Day +35

Well we finally got of the hospital on Wednesday the 18th. Mia spent a total of 32 days in the hospital.  Today marks the beginning of our seventh week here in Salt Lake City.  We have 65 more days to spend here unless we can talk the doctors into letting us go home home early or we run into problems.  So far Mia seems to be doing very well.  She hasn't had any graph versus host.  She did have a flat rash covering her whole body but it didn't bother her at all.  The doctors weren't sure what it was and it has gone away now.  She was also retaining quite a lot of fluid but the swelling has finally gone down. She does have thrush in her mouth now.  She is on oxygen and a feeding tube.  She has 10 medications as well as IV fluids.  She tires very easily.  We are trying to walk as much as we can to help clear up her lungs and to increase her stamina.

Mia loves her One Direction headphones and the notes that her Young Womens sent her.  She really loves to hear from those back home!

Happy Mia from a few days ago.  We finally got out of the hospital on Friday the 13th.  We had a lovely 24 hours out but she got a fever so it was back to the hospital we went on Saturday!    She is kind of bummed to be back in.  As long as she stays fever clear for 48 hours and nothing grows from the blood cultures in the same amount of time, then we will be able to leave again.

Almost Out

So we thought we were getting out of the hospital last Friday, but Mia got a fever on Thursday night.  A chest x-ray on Friday showed what could be some pneumonia in her left lung.  So Mia was started on an antibiotic.  She is feeling pretty good and is eager to leave the hospital.  She hasn't had any real obvious symptoms of graph versus host so that is good. Not much else to report.

Sep 3 2013

Well Mia is doing very well!  She engrafted on Monday, which was quite a bit faster than expected.  This means that we should be able to leave the hospital by the end of the week.  She has to be off all the IV meds.  She has been getting a lot of fluid with all the IV meds and such.  And she has been retaining it quite a bit.

 

 Here she is just the day before her hair finally started to come out.  We thought maybe she wouldn't lose it because it took so long to finally come out.

 We are wondering if her hair will come back different this time!

 

 Over the Labor Day weekend Casey brought the kids up to visit.  It was very nice and we had a good time.  Allan and Andrew enjoyed hanging out and playing the Xbox 360.  The girls like playing with the Kindle.  Currently there are no working computers at home and they all are missing their screen time.

 

 Once Mia's hair started coming out it came out fast!  She has just a little ring around the front that doesn't seem to want to come out.  You can see that her face is a little puffy from all the fluid retention.

Update

We are a week out from Mia's transplant.  She is doing just as expected.  In other words, she is miserable:(  Her counts have dropped.  She has not needed any transfusions of red blood cells or platelets yet but probably will need some in the next day or two.  She is on 24 hour nausea medicine, but even still she says her tummy hurts all the time.  Her mouth is bleeding and she has some mucusitis.  She has been unable to eat for several days so she is on TPN, which is IV nutrition.  She likes to sit up in the chair and watch the construtcion of the new lobby.  I have not seen a smile in several days.  She just watches me with big eyes.  She hasn't lost any hair.

Jessica's Harvest and Mia's Transplant

We have had a couple of big days these last two days!  Yesterday we started at 7:30 am.  Jessica got her fifth and final neupogen shot.  Not a peep out of her!  Then she had an IV placed.  She was a little nervous about it but did great.

 

Here are Jessica and Mia on the morning of Jessica's Harvest.

 

Daddy and Jessica waiting to go back to have her pheresis catheter placed. 

 Vitals AGAIN!!!

They put the line in with sedation and an ulstrasound.  This is the Utah Jazz room. 

She got a little teary eyed when it was time for mom and dad to leave the room. 

In recovery.  She decided that daddy and mommy made good maids becasue we held her popsicle and her juice. 

 

On our way up to the fourth floor for the collection.  The nurses upstairs were all upset that we came up on our own.  Apparently she should have been brought up in a gurney because she is not supposed to bend her leg more than 90 degrees. There was a report made to make sure it never happens again!

At the end of a long day.  The collection was finally started about noon.  Six hours later they were done but we had to wait to make sure that enough cells were collected. 

WE got the call that 8.1 million cells were collected.  It was enough.  By the time Jessica was all unhooked and able to go home it was 10:30 pm.  Jessica was absolutely amazing.  WE will forever be grateful for her. 

Today was transplant day. 

Mia and her nurse Janet 

Singing "Happy BMT Day" 

The best thing about a birthday is presents! Both Mia and Jessica got presents.

 

Starting to get tired.

 

Here are the nurse and the collection tech checking all the numbers to be sure that theyhad the right cells.

Casey and Jessica left a little later.  Now the real fun begins as we wait to see when Mia will engraph and just how sick she gets.

Days -6, -5, and -4

We are started!.  Mia has handled this chemo very well.  She has to be at the clinic for about two hours, of which only 30 minutes is actual chemo.  The rest of the time is spent waiting.  We have been playing in the afternoons.

 Tuesday afternoon we had a picnic lunch at Liberty park.  The girls both played a whole bunch.  Then we went to City Creek mall and walked around and looked at things.  We were very surprised when we ran into Laura's girls, Caiya and Cassie.  They are in Slat Lake with their other grandparents.  It was so much fun to seen them.

Wednesday after lunch we went to Hogle Zoo.  It was very hot and Mia does NOT like walking around in the heat.  Of course we couldn't keep up with Jessica.  She has so much energy.  The we drove out to Great Grandma Jackman's for a visit.   It is always fun to visit with her.  She is amazing and I am so glad that we will be getting to see more of her in the next few months.  Afterwards we went shopping at the quilted bear.  That place is crazy.  We had been looking specifically for something super special to reward Jessica for good behavior while she has her shots.  We found it there.  She got four Disney princess magnetic paper dolls with their own tins.  Each day after her shot she gets another one.  Today she was a little worried about getting the shot but afterwards she declared that she loves shots!  I sure hope her enthusiasm lasts!

Today we are back with Grandma Jackman for a bit.  We took her shopping for a few things.

Again I have no pictures to share because I can't figure out why my phone is not auto syncing with my account.  I imagine I will stumble across the answer eventually.