Schedule of Events
 | 3/1 — Jeri came home today about 5:45pm. I went to the hospital to pick
Jeri and Virg up around 1:30pm. It took a while to get everything in order
to get her released. We’ll have to remember that this is hospital time,
not normal time. She’s still a bit weak but much better than the last
couple of days. Thanks go to everyone who has sent cards and things. Jeri
appreciates them as do we. It sure helped her spirits. I have now learned
that this particular treatment was worse than the next two. I’ll have to
get the treatment “road map” so that you connoisseurs of carcinogen
killing cocktails can do your own analysis. Jeri now has about 2 1/2 weeks
before the next treatment. During that time her blood counts are supposed to
plummet and then come back up. Meanwhile, Virg will give her shots everyday,
she’ll be giving blood samples and taking all kinds of pills for various
things. |
| 3/2 — A quiet day for a change. Jeri is resting at home and had her
first solid good in a while. Looks like she will keep it down. Virg had her
first experience at giving Jeri a shot. I spent the day at the office. It’s
something of a break but only until the next round. |
| 3/3 — Another good day today. The day started with a visit from the home
healthcare nurse. He took blood samples (they came out good). He did the
Heparin flush a bit fast and made Jeri sick at her stomach. That’s the
only time today. She was felling better than she had in days. She ate a bit
and also spent time with phone calls to some of her friends. |
| 3/4 — Jeri’s learning the value of setting small goals and attaining
them. We had a long discussion yesterday about setting a small goal and
then, no matter how many times you fail, staying at it until you succeed and
then setting the next one. She’s intrigued by the idea and realizes that
it will become more and more important as time goes on. Today she wanted to
go up the stairs on her crutches by herself. She did it going to bed this
evening. Today was also a day of other firsts. The wheelchair came. Don’t
know if we need it but the doctor suggested it might help later on when she
goes out. She also went out for a pedicure. Nice orange toenails. |
| 3/5 - Jeri says she's a bit stronger today. She had a bout with
nausea about 5am this morning. Didn't think she needed the nausea pill
last night. We'll do better tonight. She must be better because
she's asked for pizza for supper. |
| 3/6 - Another day and a bit stronger. She's had several good ones in
a row. That makes it difficult at times to remember that she has a
life threatening condition but it does come back to that, doesn't it.
Nevertheless, she's having good days but only by comparison to the day
before. She's a long way from the way she was before chemotherapy started.
More blood counts tomorrow and we'll see if this stuff is kicking in.
By the way, thanks to all of you that keep saying prayers for Jeri and
adding her to your prayer lists. Special thanks too, to Susan Brown,
one of our neighbors, who has been coming by every day to give Jeri her
daily shot of Neupogen............whatever that does. (Virg says it
stimulates the bone marrow to produce more white blood cells.) |
| 3/7 - The March 1 entry mentioned that the blood counts were supposed to
drop and then come back up. Today's blood test showed that the white
count is definitely down. The white blood cells are the ones that help
us fight infections. It's very common for chemotherapy to affect fast
growing cells. White blood cells are one of the fastest growing, e.g.
so they can quickly build to fight infection. Other fast growing cells
are things like other blood cells and hair. Dr. Murali called tonight
to check on Jeri and said that the white counts should be coming back up on
Thursday. There is another blood test scheduled for then and also a
visit to Dr. Murali at the clinic. Let's hope the white count comes
back up and that Jeri can avoid infection. Of course.....they tell us
not to worry but if she gets a fever, go ahead and RUSH to the hospital,
don't pass go, don't collect $200. That's comforting.....yeah
right. Here's the table for you closet and garage MD's. |
| Category (see
link for definitions) |
Normal |
Adequate / Acceptable |
Jeri |
| Hemoglobin |
12 |
8 |
11.1 |
| Platelets |
250,000 |
100,000 |
107,000 |
| White Cells |
4, 000 - 10,000 |
4,000 |
1,900 |
NOTE: I'm headed to Bartlesville for a couple of days. Don't know
if Virginia will keep the updates going. We'll see if her web acumen is
better than her shot giving ability. But I can't knock her too bad, she's
taking the hard job while I try to continue to earn a living.
| 3/9 - Well as you sharp-eyed web site readers noticed, I did not get an
update accomplished yesterday. I had great plans but you know how that
cliché goes. Jeri has a central line implanted in her chest through
which all of her medications go. This saves her from needle sticks
constantly during the chemo process. One of the daily procedures that
we have to do here at the house is a heparin
flush which just involves
inserting a syringe of heparin into the line to keep it open and free of
clotting. Well, last night I was going to do the flush and then update
the web site. But when I did the flush, the line was blocked and none
of the heparin was going in. Oh, no!! We called the doctor on
call in the oncology unit at the hospital and she said that it could be a
blood clot and we needed to bring her immediately to the emergency
room. So, we threw our clothes on and left for the hospital (a 45
minute drive). We arrived there about 10:30 and Jeri had to sit
outside with a mask on until they could find an isolation room for us (since
those counts were down, we sure didn't want her around sick kids!) That took
about 45 minutes and then we waited. About 12:30 AM, a nurse came in
and set that the pediatric surgeon was really backed up and did we mind if
he tried the flush. It flushed right away! The nurse told us
that sometimes, just changing body position can affect fluids entering the
line. So after all the worry and the prayers (which must have been
heard), we were dismissed and arrived home about 1:45. It was a long
night but we learned a couple of valuable lessons. (This on-the-job
training can be tough!) First, do the heparin
flush early in the day
so that if there is a problem, we can head to the clinic and be home in time
to keep up with our beauty sleep. Second, if the flush isn't working,
chase Jeri around the table or make her stand on her head or
something. (Well, maybe not quite that drastic a movement.) We
did get good news during our regularly scheduled clinic appt. this
morning. Jeri's counts are climbing back. I figured they must
have been because she is feeling pretty perky today. We got to go out
to lunch after our visit with all of her doctors and she ate a sandwich and
two cookies. She had lost 8 lbs. during this first chemo so she
definitely could stand to gain a few pounds. The docs say that if her
counts continue to improve, she will start her next round of chemo on
Tuesday. Thank you again to all you folks who are keeping Jeri in your
prayers! |
| 3/10 - I missed the adventure and am glad to be back.--BBP Today was
a great day! Jeri has her taste and appetite back. It was off to
Saltgrass Steakhouse for Jeri to get a Chicken Fried Steak. She must
be feeling better because that girl loves red meat. The rest of the
day was pretty much routine. We continue to hear from people that are
adding Jeri to their prayer lists. Like I said before, We'll take all
the help we can get. Thanks to everyone. |
| 3/12 - Yesterday was a good day and today seems like it is going ok.
Jeri has to use this awful mouthwash (Nystatin) four times a day in
preparation for the next chemo treatment. We've discovered that she
needs to do it before she eats because it is so nasty that it makes her sick
at her stomach. The next chemo treatment is Methotrexate. One of
the side effects is supposed to be mouth and throat sores. This
mouthwash is supposed to help prevent them. She'll also have to use
the mouthwash during the treatment. We're waiting on the results of
the last blood test to see if her counts are good enough to start the
treatment on Tuesday rather than waiting until Thursday. Finally, one
bit of bad news. We were hoping that Jeri would keep her hair but
looks like tis not to be. She's started showing signs of hair loss and
it's made her sad. Me too. The good news is that it will grow
back when the chemo is over. |
| 3/13 - Good day. A bit of eating out and shopping in preparation to
tomorrow's trip to the TCH clinic and hospital. They will take Jeri in
to do blood work and if everything is still ok, admit her for the next chemo
treatment. Randi and Jeri's grandfather, Poppy (My dad, Charlie
Parker), is headed to Houston in the morning to assist with the rotations at
the hospital and at home. It's going to be a rough next few
weeks. See the road map for
the schedule. |
| 3/14 - Jeri's visit to the clinic went well this morning. All
systems were go to check into the hospital and start the next round of
treatments. It took a few hours to get a hospital room. They are
working on hospital time, not normal time. To make the day, Virginia
got a call this morning from the hospital indicating that they had not
received certification from the insurance. Virginia called me and I
called the insurance company and everything worked out. Seems that
certification for inpatient chemo is something that they have to do for each
visit but that it is supposed to take place in the background and not be
evident to us. They say they'll get it right this time. Anyway,
Jeri's in the hospital and will receive 6 hours of liquids (hydration)
before actually receiving the drugs. The first is to treat the cancer
and the second is to "rescue" her. I hate it when they use
terms like that. We'll see how Jeri reacts tomorrow. Virginia is
taking the night shift and we'll hear from her tomorrow. |
| 3/15 - So far, so good. Jeri has not had the Methotrexate
treatment
and has had an ok day. She's awake and alter with much less nausea
than last time. Of course, that's a relative term because last time
was pretty bad. We'll have to see if there are further affects
overnight. This stuff is supposed to cause mouth and throat sores but
it will be another day or two before that develops. ETA for returning
home is probably Friday or perhaps Saturday. It's been a telephone
morning today. Jeri's first period class called her and everyone got
to talk. I think it was Ms. Waddell's speech class. She also
received a few more calls during the day from her friends. She
eventually wore down and had to get some rest but I can tell you, she
appreciates keeping in touch with her friends. |
| 3/16-17 - Catching up for two days now. Thursday was a
reasonably good day. Jeri still had some nausea but was feeling better
in the afternoon. Daddy got some popcorn and Jeri thought she would
give it a try...........and ate the whole box. Jeri and Virg sent
Daddy and me out for Long John Silvers food while they went to visit Jeri's
friend, Melanie Ellis (see - I Need a Stiff Drink.) We returned with
the food and Jeri said it tasted good but it didn't stay down.
Meanwhile, Jeri decided to remove some of the matted hair and see what
happened. She began pulling and couldn't resist being the clown.
She did her impersonations of everyone from rock stars with strange haircuts
to the guys that part their hair above their ear and comb it over their bald
head. Sorry I missed that one. I guess Virginia and some of the
nurses were entertained. Today was an ok day but still quite a bit of
nausea that kept Jeri from eating. The good news is that the Methotrexate
level in her body is dropping as it should. The 72 hour
blood measurements are at 2am Saturday morning and they should be
clear. That means that Jeri can come home as soon as she gets a
doctors release. She wants to come home and sleep in her own
bed. Virginia seconds that motion. We'll have to see how the
blood work turns out and how she feels before we know whether she can have
visitors. There have been many cards and packages in the mail in the
last few days. We've taken smaller things to the hospital but some
will surprise her when she gets home tomorrow. Can't tell everyone how
much we appreciate the generosity. It sure helps Jeri's spirits.
Once again, we'd also like to thank all of our friends, and their friends,
and their friends friends that keep adding Jeri to their prayer groups and
sending cards and letters. You all know who you are and we thank all
of you a bunch. |
| 3/18 - Hurry up and wait. That's the modus operandi of hospital
time. Jeri had her blood test at 2am and the Methotrexate
was 1/100 of
a point above what was needed to let her come home. They did another
test early in the morning and we were expecting to be able to leave the
hospital around 10am or so. Amazingly, the Methotrexate
reading went
up. Another test was scheduled. By now, we were getting
concerned that this was not going according to plan. Jeri and Virginia
were wanting to do a bit of shopping for a wig and were starting to get
concerned that this was not going as planned. Seems the wig place they
were wanting to use is closed on Sunday and Monday and Jeri is coming back
to the hospital for the next treatment on Tuesday. Nurses were called,
doctors came by and all were explaining to Jeri that it was in her interests
to make sure the drug levels were below a certain level. Meanwhile,
Jeri was in tears because she was feeling ok and wanting to get out of the
place as promised. Another test was taken at 2:30pm. Virginia
remembered to ask about the take home prescriptions and got an, "oh
yeah." Those take a couple of hours to get put together so we
better order them now. 4:30pm came and went and we began to think that
everyone was avoiding us. We went to check on the results and got
everyone scurrying around again. Sure enough, the results were higher
than before and the doctors and testers began to suspect the calibration of
their machines. Jeri was released and we got out of there around
5:30pm. No shopping for a wig today. We all came back to the
house and had French toast and sausage for supper at Jeri's request.
At least she is eating. And the moral of the story is.........don't
plan because cancer and chemotherapy don't work according to plan. The
corollary is that hospital time is never like normal time. |
| 3/19 - This was a pretty good day. Jeri got to sleep late-----in her
own bed. She has made it up and down the stairs using her crutches
with no help so she's feeling pretty good. It was several days before
she could do that when she had the Cisplatin
and Doxorubicin
treatment. She has a couple of weeks before she gets that one
again. According to the road map,
the next treatment is another round of Methotrexate. Jeri had a visit
from one of her friends. She had enough of an appetite to eat
well. She's not found the right hat so for now, she has a makeshift
"do-rag." That's hip hop for a bandana on your head.
I'm headed out of town for a few days so Virginia will have to make the
updates. She did ok last time. We'll see how she does this
week. Jeri goes back for a checkup and the next Methotrexate
treatment
on Tuesday. |
| 3/20 - This was another good day. Jeri was feeling pretty perky so
we all (Jeri, Virg, Charlie, Randi and her friend Trina) went out to eat
lunch. Then we cruised through Merle Norman and Bath and Body Works
for a little retail therapy (but it was only a little retail therapy,
Brit). That pretty well pooped Jeri out so we returned home. One
of Jeri's friends came by for a visit and now she is watching "Big
Daddy" with her grandpa. We have to be at the clinic at 9:30 in
the morning and if Jeri passes all of her tests, she will start round
3. She would really like a few more nights in her own bed with no
hospital smells present but she is anxious to get through all of this
chemo. Everyday there are more cards and gifts arriving in the mail as
well as phone calls, e-mails and visits. These really help to keep
Jeri's spirits up and we thank you all for your thoughtfulness. |
| 3/21-22 - Jeri went back on Tuesday for a checkup and admission to Texas
Children's Hospital for the next round of Methotrexate. Tuesday was a
good day. She was feeling good. She spent some time outside and
had barbeque for lunch. The barbeque was so good that she sent Daddy
out for another sandwich for supper. Then, Wednesday came after the
dose of chemo. Once again, she has severe nausea and feels bad all
over. The Adavan (sp) and Zopran (sp) just don't seem to be doing the
trick on the nausea. They tried something else this evening. I
don't recall the name of this one. Hope it gives her some
relief. I think that she's getting to the stage where she just wants
to get this over with so she can feel good again and is tired of putting up
the strong, stoic face to everyone. That's an understandable reaction,
particularly when her body is being wracked by the chemo treatments.
We'll rally behind her to get her through this. She's strong and
strong willed so I know that she'll get through it and get her determination
back once she starts to feel better. Hopefully tomorrow, after the Methotrexate
starts to be flushed from her body. We're hoping that she
can come home in a couple of days. |
| 3/23 - Today was a better day at the hospital. Jeri had the
"rescue" drug last night and evidently, the nausea relief
combinations began to work. Daddy and Jeri loaded up the wheelchair
with the IV tower and did some exploring. They went around the
hospital for a bit and then ventured outside for a spin. Jeri was able to
eat 1/2 of a grilled chicken, some popcorn and a coke or two.
She's also begun planning her days next week before the next treatment (Cisplatin and
Doxorubicin). It's a nasty one. I went by the
hospital this evening after returning from a day in Dallas. I was glad
to see Jeri and she was glad to see me. She was getting tired after a
busy day. She's also having some mood swings. That's one of the
side effects of the drugs. We can live with that one. It's a
much better choice than some of the other potential side effects. |
| 3/24 - Another reasonably good day for Jeri at TCH. She's still
having some mood swings but she's been up more than down. Her appetite
is back too. I got a call at the office about 2:30pm from Virginia
asking me to stop by Le Madeline to pick up some food for Jeri when I went
to the hospital. She still has high quality tastes. Jeri really,
really, really wants to come home. The Doctors are getting everything
ready so that she can leave just as soon as the level of Methotrexate
in her
blood is safe. The levels are coming down faster than last time so
we're hopeful. Her level last night was .22 versus .57 for the same
time last week. Don't ask me, ".22 of what." It's just
.22 and needs to be .1 before she can be released. They expect tonight's
reading (ca. 1am) to be there. Jeri says she's ready to go at 1am if
it's where it needs to be. I'm sure Virginia will let her sleep if at
all possible. We're hoping to avoid what happened on 3/18 and get her
out at a reasonable time tomorrow. She's ready and so are we. |
| 3/25 - Jeri and Virginia got home about 6:45am this morning. Jeri
called the nurse at 5am to get the overnight blood readings. The nurse
said they were ok and Jeri said, "we're outta here!" It took
a bit to unhook all of the IV stuff and it also turned out there was one
more doctor that had to sign off. Jeri kept hustling them along.
They stopped and picked up doughnuts on the way home. Nice to see that
they taste good to Jeri. They didn't the last time she tried them. |
| 3/26 - It's been an ok day. Jeri's still a bit wrung out from the
chemo but doing her best. She's eaten well. She's still got some
nausea and general queasiness but hanging in there. I try to keep
these writings positive but I think it's still worth remembering that these
drugs have done a number on Jeri. Her strength is very low.
She's also subject to mood swings. Nevertheless, she deserves a lot of
credit for not complaining or being difficult to live with. We should
all be as good when things aren't going well. |
| 3/27 - Jeri's nausea continues to be a problem. She lost it this
morning and has had a general queasiness most of the day. She remains
in good spirits.........and all of us, including Jeri, are glad she's home. |
| 3/28 - Today was a day for feeling good. Jeri went to school for a
couple of hours this morning to see some of her classmates. She was
glad to see them and they were glad to see her. Later in the day, she
had a facial and pedicure. Can't have a manicure because pressing her
fingernails is one of the ways the check circulation and they have to be
able to see through the nail. Reality prevails! |
| 3/29 - Today was Jeri's first day of home
schooling..............finally. I'm glad the medical community's bureaucrats
were quicker than the school's. Maybe that's a bit harsh but is has
been a while. OK, in fairness, it took time to get the paperwork done
but the teacher has been ready to go for a couple of weeks. She wanted
to be sure that Jeri was healthy enough physically and mentally. She
came today and I heard that it went very, very well. Someone else now
knows how bright Jeri is (parental pride, so are you Randi). Tomorrow
she goes back to the clinic at TCH and likely admitted for the next
treatment. This starts round two of a complete cycle just like the one
she finished last week. Check out the road
map for details. She's on week 5. Don't forget that this one
just goes up to the surgery. There is some fine print at the bottom of
page two that describes the post surgery options, depending on the success
of this phase. |
| 3/30 - The checkup at the clinic was good. Jeri's
blood counts were within normal range. Her strength in her left leg is
very good, even though she hasn't walked on it since late February.
The physical therapist and Doc's were impressed. They gave her a 5 on
the right leg and a 4+ on the left. She also has little pain left in
the area of the tumor. The doctors say it means that the treatments
are doing their thing. Of course we won't know for sure until it's
removed. It's looking good right now. Just wish she didn't have
to go through the chemo to get there. She was in good spirits all
day. We had lunch at Pappadeaux. Jeri was ready for something
with some flavor. After lunch, I went back to work while Virginia,
Jeri and Daddy partook of some retail therapy. I'm told that the
triangle of treatment is chemotherapy, physical and retail
therapy. Not sure if I'm getting the straight scoop on that one.
I think I'll check with Dr. Murali to
verify that it's on the road map.
Jeri checked into the hospital about 6:30pm and started hydrating. I
can tell you that tomorrow night's note will not be so pleasant. This
is nasty stuff and it hit her hard last time. |
| 3/31 - The day started out good. Jeri had breakfast from McDonalds
and her appetite was healthy. That was not too surprising. She
didn't start get hitting hard the last time she had these drugs until the
afternoon following the first treatment. That's pretty much what
happened today. By the time I got to the hospital, she was feeling the
effects of the anti-nausea drugs (making her drowsy) and the chemo.
She's feeling bad right now. It will probably be worse tomorrow.
They say she can come home whenever she starts drinking liquids again.
How encouraging. Let me restate that. Sarcasm doesn't come
through strong enough. How d_____ed encouraging. Stay tuned. |
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Brit: brit@stickyshoe.com
Virg: virg@stickyshoe.com
This page last updated:
August 10, 2001
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