November 3, 2010
We have been in a whirlwind of doctors, specialist and
transition over the past several days.
Once again…where to begin is always the hardest part, do I start with
the newest info or do I start with what got us to the newest info?
Last Thursday, Josie’s Oncologist came to talk with us. He explained our options for Josie’s care, we
basically have two options:
1. Take
Josie home with hospice care
2. Start
chemotherapy and see if the drugs will shrink/shrivel the tumor
The doctor explained to us what chemotherapy would be like
and what it would mean for her care.
This will be a long process lasting at least 6 months to even longer
depending on how the tumor reacts to the drugs.
At this point it will probably be a 4 week cycle where she will have
chemo administered and then she will stay at the hospital for 3 weeks in order
to monitor her carefully and keep her immune system from being
compromised. The last week of the cycle
she will be at home and then the cycle will start over. Being able to go home though will most likely
depend on how her blood counts are doing and if she would be susceptible to
infections during that 4th week.
The Oncologist told us that he would not even present this option if he
did not feel that there was a good chance that this will work.
We had the weekend to discuss our options and were given
more information to review the chemotherapy choice in order for us to make an
informed decision. Although chemotherapy
is a hard choice to make, and has its own downsides, we have decided to go this
route in order to give Josie a chance at life.
Chemotherapy will be starting tonight (Wednesday). Originally they had told us Friday, but they
want to get this started sooner than later.
This tumor is very aggressive and our Oncologist is concerned that it is
even now growing. As the body heals, it
releases healing chemicals and those healing chemicals even go to the “nasty”
tumor, which then thinks that it needs to heal and grow too.
Sunday and Monday we started to see some improvement in
Josie’s behavior. Previously if Josie
wasn’t sleeping, then she was in a constant state of irritation/fussiness. It seemed to be that it was a toss-up of whether
she was still in pain or if she was having withdrawal from the pain medicines
that she had been on. Marc and I knew
she was being well cared for, but we really wanted to see something work to
help her agitation. Finally they gave
her a large boost of Phenobarbital (seizure med) along with some other
variations of milder pain medications and it has done the trick. She is very calm now when she is awake and
will stay awake for quite some time.
Josie still doesn’t like to be picked on and is very sensitive to touch,
but getting better with more and more stimulation.
Yesterday (Tuesday), we heard rumor that Josie is no longer
intensive care and could now possibly be moved to the 7th floor in
the Hematology/Oncology section. We
started packing things up, but then of course things didn’t move as quickly as
we thought, so we ended up waiting for a couple hours before they did indeed
move us. She is now resting well in a
very large crib. We really like the
staff in the PICU, but it is nice for Josie not be considered intensive care
any longer.
The 7th floor is nice and we have our own room
and even our own bathroom in the new room.
Being on this floor though also means that we do more of the basic care for
Josie, so we are changing diapers, doing oral care, strapping on these little
arm splints that she has and even holding Josie now!!! It makes my blood pressure go up a little to
handle her since her head is very fragile.
Josie’s head is fragile because she is missing part of her skull, there
was too much swelling after surgery, so they could not put the skull flap
(that’s what they call it) back in place – it is somewhere here at the hospital
in a freezer. For those that have never
heard of this before, it is completely safe and even though they don’t have the
skull flap in place, there is skin over it, which is why we have to be so
careful.
Occupational and Physical therapy were here today and were
able to turn Josie very gently over on her tummy and she tolerated it for about
½ an hour. This is a very good sign and
good for her to be able to move to another position other than on her
back.
Marc went back to work today for the first time and so it is
just me here with Josie. Pray that we
can find balance with being here, our girls at home and now with Marc
working. It is quite the juggling act –
we are so thankful for the many people that are helping us out.
With God there is great hope.
Blessings,
Darcia & Marc
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