 | 4/1 - No April Fool's jokes in our house.
Jeri, Randi and I went to watch Virginia and her partner play in the finals
of a women's 3.5 doubles tennis tournament. They won.
Those of us that didn't use sunscreen got a bit burned. I guess that
would be me. The sun took a lot out of Jeri but we still had to do
today's walking. We went around the cul-de-sacs at both ends of
our streets. That's the longest Jeri has walked using the cane.
She did very well. Of course, I told her that I'm torturing her to
make sure I get my moneys worth out of her short unassisted walk. (See
March 10) |
| 4/2 - Most people in this time zone had their clocks
moved forward yesterday. Most people except Jeri. She forgot to
change hers. She had planned to sleep in a bit today. The clocks
were unreliable so she really slept in. Once she got out of bed, she
managed to do some studying. We also went out and walked around the
cul-de-sac when I got home from work. Virginia and Jeri head down to
the clinic tomorrow to check the blood counts again. Virginia's mother
and dad are planning on being in town tomorrow so I'll meet them somewhere
for lunch. I'm sure it will be good. Jeri and Virginia's taste
in restaurants has gotten more discriminating. That's what happens to
you when you haul a Zagat guide around. |
| 4/3 - It was a day of good news and bad news. The
good news is that Jeri's blood counts were high enough to enter the clinical
trial we had selected. The bad news is that the clinical trial is
temporarily closed to new entrants. Jeri has the option to wait a few
weeks and see if it opens back up. That wasn't a good choice because
the things on her lungs are still growing. We've selected a different
trial and now we get to do the blood tests all over again.....along with
various and sundry other scans. Those procedures will probably start
on Thursday and continue into the first part of next week. The
treadmill continues to grind. Here are the counts. Compare them
to December and there is definite improvement.
|
Category (see
link for definitions)
|
Normal |
Adequate / Acceptable |
Jeri |
| Hemoglobin |
12 |
8 |
11.8ñ |
| Platelets |
250,000 |
100,000 |
161,000ñ |
| White Cells |
4, 000 - 10,000 |
4,000 |
3,700ñ |
| ANC (Absolute Neutrophil
Count) |
1,500-5,000 |
1,000 |
2,400ñ |
|
| 4/4 - We heard from the clinic today about the other
program. Jeri will go to TCH and
the clinic for tests on Friday with a planned start date on Monday (April 9)
for the chemo. This is a clinical trial and dosage is one of the
things they are evaluating. In any event, they've told us that it will
be nowhere near the massive dosage Jeri has received over the past
year. That should mean that it's easier for Jeri to bear. Carboplatin
will be administered at TCH over a 3
hour period. She will spend the night in the hospital for monitoring
but thereafter, it should be on an outpatient basis. At least as long
as this path is pursued. The actual chemo treatments are at 3-week
intervals. She'll be taking a daily pill of Thalidomide
in between treatments. The Thalidomide
may make her drowsy. That remains to be seen. She will have
another chest CT-scan after the first
3 weeks to determine if the treatment is having a positive effect. Now
for other news of the day. Jeri had physical therapy and school.
She did well in both. She's complaining that the extra walking I've
had her do is too much. The physical therapist suggested that she
stretch after the walk. I don't think Jeri was too happy with that
suggestion. She's also going to school tomorrow. It's her last
chance before chemo and may be the last chance of this school year. |
| 4/5 - Jeri didn't make it to school today. She
didn't sleep well and wasn't up to it this morning. She caught some
more sleep and felt better as the day wore on. It's off to TCH
tomorrow to start the preparatory testing. Perhaps she spent time last
night thinking about what's about to begin. |
| 4/6 - Testing started today in preparation for Jeri's
next chemo. It's scheduled for Monday. She went to TCH
for a GFR test. That's a test of
her kidney's ability to clean her blood. While she was there, she got
a special tour of the new facilities that TCH
has built and planned for occupancy at the end of this month. They
were nice by comparison to the older rooms, of which she is all too
familiar. We hope she doesn't get to use them but that appears
inevitable at this stage. The test took 4 hours so there was time to
kill. She had physical therapy later in the afternoon. It's up
at our end of town. |
| 4/7 - Jeri got some last minute shopping in before the
next chemo. It was amazing. She went to a shoe store and didn't
buy any shoes. She made sure that I knew she had planned on using her
own money. |
| 4/8 - I took a few pictures of Jeri showing off her
hair. Thought we should get some in just in case it all goes away with
this next treatment. I also posted a few pictures of Jeri's trip to
Las Vegas with the Sunshine Kids.
They are all in the Photo Album. It was
mostly a quiet day. Jeri did her walking around the cul-de-sac.
She did a good job. Now it's time to start preparing for tomorrow's
trip to the clinic and, hopefully, TCH.
We received word today that Jeri's blood draw on Friday showed her ANC back
around 1,300 versus a required 1,500. It was 2.400 on Tuesday and
appears to have dropped. They will run the test again on Monday and
check again. Either it's going up and down like a yo-yo or there is
something strange happening to Jeri's blood. We'll see. She's
also due a CT-scan tomorrow.
If everything is ok, she'll check in to TCH
to receive the first dose of Carboplatin.
She'll stay for 24 hours under observation and have more blood tests.
She will receive future dosages over a 3 hour interval and be allowed to go
home with no overnight hospital stay if everything is ok. That should
be in about 3 weeks if all goes well. Jeri likes that part. Wish
her luck. |
| 4/9 - Jeri's ANC rebounded to 2000. She's receiving
treatment and will be home tomorrow. The treatment involves Jeri having
to swallow 10 gel caps. So far, the side effects are a bit
different. It put her right to sleep, and she's resting
comfortably. We're looking forward to her coming home tomorrow, so
that we can see what's in the big box she received today. - Randi |
| 4/10 - Jeri got out of the hospital today and was glad
to be home. After her chest CT-scan
yesterday, we headed over to the GCRC
unit at TCH. This is the unit that is responsible for all of the kids
doing experimental therapies. She took her first dose of Thalidomide
at 3 yesterday afternoon and by 4 , she was sound asleep. She didn't
wake up until 7am this morning. This morning, she got her first dose
of Carboplatin. She had no immediate side effects from that and was
feeling really good tonight...good enough that she and mom went for a stroll
around the cul-de-sac. Jeri will continue to take the Thalidomide
every evening before bedtime for the next three weeks. We will have to
visit the GCRC twice a week for exams and blood counts. After three
weeks, another chest CT-scan will be performed and the doctors will decide if the
drugs are doing what they are supposed to do. If they are, she will
repeat the three week treatment. If not, another treatment will be
started. Meanwhile, we are keeping a diary of how the Thalidomide
affects her sleeping habits for future dosage info. - Virg |
| 4/11 - Jeri had a rough start to her day. She is
not an early riser by nature but the Thalidomide in her system made it that
much harder. She felt some nausea first thing this morning but a dose
of Zofran fixed her right up. Because she was sooooo groggy this
morning, after consultation with her physical therapist, we changed her
Wednesday morning physical therapy session to a Wednesday afternoon physical
therapy session. She was still weak and groggy in the afternoon but
not nearly so severe. It should be interesting in the morning.
We have to leave by 8am for a 9am blood draw at the hospital. - Virg |
| 4/12 - Today's first stop was the GCRC
for Jeri's blood testing. That's a different routine. They've
usually gone to the clinic at the TCH
Cancer Center. The good news is that there is no waiting in the GCRC.
The bad news is that Jeri isn't as well known but it's a small staff and
they are learning quickly. I guess it's good that we won't hear any
news about the blood draw unless the news is bad. Is that good or
bad? While there, Jeri asked Dr. Berg
about the side effect of the Thalidomide.
It's left her extremely tired. Dr.
Berg said that most kids develop a resistance to the symptoms and that
Jeri should continue trying for a few more days. Anyway, it was off to
lunch at Churrascos.
The plan was to shop a sale at the local mall but Jeri was too tired.
She said it was pretty sad when she voluntarily gave up a chance to
shop. Now I think I know why she was so concerned about the drug's
side effects. |
| 4/13 - Good Friday and Friday the 13th on the same
day. Is that a paradox? Jeri didn't seem to notice. The
pills had her sleeping late again today. Of course, anyone with a
teenager would probably say that it's not necessarily caused by the
medication. It was a busy day once she got started. She went to
a friend's lunch and birthday party for the first part of the day. She
had physical therapy in the afternoon. She did well. Her dad,
me, always provides encouragement when he goes. Jeri just says he's
being pushy and unreasonable. Either way, she did well. |
| 4/14 - The pills had Jeri sleeping late once
again. She hasn't developed that resistance yet although she
demonstrated this evening that she can stay up after taking them. She
said the problem isn't staying up, it's getting up. Jeri's
contribution for the day was being the cook for dinner. She made
pizza. It was pretty tasty. |
| 4/15 - Happy Easter! In honor of the holiday,
Jeri felt that she should do no work today. Dad (me) had different
ideas. We went out this evening and walked our cul-de-sac and part of
the one opposite ours. Jeri made the whole trip using the cane and
without stopping. First time we haven't had to stop. She thought
that was all she could manage. The Thalidomide
keeps her feeling fatigued. |
| 4/16 - This was blood draw day at the GCRC.
We also got the information from last Thursday's blood draw. The
counts are still holding strong. Higher than expectations after Jeri's
previous experiences with chemo. They are good enough that they gave
her a week before she has to come back. She didn't get the cul-de-sac
walk in today. We had afternoon thunderstorms. I told Jeri that
we could go twice tomorrow to make it up. She wasn't impressed. |
| 4/17 - It was cool outside but Jeri did the cul-de-sac
walk anyway. We went farther than Sunday so she could make up some of
what we missed yesterday. She confessed that she hadn't gotten much
work in today. We took care of that. |
| 4/18 - Today has been a bit rough on Jeri. She's
felt fatigued and queasy all day. She had school and physical therapy
today so it wasn't a good day for feeling bad. She made it through
both and managed to do some walking with the cane before I got home from
work. She's taking it easy this evening. |
| 4/19 - Jeri was still fatigued today but not as bad as
yesterday. She went on her walk with no complaints and did well.
We also heard from the clinic today. Jeri will have her next CT-scan
one week from today on Thursday, April 26. We'll get an indication
whether this treatment is having a positive effect. I asked Jeri if
she had any strong feelings about whether it was working. I asked in
the context of whether she thought she needed to change treatment
regimens. She said that despite the fatigue, this one wasn't as bad as
the others. She said that she hadn't been nauseous yet and still had
her hair. All things considered, she's hoping for success. That
was what I wanted to hear. |
| 4/20 - Today's diary is not about Jeri. I just
learned that we lost Kevin Kyles
last Wednesday. Regular readers will remember that Kevin was fighting Osteosarcoma
and his diagnosis was a couple of months ahead of Jeri. Kevin's family
lost him last Wednesday evening. Please join us in saying a prayer for
Kevin and his family during this difficult time. The services were
today. a memorial has been established and those who wish to make a
contribution in Kevin's memory may do so to the Tulsa chapter of the Make-A-Wish
Foundation, 2825 E. Skelly Drive, Suite 824, Tulsa, OK 74105. |
| 4/21 - Jeri must have had more energy today. She
used her cane when we went to pick up lunch. She also used her cane to
navigate the restaurant we visited for supper. Then, to my surprise,
she told me she was ready for her walk when we got home. We went
farther than we've been on these walks. It has been a good day for
Jeri. |
| 4/22 - This was a quiet Sunday. Randi was at her
prom and parent sponsored all night party. Virginia had a tennis
tournament that ran to almost midnight. Jeri and I stayed up late
watching movies. We were all tired today except for Virginia who went
out bright an early for her tennis tournament. Being tired didn't keep
Jeri from walking with me this afternoon. She continues to do well and
kept a pretty good pace. Oh yes, for the record, Virginia's womens 3.5
doubles team won their tournament. |
| 4/23 - Jeri and Virg traveled to the Medical Center
today for the weekly exam and blood draw for Jeri. Her blood counts
are all good except for the platelets which have dropped
significantly. They are not low enough to need a platelet
transfusion. Thursday is the all-important chest scan when we will
discover if the treatment is having any affect on the cancer. |
| 4/24 - Today was a day with no school, PT, shopping or
anything else. Jeri was just plain pooped. She didn't even get
up until after 1. She did navigate her tour around the cul-de-sacs but
she had many rest breaks. |
| 4/25 - Virginia thought she would need a bomb to get
Jeri out of bed today. The Thalidomide
sure makes her a heavy sleeper. Jeri had a good day for school.
She also had an even better day at physical therapy. Dr.
Johnson, Jeri's orthopedic oncologist, has given the therapists the okay
to start working her without the cane or crutches. Jeri did some
walking without assistance along with her other exercises. She said
that her ankle was a little sore but that's all. I don't know if Dr.
Johnson realizes what her father will do with that bit of
information...... Actually, I won't be too hard on her. I'll
just continue to nag her to exercise early and often. |
| 4/26 - Well, Jeri and I went to TCH this morning for
her chest CT-scan and another blood draw. All of her blood counts are
down. The platelets continue to be a problem with that number coming
in at 16,000. Jeri didn't have to get a transfusion today, but if they
don't come up soon, she will. We got the results of the chest scan
this evening. It looks like the current treatment is ineffective
against her cancer. We are extremely disappointed. Since
it is not working, Jeri will get to discontinue the Thalidomide. The
doctor says she should start feeling better tomorrow and will be back to her
wide-awake self by Saturday. Her walk around the cul-de-sac was very
difficult tonight with a rest stop at every other mail box. Jeri is
definitely ready to feel better. Another treatment cannot be started
until all of her blood counts come back up. |
| 4/27 - The Thalidomide
has probably thrown Jeri's sleep
patterns for a temporary loop. She couldn't sleep at all last night
and while that made her very tired today, she is much more wide awake than
she has been in the last couple of weeks. She had a great physical
therapy session today with more walking with no cane or anything else.
The physical therapist gave the ok for Jeri to start doing part of her
cul-de-sac walking unaided. |
| 4/28 - Jeri did get a good nights sleep last night and
was feeling better today. She did quite a bit of walking around the
house with no cane and then did the cul-de-sac walk tonight with her
cane. She even cleaned her room today. (I'm so proud!) |
| 4/29 - Thanks to Virginia for the last few
updates. I went to the Texas Panhandle to see my Dad. It was a
long drive back to Houston today. I could think of nothing better upon
arrival than to get Jeri out and walking. She was willing to do so
with only minor complaining. We went on our usual walk and added a
little walking without the cane. She gave her obligatory protest and
then went along anyway. |
| 4/30 - Jeri managed to avoid a transfusion today.
Her platelets are hanging in there at 15,000. If they go any lower,
she will need a transfusion. Everything else is doing ok. Jeri
used her cane to navigate around the medical center today and thus managed
to avoid the dreaded cul-de-sac forced march. |
