November 9, 2010
Josie is handling chemotherapy pretty well so far. She has started throwing up as of this last
Friday morning. Aunt Tara (my brother
Josh’s wife) was staying overnight with Josie to give us a much needed break
and ended up witnessing the first bout of yuck.
Josie has now thrown up multiple times, but the doctor does not think it
is chemo related since it has been several days since her last dose and
typically the nausea starts the day of or the day after treatment. My belief is that she has started refluxing
again – like she did while she was home with us. They are keeping a close eye on her and are
trying a couple different things to see if it helps her. The main concern is they do not want her to
get anything in her lungs and cause her to get sick. Keep praying that she stays healthy as well
as Marc and me. If one of us gets sick,
it means we cannot be up here with her and that would be downright rotten. L
Many people have asked about Josie’s treatment and what that
looks like for a baby. The treatment that she is being given is part of a new
treatment plan based out of a hospital in Los Angeles. She receives 3 different chemotherapy drugs
throughout the cycle. One drug is a
onetime dose the first day of the cycle, one drug is given once a week for 3
weeks of the cycle and the third drug is given for the first 5 days of the
cycle. Don’t quote me on all of this
information, as we are still trying to wrap our minds around the whole process
ourselves. At day 7-10 of the cycle,
Josie will probably be at her lowest point because her white blood cells will
be low and it is harder to fight off infections. Tomorrow starts day 7 of the cycle – they
draw her blood levels every other day and will watch her closely. After
each cycle, she will probably have some type of scan done to see how the tumor
is responding to treatment. If after a
couple of cycles they find that the tumor is not responding, they have another
option of a 4 drug chemotherapy treatment.
It’s not necessarily a stronger treatment, just targeting the tumor
differently. At this point though, we
just wait and pray.
Yesterday she had a surgical procedure done to place a
broviac line in her chest. This is a
more permanent and safer port that she can have in for an extended period of
time for chemotherapy. Everything went
fine with the procedure – it took a little longer since she is an infant and
her veins are very tiny. When the time
comes for her to go home, the line will remain in and we will be able to use it
to administer medication at home.
I had a glimpse of hope today as Josie looked at me and
actually smiled and shortly after that gave me another smile along with some
itty bitty coo's. My heart melted, I
must say! It feels like things are clicking
back into place for her - like she is coming out of the fog of all the surgery
and drugs in her system. When we thought
we might lose her the night of her surgery, one of the only things that kept
going through my mind, was her precious smile, the thought of not seeing that
smile again tore me up. I asked God that
night, that if He spared Josie’s life that I might see her smile again. Thank you God for answered prayer and proof
that He cares about even the smallest things like a smile!
A friend of mine wrote me today and said, “I don’t know how
to make sense of Josie’s suffering.” I
pondered her words for a while throughout the evening, my conclusion: I can't
make sense of Josie's suffering either.
It makes it all the harder when I can't just pick up my baby and comfort
her because I have to be so careful not to pull any wires and cords; and I can
only hold her a certain way because she is missing part of her skull; and that
sometimes picking her up to hold her makes her more uncomfortable than she was
just lying in her bed. Some days it
stretches me extremely thin, yet each day, I realize that God has put Josie in
our life and her life is for a reason, no matter how long or short her days may
be on this earth. God has a much bigger
picture than I can ever understand, in fact he has the whole picture and every brush
stroke of that picture is perfectly painted – including Josie. With that truth, I am secure – it doesn’t
mean we won’t have a lot of tears and heartache for our baby girl to have a
“normal” life or even life in general. The
strokes seem harsh right now, but they are forever making the final picture
glorious. For right now though, I am
looking at the beautiful brush stroke of a miraculous baby smile.
Blessings (and hopefully a restful night here with Lil’ Jo),
Marc & Darcia
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