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.

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.

Thursday, May 9, 2013

Option number 3

Mia is finally starting to feel better.  She hasn't had a fever in a couple of days.  The infection on her finger is beginning to look better although the one on her back is not.  It is not any worse.  On Tuesday she had a CT scan and she was supposed to get her PET scan done yesterday.  Because the equipment is in Meridian She had to be transported there in an ambulance.  When we were almost there a call came in and we were told they couldn't do her scan because she has C-diff.   When we got back to the hospital everyone was in an uproar.  It didn't make any sense.  Turns out that because the scanner is in a new facility with new management there was some protocols to work out and we were the first.  C-diff is very contagious and so they needed to work out how to give the scan and clean up after and everything.  So the scan was rescheduled for today.  I have been apologized to by the transport company, the doctors, the nurses, and the staff from the new facility!  Thankfully things like this don't particularly bother me. I understand that sometimes bugs have to be ironed out of new systems.

Even though we don't have the results from the PET scan today, I did sit down with the doctor to discuss the results of the CT and bone marrow biopsy and the next step in her treatment.  Her CT scan does show that the lymph nodes in her neck, chest, and abdomen are more enlarged than they were previously.  Her bone marrow showed very little improvement in her bone marrow.  We discussed the four different reasons that could account for her counts remaining so low.  He said that sometimes it is a combination of all four problems.  He has done quite a lot of research and feels that our next best option is a non chemotherapy drug called, romidepsin.  It does not have as many side effects as some but it can cause heart problems so we have to wait for an opinion/okay from her cardiologist.

We are going ahead with testing Andrew, Heidi, and Jessica to see if they will be a match for Mia should she be able to receive a bone marrow transplant.  They don't want to test Allan.  Not sure why but it might be that if the syndrome, Cri-du-chat predisposes them to getting lymphoma then maybe it would be better if she didn't receive his cells.

So we are done with two options and moving on to the third.

Monday, May 6, 2013

Nothing is Easy

I always have to go back and read my last post so that I know where to start.

Mia had her first round of her new medication, bendumustine, a little over four weeks ago.  About ten days later she went into the hospital with a fever and spent a three days.  A week ago we went in to have her counts checked and hopefully start her second round, but her counts were too low.  This past Thursday we went in again and still her counts were very low.  If the bendumustine was working there should have been some sort of response.  Because there wasn't the doctor ordered another round of diagnostic tests done.  She had another bone marrow biopsy and lumbar puncture on Friday.  Today we went in so that she could get a red blood cell transfusion.  Her platelets this morning were at 5 and her hemoglobin was at 6.  She received two units of blood.  While we were there she developed a fever and was admitted to the hospital.  She has a couple of scratches that are inflamed.  She also has two ear infections.

The answers from the testing will help us determine the next step in her treatment.  If there is some evidence that the bendumustine is working then we will proceed with another course of it.  However that seems unlikely.  There are two more options to try.  I can't remember which drugs they are.  Our doctor let us know that once we have tried the next two options there is not much more that can be done.  I think there are some more drugs that could be tried but it would be up to us as to whether we want to try them.

Things are tense around our house right now.  Casey and I are both so worried. I find myself in tears at the oddest moments. There is such a roller coaster of emotions.    I will try to keep you updated as things go along.  Mia does not feel well right now.  But she still talks and smiles at everyone around her.