 | 7/1 - There was less pain this morning for Jeri but
it seemed to build as the day went on. That didn't deter her from
getting up to make lunch on her own (without aid of cane or crutches).
She also at well this evening. Nevertheless, she was exhausted and went
to sleep very early. |
| 7/2 - Tough day for Jeri. The painkillers, mostly
morphine, kept her out of it most of the day. She's visibly in pain at
times and hurts to the touch on parts of her back. She's supposed to
take Ritalin during the day to keep
her alert but she didn't want to today. She gets that iron willed
aversion to medications honestly. I think it comes from her father.
She came to life late this evening. Tomorrow is the next treatment at
M. D. Anderson Cancer Center. This is the next session of Liposomal Vincristine.
Virginia and Jeri will go in around 10:30am for preparation and get the chemo
administered around 1pm. They should be out of there before Houston rush
hour begins in anger. If they do, it will be the first time. My
mother had similar experiences when she spent time there. |
| 7/3 - Hooray! They made
it home before rush hour. For the first time in memory, someone I know
was treated at M. D. Anderson Cancer
Center and released before Houston's famous rush hour. OK, maybe
it's a bum rap. First, I was incorrect on my times yesterday. They
went in around 8:30am. The blood work was completed early so the chemo
started early as well. Jeri was finished before 1pm. That could
only mean one thing.....time for lunch. Jeri seemed to feel better
today. She was the Jeri we know and love with a good sense of humor and
biting wit. The staff and doctors at
M. D. Anderson Cancer Center got to see the real Jeri. Lunch was at
King
Fish Market. Jeri's was able to keep hers for about 10 minutes
after they left the restaurant. Oh well. That meant she was hungry
at suppertime. It was good to see her having a decent day for a change.
Jeri has a dilemma coming. I haven't mentioned it because it didn't seem
likely. The Sunshine Kids
have asked Jeri to join them to meet and great
*NSync at their concert on Friday. Meeting one of the mega-boy
bands in person and seeing a concert is something young girls dream about.
She just didn't see how she would feel up to it. Today she started
thinking it might be possible. We'll see if it's a trend or just a good
day. |
| 7/4 - Our Jeri showed through a bit more today. It was Independence
day. Jeri said that meant that we needed homemade ice cream and
fireworks to go with the BBQ. We had homemade lemonade as well.
She was tired most of the day but managed to summon enough energy to go
outside for the fireworks. It took a lot out of her. |
| 7/5 - Jeri came awake this evening. She said that
she rested all day so that she can be ready for the
*NSync concert tomorrow. She thinks she's going to be able to do
it. I hope she does. She's to meet with the Sunshine Kids
around 1:30pm. The concert isn't until the evening. It will be a
long day. She's going to take her wheelchair so that she has a place to
sit. I've also equipped her with a cell phone, just in case. |
| 7/6 - Jeri didn't make it. I got her up at 10:30am
to begin preparing to leave for the concert and she just didn't think she
could make it for 10 or 11 hours. I called the Sunshine Kids
as early as I could, just in case they could give the slot to someone else.
Jeri really wanted to go. She confirmed mid-afternoon that it was the
right decision to stay home. That's too bad. I'd rather be
negotiating with her on what time to be home like any other normal 15 year
old. |
| 7/7 - Another day in the chair watching TV, sleeping and
rarely getting up to eat or do important business. Virginia helped with
retail therapy by proxy. She went shopping for a couple of comfortable
shirts for Jeri. Jeri is hot. The air conditioners are turned down
low and ceiling fans are high. Jeri's most comfortable shirt is a long
sleeved tshirt. Virginia tried to find something that would be just as
comfortable but a bit cooler. I haven't heard Jeri pass judgment on them
yet. She hasn't said a word about missing yesterday's
*NSync concert. |
| 7/8 - Jeri is really struggling when she tries to move
out of the chair. It breaks my heart. We just don't know if it is
the continued deterioration of her lungs or combination of painkillers and
chemo. We're hoping for the latter. She's sleeping most of the
day. Occasionally she comes alive and we get to see and visit with Jeri.
She had the chance to spend time on the phone with one of her friends today.
Her friend called at a good time. Jeri immediately apologies for not
calling. Said she hadn't been felling well. She really enjoyed the
visit. |
| 7/9 - Jeri's having trouble breathing most of the time.
That brings mood swings as well. When she's down, she's down and when
she's up, she's Jeri. We do the best we can to make her comfortable but
that's not an easy thing these days. |
| 7/10 - Jeri spent most of her day sleeping and watching
movies with a brief visit from one of her friends. Tomorrow we head to
clinic for a check-up as well as a visit to the pain management specialists. |
| 7/11 - We had a very productive visit to the clinic
today. After the blood draw, we headed up to see the pain management
doctors. They were very thorough in their questioning and have changed
Jeri's medicines in order to meet her needs. Of course, only trial and
error will discover the correct combination of pain meds that will not only
give her pain relief but will also allow her to function during the day
without feeling draggy. They have also put Jeri on supplemental oxygen
to help with her shortness of breath. After we dropped the new
prescriptions off, we headed back to the pediatric clinic for her weekly exam.
Because we expressed concern about Jeri's increasing breathing difficulties
and the implication that maybe the current chemo is not effective, the
doctors went ahead and ordered a chest x-ray. We should find out the
results of that x-ray in the morning. If the test definitively shows
either an improvement in the lungs or more tumor growth in the lungs, then we
will go to plan B from there. If the x-ray is not definitive, Jeri will
have a CT-scan of the chest tomorrow. |
| 7/12 -
Dr. Jaffe called today. The x-ray
indicates that the tumor is continuing to grow. Someone from TCH
called and said that they had two new clinical trial that Jeri qualified for.
We'll start checking into them on Friday. Time is running short. |
| 7/13 - Jeri's alert and
feeling good almost all day. She's got a cough most of the time.
She can't get a deep and hard enough cough to dislodge things stuck in her
throat. Meanwhile, we've scheduled her to go back to the clinic at TCH
on Monday to have a consultation in anticipation of trying something
else....soon. |
| 7/14 - Jeri was alert again
most of today. She had a good appetite. We got takeout from
Outback Steakhouse. Jeri had prime rib. She ate well. Wish
the whole day went so well. She woke up this morning coughing and
eventually lost what little was in her tummy. It took a while for things
to calm down. She has so much trouble taking a deep breath and clearing
her throat that it is causing problems. She can only stand for a few
seconds at a time before getting short winded. |
| 7/15 - Jeri was invited to a
friends party. They wanted her to judge some of the contests. She
really, really wanted to go. As the time crept closer, she just felt
like she couldn't do it. It's 7:30pm and she's been sleeping for a
couple of hours. It's creepily quiet around the house when she doesn't
have the TV or music going. Randi and I head of to a family reunion
that's held every four years. Virginia and Jeri will have to handle
going to TCH on Monday. We'll
continue to pray that there are still treatments worth trying. |
| 7/16 - Jeri and I talked to
the doctors at TCH today and got all of the information on the protocols that
are open there. Jeri is scheduled to have her chest CT on Thursday
morning and then we will have a better idea of what lies ahead. |
| 7/17 - This was a sleepy day
for Jeri. Cocoa (the killer weiner dog) kept us up last night. I
guess the dog missed Randi and was anxious to share her woe with the rest of
the household at multiple times during the wee hours of the morning.
Jeri votes to send the dog to Siberia but I think that I will try something a
little less drastic tonight. |
| 7/18 - Cocoa slept better
last night and so did Jeri and I. Jeri's breathing problems are getting
worse with her having to stop and take breaths between every few words.
That makes for a tough day for her. Her appetite is still good and mom
does take all requests these days. Today it was for homemade
spaghetti...one of her favorites. |
| 7/19 - Jeri had her chest
CT
this morning and the visit just wore her out. She slept most of the
afternoon. We have an appointment with the doctors at
TCH for a
consultation on Tuesday. |
| 7/20 - Jeri and I enjoyed
visiting with friends from Norway today. Vicki, and her daughters, Kelli
and Amanda are staying with us for a few days. Jeri converses until she
gets tired and then we quiet down so that she can nap in peace. Jeri
requested take-out from RJ Goodies for lunch and Pappadeaux for supper.
She is in danger of becoming the take-out queen of the town. |
| 7/21 - This was a quiet day
for Jeri....a few movies...a little visiting...some napping...some Outback
takeout... |
| 7/23 - Randi and I made it
back from the family reunion today. Our friends from Norway are off
visiting others in the area. It's just the four of us here at home this
evening. Jeri has noticeably weakened in the week Randi and I were gone.
We to go the clinic at TCH for
consultation tomorrow. I'm scared about what we will hear. |
| 7/24 - We had the
consultation at TCH today. There are
no treatments planned nor does it appear that any are possible. Jeri's
breathing continues to get more difficult but she's maintaining a good
disposition most of the time. Even given the situation, Jeri remains a
very private person. Please call before requesting a visit to make sure
she's up to it. She's not talking much on the phone these days. |
| 7/25 - Jeri coughs a lot.
Her breathing pipes are constricted enough that her body thinks she's choking.
Add that to lower lung capacity and it's trouble. The good news is that
she can't cough hard enough to hurt her throat. The bad news is that she
never feels like she's cleared the obstruction. She had visitors this
afternoon. Her former dance teach stopped by, some of the neighbors and
then several of the kids in the neighborhood stopped by and had a prayer
circle in the front yard. The latter was difficult for me to face but I
did my best. My emotions are on edge and it's sometimes difficult to
contain them. However, Jeri wants none of it. I think she wants
her Dad to remain stoic.....my usual condition. Oh well. Maybe
later. |
| 7/26 - Jeri had a pretty
good day today. She had visits from a few friends and watched lots of
TV. She enjoys seeing her friends but remember to call first. She
can't really talk on the phone these days. Oh yes, I forgot to mention
that she received a nice package from Kay Sallee. Kay used one of her
connections to get Jeri an autographed picture and t-shirt from a
*NSync concert (see 7/5 and 7/6). |
| 7/27 - Not much change today. Jeri continues with breathing
difficulties. It also makes it difficult for her to talk. We had a
hospital bed delivered for her. She had requested one to try and get a
bit more comfortable. It came but was not what she was used to from the
hospital. It looks like the economy model. The mattress is hard,
it doesn't adjust much and it's noisy. She's back in my recliner and
we'll see if we can find something different tomorrow. |
| 7/28 - First, a public service announcement. The
server that hosts the stickyshoe website was down almost all day today.
We've received many concerned calls today worrying if something had happened.
The web server is hosted in New Jersey. It's nowhere near Houston so
problems there do not equate to problems here. As to our house, nothing much has changed. Jeri was visited by Christina. Christina
was one of the Sunshine Kids that
traveled to Las Vegas with Jeri back in March (see
3/11) |
| 7/29 - This wasn't a particularly good day. Jeri
didn't feel like visitors. That's why it's important to call before
stopping by. |
| 7/30 - The day was not going well when I got home from
work. Jeri was having difficulty taking the pain pills. No pain
pills meant plenty of pain. The people from the
Hospice were on the
scene though and making arrangements to change the medication. They
wanted to administer the medication in patch form. That was ok but it
was going to take up to 12 hours to start taking effect. That wasn't
going to do so they also came up with some short term help. They had
also made arrangements to have a different hospital bed delivered. By
8pm this evening, the bed had been delivered and the medication was taking
effect. The bed was definitely better. Jeri was comfortable enough
to watch the Miss Texas USA Pageant and have a piece of the pumpkin pie that
she requested. All in all, things were going much better by late
evening. Randi and Jeri are having a sleepover down in the living room.
That will be nice for Jeri as well. She's really enjoys the time with
her sister. Randi's been reading some of the old children's books each
night. I think it's movies tonight. This is a longer update note
than normal and it's only fitting that a day that ends well also have a nice
story that shows what an inspiration Jeri can be.
 | Partial Text of an email reprinted with permission:
"We owe you something of a minor miracle. When we stopped by to see Jeri at
TCH (ages ago), she had a magical effect on Lauren. Jeri was so positive
and upbeat (and bald :) ) that it put an immediate stop to all of Lauren's
negative whining about her awful life with juvenile diabetes. She has done
some very positive things since then, including representing the Gulf Coast
region at the Juvenile Diabetes Research Foundations Children's Congress in
DC in June. She met with our Senators and Representative, attended a Senate
hearing, and has had her eyes opened to the power of the political process.
¶ Look out! Please thank Jeri for
her part in Lauren's major attitude adjustment. It doesn't surprise me to
hear that she's still positive. ¶
What a great kid. Give her a hug (gently) from us." |
|
| 7/31 - It was another one of those days. Jeri
didn't get much sleep last night. Evidently, yesterday's pain medicine
never did take effect. Jeri had us fooled, that's for sure. That's
not unusual for Jeri. She's always had an unusually high tolerance for
pain, an iron will and an aversion to complaining. The
Hospice nurse
came by today and Jeri's pulse was through the roof. The switched her to
a pump and that did the trick. Jeri was able to sleep quite a bit this
afternoon and into the evening. She also got the lecture from the nurse
about telling us if she's in pain.
|
