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July
3, 2002
Welcome
back or welcome fist time visitors. Thanks to God's grace not much changed
here in the last three months. Juliana is still with us and still meets
with her angels daily. Usually at night but sometimes during the day, just
randomly. The daytime visits seem to surprise her, like she is expecting
them only at night.
Perhaps
the only thing that changed in the last few weeks is that Juliana became
softer and kinder and talks to us more. Sometimes she is missing her old
friends and cries for her aunt and uncle, who live in Europe. She would
love to re-visit Bush Gardens at Williamsburg, VA, but I don’t think she
could walk much in the heat. Williamsburg was her last big fun trip before
she was first diagnosed, and she likes to reflect on it because that’s
the only time she remembers without medicines, nurses and doctors.
She
told us today that there is a dark side in heaven (or somewhere on the
other side) and also here on Earth. She said, “We have to make sure we always stay
on the good side, even all the people who are praying for me, because on
the dark side you can’t choose to do the right thing any more. The angels told
me, I have to go around the world and tell this to the people who are
praying for me. ” These were almost exactly her words.
I
asked Juliana if she has a message for all of you reading her web page.
She said; “Tell them not to forget me, and ask them to send me nice
greeting cards to make me feel better.
And to keep praying for me, and that I love them all, and I send my love,
big hugs and kisses.”
Yesterday
we received a letter from a local mom whose 17 yr old daughter was
struggling with cancer. We called her right away just to find out that the
girl passed away the day before. This mom told us her daughter was also
visited by angels. She told her mom; They come to comfort me, and it really
helps.
According
to current medical options, Juliana's brain cancer can't be stopped from
eventually shutting down her neurological system.
Please pray with us for a peaceful journey for her to go home to her
heavenly Father and for the rest of our family to understand the temporary
nature of this separation.
We also need your prayers to let God guide us out of our four month long
unemployment situation.
I had a good interview last week but no word yet. Please pray with us for
a good opportunity that will fit our family’s needs.
03/30/2002 - Welcome
back. Please forgive me for not posting any updates for the past many
weeks.
To some
of you it is not clear where Juliana’s condition stands these days:
Because the last MRIs in December indicated returning tumors and our
insurance company paid very poorly, the
medication was discontinued. At that point her doctors could not predict
anything specific, but they said she could have a few more weeks maybe two
months before the major functions will be effected.
Since
than she lost some of her balance and gained a few pounds. These changes
make it difficult for her to walk more that 20 minutes at a time, so she
likes to stay home and watch videos from her extensive collection. Despite
of the walking problems, we managed to spend three wonderful hours at the
Atlanta Botanical Gardens last week, where I pulled her in a little red
wagon while she was taking pictures of hundreds of beautiful orchids.
Juliana
also loves fishing. There is a perfect place for family fishing in
Cumming, GA where she hooked two four pound rainbow trout. www.rainbowranchtrout.com
In the
last two weeks Juliana seems to be doing better. More energy, more play
outdoors, more ballgames. We’re a little puzzled over this, simply
because we were told by the hospice nurse to prepare for the opposite. Of
course this could be a short and temporary rebound, never the less it is
unusual. So, this morning while she was watching an other video I talked
to her about it; “Hey Julie! It looks like you’re feeling better
lately. Do you know why?” ”It’s because the angels lift me after I go to sleep.”
“Really? And what happens? Where do they lift you?”
“They take me to heaven.” You can imagine, my heart rate
started climbing, but I wanted to know more. “And what do you see in
heaven?” “The angels take
me to Jesus and He puts his hand on me.” “Where does He put his
hand?” “On my head you
silly, but stop talking because I can’t hear the movie I’m
watching.” Well, I was not prepared to know more. Or probably could not
handle much more. I had to sit down and recover. It appears she is being
prepared for something that is already quite familiar to her but not to
the rest of us. Please pray for a smooth transition for her. Until than, we
will take a few more fun rides in the little red wagon.
Please remember my job-search
in your prayers also. Thank you.
Show
this to your kids. Turn up the volume. http://www.mamarocks.com/why_i_love_her.htm
12/23/2001
- Juliana had a very good day today. She went to church in the morning,
than spent the rest of the day chasing her brother around, singing
Christmas songs, baking cookies for us and Santa, playing board-games with
her sister and protecting her new pet "Angel Hopper" the gerbil
from the family dog. This was our best day in the last few weeks. God is
good. No matter what troubles your heart, He can give you a happy day any
time.
12/14/2001 - The
last MRI from two weeks ago revealed some sad news for us. A new
tumor was discovered in the area where the original
tumor started five years ago. Juliana's doctor recommended that we raise
her dose by about 25%. Unfortunately our insurance company has
blocked payments to our supplier and we can't continue the
treatment.
Juliana
is still alert but tired and takes several naps a day.
Please pray for God's peace for Juliana, her
mom, brother, sister and father.
11/16/2001 -
Dear friends. An official denial was sent to us today from our HMO that
they refuse payment to Juliana's providers. While we are trying to figure
out the reasons and how to appeal, one of the hardware suppliers already
stopped shipments. We have supplies only for a few more weeks.
9/18/2001
- HAPPY
BIRTHDAY JULIANA!
Juliana's
birthday is just a few days away on September 24. but the party will be on
Saturday the 22nd.
She is feeling great
and looking good, I hope this means that she is getting stronger and
healthier. The last MRI 9/4/01 concluded no change, "stable"
condition.
8/23/2001 - We are very carefully moving up
Juliana's daily dose of medicine and getting close to the target amount.
The allergic rashes are treated with medication and healing quite fast.
Please pray with us for the effectiveness of the cancer medication.
8/15/2001
- Thanks
to God's grace Juliana will turn 9 on September 24. I am thinking
about surprising her with an awesome big birthday party. Hopefully it won't rain. I want to make this the
biggest fun filled party she ever had. With God's grace hopefully
Juliana will have many more fun birthdays in better health with us. Otherwise,
Juliana is hanging in there. She has developed some allergies to one of
the seizure medications she was on earlier. Please pray for this to heal
and resolve for good. Also pray for the effectiveness and tolerance of the
main cancer medication, which is almost at the targeted maximum dose. We
were unable to reach the target in recent weeks.
8/7/2001
- Juliana continues to regain her
strength. She was singing silly songs today from her CDs, like Puff The
Magic Dragon, than quickly lost her strength as her medicine approached
it's max dose. Please pray with us for better tolerance of the medication.
8/4/2001
- On August 2nd. Juliana was admitted to ICU due to an
unexpected, hard to control seizure. Now, two days later she is doing
better but very week. Please pray with us for fast recovery and good
decisions by her doctors. She spent most of this day just looking
around and recovering her normal breathing rhythm. On her last MRI there
are no identifiable tumors but a few tiny nodules that may just be part of
the post operative scar tissue. Hopefully that's all they are.
7/28/2001
- Please visit
these beautiful art auctions just opened for Juliana to help pay for her
new cancer treatment. We thank Jerri and all the other good people who followed, please view
their sites again in the future.
7/10/2001
- We are very excited to share some really
good news
with you. We just received the results from Juliana's last MRI from
7/9/01. The last line of the report reads: "There is no
evidence of residual or recurrent tumor seen."
This is based only on the MRI pictures. Which means that there are no big
visible tumors, but we still have to continue the treatment and hopefully
completely eliminate all remaining cancer cells.
Please keep praying for complete healing! (We know that she would be in a
better place on her Heavenly Fathers side, but she wants to stay longer
with us and we all would miss her very much, especially her little brother
Daniel.)
Little
by little we are getting used to the routine of our new life. Mom is not
only home-schooling any more but also became a 24 hour nurse. Juliana
needs to be connected to her IV medicine pump six times a day, around the
clock.
Our
insurance company started to reimburse Juliana's providers but only at a
rate of about 35%.
Lately
Juliana spends a lot of time coloring pictures and trying all kind of
new food. Unfortunately she had to give up swimming this year due to the
IV tube she has, but she takes karate lessons at the same place where
Daniel goes. She
asked for a pony again this week and we had to explain to her that our lot
has no permit for farm animals. Her flower garden looks very nice with
yellow lilies, yellow roses and blue asters . She is our little angel on Earth.
Thank you
for your prayers and support.
5/16/2001
- Thanks to the Lord, Juliana was approved by the FDA today to begin a
"phase II" trial treatment. She
could start treatment in a few days but she may not be accepted by the
clinic until we are able to pre pay the first three weeks of
therapy, which is over $15,000.
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