Well we are finally going to Salt Lake City. Jessica, Mia, and I spent three days in Salt Lake last week for appointments. I signed all the consents and we are ready to get this transplant going.
The three of us are leaving tomorrow afternoon to return to Salt Lake. Mia starts her preparatory regimen of reduced intensity chemotherapy on Tuesday. She will receive six days of treatment and then have a day off and then receive her transplant of stem cells from Jessica. Jessica will get a shot for four days before her collection day, which is Monday Aug 19th. Mia's actual transplant day will be either Monday or Tuesday the 19th or 20th.
Mia has been feeling so much better these last few weeks since she had her spleen removed. Her counts have been better. We have been able to take her to church and she has loved being with her friends.
As a family we are as ready as we can be. 107 days is not really all that long and as long as things go well I will hopefully be home in time for Thanksgiving. We are ready for this transplant to be over and be successful.
Sunday, August 11, 2013
Thursday, July 18, 2013
Postponed
Mia's splenectomy was scheduled for Friday July 19th. We met with the surgeon yesterday and she explained how they do the surgery. They make 4 small incisions, the largest being about an inch and a half. then they detach all the small blood vessels and the one large blood vein. the large one the staple shut and is the only real issue. If they don't get it just right then it can bleed and they will have to make a larger incision in order to stop the bleeding. But once the spleen is disconnected from everything, they put a bag in Mia and carefully maneuver the spleen into it. Then they break up the spleen into little pieces inside the bag and pull it all out through the largest incision. The surgery should take 2-3 hours and Mia should only have to stay in the hospital 2-3 days. Because of her low red and white blood cell counts the surgeon wanted her to get more blood today and she will have platelets running into her during the surgery.
So today we were at the clinic for 8 hours receiving red blood cells.
Mia has had a lot of diarrhea for the last couple of weeks. The docs wanted a sample to test her for C-diff. Today they got their sample and the test was done and she is positive for C-diff. Unfortunately once the surgeon heard she immediately said we had to postpone surgery until Mia was all better. Phone calls were made and the immunologist didn't feel like we needed to wait for a full 10 day course of antibiotics to treat the c-diff. In the end, the decision was made to put off her surgery until the antibiotics start helping her, probably a couple or three days. Monday I will let them know how Mia is doing and hopefully the surgery will happen on Monday or Tuesday.
Let's just say I was a little frustrated this afternoon. But I can only trust that the Lord knows what he is doing, because I sure don't!
So today we were at the clinic for 8 hours receiving red blood cells.
Mia has had a lot of diarrhea for the last couple of weeks. The docs wanted a sample to test her for C-diff. Today they got their sample and the test was done and she is positive for C-diff. Unfortunately once the surgeon heard she immediately said we had to postpone surgery until Mia was all better. Phone calls were made and the immunologist didn't feel like we needed to wait for a full 10 day course of antibiotics to treat the c-diff. In the end, the decision was made to put off her surgery until the antibiotics start helping her, probably a couple or three days. Monday I will let them know how Mia is doing and hopefully the surgery will happen on Monday or Tuesday.
Let's just say I was a little frustrated this afternoon. But I can only trust that the Lord knows what he is doing, because I sure don't!
Saturday, July 13, 2013
No Transplant Yet
During the week of the fourth, Mia had a bone marrow biopsy and PET and CT scans to see how the cancer was responding. We met with Dr Camilo her oncologist to review the results on Mon the 8th. Her Marrow and scans are all clear! This is good news and means the transplant is definitely on. So then we were waiting for word from the transplant team from Primary Childrens' to let us know when to come down. I expected to going down last week for physicals, blood work and any other preliminary tests to be done on both Jessica and Mia. But there was an issue that I wasn't aware of. Finally on Friday I got the word.
Mia's spleen is still larger than it should be. Apparently there is some concern that it is sequestering white blood cells and platelets making it very hard for the doctors to trust the blood counts that we get with regular testing. One of the doctors in Salt Lake checked with another lymphoma "expert" and the suggestion was made that she should have her spleen taken out before transplant. Of course there are pros and cons with removing her spleen. They will try to do the surgery laparascopically, however that may be difficult because of the size of her spleen and also because of her extremely low platelet count. This is a fairly serious surgery at the best of times and Mia's body is already not in very good condition. We should be doing the surgery this Thursday or Friday. Then there will be a week or two at least of recovery time.
Because her cancer is so aggressive, and there will have been more than a month since her last chemotherapy treatment, there is a possibility that she will need another round before transplant. So we are back to the waiting game as far as transplant goes. We won't be going down to Salt Lake before the first week of August.
Because we thought we were leaving next week, we scheduled a little open house at our house on Sunday between 4 and six. Mia misses her friends and would like to see people. So come by if you like. Please don't bring gifts or sick germs.
Mia's spleen is still larger than it should be. Apparently there is some concern that it is sequestering white blood cells and platelets making it very hard for the doctors to trust the blood counts that we get with regular testing. One of the doctors in Salt Lake checked with another lymphoma "expert" and the suggestion was made that she should have her spleen taken out before transplant. Of course there are pros and cons with removing her spleen. They will try to do the surgery laparascopically, however that may be difficult because of the size of her spleen and also because of her extremely low platelet count. This is a fairly serious surgery at the best of times and Mia's body is already not in very good condition. We should be doing the surgery this Thursday or Friday. Then there will be a week or two at least of recovery time.
Because her cancer is so aggressive, and there will have been more than a month since her last chemotherapy treatment, there is a possibility that she will need another round before transplant. So we are back to the waiting game as far as transplant goes. We won't be going down to Salt Lake before the first week of August.
Because we thought we were leaving next week, we scheduled a little open house at our house on Sunday between 4 and six. Mia misses her friends and would like to see people. So come by if you like. Please don't bring gifts or sick germs.
Wednesday, June 19, 2013
Just an Update
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.
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.
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
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