Azure Update January 2009

Well, let's see. I have not been writing here, as I said I would, basically
due to the lack of time/energy involved in doing so.

Let me bring you all up to speed on Azure's condition. She was diagnosed at
the end of June with a tumor in her liver that had already metastasized in
her lungs. Not good. Very, very not good. When the doctor looks at you and
says, "...but we always have hope" it is never good.

She received her first dose of chemo on July 1st. Since then she has been
going back and forth between inpatient chemo, which is a weeklong stay in
the hospital for her and myself, and outpatient chemo where she has to go to
the clinic everyday for a week. Running after an extremely active
2-year-old with an IV pole...not so easy. The good news is, chemo does not
effect toddlers the same way as it does adults, or even older children. She
has not had the nausea one would assume, just periods of being a very picky
eater. She did lose her hair and now has what one mother calls "halo hair"
which is almost invisible unless there is light casting from behind.

She had surgery in October to remove the tumor, the right half of her liver
and her gall-bladder. We were in the PICU for days following just to keep
her on IV pain meds. Remembering the desperation in her eyes when she was
in so much pain and I couldn't do anything to help her makes me ill. I hope
like hell she never feels that kind of pain again the rest of her life. The
pathology from surgery was not as good as we had hoped. They left some
tumor cells behind right at the edge of the resection and there were still
live cancer cells instead of all dead ones. For this reason and because of
the advanced stage of cancer at diagnosis they continued to treat her
aggressively with chemo. They are hitting her with the big guns that they
would have used later in the case of a recurrence. This meant back to the
schedule of alternating weeks in and weeks out of the hospital, usually with
a week or so in between to let her recover.

Along comes the week of Christmas. We learned that our collective Christmas
Wish had come true. Azure is in REMISSION! This means there is no evidence
of cancer either on the CT Scans or in her blood work. This is amazingly
good news and we celebrated the holidays with true joy. We had had enough
of 2008 and were looking forward to ringing in the New Year and good
ridance, etc.

Then she spiked a fever on New Year's Eve. Back to the hospital we went for
blood cultures, antibiotics and IV fluids. She refused to eat or drink and
felt down right crummy. They didn't want to let us go home until she proved
she would drink on her own, but she found the one and only thing she could
control herself is what goes in her mouth. She refused to drink. After two
days of turning down the IV fluids hoping to make her thirsty they made us
promise to push fluids and call if we thought she was getting dehydrated and
let us go home. She is feeling better now but lashing out at us in
frustration and anger in a way only a 2-year-old can do. She throws
tantrums with kicking, screaming, hitting, biting, etc.

It has not been easy. The past 6 months have been harder on us than the
3-1/2 months she was in the NICU. T switched jobs twice over the summer and
did not have vacation time available and we have health insurance through my
job which meant that I had to keep up 40-hour work weeks. Thank goodness for
my mother who provided both free daycare and took her to clinic appointments
and sat with her in the hospital when T and I both had to work. We are worn
out! People keep asking if we have thought about having another child yet.
Ha ha ha ha ha! (I actually have an appointment to speak with a surgeon
about either having my tubes tied or removing all but one ovary. IF we add
to our family it will be through adoption.)

Anyway, there is a light at the end of the tunnel. She has once again
proven herself a survivor. She lived through cancer, now we just need to
get her through the remainder of her chemo treatments without any infections
and we can move on to cancer prevention and follow up checks...for the rest
of her life.

Thank you all for checking in on us. The positive vibes are still working,
our girl is Amazing.