time. We didn't last very long. Mia is not able to be out much. She gets very tired.
Snuggling in Daddy's bed is one of Mia's favorite things!
Last night was Heidi's last softball game. They won which was a nice way to end the season. Afterwards the coach had a necklace for each. Heidi is number five.
Sunday, May 26, 2013
Into the Hospital Again
Last Friday, Mia started throwing up. I knew she was getting dehydrated. On Monday we went in for counts and discovered she had lost 8 pounds in three days. Of course some of that was dehydration, she was looking very bad, with sunken cheeks and large eyes. Also her heart rate was in the 40's. So instead of going home her doctor admitted her into the hospital. She now has a feeding tube placed again. She looks better since she got fluids. The doctors aren't to concerned about her heart rate because it is probably linked to her malnutrition. And over the week it has come up some and is now in the 60's. We got out of the hospital on Friday evening. She is having a hard time with throwing up. The cancer drug is most likely the cause of it. She really doesn't feel well.
On a happy note, we met with the Make-A-Wish people. Mia has asked to have her room redone with new furniture and tv and an inclining bed. She is very excited about the TV. She loves to watch netflix and the TV she has in her room right now is an old one that she can only watch videos on.
The ward held a special fast for Mia on this week. They had a meeting on Wednesday night at the end of mutual to start with a ward prayer. I guess there were quite a few people there. Casey and the boys were there but I was at Heidi's softball game.
I am a fairly private person and sometimes it is hard having everyone aware of what is going on. I appreciate all of the support and prayers that are offered in our behalf. I am right in the middle of this and just try to do what needs to be done. I don't spend a lot of time thinking about where this is all going because it is too hard. I manage to do a pretty good job until someone asks me how I am doing!
Next week is the kids last week of school. I can't believe it has already been more than a year since we stared this journey with Mia. The time has flown. Jessica and Heidi are growing up so fast and I feel like I am missing it because I have to remain so focused on Mia. Andrew has one year of high school left and Jessica starts kindergarten. Crazy!
PS Sorry I don't have any pictures. For some reason I can't get pictures off of my phone. I will have to get it figured out later.
On a happy note, we met with the Make-A-Wish people. Mia has asked to have her room redone with new furniture and tv and an inclining bed. She is very excited about the TV. She loves to watch netflix and the TV she has in her room right now is an old one that she can only watch videos on.
The ward held a special fast for Mia on this week. They had a meeting on Wednesday night at the end of mutual to start with a ward prayer. I guess there were quite a few people there. Casey and the boys were there but I was at Heidi's softball game.
I am a fairly private person and sometimes it is hard having everyone aware of what is going on. I appreciate all of the support and prayers that are offered in our behalf. I am right in the middle of this and just try to do what needs to be done. I don't spend a lot of time thinking about where this is all going because it is too hard. I manage to do a pretty good job until someone asks me how I am doing!
Next week is the kids last week of school. I can't believe it has already been more than a year since we stared this journey with Mia. The time has flown. Jessica and Heidi are growing up so fast and I feel like I am missing it because I have to remain so focused on Mia. Andrew has one year of high school left and Jessica starts kindergarten. Crazy!
PS Sorry I don't have any pictures. For some reason I can't get pictures off of my phone. I will have to get it figured out later.
Sunday, May 19, 2013
A Very Long Week
On Friday May 10th Mia got out of the hospital. We went in with 7 medications and came home with 12, 3 of which are IV medicines. I decided the best thing to do would be to set an alarm on my phone for each time I needed to do something with her medicine. I start at 5:30 am and get finished just after midnight. I think I have 15 alarms reminding me to do give medicine! That first day or two I sure missed the hospital nurses!
On Monday we returned to the clinic to start our new cancer therapy, romedepsin. Unfortunately there was some issue with the insurance coverage so we had to wait. while we were there we spoke with Dr. Hansen about her low platelet counts. On that day they were at a 3. He let me know that I should indeed be somewhat concerned about it. The two major concerns are bleeding in the brain and in the GI tract. Bleeding in the brain is bad for obvious reasons and bleeding in the GI tract is bad because you can lose a lot of blood in a short amount of time. Platelet transfusions are not very effective because the transfused platelets only last for a few days in your system. Unfortunately in Mia's case they don't make much difference at all because her spleen traps most of them. We ended up doing a platelet transfusion to see if it might help at all. That appointment was about 7 hours.
On Tuesday afternoon I took Andrew, Heidi, and Jessica to have their blood drawn to see if they could be matches for Mia should she be able to have a bone marrow transplant. Andrew and Heidi were both a little squeamish about it, but Jessica sat and watched the whole thing and thought it was great!. On our way home the lab called to say that the blood may have been mislabeled and to be on the safe side they wanted to redraw everyone. Fun for them:)
On Wednesday Mia and I were once again at the clinic. This time we were able to start her new cancer therapy since the insurance issue was cleared up. Pretty easy infusion. We were only there for about 7 hours. We also checked her counts and her platelets were only at a 4. The platelet transfusion did not have any long term benefit. The doctors want to stay away from transfusions because she may be getting a transplant and the more transfusions she has can increase the number of antigens in her blood and make the transplant harder.
On Thursday we were back at the clinic to get an IVIG infusion. This was supposed to be a relatively short appointment, only 4-5 hours. (When did I start to consider a 4-5 hour appointment short?) The IVIG went well but Mia started complaining that her groin hurt and then she threw up. So a CBC was done and her hemoglobin was low, 7, so we decided she need a red blood cell transfusion. What was supposed to be a short appointment turned into ten hours. Because I thought it would be quick I took Jessica with me. It is very hard for an active 5 year old to cooped up like that for 10 hours but she did pretty good with only a few minor temper tantrums.
So it was a long week. Next week we have to see the doctor on Monday and then do treatment again on Wednesday. They are watching her potassium and magnesium levels very closely as the new medicine can cause unsafe drops. She was low when she started so she is also on potassium. Because of her constant nausea she is also on zofran. She has not eaten well the last couple of days and I think she may have lost a little weight. She is also not drinking and will probably need some IV fluids to get her hydrated. I can lonly get her to drink so much.
On Monday we returned to the clinic to start our new cancer therapy, romedepsin. Unfortunately there was some issue with the insurance coverage so we had to wait. while we were there we spoke with Dr. Hansen about her low platelet counts. On that day they were at a 3. He let me know that I should indeed be somewhat concerned about it. The two major concerns are bleeding in the brain and in the GI tract. Bleeding in the brain is bad for obvious reasons and bleeding in the GI tract is bad because you can lose a lot of blood in a short amount of time. Platelet transfusions are not very effective because the transfused platelets only last for a few days in your system. Unfortunately in Mia's case they don't make much difference at all because her spleen traps most of them. We ended up doing a platelet transfusion to see if it might help at all. That appointment was about 7 hours.
On Tuesday afternoon I took Andrew, Heidi, and Jessica to have their blood drawn to see if they could be matches for Mia should she be able to have a bone marrow transplant. Andrew and Heidi were both a little squeamish about it, but Jessica sat and watched the whole thing and thought it was great!. On our way home the lab called to say that the blood may have been mislabeled and to be on the safe side they wanted to redraw everyone. Fun for them:)
On Wednesday Mia and I were once again at the clinic. This time we were able to start her new cancer therapy since the insurance issue was cleared up. Pretty easy infusion. We were only there for about 7 hours. We also checked her counts and her platelets were only at a 4. The platelet transfusion did not have any long term benefit. The doctors want to stay away from transfusions because she may be getting a transplant and the more transfusions she has can increase the number of antigens in her blood and make the transplant harder.
On Thursday we were back at the clinic to get an IVIG infusion. This was supposed to be a relatively short appointment, only 4-5 hours. (When did I start to consider a 4-5 hour appointment short?) The IVIG went well but Mia started complaining that her groin hurt and then she threw up. So a CBC was done and her hemoglobin was low, 7, so we decided she need a red blood cell transfusion. What was supposed to be a short appointment turned into ten hours. Because I thought it would be quick I took Jessica with me. It is very hard for an active 5 year old to cooped up like that for 10 hours but she did pretty good with only a few minor temper tantrums.
So it was a long week. Next week we have to see the doctor on Monday and then do treatment again on Wednesday. They are watching her potassium and magnesium levels very closely as the new medicine can cause unsafe drops. She was low when she started so she is also on potassium. Because of her constant nausea she is also on zofran. She has not eaten well the last couple of days and I think she may have lost a little weight. She is also not drinking and will probably need some IV fluids to get her hydrated. I can lonly get her to drink so much.
Subscribe to:
Posts (Atom)