One Month Later!

So we got to return home on Nov 25th.  It has been so nice to be home!  We had a very nice Thanksgiving.  The whole week of Thanksgiving felt like such a nice holiday.  On the following Monday we had a cardiology appointment which was just a quick follow up.  The next day we had an appointment with our oncology doctor and we had fun seeing all of the great nurses at the clinic.  But at that point there was some concern about Mia's potassium and sodium levels.  So we were back the next day for three and a half hours.  The doctor was concerned enough about her levels that he arranged for us to see the pediatric nephrologist the next day.  Boise does not have a pediatric nephrologist so one comes from Portland once a month.  He just happened to be coming the next day.  The visit with him was uncomplicated and quick.  He was fine with what was being done and just wanted to follow up with her in a month.

Then a couple of days ago, I noticed Mia's belly seemed very bloated.  She had also been sleeping a lot.  So I took her in.

She had pneumonia and the doctor admitted her.  Apparently there is nothing wrong with her abdomen other than that she is retaining fluid.  So Mia was dehydrated when we brought her in.  I think she had been getting slowly worse for a while.  She is most likely retaining fluid because her kidneys are not working to full capacity.  So they are not ridding her body of the extra fluid.  This is something caused by her medication, cyclosporine, and exacerbated by her dehydration.  Hopefully added medications will help her kidneys continue to function until she is able to go off the cyclosporine in about four months.  St which time her kidneys should recover most of their function on their own over time.  However she may have some permanent kidney damage.

So I just got a call from her cardiologist.  She had an echo this morning and it looks like the function is very decreased.  So they are going to start her on an IV drug to help restore the function.  The drug can only be administered in ICU.  So they will be moving her shortly and we won't be headed home tomorrow like I thought.  Don't know yet how long they will want to keep her.  This feels a little like deja vu since ICU is where we were at the same time last year.

Post Transplant Day 84

Things were going pretty well.  But last week at her appointment on Wednesday, we found out her potassium was really high.  According to the Nurse Practitioner it was "scary" high.  The doctor said they were in a "minor" panic!  High potassium can lead to heart arrythmia which can potentially be fatal.  Not something to be taken lightly!  In the end she was admitted to the ICU.  She received several meds, one to protect her heart, one to help her pee off the potassium and a couple others to protect her kidneys.  She also received several 1000 ml bolus' of fluid to help flush the potassium out.  She only spent 8 hours in ICU and then was moved up to the Immune Compromised Floor where we usually are.  Her potassium came down to an acceptable level.  In the meantime, it was decided that her heart medications along with her cyclosporine were the most likely cause of the high potassium.  She got to exchange 4 of her drugs for one.  I like that!  The one can cause low blood pressure so we have to watch for that.  She was released from the hospital on Friday.

We had our regular appointment yesterday.  Everything is still okay.  Her potassium is still higher than normal but is okay as far as the doctors are concerned.  Her blood pressure is high, but the BMT doctors like it.  The cardiologists do not.  They would prefer it was lower since she has heart issues.  We are getting all of her tests scheduled next week so we can go home!  She has a Bone Marrow Biopsy on Tuesday and a PET Scan on Wednesday!

On Saturday we went to Temple Square.  It was another beautiful fall day.

 Mia liked the Christus the best

Post Transplant Day 75

The last time I posted Mia had been admitted to the hospital because she wasn't doing very well.  She went in on a Monday and was released on Thursday.  Unfortunately she went back into the hospital the very next day.  She got out on the next Monday.  By then she was really feeling a lot better. Even smiling her beautiful smile for us.  Since then she has been doing great! She is off oxygen during the day and on only 1/2 a liter at night.  We have cut  back on her tube feedings, so she is only getting them over night.  This allows her to feel hungry during the day and eat.  She is off of her IV meds except for her nightly fluids. She has not had any problem with nausea and her diarrhea is gone!

Last weekend Casey bought the kids to visit.  We had a great time!  On Saturday we took them to This Is The Place Pioneer Village.  They had trick or treating for the kids and a story and a costume parade. Because Mia tires so easily we borrowed a wheel chair  from the Ronald McDonald House and Andrew pushed her. 

Friday before everyone got here the Ronald McDonald House was celebrating its 25th birthday.  They had food and cookies and I got to take a tour of the new facility they are building.  It should be open in January and then they will close down the current house and completely remodel it.  Ronald McDonald helped Mia decorate her cookie.

On Monday, Mia and I went to a place called Gardner Village.  It has all these little shops and they were all decorated for Halloween with lots of witches.  We had a cup of hot chocolate.

Mia doesn't have her tube in because she threw it up the night before and we tried a day without it in to see how she would do.

Yesterday was another beautiful fall day.  We were tired of being cooped up so we took a drive out the the Salt Lake Marina

 On our way back into Salt Lake we went through Magna again and found the house we lived in 32 years ago.  It is a duplex and we lived on the left.

We only have three weeks left and we are so excited to go home.  

Post Transplant Day 55

Mia was admitted to the hospital today.  She is retaining fluid (her weight was up 10 pounds since last monday), her blood pressure was up, 130/90, her breathing is fast and her liver function was up.  However her kidney function was fine so they think it is an infection of some sort. Her bilirubin is also up. She also needed more red blood cells today.  She has a rash that could be graph versus host.  All in all she is not feeling to hot:(  Hopefully a cuople of days in the hospital will have her feeling better.

Day +50

    Today is day 50!  We are  halfway there.  We are in our 10th week here and we have 7 weeks to go.   Mia had a harder week.  She slept a lot so when we went in for our appointment on Monday it was no surprise that she needed red blood cells.  She got two units.  She is also back on oxygen 24/7.  Her nausea has really been bothering her.  Sometimes she actually throws up but mostly she just retches for five minutes.  We had a visit from Aunt Linda and Uncle Steve on Monday.  It was very nice. On Sunday we went to Great Grandma Jackman's and watched the second session of conference.  There is not much else to say.  Our lives are boring and that is a good thing.  Can't wait until we get to go home.  I would love to go home early but I am pretty sure there will be no convincing the doctors that we should.

Mia's toes sporting BSU colors!!

Day + 43

So Mia is doing better.  She is off of oxygen during the day and only on 3/4 of a liter at night. One of her IV meds has been cut down from twice a day to only once a day.  Her platelets are coming up and her other counts are doing well.  We also are unhooking her from her feeds for four hours a day to give her a chance to be free!  Also we hope she will start feeling hungry and want to eat.  She still has a bunch of meds she is on and sometimes it is hard for her to take them all.  W still get out each day.  Our favorite place to go is Liberty Park.  We sit and watch the people.  Mia loves to watch kids playing.  

On Monday she wanted to swing and they have these fabulous swings for handicap children.  She enjoyed that. 

 I have been getting lots of sewing done.  Most of it is for Christmas so there won't be any pictures, but these are the girls' Halloween costumes.  

 Jessica is Belle and Heidi is Dorothy.

Some have asked for our address.  Sorry it has taken so long to get on here.We are at the Ronald McDonald House  935 E South Temple SLC, UT 84102

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.

SLC at Last!

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.

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!

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.

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.

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.

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.