June '01
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Schedule of Events

bullet6/1 - 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.
bullet6/2 - 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.
bullet6/3 - 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.
bullet6/4 - 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.
bullet6/5 - 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.
bullet6/6 - 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.
bullet6/7 - 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.
bullet6/8 - 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.
bullet6/9 - 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 CenterTexas 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.
bullet6/10 - 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.
bullet6/11 - 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..............
bullet6/13 - 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.
bullet6/14 - 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.
bullet6/15 - 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.
bullet6/16 - 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.
bullet6/17 - 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.
bullet6/18 - 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.
bullet6/19 - 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.
bullet6/20 - 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.
bullet6/21 - 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.
bullet6/22 - 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.
bullet6/23 - 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.
bullet6/24 - 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.
bullet6/25 - 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.
bullet6/26 - 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!
bullet6/27 - 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.
bullet6/28 - Jeri's still lethargic and tired.
bullet6/29 - 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.
bullet6/30 - 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.

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Brit:    brit@stickyshoe.com

Virg:    virg@stickyshoe.com

This page last updated:  June 13, 2006