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.

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.


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.


Pictures of Jessica one day while at the clinic.  She loves Miss Jenn, the child life specialist.  She loves to play with her.