July '01
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Schedule of Events

bullet7/1 - 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.
bullet7/2 - 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.
bullet7/3 - 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.
bullet7/4 - 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.
bullet7/5 - 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.
bullet7/6 - 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.
bullet7/7 - 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.
bullet7/8 - 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.
bullet7/9 - 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.
bullet7/10 - 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.
bullet7/11 - 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.
bullet7/12 - 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.
bullet7/13 - 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.
bullet7/14 - 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.
bullet7/15 - 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.
bullet7/16 - 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.
bullet7/17 - 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.
bullet7/18 - 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.
bullet7/19 - 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.
bullet7/20 - 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.
bullet7/21 - This was a quiet day for Jeri....a few movies...a little visiting...some napping...some Outback takeout...
bullet7/23 - 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.
bullet7/24 - 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.
bullet7/25 - 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.
bullet7/26 - 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).
bullet7/27 - 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.
bullet7/28 - 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)
bullet7/29 - This wasn't a particularly good day.  Jeri didn't feel like visitors.  That's why it's important to call before stopping by.
bullet7/30 - 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.
bulletPartial 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."
bullet7/31 - 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.

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This page last updated:  June 13, 2006