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
3rd post, the LFTs started rising at a much higher rate. Carla also
began to fatigue much easier. On December 28th 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 1st 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
