Schedule of Events
 | 5/1 - I (Virg) am doing this update a day late for
all of you regular followers of the update. Tuesday took a nasty turn
for Jeri. She woke up in the morning with a sore right shoulder...no
problem...she just slept on it funny...we thought. About 4pm, she
developed excruciating pain in the rib area on her right side. Jeri is
a really tough girl, and when she started sobbing from the pain, we got
scared. After calling the doctor on call, Jeri and I headed to the
emergency room at Texas Children's. It was about 7pm when we got
there, and because there were so many people at the emergency room, it was
after 9:30 before Jeri was even checked in. The pain was such that she
couldn't lean back in a chair or lie down. She could only double up
with her head in her lap. After being examined by a few doctors, they
drew blood from Jeri and then a little after midnight we headed over to
Diagnostic Imaging for a chest x-ray. The blood work was all negative
(which meant that the problem was not her liver, pancreas or kidneys).
The x-ray didn't show much different than last Thursday's CT.
Basically, we got a lot of negative diagnoses but nobody really knew what
was wrong. What they did know is that Jeri's pain had to be brought
under control. So they gave her some IV morphine. That helped
enough that she could doze a little but she still couldn't lie down or
move. Breathing was still painful. After repeating the morphine
dose this morning about 8, they gave us a prescription for some morphine in
pill form and sent us home. We got back to the house about 11:30am. |
| 5/2 - Since we got home this morning, Jeri has been much
more comfortable. The morphine seems to be keeping the pain down to an
ache rather than a sharp stabbing (Jeri's words.) We are both
exhausted as sleeping in the ER is a lot like sleeping in the middle of a
freeway at rush hour. We cancelled her school session and physical
therapy for today as it would have been impossible for her to deal with
either. Today will just be a day of rest and recovery. We did
see Dr. Murali in the clinic this morning before we left, and he speculated
that one of the tumor nodules in her right lung might be resting on or close
to the lining of the lung. That lining is very sensitive and could be
causing Jeri's pain. He will be taking a closer look at her x-rays and
discussing them with the surgeon. The good news today is that Jeri's
blood counts are all on the rise. The best news is that we are back
home and hopefully will sleep in our own beds tonight. |
| 5/3 - Well, Jeri didn't get to sleep in her bed last
night and it looks like she won't sleep there again tonight. It is
just too painful for her to lie down, so last night she slept in Brit's big
recliner in the den. She said that she slept great. She is going
to sleep there again tonight. While the morphine seems to help relieve
some of the pain, Jeri says that it still hurts to stand up straight, lie
down or move around. She is such a trooper though...because she can't
practice walking with her cane right now, she is doing her physical therapy
exercises in the chair. |
| 5/4 - This was a rough morning for Jeri. She had a
fever and nausea from the morphine. She drank lot's of water and the
fever subsided and her stomach felt better. The afternoon was a much
more pleasant experience. |
| 5/5 - Jeri still has pain in her chest but it's getting
better. She thinks she'll be able to try the stairs and her bed
tomorrow. |
| 5/6 - It was a better day but still wasn't all that
good. Jeri took it easy again most of today. She took her bath
and tried laying flat on the bed while Virginia changed the dressing on her central
line. Actually it's a pheresis line but it serves the same
purpose. She still has difficulty with the bed thing so it's another
night in the recliner. Jeri also went upstairs to her room for a few
minutes this evening. It was a difficult trip but she felt good to
have a few minutes in her room to pick out her own clothes. I hope we
get an explanation of this difficulty. Nothing on the x-rays have
indicated the cause of the trouble. |
| 5/7 - Today's appointment at TCH
was informative for Virginia and Jeri. First, Jeri's blood counts are
coming up. She won't start another protocol until her blood counts
have recovered. Dr. Murali, Dr.
Berg and Dr. Nuchtern have
conferred and do not believe that, at this time, Jeri should have surgery to
remove the nodules from her lungs. They do not believe the nodules are
large enough to cause problems and would still like to see if one of the
therapies can stop their growth. Naturally, we are concerned but will
accept the judgment of all these fine medical minds. They also
discussed the pain Jeri is having. They do not see anything in the
x-rays or Jeri's last bone scan to indicate that the cancer has spread to Jeri's ribs.
They will
schedule a bone scan prior to the
next treatment, just to be sure. That leaves the question of,
"what is it," still out there. They have speculated that a
small, even possibly pinhead sized nodule may have formed near the pleural
lining of the lung. The note that the nodules can be too small to be
seen in a CT-scan. That was
certainly the case when Jeri had lung surgery last September
15. Then came the question of what to do about the pain.
They indicated that it could be handled with medication and that obviously,
they had not yet gotten the dosage correct. They said that the
medicine should control the pain and that she should be able to function
normally, including sleeping, school, eating out and physical therapy.
We'll see how it goes. |
| 5/8 - While Jeri won't be running any marathons soon,
the increased dosage of morphine did make her feel better today.
Rather than sitting in the recliner all day, she got up at least once an
hour to wander around the house and at least get the blood moving a
little. She is feeling good enough that she thinks that tonight may be
the night that she can finally sleep in her own bed. We'll see. |
| 5/9 - Well, Jeri didn't sleep in her own bed last night
and she is not planning on it tonight either. When I asked her why,
she said that because she feels so crummy when she first wakes up, she is
worried about getting downstairs. She did continue her walking program
every hour (when prodded by mom anyway) and tomorrow she will be required to
leave the house on an outing. I think she is developing recliner
dependency. The pain is much better but her energy level is very low. |
| 5/10 - Jeri did make it out of the house today.
We went to Barnes and Noble and picked up a few books so that she can
entertain herself without the TV for awhile. The morphine is
definitely doing a better job with her pain. She made it up the stairs
tonight and is already relaxing in her own bed. Her energy level is
still very low. |
| 5/11 - The pain is still there but Jeri says it's sort
of manageable. It must be. She had school today and felt like it
went fairly well. She had physical therapy in the late
afternoon. There has been some regression there. She worked
hard, as always, but didn't have the same level of energy as she did a
couple of weeks ago. |
| 5/12 - The pain seems to be easing up a bit. Jeri
had much more energy today. She did some light shopping with her mom
this afternoon. She's also eating better. The trip also included
a stop at the salon where Jeri had her hair washed, cut (slightly)
and styled. I've included a picture
or check the Photo Album. It's kind of
hard to tell in the picture but don't tell Jeri. She also made it up
the stairs this evening with no assistance. Jeri's pretty
independent. She was up the stairs before any of us knew she as even
trying. We would have insisted on helping and Jeri doesn't want help
unless it's absolutely necessary (according to her definition of
necessary). Still, it's good to see her with more energy. We'll
see if tomorrow builds on the improvement or if it was an anomaly. Oh
yes, some of you may remember the original clinical trial that Jeri was
going to try called ET374 (3/19). The
test was closed when Jeri's blood counts were high enough to start (4/3).
The trial has been discontinued. Too many adults in a separate trial
have experienced failure of the liver. I suppose you know what that
means. Jeri was lucky on that one. She'll get the chance to try
something else. |
| 5/13 - Jeri's done ok most of the day. We tried
going out to dinner for Mother's day. Jeri was fine when we
left. She wasn't so fine after about an hour wait for a table.
She brought her meal home and will try it later in the evening. |
| 5/14 - We went to clinic today. We probably will
not have the current blood counts until tomorrow. Jeri had a tough
morning but as the day went on she got stronger. |
| 5/15 - We received Jeri's counts this morning and they
continued to slowly rise. This was another droopy day for Jeri
although she did gather all of her energy this evening to attend Randi's
award ceremony at Cy Creek. Randi was honored for being an honor
graduate and we are all very very proud of her. Tomorrow will be
Jeri's last day of home school for this year and then she will have to
gather up some more of that precious energy for physical therapy.
|
Category (see
link for definitions)
|
Normal |
Adequate / Acceptable |
Jeri |
| Hemoglobin |
12 |
8 |
9.1 |
| Platelets |
250,000 |
100,000 |
48,000 |
| White Cells |
4, 000 - 10,000 |
4,000 |
1,700 |
| ANC (Absolute Neutrophil
Count) |
1,500-5,000 |
1,000 |
1050 |
|
| 5/16 - Jeri had much more energy today. She says
that it is because she decreased her morphine. She said that it was a
good trade off to deal with a little more pain in return for a little more
energy. She had a great physical therapy session today and really
worked hard. Tomorrow, she is going to attempt a luncheon outing if
she can. |
| 5/17 - The luncheon outing took place today. Jeri
gave the place a "thumbs down" rating. She had a short walk
outside using the crutches. I saw the end of the walk as I was getting
home from the airport. It was nice to see her outside. She's
also on her second day without the morphine. She's says it makes her
too out of it. She's still in pain though. She won't say much
but it's there. |
| 5/18 - Jeri didn't have much energy at physical
therapy. She's just generally in a low energy funk. We tried
making homemade pasta this evening. Neither Jeri nor I were very good
at reading the directions. That was a surprise. Jeri's usually a
precise cook. I can't say the same about her dad. We salvaged
enough to have for a meal tomorrow. |
| 5/19 - Not much happening today. Jeri was out of
bed fairly early for a Saturday. She's been up and down the stairs
several times. There was a bit of light shopping followed by rest. |
| 5/20 - Jeri's sleeping habits are turning to normal now
that she's been off the morphine for a few days. She was up early
today. I asked her what she was going to do to get out of the house
today. She decided that going shopping with her Mom was better than
the electronics store or driving range with me. I was a bit leery of
the choice but it turned out just fine. They went shopping without
buying. Virginia said she's got some good ideas for Jeri's birthday
this coming week. I guess that's good news / bad news as far as the
budget is concerned. Jeri also helped make dinner this evening.
She used it as a chance to get around without crutches or cane. It's
good to see the sparkle in her eyes now that she's no longer a junkie. |
| 5/21 - Jeri continues to regain her strength and energy
bit by bit. This morning, she meandered around the kitchen without her
crutches or cane and made brownies. (nasty little diet-busters!)
We went to clinic for her weekly exam and blood test and then walked the
half of the mall that we missed yesterday. (There were a few teeny
weeny purchases this time, Brit.) Tonight, she is watching the Spurs
and Lakers play. |
|
Category (see
link for definitions)
|
Normal |
Adequate / Acceptable |
Jeri |
| Hemoglobin |
12 |
8 |
9.7 |
| Platelets |
250,000 |
100,000 |
86,000 |
| White Cells |
4, 000 - 10,000 |
4,000 |
2,460 |
| ANC (Absolute Neutrophil
Count) |
1,500-5,000 |
1,000 |
1,150 |
| 5/22 - This was another good day for Jeri. She
went shopping with Randi and Randi's boyfriend, Chris, this
morning. They picked up a wig for Randi to wear as Dolly in
"Hello Dolly". Then, the three of them went out to
lunch. Jeri also accompanied Randi to her play rehearsal this evening. |
| 5/23 - Jeri is fighting a sore throat today and is not
quite as energetic as she has been the past two days. Even though she
didn't feel like it, she did a great job at physical therapy today.
She is such a trooper! |
| 5/24 - The life of a taskmaster is never easy.
One again I issued a challenge to Jeri and she showed that she can rise to
the occasion with the right motivation. A package for Jeri had
arrived. Thinking it was for her Birthday on Saturday, I wouldn't let
her open it. I learned today from one of the senders that she should
be allowed to open the box. I told Jeri she could do so but only if
she would go and get the box herself while completing a circuit of the
house without aid of cane or crutches. She was gone in a flash and
returned almost as quickly. The key to Jeri's psyche must therefore
either be money for shopping or surprises that come in the mail. Oh
yes, she also went shopping for her sister's graduation gift and out to
lunch with her Mom and Grandmother. |
| 5/25 - Jeri's Birthday is tomorrow and that's also
Randi's graduation day. We went ahead and celebrated Jeri's Birthday
today. She received several nice gifts. There will be plenty of
opportunities for retail therapy. Today was also physical therapy
day. She's gone up to her room early this evening. I think she's
tired out. |
| 5/26 - This was an important day in the Parker family. Jeri had her
  th
birthday and Randi graduated 
from Cypress Creek High School.
That made it a big day all the way around. Jeri reluctantly did most
of her birthday celebrating yesterday so that Randi could enjoy her day
today. The graduation was early this afternoon. It managed to
start raining just in time to mess up traffic. Nevertheless, the show
went on. We had dinner at Damian's
Cucina Italiana. It was a nice evening. Jeri had lot's of
hiking to do and held up well. She was tired by the time we got home
this evening. She went to bed pretty early. |
| 5/27 - Jeri was up at a reasonable time today.
She seemed to get more and more tired as the day went on. Early this
evening, she did some walking with the cane and her physical therapy
exercises. She made it through them but seemed a bit more tired than
usual. She has her next blood test on Tuesday. I'm hoping that
they are high enough to get the next treatment going. I worry about
that stuff growing inside her. |
| 5/28 - The holiday is over and it's time to get back to
business. Jeri visit the hospital tomorrow to have the next blood
draws done. She should be getting close to the levels needed for the
next treatment. |
| 5/29 - Jeri started off this morning by making cinnamon
rolls for the rest of the household. MMMMM! After a lunch stop
at her favorite fajita provider, Lupe
Tortilla's, we made a quick stop at
TCH for a blood draw. We don't have those results yet. |
| 5/30 - Jeri's physical therapist was absent today so
Jeri walked up and down the aisles of the grocery store with me (of course
as she pointed out multitudes of junk food that we "needed" at
home). She was pretty tired after that excursion. |
| 5/31 - The results of Tuesday's blood test came in
today. That made it a day of good news and bad news. The good
news is that the counts were high enough to begin the next clinical
trial. The bad news is that there are none currently open at
TCH. They are checking with the clinical trial doctors at M.
D. Anderson Cancer Center to see if there is anything interesting
available there. Not much going on for the rest of the day. Jeri
felt good today. Getting those blood counts up must be helping.
I don't think she thought it helped much to have her Drill Sergeant Dad back
in town. She's upstairs finishing up cleaning her room right
now. I know she feels good because she's working hard and taking great
care to get everything in it's right place. She's organized the
shelves, the closets the tops of the furniture and even the floor. Mom
is amazed. Here are the counts:
|
Category (see
link for definitions)
|
Normal |
Adequate / Acceptable |
Jeri |
| Hemoglobin |
12 |
8 |
9.9 |
| Platelets |
250,000 |
100,000 |
148,000 |
| White Cells |
4, 000 - 10,000 |
4,000 |
3,700 |
| ANC (Absolute Neutrophil
Count) |
1,500-5,000 |
1,000 |
1,850 |
|
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Brit: brit@stickyshoe.com
Virg: virg@stickyshoe.com
This page last updated:
June 13, 2006
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