I have been chosen!

Clinic was great on Friday. Not only are my numbers up and at “normal” ranges (liver still giving me some issues-took 275ml of blood) I also got to meet another BMT patient that wanted some advice. Her name is Dawn who had a transplant in June that failed and now she is looking for suggestions. I think I put her to ease with her doing a mini-transplant (if they can find a donor). I have made another new friend. (I love that!!)

I was also approached by my case worker and picked by the clinic to participate for the “Center for International Blood and Marrow Transplant Research” (BMT Conference Survivorship panel.) It will be held here in SLC in February 13-17. (Only 2 people were chosen from all the hospitals around the state). I’ll possibly be answering questions from nurses and a doctor around the United States about what is was like to be a transplant patient, how I was treated, what could be improved etc. I feel very honored….and yes….a little nervous! GULP!

Homestead

For Mother’s day Jeff gave me a night at the Homestead.  I was in early stages of my second transplant so we it put it off until I was up for it.  SURPRISE!  This last weekend he took me, McCall, Callie, and some of their friends (Rachel, Chloe, Sophia) up to Homestead. We stayed in a really nice 2 bedroom suite (which sleeps 8).  The girls ran around for a while and then we took them over to the Heated Crater. (You might have seen it on the ”Bachelorette Show” this past season). It is a large crater naturally heated you can swim in all year.   It is REALLY steamy this time of year so I could not get photos, but the girls LOVED it.  The water is around 89-99 degrees depending on the time of year.  Scuba divers can scuba the bottom as well as yoga classes in the morning.   The girls and Jeff swam for about an hour as I watched.  Oh how bad I wanted to be a part of that.

We warmed the girls up and headed to the hotel restaurant for dinner, hot chocolate and laughs.  Back at the room they showers, ran around, watched football and giggled.  I was asleep early but they all stayed up late.  The next morning we were out by checkout and into Heber City for breakfast.

We came home and were amazed by all the snow.  We counted about 20 inches (more than Heber had) and the kids loved playing in it.   It was so nice to get out of town just for the night.  It is the little things like this that make life fun!! 

The Heated Crater

 McCall and Bindi in the snow.

 Bindi LOVES the snow. 

 Look how much we got?

 McCall and Sophia playing in it.

 My sweet SIL Janine.

HALLOWEEN 2012

 

HAPPY HALLOWEEN

I helped Callie's class with fun activities this year.  I set up the donut grab.  Jeff (and another mom) took the kids downstairs to a "haunted basement" experience.  Another mom let them wrap each other as mummies with toilet paper.  We did try and get some healthy food into them before the day was through.  I missed the party 2 years in a row and getting back into it was fun.  Too bad this is my last year in elementary school.  Kids were dressed up cute but back into uniforms for the party.

 I had to make the "brain" for the class. Yes!!  You can eat it....and some of the kids did

...but it isn't very good.

 Kicking legs!!

 All BYU fans look like this ...right? 

He scared more people than anything else. Ironic huh?

THING 1 and THING 2 got enough candy to feed a small village'

It was easy and fun making the costumes. 

We had a TON of kids this year.  I am sure it was the 70 degrees outside.  I only had 4 kids cry and not want to come to the front door.  It makes me feel bad...but laugh at the same time.
_______________________________________________ 

Clinic was OK today.  Only had to give blood and could leave.  Already looked up my numbers online and they are holding good.  My platelets are still coming down which is weird and probably medicine related.  Liver is MUCH happier and almost normal numbers.   Waiting to hear about the immune numbers. (They usually take the whole day to get results) but I feel good and no bone pain today!  (Claritan is awesome.)

PUMPKIN CARVING PARTY

I haven't done much for Halloween since I have been sick so I decided to do a PUMPKIN CARVING PARTY with Callie and a few of her friends since I am feeling better.  We carved pumpkins, ate pizza, played outside, painted nails (Cole is such a trooper) and ate “pumpkin” cupcakes.  I gave out awards for the most unique and creative pumpkins (everyone got something) and fun BIOHAZARD gift bags.  It was a lot of work but a lot of fun. 

Numbers are still good. Last week we took 300ml of blood and liver is much happier.  This week I am sure will take more until the numbers are where they need to be.  Went to the dermatologist today and had moles removed that have been bothering me.  You’d think I’d be used to needles…OUCH…not so much.  Life is good and I am happy!

LIVER LIVER LIVER

This is week has been all about my liver, what it does, why we need it and how the numbers affect my health.  After seeing Dr. Nielson and he also being concerned about my high levels he wanted to ultrasound the liver to see if all the right blood flow was going into it. (Basically check if all the vessels were working and bringing blood to the liver.) I got a call at 10:30 am that they wanted me that afternoon but no appointments until 4:30pm.  Oh, did I mention no eating or drinking the whole day. AUGH.  By the time I got registered, did the ultrasound and finished it was 6:00pm.  I was dizzy, hungry and tired. The technician was impressed with my liver and said all looked good to her.   We got me something to eat and headed to McCall’s soccer game. Half way through the game I start to get dizzy.  I think the lack of food, heat and long day put me over the edge.  Jeff got me to the car with some small “black outs”…but nothing serious.  Home right to bed….felt much better the next day.

The following day the doctors wanted an MRI of the liver.  I was luckily able to eat. HA!  This checks the amount of iron in your liver and how it looks in 3D.  Got registered again and in through the “donut” machine (as I like to call it).  I am not claustrophobic so this does not bother me.  Takes about 30 minutes of loud noises on a cold bed.  No big deal. 

 A call later from the doctor that the liver looked good but now they needed a full liver biopsy.  (I hate that word ….biopsy…yuck).  No eating or drinking for this either but my appointment was at 7:30am the next day.

More registering and paper work.  I met with the RN got my needles put in and they hooked me up like a car.  I had a zillions wires hooked up to me to keep checks on all my vitals.  Once in the operation room I got the “good drugs”. These don’t really knock you out…but make you super sleepy and feel wonderful. HA!  They put a small needle through the right side of my neck down the main artery and took a few samples of the liver.  I went back to recovery with a large bandage on my neck.  Finally was free to go home and just took it easy for the day.

With all these tests done the same results are back.  The liver is GVH free (from the donor).  I don’t have any hepatitis C or liver damage.  I just have TOO much iron.  We’ve taken me off some medications and today's number have come down almost 200 points.  We have also decided to take blood from me each week.  Today the RN took 250ml.  Next Friday we’ll recheck the numbers and if my red-blood cells are holding we’ll take 500ml and continue each week until numbers are normal.  Funny how I used to get blood….now I am giving it back. (Even though mine gets thrown out.)

 Another gymnastics meet last week and Callie did great.  

She took 3 place overall!!

McCall-Anna-Rachel-Lester

(all my daughters)

Love you guys!