Schedule of Events
 | 9/1 - Didn't get much more news at the clinic
today. The spots on the lungs are of grave concern. The current
chemotherapy regimen will be halted until the growths have been removed and
a biopsy done. This morning was a bit of a downer. The drive
home was a bit more subdued than the drive to the clinic. Jeri and
Virginia then went to lunch, did some grocery shopping and then it was off to
physical therapy. |
| 9/2 - Jeri slept in this morning since it was Saturday
and everything. She and Virginia went to lunch with one of Virginia's
friends. They then did a bit of shopping. Jeri bought a necklace
to go with a charm bracelet that one of our friends had given her. She
bought it with some of the retail therapy funds that she's received. I
got off easy today. Didn't even have to buy lunch. I was happy
for them to go out though. That way I could watch football in peace.
The other major happening of the day was the movement of Jeri's bed back up
to her room. She had been sleeping in our living room since her
surgery in May. She decided she was ready to return to her own
room. It's definitely more private. We tucked her in a few
minutes ago and I can say that she was really, really happy to be there
again. It's amazing how much some of the little things mean until they
are gone. Now those big things...... |
| 9/3 - Jeri and I had to work out the TV schedule for the
day. It was the start of professional football and I claimed the TV as
mine. Jeri decided that discretion was the better part of valor and
retired to our bedroom to watch TV. Good choice. She did her
exercises for the day while she was in there. She came back to the den
to read some of her school books. We kicked her upstairs to her room a
bit early to do some cleaning. We're trying to keep things as normal
as possible and cleaning her room was a normal ritual. I assisted, or
rather watched, while she did some weight bearing work while she was in her
room. She's upstairs reading right now. She got some books on
Friday and she's almost through all of them. She feels good and is
taking advantage of it. |
| 9/4 - Things were quiet around the house on this Labor
Day Holiday. Jeri slept late, again. Randi was out of town so
that left the rest of us on our own. We made a quick trip out this
afternoon for some light retail therapy. We cooked steaks on the grill
for dinner. I tuned in to Monday
Night Football after dinner. Jeri decided that it would be a good
time to go up to her room and get some quiet time. I tried to get her
to stay but she wouldn't have any of it. How could she be an offspring
of mine and not like football? |
| 9/5 - Today was clinic day and since Brit is back in
Oklahoma, Virg is doing the update. Jeri and I had a hectic
morning. We arrived at clinic at 8:15 and were taken immediately to a
room for labs to be drawn. Jeri was immediately examined by one of the
docs (Wow, we are two for two here!) She sent us to the pediatric
surgery dept. for the consultation about Jeri's upcoming surgery. The nurses
there paged the surgeon and said that he would be there in a
minute. I told them that we had a 10AM appt. for the bone scan
injection (where they inject the contrast liquid for the scan)
At five minutes to ten, I checked again with the nurse at the desk and found
out that the surgeon said that he could not be there until 45 minutes later,
so we said that we would come back after the injection. It took about
45 minutes to get through the paperwork and waiting in Diagnostic Imaging,
the waiting in line in Nuclear Medicine and then finally the
injection. We raced back to Pediatric Surgery and were relieved to
find that the surgeon had not shown up while we were gone. It actually
took him another 45 minutes before he showed up. These doctors all
seem to be highly qualified but time is a relatively unimportant issue to
them. Apparently, there are four small spots in Jeri's left lung but
the surgeon stated that he couldn't see anything on the CT-scan
that would
justify opening up the right lung. The surgery is tentatively
scheduled for Friday, Sept.15, depending on Jeri's counts. The surgery
will take approx, 2 hours and will necessitate a 4-5 day recovery period in
the hospital. After our visit with the surgeon we had one hour until
we had to be back at Nuclear Medicine for the bone scan
so we hauled out of the
parking garage and got another Mexican food fix in at Escelante's.
Then we raced back for the bone scan. We finished the
bone scan at 2:45 and
spent exactly 45 minutes driving back to our part of Houston for Jeri's Pt
appt at 3:30. Jeri's work had just begun but I finally could sit back
and breathe a sigh of relief. She was really strong today at PT and
walked with her crutches for quite a distance. We are finally home for
the evening and enjoying just kicking back. Counts for the day are:
|
Category (see
link for definitions)
|
Normal |
Adequate / Acceptable |
Jeri |
| Hemoglobin |
12 |
8 |
9.2 |
| Platelets |
250,000 |
100,000 |
27,000 |
| White Cells |
4, 000 - 10,000 |
4,000 |
1,900 |
| ANC (Absolute Neutrophil
Count) |
1,500-5,000 |
1,000 |
733 |
|
| 9/6 - This was a quiet day at home. Jeri had a
school lesson for a few hours and just took it easy. A nice break from
yesterday! |
| 9/7 - Today was another relatively quiet day. The
home health nurse came early this morning and did all of the labs here at
the house, saving us a trip to the clinic. Then Jeri and I went out to
lunch with a friend (mmmm) followed by physical therapy. Jeri walked
(with the aid of crutches) her longest distance so far. |
| 9/8 - Yesterday's blood counts were by the home
healthcare folks. The results are listed below. They are still
dropping. The white cells and ANC had been stimulated by the Neupogen
shots and platelets kept up by periodic transfusions. We don't know
where the bottom is but we do know that they have to come back up to a
certain level before the lung surgery can be cone. Anyway, yesterdays
counts are in the table below. Jeri had home schooling and physical
therapy today. Both went well. The first 6 weeks period of the
semester ends next week. Here are the counts:
|
Category (see
link for definitions)
|
Normal |
Adequate / Acceptable |
Jeri |
| Hemoglobin |
12 |
8 |
8.5 |
| Platelets |
250,000 |
100,000 |
32,000 |
| White Cells |
4, 000 - 10,000 |
4,000 |
1,800 |
| ANC (Absolute Neutrophil
Count) |
1,500-5,000 |
1,000 |
569 |
|
| 9/9 - All quiet today. Jeri is obviously feeling
stronger these days. She used her crutches for several trips up and down the
stairs. No schoolwork today, only physical
therapy. One of her friends is spending the night. It's always
nice to see her do a few normal things. She's trying to convince her
mom to take her out for a bit of retail therapy before the next
surgery. I'm all for shopping when the white blood cell count is high
enough. All for shopping, just not for buying. |
| 9/10 - Oops! This entry is not being completed
until Monday afternoon because Virg forgot last night! Brit took off
for a conference in Okla. early yesterday afternoon, Randi spent the day
with Chris, her boyfriend, and Jeri made me take her to the outlet mall in
Conroe for some retail therapy. (Those of you who know me better quit
laughing about somebody forcing me to go shopping.) While we were
there, we found treasures for all members of the family. (I bet you
can hardly wait to see what we got for you, Brit!) We had to cut the
shopping a little shorter than Jeri would have liked so that I could go play
tennis in the mixed doubles league. While I was gone, she was home
alone and completed her homework for today as well as her physical therapy
for the day. Since she can motor around so well now, she is relishing
any time that she can spend by herself. She went for so long without
any kind of privacy that she is really enjoying the luxury.
Fortunately, we have wonderful friends here in the neighborhood and Jeri has
a list of phone numbers to choose from if she needs anything while everyone
else is gone. It is a good compromise for both of us. |
| 9/11 - Jeri had a couple hours of school today and made
great progress in cleaning her room. Because everyone has been so
generous, she had lots of gifts to find spots for when she retook possession
of her room. Tomorrow is another clinic day followed by PT. |
| 9/12 - Well, Jeri and I buzzed through clinic in under
two hours today. The platelet count is on the upswing but the white
count and ANC are so low that we had to start the G-CSF
again tonight.
We still seem to be on track for surgery on Friday. Dr. Murali also
said today that the minute the surgeon says that Jeri is healed enough, the
next chemo will start. We just don't know when that will be yet.
Meanwhile, since we got out of clinic so early, Jeri MADE me go shopping
again. She wanted new bedding now that she is big teenage high
schooler. Of course, it took several hours to find just the right
colors and pattern but we were finally victorious and made it to PT by the
hairs of our chinny chin chins. She spent the evening preparing for
her school lesson tomorrow. The official counts are:
|
Category (see
link for definitions)
|
Normal |
Adequate / Acceptable |
Jeri |
| Hemoglobin |
12 |
8 |
8.4 |
| Platelets |
250,000 |
100,000 |
50,000 |
| White Cells |
4, 000 - 10,000 |
4,000 |
1,500 |
| ANC (Absolute Neutrophil
Count) |
1,500-5,000 |
1,000 |
273 |
|
| 9/13 - This was a home school day for Jeri and she got
the first six weeks grades: two 98s, two 99s and two 100s. Her
teacher continues to be impressed and would like to see what Jeri is capable
of when she is at full strength. Otherwise, Jeri was pretty tired
today...probably an overdose of shopping this week. My mom and dad got
in today and will be here to help out through this upcoming surgery.
Tomorrow, Jeri and I will head back to clinic for counts and then will find
out if they are high enough for surgery to occur on Friday. I hope
they are as it makes me nervous waiting to get those spots out of her lungs. |
| 9/14 - Well, it was another long day at clinic.
Jeri and I buzzed in there at 8:30 and the blood was finally drawn at
9. We then hustled out of there and went out to breakfast while the
lab did their thing. Jeri read the new Zagat survey (rating all of the
Houston restaurants) from cover to cover and chose the Buffalo
Grille as our
breakfast spot today. It was pretty good alright. After
breakfast, we called to see if the counts were back yet and they were!
Due to the G-CSF the last two days, the
white count and ANC were back in the
five figure range but the platelets were still low at 60,000. So, we
were told to come back to clinic so that Jeri could receive some
platelets. What I should have said was, "When you have the
platelets and are ready for us, give us a call and we'll be right
there." What I did say was, "We'll be right
there". Bad Mistake!! The platelets were ordered at 10am
but they didn't show up until 2pm. I managed to work two crossword
puzzles from the paper and read an entire book! Jeri got half of one
of her English books read. I think that I had more fun. After
the platelets were infused, we had to wait awhile before the blood counts
could be drawn again. If Jeri needs more platelets, they will be
infused tomorrow before surgery. We left the clinic at 4:45 and went
out to play in the rush hour traffic on the freeway. Just a fun fun
day! Brit made it in tonight. The surgery is scheduled for
10:30am tomorrow. We have to arrive by 8:30. The surgeon
estimates that the surgery will take two hours and Jeri will have to spend
4-5 days in the hospital afterwards. Jeri is mourning the temporary
end to retail therapy. |
| 9/15 - Jeri had surgery on her left lung today.
The surgeon was Dr. Nuchtern.
She's resting at TCH this evening in a room
on the 7th floor. It's a bit noisier than the controlled quiet of the Bone
Marrow Transplant Unit. The room is near the one she had following
the limb salvage surgery in May. More details are in the "I
Need a Stiff Drink" section. |
| 9/16 - Brit is staying with Jeri tonight so Virg is
doing the update. It was a long night last night after we got to the
hospital room. At 12:30am, Jeri mentioned that this surgery was a walk
in the park compared to the surgery last May. At 3:30am, she woke me
up again. She was frantic because she couldn't move her arms or
legs. She kept wanting the nurse and I to raise her head and once we
found the plug to the bed (too much stuff already plugged in), plugged it in
and raised the head to her bed, the problem seemed to resolve itself after a
few scary minutes. The doctors still don't know what caused this
problem. Jeri was experiencing another low blood pressure incident and
the two might be related but no one seems to know for sure. Whatever,
that was the end of any pretense of sleep for either Jeri or me for
awhile. She has had no more problems and everything seems to be going
as well as can be expected. Jeri says that this recovery might not be
quite the walk in the park that she thought. |
| 9/17 - No unusual incidents last night...thank
goodness. Jeri felt good enough today to eat a bit of solid
food. We did a bit of physical therapy while she was stuck in the
bed. She's has a tube in her chest that's hooked up to a machine that
helps drain fluids from her lung and also helps to inflate it. She'll
have it for a couple of more days. She's got a catheter to help her
use the bathroom. She's also hooked up to all kinds of electrodes to
monitor her vital signs. Nevertheless, she's still got that positive
attitude. But I digress....back to the physical therapy. I moved
her left leg for her and then she moved it some on her own. She did
well. Today was also the first time we've had her out of the bed and
sitting in a chair. She was supposed to do that for 30 minutes to an hour,
whatever was comfortable. She did it for close to two hours.
She's receiving a blood transfusion this evening. Her white counts and
ANC are coming up but everything else is still a bit low. Virginia is
spending the night while I head back to work tomorrow. |
| 9/18 - Today started out with pain. Jeri said it
was an 8 on her scale. That's pretty high. She takes a lot
without saying anything so when she does you know it really hurts. The
pain doctors were willing to step up her chest epidural
a bit since she had the blood transfusion yesterday. It helped.
She comfortable enough later in the day to eat lot's of solid good and do
her physical therapy....with an official physical therapist this time.
She had a Subway sandwich, and Wendy's shake and a large can of shoestring potatoes.
She was thankful to her mom for saving her from hospital food. Dr. Nuchtern
came by to check on her and said that the healing was going well. That
was good news for Dr. Murali.
He wants to get the next chemo started just as soon as Dr. Nuchtern
says Jeri is ready to go. |
| 9/19 - Jeri's recovery continues. She's keeping
up with her physical therapy and eating well. Dr. Nuchtern
came by to check on her. He says that he wants to leave the tube in
her chest for another day or two. That's a bit longer than expected
but not too surprising. Jeri's doing well enough that I'm going to
leave on a business trip for a couple of days while the "leaving is
good." Virginia is staying with Jeri. We'll have to see if
Randi is willing to do the updates. |
| 9/20 - Jeri felt tired and weak today, but she perked
up when the Olympics started at about 7. The chest tube is still
draining too much to remove...maybe tomorrow. We got the pathology
report back, eight of the nodules removed were metastasized tumor.
I'll be there to see her tomorrow. Visitors are welcome, but please
call first! - Randi |
| 9/21 - Jeri was in lots of pain this morning, but the
pain service came and fixed her up. She's been comfortable for the
rest of the day. They disconnected the suction machine from her chest
tube. We're going to see if the lung can stay inflated on its
own. A friend came to the hospital and decorated the room with lots of
butterfly balloons and gave Jeri her own Princess magic wand.
Warning: stay out of reach of the wand. She was very chipper
tonight and extremely feisty from what I could tell. When I got there
one of her good friends and her mom were also there making her day
better. I think overall it was a pretty good day! - Randi |
| 9/22 - Not much new today. Still waiting for the
chest tube to come out...and that's about it. - Randi |
| 9/23 - Jeri had been waking up in a lot of pain the
last couple of mornings and today was no different. The doctors
thought that she might be developing resistance to the drug in her epidural
line. They changed the formulation and it helped Jeri a lot. She
was back to herself today. She still has the tube in her chest. Dr. Nuchtern
is getting a bit concerned about how long it is taking. He's decided
that Jeri may be one of those people that does not ever quite finish
draining. He's clamped the line today to see how she does and perhaps
remove it tomorrow. Meanwhile, Dr. Murali
is going nuts. He wants to get the next chemo started as soon as
possible. Jeri's trying to negotiate a day at home before that
starts. Dr. Murali always has
trouble withstanding her charms. He's gone from a definite
"no" to a "we'll think about it." Jeri thinks the
progress is due to her superior negotiating skill;-) |
| 9/24 - Brit is spending the night with Jeri tonight so
I get to have a night at home. The chest tube still has not been
removed but is supposed to come out for sure tomorrow. The pain
service at TCH has been doing a great job of keeping Jeri as comfortable as
possible. She just wishes that they had better jokes! She chowed
down on Arby's roast beef, potato cakes and See's candies before I
left. She'll probably have her dad run around for supper too (and
wrest the tv remove from his hand to avoid those football games!) |
| 9/25 - The pain medicine is still working. Jeri
felt fine again overnight and this morning. The pain nurse came by
early this morning and Jeri tried to schedule an extra dose for when the
chest tube was being removed. He told her that he didn't think she
could have anything else since it was her lung that was involved. She
wasn't so sure about that. She had built up a lot of anticipation for
how painful it would be. It wasn't. Dr. Nuchtern
OK'd the removal of the chest tube this afternoon. It was a fairly
quick procedure. Jeri said it hurt but not near as much as she had
expected. Dr. Murali
has scheduled a CT-scan
in the morning so they will leave the epidural
in place for one more day. If the truth were known, Jeri could
probably use another day to let the soreness from her incision heal just a
bit more. We don't know if she'll be released before chemo
tomorrow. Dr. Murali
may be susceptible to Jeri's negotiating for a day away from the
hospital. Virginia told him that both of us recommended resisting
Jeri's plea and getting the new chemo regimen started as soon as
possible. We presume that the reason for the new CT-scan
is to make sure nothing else has grown since the surgery and to establish a
pre-chemo baseline. Virginia is spending the night. I'm headed
to Bartlesville. Randi will handle tomorrow's update. |
| 9/26 - The doctor's took out Jeri's epidural
today
after her chest scan. She negotiated a deal with Dr. Murali. She
was transferred to the sixth floor to start her chemo immediately, but she
also got a three hour pass to leave the hospital. So Mom and Jeri went
out to eat at Pappa's Seafood
House, did some window shopping in the
village, checked out the books at Barnes and Noble, and then headed
back to "Jeri's Jail". The results of the chest CT
shows that
there are now three or four new nodules in the right lung. The plan is
to eradicate those with this new chemo...hopefully. Otherwise, Jeri is
facing another lung surgery. - Randi |
| 9/28 - Jeri was a bit down in the dumps yesterday (Wednesday)
when the chemo started again. It's like starting all over again after
all this time. She was back up again by the evening. I think
she's earned some time to be worried. She's had such a great attitude
and that attitude is back. Today was just more of the chemo
routine. Jeri swears off eating and drinking while in chemo.
It's not usually a problem until she has to demonstrate both to be
released. I'm sure that she'll be showing them on Sunday that she can
do both. This chemo is different than before and has a new roadmap. I'll have to get it posted in a few days.
(Editor's note - it's there now as roadmap3)
The drugs are
new also, although one of them is related to one she's already had. |
| 9/29 - Today was a day for me to give Virginia some
relief at the hospital so she could get some time away. Jeri was
expecting to feel bad today. That's been the pattern with the past
chemo treatments. She normally begins to feel it in a big way after
the second treatment. She felt surprisingly good. In fact, she
felt good enough to participate in the 1st anniversary of the TCH
radio station, Radio Lollipop. Radio Lollipop is a low power radio
station that broadcasts a few evenings a week inside the hospital.
They were having a big deal of a celebration this morning and inviting all
the kids who felt up to it. They were advertising certain unnamed
special guests. Jeri and I went down and was it a crowd. The
first guests were members of the Bellaire Little League team that just won
the USA title at the Little League World Series. The second guest was
a local Houston group called Destiny's
Child. Jeri was familiar with them and had one of their
CD's. She got an autographed picture, "To Jeri.......," and
a CD. We were first in the autograph line. Neither one of us
wanted to stay around the crowd any longer than was necessary to tend to
business. Jeri spent the rest of the afternoon resting. It was
mostly sleeping. She had still not had the bad nausea that normally
comes. She was taking some medicine as a preventative measure.
Virginia came back for the night shift so I could go see Randi in her school
play. It's called "Into
the Woods" and Randi plays the witch. I think it's supposed
to be one of the main roles. I'll spend Saturday night with Jeri so
that Virginia can go to the play. Jeri is hoping to be able to see the
last performance on Monday. |
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Brit: brit@stickyshoe.com
Virg: virg@stickyshoe.com
This page last updated:
August 10, 2001
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