A sad update
Jun. 22nd, 2005 08:32 am![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
dancerjodiOn Katie, the little girl we've done a lot of 501st fundraising for (text is from her Dad, one of our group's founders):
"We recently had a PET scan done on Katie, first of its kind we've had
done (MRI's so far). The pictures confirm that the tumor has resumed
growth, spoiling the hope that we could have shrunk it to an operable
size. We are meeting the doctors on Wednesday to discuss treatment
options. Katie is having some serious problems with symptoms returning
and worsening. The left side of her face has begun drooping and she is
slurring her speech, her feet are turning inwards, and she has problems
with eye movement and going to the bathroom. It's heartbreaking to watch
her write, as her hand have difficulty gripping and using a pencil. Her
father's day card to me was drawn with a lot of effort and the letters
are all over the place. So we're very concerned right now and trying to
adjust her meds to see if we can cut the symptoms down.
Katie's mood is, as always, upbeat and fun. She loves watching movies
and playing at home and decorating her new room. She even asked for my
old Terminator 2 poster to hang over her bed, because she saw that movie
recently and loved it (she's so weird - I love it). She's a big fan of
Aliens, so I'm giving her my autographed pictures of the marines I met
at Dragoncon one year. We hate that she had to miss Star Wars Weekends
this year, but we're hoping to make a Disney trip sometime this summer.
That's all for now. Just trying to find fun things for her to do this
summer. As always, thank you all for the wonderful cards and gifts
you've sent her - they really make her day. Please continue praying for
her. I still believe in miracles..."
"We recently had a PET scan done on Katie, first of its kind we've had
done (MRI's so far). The pictures confirm that the tumor has resumed
growth, spoiling the hope that we could have shrunk it to an operable
size. We are meeting the doctors on Wednesday to discuss treatment
options. Katie is having some serious problems with symptoms returning
and worsening. The left side of her face has begun drooping and she is
slurring her speech, her feet are turning inwards, and she has problems
with eye movement and going to the bathroom. It's heartbreaking to watch
her write, as her hand have difficulty gripping and using a pencil. Her
father's day card to me was drawn with a lot of effort and the letters
are all over the place. So we're very concerned right now and trying to
adjust her meds to see if we can cut the symptoms down.
Katie's mood is, as always, upbeat and fun. She loves watching movies
and playing at home and decorating her new room. She even asked for my
old Terminator 2 poster to hang over her bed, because she saw that movie
recently and loved it (she's so weird - I love it). She's a big fan of
Aliens, so I'm giving her my autographed pictures of the marines I met
at Dragoncon one year. We hate that she had to miss Star Wars Weekends
this year, but we're hoping to make a Disney trip sometime this summer.
That's all for now. Just trying to find fun things for her to do this
summer. As always, thank you all for the wonderful cards and gifts
you've sent her - they really make her day. Please continue praying for
her. I still believe in miracles..."
![[identity profile]](https://www.dreamwidth.org/img/silk/identity/openid.png){kind=small}
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Date: 2005-06-22 12:49 pm (UTC)God.
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Date: 2005-06-22 01:04 pm (UTC)*hug*
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Date: 2005-06-22 01:32 pm (UTC)no subject
Date: 2005-06-22 01:35 pm (UTC)I worry that it might run in the family.. every time the medium says he has a headache the thought is in the back of my mind.
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Date: 2005-06-22 03:44 pm (UTC)no subject
Date: 2005-06-22 07:42 pm (UTC)Katie and her family are in my thoughts.
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Date: 2005-06-23 03:06 am (UTC)no subject
Date: 2005-06-25 02:10 pm (UTC)============================
We met with the doctors on Wednesday to discuss the recent PET scans.
The information confirmed that the gray masses in the MRI scans are
indeed cancerous. The tumor has been growing aggressively and now
threatens Katie's life. The doctors were very direct with us, telling us
that the chemo and radiation could be considered a failure, and that now
medical science had nothing more to offer Katie. We have been told to
prepare for the end. Referrals have been made to Hospice and we are
making arrangements for how we want to treat Katie with 'comfort
medicine' in the final stages of the disease.
We have not been given a concrete timetable. Katie might have weeks, she
might have months. But due to the recent degeneration we've been seeing
in Katie's physical condition, we have to work fast if we want to do
anything special for her. I contacted Make-A-Wish and we have been
granted a Disney trip for the week of June 29th to July 4th and staying
at the village "Give Kids the World". We will be flying Katie's
step-sister down on Monday so she can participate. The cost is
unexpected, but the trip should be much more economical than we'd
normally have to consider, thanks to Make-A-Wish. We will be out of
touch for this week. We have successfully moved into the new house. Our
new address is ________________________________. All phone numbers are
the same. Please forgive us as we move in and out of touch.
I want to thank everyone who has prayed and supported us through this
ordeal. I ask that you continue your prayers and think of us as we are
about to enter the roughest part of this experience. Katie will be
treated for pain and discomfort as the cancer spreads, so it is our hope
her suffering will be minimal. The hard job will be for all of us, as we
try to keep a strong face and stay by her side through this.
I am not giving up on God. He is in control. I still believe in
miracles. God will take care of Katie and all of us no matter what the
outcome. By the same token, I am also wise enough to prepare for
whatever contingencies might happen. So preparations are being made.
Again, I would just ask that everyone pray for Katie and our family. If
there is anything you want to do for Katie, I would suggest doing it
sooner rather than later. I promise you we will do whatever it takes to
make her a happy little girl for as long as she is with us.
Thank you and God bless you all.
- Albin Johnson
Katie's dad