 | 6/1 - The month started off with something of a
bang. I'll get to that but first some regular news. Today was
physical therapy day for Jeri. Jeri's Grandmother Mary took her.
I'll have to get the word about the results from her on Saturday. All
Jeri would say is that she did "fine." I'd think it was a
teenage word but I know where she learned it. One of her former
babysitting clients called and offered Jeri two tickets to Riverdance.
Jeri was excited since it involves lots of dance. There was only one
problem. Her mom was at a tennis tournament in Waco, her sister had play
practice and Dad was looking forward to an evening of NBA basketball and Astros
baseball. Being the only parent around, I made the sacrifice and went
to the show. It was actually pretty good. Jeri and I
enjoyed our evening and we thank SM for the tickets. The really good
news was that Jeri made the trip to the theater using her cane. No
crutches. This is the first time she's been out using the can for
anything but short walks. She made it around the theater including up
and down all kind of stairs. Wow! That was great. She was
tired by the time we got home. That was understandable. She's
raised her achievement level even higher now. |
| 6/2 - Jeri felt pretty good today. Her right foot
was a bit sore but she thought that was from sleeping on it funny rather than
last night's long walk. Sure enough, it loosened up after she walked
around for a while. I didn't try to get her to walk a long way today. |
| 6/3 - Jeri was still tired today. That didn't keep
her from getting out on a couple of trips with her sister. That was
about the extent of the activity. She watched a lot of TV in between
getting up to do some walking. |
| 6/4 - Today was clinic day or so we thought. Turns
out that Jeri didn't have to go to the clinic at all. They day wasn't
wasted though. They had planned a shopping trip at the Galleria.
No need to cancel that part of the trip. So shopping they went with Jeri
using her can instead of crutches. I'm not sure where they went but this
bit of retail therapy included a stop at
Betsey Johnson. I could tell
because of cut and fit of the garment. OK, so it was the name on the
sack that gave it away. Jeri was quick to remind me that she had used
her birthday money and that it didn't cost me anything. They even had
lunch at home. I had better say thanks to all who sent birthday money to
Jeri. Nothing like a bit of retail therapy to pick up a girl's spirits. |
| 6/5 - Jeri was feeling pretty
punky today and was very congested tonight. We are afraid that she might
be catching a cold. At least her blood counts are out of the danger
area. We still frighten easily around here though. |
| 6/6 - Jeri is still feeling
under the weather today. Her big field trip was walking to the mail box
and back today. Tomorrow, we have an appointment at M.
D. Anderson Cancer Center to talk
to the doctors there about possible treatments that Jeri might be eligible
for. We are still in search of that oh so elusive treatment that will be
the answer to our prayers. |
| 6/7 - Well, Jeri was feeling
better today...not great...but better. We did go to M.
D. Anderson Cancer Center.
It was a typical cancer clinic experience. We were there for three hours
with about five minutes of consultation. The plan is to get a new chest
CT-scan on Monday and then discuss options from there.
Dr. Jaffe suspects
that surgery might be the first plan of action but until the CT-scan is analyzed
that is only conjecture. Tonight, Jeri and Virg went to see the
Houston
Ballet production of Giselle. It was beautiful! Jeri did a lot of
walking with her cane and was very tired by the time we made it back to the
car. |
| 6/8 - Yesterday evening's
fatigue was nothing but a memory after Jeri got a good night's sleep.
She also seems to be over whatever was making her feel like she was getting a
cold. In fact, the day was going well until Virginia noticed the time
and realized that Jeri was supposed to be at physical therapy. Ooooops! Yes, she was coming in, we just
all forgot. That's the first time as far as I know. Jeri and
Virginia headed out. Fortunately, it takes less than 10 minutes to get
there. Jeri worked hard and has taken on a new exercise to build on the
progress she's making. They arrived home just before the rains started
here in Houston. It's late at night and it's still raining. We're
on high enough ground that we're fine. It's unfortunate that not
everyone can say that. |
| 6/9 - The raining continued
on through the night. Our house is dry and safe. One doesn't have
to go far to find streets under water and houses that have been flooded.
We were fortunate. The news broadcasts for the day indicated problems
with many of the hospitals in the Texas
Medical Center. Texas Children's
Hospital and M.
D. Anderson Cancer Center seemed to be the only two close to normal
operations. We were fortunate when so many others were not. Our
activities for the day centered around Jeri's older sister, Randi. We
attended her performance in the Applause Theater Company's production of "Hello
Dolly." Randi played the role of Dolly Gallagher Levi. We all
enjoyed her performance. Jeri used her cane for both the dinner and the
play. She's getting better and better with it. |
| 6/10 - Jeri took it easy
today. She did quite a bit of walking around the house. She even
made sure I noticed that she was doing it without her resident drill sergeant
nagging her to do it. She watched the NBA
playoffs this evening. She's rooting for the
Lakers. |
| 6/11 - The CT-scan
took place as scheduled at M.
D. Anderson Cancer Center. We were surprised that it wasn't
rescheduled given all the flooding that has taken place in Houston and around
the Texas
Medical Center. The underground parking garages were all closed.
Virginia and Jeri heard about damage to equipment in the basements of some of
the facilities. TCH was lucky.
They had recently moved to their new facility and transferred equipment from
the basement of their former facility. We don't know when Jeri will get
the results since we're not as experienced with
M. D. Anderson. Now that's a tough thing to say about
hospitals.............. |
| 6/13 - Oops! Both Brit
and I forgot to write yesterday's update. Jeri is again experiencing
pain in her lung area and has had to resort back to the morphine. She is
sleeping in Brit's recliner again as it is too painful for her to lie down.
We did receive the results of the chest
CT today. The doctors said that
because the tumors have grown so large and widespread in her lungs, surgery is
no longer an option. It is now doubly important to find a treatment that
will shrink the tumors so that they can be removed. Jeri will be going
to
M. D. Anderson on Friday for a bone scan and an echocardiogram in
preparation to start the next clinical trial. The trial will start as
soon as the tests are completed and a bed is available. Hospital beds
are in short supply since so many of the Medical Center facilities are not yet
operable. Dr. Jaffe has recommended a trial involving
VP16 (a drug that
Jeri has already had) in combination with Interferon. She will have to
be hospitalized for the first five days so that her reactions to the drugs can
be observed. |
| 6/14 - Another quiet day for
Jeri...she napped most of the afternoon. Between the mosquitoes and the
morphine, she feels really itchy all over. We found out that she will
not need the echocardiogram after all. That will shorten our day quite a
bit. We have a clinic appt. at 11am followed by the
bone scan injection
at 1:30 (where they inject the contrast dye) and then the actual bone scan at
3:30. Of course, those are just scheduled times....we have learned the
hard way that the actual times things happen in a hospital usually has no
correlation to the scheduled times. We are hoping to be surprised though
(Hope does spring eternal!) In any case, we will take plenty of reading
material. |
| 6/15 - The day didn't go
quite as planned. In fact, it wasn't anywhere near as planned.
Virginia and Jeri started at 11am and didn't get out of
M. D. Anderson until close to 6:45pm. They decided that TCH
kicked M.
D. Anderson Cancer Center's butt when it came to organization.
Jeri also decided that they also didn't have much experience dealing with
kids. Most of the doctors and nurses didn't want to listen to Jeri when
she described her prior treatments or methods of doing things, such as
flushing her central line.
Jeri's line is an apheresis line
which is a bit unusual. One person insisted it would have to be changed.
One said no problem. Another refused to listen to Jeri's instructions on
how much heparin was necessary to
flush the line. Most insisted that their test or procedure required
blood from her arm or an infusion in her arm. That was after a different
one wanted another procedure to clear the line. Then it turned out that
they didn't need the line for whatever it was someone else was going today.
They don't seem to have as good a central computer system as TCH.
Oh yes, TCH also has a new building that has just opened. It was quite a
day. They got the bone scan
completed, eventually. The consultation with
Dr. Jaffe was about the treatment
protocol that Jeri will receive. They discussed
VP16 with interferon and a Phase II
study of Liposomal Vincristine.
They liked the sound of the latter. It involved a shorter initial
hospital stay and the side effects sounded more tolerable to Jeri. She
had also already had VP16 without the
interferon and while it started out promising, had ultimately failed.
The treatment is supposed to start on Wednesday. |
| 6/16 - Jeri continues to surprise me. I
cannot imagine the kind of pain she's feeling, even with the painkillers they
adjusted yesterday. Nevertheless, she was still up for going out to eat
this evening and then going to Randi's play, "Hello
Dolly." (see 6/9) She did it without
crutches or cane. I was amazed. Her dear old dad the drill
sergeant was amazed that she could handle it as well as she did. My eyes
well up when I think of how hard she's worked, how far she's come and how far
she has yet to go. |
| 6/17 - Jeri continues to
amaze. She's upbeat and always asking everyone else if they are ok or
are having fun. She doesn't complain at all. She went to the mall
with her mom today for a bit of light shopping (her money). Once again
there was no cane or crutches. She needed a rest stop or two but that's
ok. She deserves it. |
| 6/18 - There is a meeting at
the M.
D. Anderson Cancer Center pediatric clinic tomorrow. We'll get the
results of the bone scan and learn about
procedures for admitting Jeri to the hospital on Wednesday. We're hoping
for good news on the bone scan after
having such difficult news on the CT-scan.
The main thing is to get started on something to stop the advancing killer.
Jeri and Virginia had lunch today with one of Virginia's friends. Jeri
handled it well until the car ride home. She had a nausea attach and
lost lunch. She was also pretty tired this afternoon but had more energy
by the evening. Enough energy to make her own supper. OK, so it
was leftovers. She tried sleeping in her own bed last night but it
didn't work out so well. She's back to sleeping in my chair in the
family room where she doesn't have to lay so flat. I just checked with
her a few minutes ago. She's reading a book and said that there is a
pretty good pain in her back. That's not good. I'll be glad to get
this next treatment started and hope that it brings her some relief from the
pain. She's been having the pain again since the 12th (see
6/13 entry). Now that we have some idea of what is
causing it, there are even more anxious moments around our house than before.
Every mannerism, noise, lack of noise, cough and so on cause all of us to be
on edge. Everyone except Jeri that is. She wants to keep on doing
things for herself. |
| 6/19 - There were good things and bad things about the M.
D. Anderson Cancer Center clinic visit today. The good thing is
that it was short for a change. I didn't know they actually let people
out before rush hour regardless of the appointed time. The bad news is
that they had not yet read Friday's bone scan.
Too bad Dr. Murali's reach
doesn't extend to
M. D. Anderson. He kept the people at
TCH on their toes when it came to Jeri.
They did get the blood work done and all the counts are in the normal range.
Everything is full speed ahead for an early morning ride to M.
D. Anderson Cancer Center to begin the Liposomal Vincristine
treatment. Here's a link to the
fact sheet on the clinical trial. |
| 6/20 - Long day. Jeri
had to be at the M.
D. Anderson Cancer Center pediatric day clinic at 7:30am. It's on
the other side of town so we got an early start. The actual treatment of Liposomal Vincristine
only took about an hour. The rest of the day Jeri rested and gave blood
samples. We finished about 6pm and were back home a little after 7pm.
The rush hour traffic had let up a bit so the ride home was reasonably quick.
Jeri still has pain in her chest and back. Between the painkillers and
chemo, she's been out of it most of the day. She's resting now.
The treatment will be every two weeks with clinic visits and blood samples
every week. The treatments may continue for quite a while if they start
showing results. The next CT-scan
will be about a month from today. That means 4 weeks of wondering if
this stuff is doing any good. Meanwhile, we got the good news that the bone scan
came out clean. |
| 6/21 - Jeri was tired and a
bit irritable today. That's ok. She's earned it. It's always
tough when they put poison in one's body. Tomorrow will hopefully be
better for her. |
| 6/22 - Jeri tried to go out
with her mom today but didn't make it very far. The heat was just too
much for her. She made it to a book store but was pretty exhausted by
the time she made it in the door. |
| 6/23 - The highlight of
Jeri's day was a visit by Jenny, her former dance teacher. The lowlight
was a trip to a music store. Jeri wanted to get out but didn't last
long. She was visibly in pain. In fact, she's been in pretty bad
pain all day. The morphine pills haven't helped all that much.
They have, however, granted her with some severe mood swings. We all
just have to remember that what we sometimes see is not Jeri but rather a
reaction to the medications. And that's all I'm going to say about that. |
| 6/24 - The pain continues.
This was the day for one of the touring Broadway musicals that Jeri wanted to
see. She talked her Mom into buying tickets for all of us a couple of
months ago. Unfortunately, today came and she just didn't feel that she
could do it. Virginia, Randi and Randi's boyfriend Chris went. I
stayed home with Jeri and we made fresh lemonade. I squeezed the lemons
and Jeri did the rest. |
| 6/25 - Not much happening
today. Jeri pretty much laid around today. Her mom said she showed
a sense of humor today. Jeri said it's because her mom wasn't as perky
as usual. Guess that's a good sign. Nevertheless, the pain
continues. She goes to M.
D. Anderson Cancer Center tomorrow for a blood draw. Nothing in
the way of treatment is scheduled. |
| 6/26 - This was a long day
at the clinic. Mom is tired and Jeri is exhausted (and already asleep).
We are both glad that we only have to go through this once a week! |
| 6/27 - Jeri just snoozed
through the day today. Yesterday's day at the clinic took a lot out of
her. We didn't want to wait any longer than we had to yesterday, so I
just took the prescriptions for her pain medicine with me to fill at the
neighborhood pharmacy. The only problem, as I discovered today, is that
the neighborhood pharmacies don't stock what the doctor prescribed. I
put in a call to the pain management clinic at M.
D. Anderson Cancer Center and got hold of a wonderful nurse who really
helped us out. She called the pharmacy to find out what they did have
and then had the doctor call the pharmacy with another prescription. It
all worked out but it is another lesson learned. Even though the pharmacy at M.
D. Anderson Cancer Center took forever to fill our prescriptions last
week (over four hours), we are just going to have to bite the bullet and fill
them there because they actually have all of the medication. |
| 6/28 - Jeri's still
lethargic and tired. |
| 6/29 - Jeri was still really
lethargic today. She ventured out for a pedicure this afternoon and
seemed to regain some of her spirit and humor after that. She was able
to sit at the dinner table with the family tonight rather than eating in
Brit's recliner. That little bit of activity wore her out and she fell
asleep early. |
| 6/30 - This was a lazy
weekend day. Jeri stayed the recliner most of the day. She had a
bit of nausea after dinner this evening. She needed to eat again to make
sure she kept something down. It was Jeri and Randi movie night tonight.
It was good to see the girls doing something together. |
