Tomorrow!!!

So yesterday Mia and I had the opportunity of attending Primary Childrens Branch for Sacrament.  It was very nice.  As soon as we got back from the meeting we collected our stuff, signed the discharge papers and took ourselves back to the Ronald McDonald house to wait for her counts to reach the magical number.  Today they did!!! So we are scheduled for collection tomorrow!!  This can be done in one day but sometimes requires a second day.  If so Mia will stay overnight in the hospital.  Either way we should be headed for home sometime on Wednesday.  We are very excited!

This morning after we left the clinic we began a hunt to find the grave of Vincent Shurtleff, my Great-great-grandfather.  According to the internet he was buried in the Salt Lake City Cemetery.  The cemetery is only a few blocks from the Ronald McDonald house.  At the office there we discovered that he was never buried at SLC cemetery but was actually at Mount Olivet cemetery also in SLC.  It is only about a mile from SLC cemetery so off we went.  We got the grave location from the office and started our search.  It took a bit because I didn't know if there would be a grave marker.  But there was!  We found the grave.

Vincent, Mary, and Lyman F are all on the same marker.



Ellen wife of H.C. Shurtleff was on another marker by herself.

Good Day!!

Today was a good day!  Mia's red blood cell count stayed up!  So no blood today.  She hasn't had a fever since Early Friday morning.  Last night  as I left I was worried about her tube feeding because it seemed to be making her nauseous. But she did fine and was able to take it all night.  She has been maintaining her weight and I am so glad.  Mia is so good about smiling all the time that I don't realize how sick she really is until she starts to feel better.  Today she was Miss Giggles all day long.  One of the techs told me as I was leaving tonight that every time she passed Mia's door Mia would smile and wave at her.  She said it was so nice to see and that it wasn't like most of the patients here,  I was missing our hospital in Boise a little because we know many of the nurses and even when we aren't their patient they will often stop in just to say hi.  But we are starting to get to know the nurses here also.

On a sad note our dog Bo was hit by a car today and died.  Apparently he and Chewy got out of the yard by knocking one of the gates open somehow.  Casey and Andrew saw them right away as they were in the front yard working on the Bronco and went right after them.  Chewy started to come to Casey as he called him, but for some reason he darted out onto Five Mile and Bo went after him  The lady that hit him didn't have time to react.  They got him back to the house and Casey and Sat with him until he passed away.  It hit us all pretty hard.  We have had him for only about 7 years.  And he has been a huge pain in the butt but he was a good dog.

Back to the hospital

Yesterday Mia and I went to clinic at Primary Children's for a check on her blood counts. Mia was running a fever ans so was admitted to the hospital. She received two more units of blood. This morning her hemoglobin was at 1.9 so she is getting two more units today. Her platelets were at 13 so she got platelets this morning. She is on a couple of broad spectrum antibiotics while we wait for the blood cultures to come back. Good news though, her chest X-ray came back clear so she doesn't have pneumonia, yet. There are also some tests checking to see if or why Mia's red blood cells are breaking down. Apparently there can be some break down when red blood cells are given because antibodies in the patient and the donor blood may not match up perfectly. Also she may not be making any red blood cells at the moment as a side affect of the chemo. So we are back to waiting for tests for answers.

Here is the view from our window.

A little hospital time

We had an appointment at the clinic to check Mia's numbers. Her hemoglobin was only 5.9 so she had to have a blood transfusion. Because it was so late in the day we were sent to the hospital for the transfusion. What would normally take about 4 hours in the clinic will take twice as much time in the hospital. That is hospital time for you!

Mia had round three of her chemotherapy this week.  We started on Monday and continued on Tuesday and Wednesday.  Since this was round three we got the schedule for her stem cell harvest.  We have to be in Salt Lake on Wednesday the 22nd.  We have an appointment every morning until her numbers are right, at which point she will be admitted to the hospital for the collection.  This will be done through two catheters on each side that will remove her blood, take out the stem cells and then return it to her body.  Depending on how fast they get the 5 million stem cells they want we may not have to actually stay overnight.  Originally they told us we would be in Salt Lake for no more than a week.  But now we have been told to plan on ten to fourteen days.

Funny how that can make such a difference.  One week is easy to prepare for.  I can do the laundry before I leave, pay the bills, grocery shop and no one will have to worry about it until I get back. But two weeks means somebody better wash some laundry and someone will have to go to the store and I better make sure the checkbook gets taken care of.  Thank goodness for the internet, because I do most of my bills and banking online anyway.

School starts on the 27th and so I will not be home for the first day of school.  The only one who is really upset about that is Heidi.  She was supposed to meet and greet her teacher on Friday the 24th but since I will be gone I have made arrangements to take her in on Tuesday before I leave.  Heidi is sad that  I won't be able to be her room mother this year.  I have been for the past three years.  I am sorry that I won't be able to volunteer as much as I would like.  But some things just have to go.

Mia started to not feel well last night.  Today she took a long nap.  Her chemo makes her really tired for a few days.  It also makes her side hurt a lot.  I need to check with the doctors about whether I can give her anything for the pain.  I think it must be from her spleen.  When she was a baby sometimes she would get upset in the car.  All I had to do was reach back and touch her, it didn't matter what part of her I could reach and she would calm right now.  She is much the same now.  When she is upset or scared all she wants is mom or dad to sit next to her or hold her hand.  She is very sweet.

A Day with Heidi

When Andrew turned nine Casey took him to Seattle for a Mariners game.  So when Heidi turned nine she was supposed to get a trip with mom, but with everything going on with Mia we hadn't done anything yet.  

So on Monday I took Mia in to have her numbers checked.  Her neutrophils were up to 1100, but her platelets were pretty low 39 and her hemoglobin was also low,7.4.  Her next appointment would be on Thursday to see if she was ready to start chemo again.  On our way home from clinic, Icalled Casey to say that if I was going to take Heidi anywhere this summer it had to be that day.  So on Monday afternoon, I took Heidi to Costco to get Lagoon tickets.  She was very excited.  Together we drove down to Ogden where we stayed with Aunt Jill and Uncle Doug.

Here we are having dinner at Perkins in Burley on the way to Ogden.

We went to Lagoon on Tuesday and spent 10 hours there! Unfortunately I didn't get very many pictures because I didn't carry it with me because I didn't want to lose my phone on a ride.  Heidi had never been on a roller coaster before.  We went on 3 or four including Colossus, which we both rode with our eyes closed.  We spent 3 hours at the water park, where our favorite ride was Outrigger.  WE walked through Pioneer village.  They have an amazing amount of stuff there! 

This is at the Model train museum.

This is in the telephone museum.  We also loved riding Rattlesnake Rapids, even though we got completely drenched.

Here is Heidi enjoying her ice cream.  We had so much fun!  I needed the break and Heidi needed some one on one time with Mom.

So there is not a lot going on with Mia these days.  We went in for lab work on Tuesday and her numbers looked really good.  Then we were back on Thursday for more lab work.  Chemo was doing its job and her numbers had dropped as expected.  So now we are waiting for her white blood cell counts to come back up, specifically her neutrophils.  Neutrophils only last for a day or two.  They are very important for fighting infections.  Her count has to be above 750 to start another round of Chemotherapy.    The labs also watch her Hemoglobin levels and her platelet counts.  The medicine we give her everyday at home, neuprogen, is to help her produce white blood cells faster.

Here is what it takes to give her the neuprogen.  The little syringe with the red cap is the medicine, the rest are flushes.  The nurses wanted to know if I would rather give her the medicine in her existing PICC line or give her a shot everyday.  Obviously I chose the no pain route!

We head back to the clinic tomorrow to check her numbers again.  With the neuprogen we have to check her blood counts more often.

Mia had a hard night last night.  She was in quite a bit of pain from her throat sores.  Also she regularly complains that her side hurts.  We think it is because of her spleen shrinking.  When we started all this her spleen went down into her pelvic area and crossed the middle of her body.   A spleen is normally the size of your fist and sits on your left side under your rib cage and towards the back.  Because hers was so huge they didn't even measure it.   Three weeks after her first round of chemo its length was measured at 14 cm and it barely crossed the midline.   Thursday it was measured at 8 1/2 cm and several centimeters left of the midline.  It has shrunk a lot.

As Mia's neutrophils return her mouth /throat sores will go away.  I think they may be coming back because she seems somewhat improved tonight and has not been complaining about her throat.  

I was working on this dress, Butterick 5030, when I realized I didn't really have my mind on it.  I did this

 while I was serging the skirt seams.  Thankfully I have enough left over fabric to recut the front panel.  But I think it is time to do something else today!