April 30, 2011
We received word that the members of the tumor board were in
agreement that Josie's tumor is not growing and somewhat improved. The neuro-surgeon was in favor of replacing
Josie's skull bone, in fact, he would like to get it in sooner rather than
later in order for it to start growing. The
cotton balls that are in her head from the last surgery are going to remain
where they are for now. The
neuro-surgeon said that they are not causing a problem and could remain in
there for years without any medical concerns.
He was more worried that if he removed them now there would be bleeding
problems again and then we would be back to square one. Unless there is a medical necessity to remove
the cotton balls, they are going to stay until a later time. Marc and I are in agreement with this
decision and have no concerns with leaving them in her head.
Based on this response, they would also like to go ahead
with giving Josie a G-tube for feeding and nutritional support. Although this is another surgery for her, we
are in complete favor of having this done because it will mean that she will no
longer have to have tape on her face and a tube going down her throat. We have always thought that this was a major
factor in her gagging and hope that it will help her in wanting to learn how to
eat and drink.
Josie will need to take a break from one of the chemo drugs
(Avastan) that she is currently receiving, since it inhibits the healing
process in her body and for obvious reasons, she needs to heal from both surgeries. At this point, she had her last dose of this
drug on April 22 and will not receive another dose until July 8. She will continue to receive the other two
drugs during this timeframe.
The two surgeries could not be done at the same time since
the g-tube surgery is considered a "dirty" surgery and the skull
replacement must be an absolutely sterile surgery.
The G-tube surgery will be first surgery and will be
scheduled sometime during the week of May 23 and most likely it will be an outpatient
procedure. She may possibly have to stay
overnight for observation based on her history, but that is to be determined
yet. We meet with the g-tube surgeons
this coming Friday, May 6 for a consultation and from there the date should be
set for the surgery.
The skull replacement surgery will take place sometime
during the following week of May 30.
This will be a stay of 3-5 days, as far as we know. I will be calling the neuro-surgeon's office
this coming week to start those arrangements.
Meanwhile, since Josie will need the other chemo drugs,
those have now filled up the calendar and the month of May just got REALLY
busy! We are not complaining though -
the MRI and Tumor Board response have been so encouraging and we feel like she
is in great hands. She is loved by so
many people and that includes the medical staff. Every time we go to clinic, there is always a
little party surrounding Josie when we get there because the nurses, doctors
and techs all have to come see "their Josie"!
We are looking forward to this next step in her life and
also seeing how God is going to continue to work through this precious
kiddo. Our constant prayer for her is
that God will be seen clearly through her life - because it's not about her or
us, it's always about Him.
Many blessings,
Marc & Darcia
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