Our sweetheart has passed...

Our lives are once again changed forever.  On February 20, 2013, my sweetheart , my children’s mother, Carla, passed away from liver failure. This was brought on by graft versus host disease. Just as her donor white cells started doing their full-time of job of providing Carla with an immune system, they also saw her liver cells as a foreign object and began attacking the liver.

As anyone might image, there is no way I can appropriately convey the feelings that me, our children, her parents, her brother, my family, friends are feeling at the loss of our dear woman. Our nieces Monica and Marisa are spending the night tonight, and Marisa wrote us a letter titled “My Hero My Aunt Carla”. She has summed up many of our feelings and included many happy things about Carla and the good times we had together. Thank you Marisa, I love you.

Much time has passed from the last post, so let me try to fill in the details. The last post indicated her blood numbers were doing well with some concerns about elevated liver function tests (LFTs). Since that December 3^rd post, the LFTs started rising at a much higher rate. Carla also began to fatigue much easier. On December 28^th Friday morning,  we went in for a clinic visit and also to see the liver specialist. Her LFT’s were high enough to warrant a liver biopsy to determine what is actually happening. Since it was the holiday time of the year, the only way to get an unscheduled biopsy done was to admit her to the hospital. The biopsy done on Saturday showed that it was graft versus host disease, and immediately started Carla on high dose steroids and boost her immune suppression drugs back to a therapeutic (treatment) level. In less than 12 hours there was improvement in the LFTS, and she actually went home Sunday to recover.

Over the next 3 weeks (in January), the LFT’s improved very quickly but then held flat at an elevated level, but seemingly manageable.  The liver is the only organ that can regenerate and heal itself if not under attack and given the opportunity to heal.

Things seemed to be going well enough that I took the girls and our nieces, Monica and Marisa, to Vegas  over Martin Luther King weekend for Callie to compete in gymnastics. Callie took 1^st Place All around for Level 4. We were so proud! Carla stayed home with her brother staying overnight, and her mom and my mom checking in during the days.

Early February, the LFT’s continued to stay at that elevated level, and then one of the levels started to rise, bilirubin. If too high, this can make you jaundiced (yellowing of skin and eyes).  Carla started to get a little jaundiced, but the other levels were not rising and she seemed to be doing well, and was still on high dose steroids and immune suppression. Little did we know that something bad was brewing.

Since the gymnastic trip for Callie went so well, we followed the same formula for McCall’s soccer trip to Vegas having her brother stay and our parents check in during the day. Before we left that Friday morning, I gave Carla extra hugs and kisses, telling her I didn’t want to go and that I felt guilty leaving her behind once again. She told me in a happy go lucky voice “go, have fun with the girls, I’ll be fine, my mom’s here, your mom’s here, go have a good time”.

Early Monday morning I received a call from her brave brother that she had become unresponsive. I drove home with Callie that morning, leaving McCall to play in the finals. Things seemed to be stable at that time. Events from that point on are too hard to write about. Her liver was not filtering out the toxins which ultimately lead to her passing that late Wednesday afternoon.

Writing this timeline has been really difficult without filling it with my emotions. I hope that it helps people understand what has transpired over the past few months. We were always hoping to have some positive blockbuster news to post and the amount energy expended to keep our family moving forward consumed us that we never found the extra time to post.

Least to say, I cry every day.  Her spirit lifts me and brings a smile to my face when I talk about her with the kids and others. She will always be with us. 

Done for now, more to come.

Jeff

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.
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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!