March for Babies

Thursday, January 08, 2009

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.


victoria said...

Just realized you were writing again a few days ago. I was heart broken to hear your news, but this post is WONDERFUL. May the next few months go by uneventfully and quickly. You deserve a break. Please keep us up to date as you feel able

Jen said...

I am so sorry to hear about all that you all have been through. You and your daughter are in my thoughts, and I hope that this year brings you all health and much happiness.

DeadBug said...

I have thought of you and Azure often these last few months, hoping very hard for good news. So glad to find that she is doing well, god, what a hellish time this must have been for you.

Will be keeping you in my thoughts and will check back often for updates!

May 2009 be a wonderful year for you all.


jbondsgirl said...

Hugs, Blue. It hasn't been easy, that's for sure. What's up with these people asking if you've thought of having another child? Do they not know what you are going through? Are they insane? Wow.

You are all in my thoughts and prayers. Azure is a fighter and she is amazing. She's beaten the odds so many times. Hang in there, you guys are doing great.


JV said...

My heart breaks for what you've been going through. Just a lurker, but have been thinking about you and Azure a lot. I am ecstatic to find the word "Remission" in this post. Praying for a peaceful 2009. Hugs.

Jenn said...

She's one amazing little kid.

Cassandra said...

Here from Lost and Found.

So glad that Azure is doing better.

Best wishes to your brave girl and her brave parents.

itsazooaroundhere said...

Oh wow, I'm so sorry for all that you've been through. But that IS wonderful news that she is in remission. I'll send many positive thoughts to you all.

Betsy, here from L&F

FattyPants said...

So glad to hear she is doing fine. Wishes for a happy, healthy, and uneventful 2009.

Sami said...

I am hoping this comment finds Azure doing well and in remission. I just wanted to say I was thinking of you.