October 23, 2010 Post-Surgery Update (this will be a long post
and somewhat detailed, so if you get queasy, it may be hard to read)
It’s hard to know where to begin – we have lots of
information that we would like to share.
Let’s start with the day before her surgery. Josie was in the hospital the day prior for a
procedure called embolization.
Embolization is a process by which they take a micro fiber catheter and
feed it to the specific artery that they want to “block” the blood flow. The doctor that did the procedure was able to
find a large artery that was feeding the tumor and was able to block it
off. Basically, this was a successful
procedure. The hope was that when Josie
went to surgery, there would be less bleeding because this artery was blocked.
The day of surgery: Josie went to an MRI first thing prior to
surgery. This was to help them during
the surgery so they could tell from the images where they were and what was
tumor and what was brain. Later we were
informed that the tumor had doubled in size since the last MRI, which was a
little less than 4 weeks ago. This made
the tumor the same size again as when they first found it right after
birth. It is an extremely aggressive
tumor.
Everything was going well during Josie’s surgery; every
update seemed to be a fairly positive report.
One of the last updates, they said that she had a little bleeding, but
they had gotten it under control and were continuing. Then we were told that she was out of surgery
– that she was fine and to wait in a little conference room for the
doctor. We thought it was odd that we
got a conference room when most people were told right in the waiting room how
things went for whomever they were waiting for. But since they told us that she was fine, we
did not anticipate what the doctor came in to tell us. He sat down and looked weary and then told us
that things did not go so well. Josie
started bleeding, they would get it under control and then she would start
bleeding from somewhere else, they would get that one under control, but then
she started bleeding from places they weren’t even touching. She received 3 volumes of blood and then her
body stopped coagulating (wouldn’t clot).
She was in serious condition.
They ended up leaving some cotton balls soaked with a clotting medicine
inside and then closed up her head. We
were obviously devastated. In fact the
doctor was even shaken by the way things turned out since they had gone so well
for the first 4 hours.
They took Josie up to the PICU, where they worked for 1.5-2
hours trying to stabilize her, of which they were able to do. Praise God.
Thursday morning:
Josie had another CT scan and then we
talked with the doctor. He was surprised
that she was holding her own – said he thought maybe she was stronger than he
gave her credit for. The CT scan didn’t
show any worse than right after surgery.
Josie even opened her eyes and looked at the doctor. Earlier, she had moved her legs enough to
kick her little blanket off. The rest of
the day she was pretty quiet – which is a good thing.
Thursday night: Josie started having seizures again – not to
be unexpected due to her trauma. They
are currently still trying to get these under control with meds.
Friday morning: Josie went for another MRI – this is for
post-operative imaging. During the MRI,
the neurosurgeon came by to talk to Marc and me. The news was quite sickening. The part of the tumor that had grown back was
checked by pathology and the new tissue is malignant. The type of tumor she had at first, an
astrocytoma can have multiple cell mutations in it. When pathology checked it the first time,
there were not indicators of malignant cells, but the part that was left in her
brain from the first surgery must have either had those cells in it or they
mutated since, which is a possibility.
The first steps are to get Josie better from surgery, which
at this point, she seems to be doing okay, although this morning they found
that she has a urinary tract infection from her catheter. They are on it though and are giving her
antibiotics. Stopping the seizures is
another step they need to get under control.
Next step…the doctors (neurosurgeon and the oncologist) are
creating a plan for her. At this point,
they are planning on a new chemotherapy drug – used in infants. Then they will develop a further plan from
that stage.
So…we wait and we pray.
This will be a long haul for our sweet baby Josie. Not sure of the future, but glad that she is
resting peacefully here in the hospital and also in the loving arms of
Jesus. My emotions have been pretty raw,
but for the most part Marc and I are working through this moment by
moment. The girls (Reese & Eliza)
are doing well; they are at Nana & Papa’s this weekend and having a great
time I am sure. Pray for them as they
are going to get shuffled around a bit for a while.
Thank you to all who have been and continue to pray for
Josie – she needs it. Thank you to all
of our family and dear friends that have surrounded us – we need it.
Blessings,
Marc & Darcia
