Saturday Surgery

Yesterday's surgery is now scheduled for today at 2pm. We had a brief
meeting with Dr. Parsa to discuss what was going to happen and there
is not much new news there. He intends to install a titanium mesh to
replace the missing bone flap which he will make slightly smaller
than the bone he is replacing. This is to relieve the tension on the
skin in an effort to aid in the healing. Up to this point the wound,
due to her irradiated skin, has had a lot of trouble healing.

He will also be converting the drain that is currently in her head
into the shunt as it is in the perfect location right now. This will
route all the fluid into her abdomen and should eliminate all the
seepage problems that have been plaguing us. One new bit of news is
that the lack of communication between the two ventricles is no
longer an issue as once believed. This is good news because it means
that she will not need to do this procedure in the future.

Aside from discussing the surgery, Dr. Parsa did begin talking about
the next step---essentially to get her on the chemo as soon as
possible. This will depend on the ID (Infectious Diseases) team
giving the "all clear" for infection. The biggest risk of taking
chemo is that your immune system gets compromised and puts you at
risk for infection.

The fact that she has lost her speech is still a mystery and we are
hoping that the shunt will have a positive effect on this. The plain
reality of the situation is that it could also be being caused by
microscopic tumor cells effecting certain parts of the brain.
Unfortunately we can only speculate right now until she is able to
have another MRI in the near future.

I should add that Dr. Parsa also reminded us what a serious disease
she has and how critical her condition is. Karyn has perhaps the
biggest fight in front of her and we are hanging everything on the
chemo because there will not be another surgery---there simply cannot
be another surgery to remove tumor as her system would not be able to
tolerate it.

Once the surgery is done the plan is to watch her in ICU for a few
days, then move her downstairs to the 8th floor for a bit more
recovery before being released. There is still some debate as to
where we will release her----either a skilled nursing facility or
home. Obviously I am going to do everything in my power to get her
home as we have sadly become quite skilled nurses.

So here's to Karyn and all she represents in our lives....and here's
to a complete and full recovery.

~Julian

Surgery bumped. More info as

Surgery bumped. More info as I get it.

More Surgery

Karyn has now been scheduled for the shunt procedure tonight. Dr.
Parsa intends to convert one of the new drains into a shunt since
it's in the right place already. He also intends to reopen the
incision and install a titanium mesh in the place of the bone flap.
Whether or not this is a permanent solution we don't know, but we
should find that out later today when we meet with him.

The plan now is to get her out of the hospital, over the antibiotic
treatments and back on the chemo. It sounds like they intend to
discharge her later next week.... we've got our fingers crossed.

~Julian

The tube is out and

The tube is out and Karyn is breathing on her own. First word was "hi" when Thet showed up. Now to get her some food.

She made it through the

She made it through the surgery...they left the breathing tube in and it will stay in all night. No one should have to see this.

Shunt Postponed

Today we received more proof that nothing ever goes according to plan
around here. I arrived to find a bit of a commotion in Karyn's room.
She was all readied for the journey downstairs to the O.R., unplugged
and prepped but no one seemed like they were going anywhere. Within
moments it seemed, Dr. Parsa appeared and expressed some concern over
Karyn's wound. He began to poke and prod, apologizing to her as he
did and turned to tell us that he felt strongly that the shunt be
postponed and an alternate plan be put into motion. He suggested
that, although I.D. had cleared her for the shunt (since the
infection are indeed gone), the risk of another infection was too
high. He proposed reopening the incision, removing the skull bone
plate and installing two new drains to replace the old ones. I was
still in shock at the thought of having the large of a piece of skull
missing when he asked if I was ok with it. I told him that I honestly
had no idea what to say and didn't feel I was in a position to make
that call either way. He then said, "Well, I'm kind of telling you
what I think you should do."

At that point Jim and I just said that she was in his hands and that
if he felt strongly that this should happen, then this should happen.
So, here we are... 8:30PM and still no sign of her on the 11th floor
(though we are told she is on her way up).

What does this all mean? Well, it's still sinking in for us, but what
it essentially means is that she will have a large hole in her skull,
covered only by the skin flap. This will provide an instant relief of
any pressure and should have a positive effect on her neuro status.
Dr. Parsa noted that this is a process that is common among head
trauma cases and that she could months or years without the piece of
skull there.

The next step will be to install the shunt, perhaps as early as
Monday, and then get her back on the Temodar chemo as soon as
possible. Then, someday down the road, they will create a replacement
bone plate and she will need to return to UCSF for yet another
surgery to put that plate in. You've heard of people having plates in
their heads.... well, you can add our sweet Karyn to that list of
people.

Today marks the fourth week she has been here in the hospital.
Hopefully this new procedure will pave the way for a quick return
back home. And hopefully we will get to hear her beautiful voice
again soon....

~Julian

Change in plans...they are now

Change in plans...they are now removing the bone flap and putting in a new drain. It is under way now. Details when I get to my mac

MRI Results!

Well, I did not come to UC today with the intention of finding out
what the results of the MRI were. But as I boarded the elevator to go
to the 11th floor, in walked Dr. Parsa. "I caught ya" I said. He said
that he was hoping to run into me because he had seen the MRI results
and would come to see me in the ICU. Well, I started to worry
instantly since there had to be a bad reason why he would not just
talk to me there....

Anyway, he finally arrived with Dr. Wang at about 6:30PM and said
that there was indeed a slight amount of tumor growth, but definitely
nothing to ring the alarms over. He used words like "slight" and I
was left feeling that this is good news under the circumstances. So,
we are going to continue with the plan to place the "right oxcipital
shunt" ---surely spelled wrong, but a procedure that he feels should
help her "wake up". He did go on to mention that, worst case, he
would have to go ahead with a more serious procedure to re-establish
the communication of the ventricles. But right now, this is not in
the plan.

Another worthy thing to mention is that, while Jim and I were sitting
here watching her sleep, she began to move her left foot, then her
left leg. It wasn't much, but it was movement and I pointed it out to
Jim in time for him to completely notice.

So sometimes we do get good news.....and I am breathing again.

~Julian

Surgery Cancelled For Today

A few bits of information....

Dr. Parsa mentioned over the weekend that he wanted to do an MRI to
make sure that Karyn's lack of speech was not due to the tumor
growing.....and if it was, he was going to call off the surgery
pending a shift in our plan of action. After a few false starts
getting to the MRI room over the weekend, Karyn is getting wheeled
down at this moment so we should have some answers soon.

I don't like to speculate because all I expect is bad news, but the
fact that her headaches had vanished since the cyst was removed makes
me think that this change in her mental status is due to the excess
of fluid in her head. Still, we all know that there is a bit of tumor
remaining that had crossed the midline into the left side of her
brain---and this is where all the personality and speech areas are.
Needless to say, this is quite scary for all of us as we wait for the
results of that MRI.

For now the surgery has been cancelled and rescheduled for Wednesday
to give us a little more time to review the results. There probably
won't be any information for the next day or so, but I am holding my
breath and have everything crossed that this will turn out well.

One other positive note was in something Dr. Parsa said to Erica on
Saturday. He said the reason he got interested and ultimately heavily
involved in the immuno-research for tumors was that the statistics
showed a dramatic increase in the long-term prognosis for those
patients who had gotten infections.

~Julian