Sarah's account of today

Today has been long. We began the day by going to the clinic and getting
Ellie's blood checked. Her white count is basically at zero, and she was in
need of both a hemoglobin and platelet transfusion. This wasn't a big
surprise to me, as Ellie's face and even lips were completely pale. It was
wonderful to see some pink come back into her face while the hemoglobin
transfusion was in progress. Ellie also had the dressing changed on her
broviak (catheter that allows for medication, blood transfusions, and blood
draws). This is a once a week process of removing the very sticky covering,
cleaning the site and tubes, then replacing the dressing. It's a very
difficult ordeal for Ellie, especially since the removal and replacement of
the tape is in the same place every time. Despite this unpleasantness, we
are all thankful (including Ellie) that she has the broviak in place as it
eliminates the need for continual IV sticks. The only thing Ellie hates
worse than tape on her skin is needle sticks.

Really, the hardest part of the day was how difficult it was to make sure
that Ellie had enough to eat and drink. I brought a small cooler with us,
but it was still very difficult to keep up with it. She didn't feel good
with all of the activity and low blood counts. I mentioned last time I
wrote how excited we were about the weight that Ellie gained last time. By
Monday, she had lost 9 pounds! It is so frustrating to gain ground, than
loose it again. BUT - today she showed a one pound gain, so even that is
great to see. We now have about two weeks to try to pile on the weight.
She cannot afford to loose 9 pounds each round without gaining it back in
between. THIS IS SUCH A HUGE PRAYER REQUEST FOR ELLIE. Not only is it easy
to loose weight because of feeling ill from chemo, but the cancer is trying
to rob her of everything that we put into her body. There are so many
dangers to Ellie during this time, from illnesses to side effects of the
chemo, not to mention the cancer itself, that it is often easy to loose
sight of how dangerous something as simple as weight loss can be. It has
become an all-consuming, full time job for me to keep putting something into
her mouth. Actually, as depressing as this sounds, it's really very
comforting to feel like I can do something that has a measurable result.

Yesterday started out so poorly, with Ellie not wanting to eat, but I am so
proud of her. We talked about it, and decided that keeping hydrated and
putting healthy food in her body was like shooting bullets at her cancer.
Ellie has already started referring to herself as a fighter, so we talked
about how hard fighting can be - that it's not fun or easy - but that's what
she has to do right now. She totally got into the concept, and now we keep
a daily log of Ellie's bullets. Yesterday she shot 29 bullets at her
cancer! To let you know how hard that was, she has to drink 4 oz. of liquid
(any kind) to make one bullet. Eating earns 1-2 (depending upon quantity)
and she gets extra for particularly nutritious things. Thus the one pound
gain in one day! We also talked about the fact that she is not fighting
alone. She now knows that everyone who loves her is fighting along side of
her, and there are many people, some of whom she doesn't even know, that are
prayer warriors. I never thought I'd be preparing my 8-year-old daughter
for battle, but here we are. It has been such a deep joy to my heart to see
Ellie's fighting spirit. Tonight we watched Veggie Tale's story of Esther,
and the song she sings was particularly poignant to me. While I know that
we have no guarantees on the outcome of Ellie's cancer, the one thing that I
am convinced of is God's love and care.

The battle is not ours
We look to God above~
For he will guide us safely through
and guard us with his love

I will not be afraid
I will not run and hide~
For there is nothing I can't face
when God is at my side
No, there is nothing I can't face
when God is at my side

Today was also difficult on Ethan. He did not want to leave us morning, and
had a particularly hard time when John said goodbye. Tonight while we were
watching "Esther", Ethan said, "I love my dada so much", then "I love you
Mommy, I love you, Ellie." After a pause he said, "I really love my dada"
and Ellie said "I know, I love him too." He and Ellie then exchanged
another round of I love you's. Sometimes all a mommy needs is to hear a
completely unsolicited "I love you." I especially love hearing and seeing
how much they love their dad. He has been wonderful to both of them - they
draw such comfort and strength from him that it warms my heart, and I am
comforted as well.

Thank you again for all of you love and prayers.