Daily Diary
January 1998

Sunday, 4 January

  • Got back from Ottawa today.

Monday, 5 January

  • Back to school for Stephanie and Michael today ... or is it?  Because of the weather, school was cancelled so they both got an extra day of vacation.  Back to work for me though!
  • Despite the weather, Linda's Dad drove Rene and Manon down from Ottawa so they can try to catch a service flight from here tomorrow morning.  At first, Michael was really happy because he would get to see his Uncle Rene one more time over the holidays.   But, unfortunately, because everybody was so busy preparing for tomorrow morning (them for their flight, us for Stephanie's visit to the clinic, Michael for his first day back to school), they didn't get to spend much time together.  Unfortunately he often loses out during all of this.

Tuesday, 6 January

  • Pretty hectic this morning.  At 7:30 this morning, Linda's Dad left with Rene and Manon (and their two kids) for the airport, while we left with Michael to drop of at friends so he could catch his bus at 8:30 and with Stephanie for the clinic in Kingston.   Miraculously we all got off on time.
  • Our trip to Kingston was a long one.  It was pretty foggy so we had to drive 80km and below (instead of the normal 100km).  And then, when we got close to Kingston the highway was closed because a truck carrying liquid hydrogen had rolled over.  As a result, traffic was backed up and we had to take a detour.  Got into the clinic around 9:30 just the same.
  • Stephanie's appointment today was for the first treatment of her Re-induction Phase.   This phase is essentially the same as her initial Induction Phase in terms of the types of drugs.  I think that the big difference is the amount of each of the drugs.   What it does mean, however, is that she will probably get the same side-effects that she got during the first month: loss of hair, weak muscles, increased appetite, etc.   Should be interesting as we've had it pretty easy the last month or two since the previous two phases have been relatively side-effect and complication free.
  • Today she got Doxarubicin and Vincrinstine via her IV and Asperaginese via a needle in the leg.  As well, she started on Dexamethose, another type of steroid.  The needle in the leg didn't go over well at all.  Hopefully its not a sign to come.
  • The trip home was pretty uneventful.  She didn't even throw up in the car.   However, just after supper, around 5:30, Stephanie mentionned that she didn't feel too good.  We gave her a gravol hoping that it would help.  Unfortunately it didn't help as around 6:30 she started throwing up.  Being Stephanie, it didn't bother her too much so we just kept on playing cards (Romoli).  By bedtime her stomach seemed to have calmed down so we put her to bed hoping she could get a good night's rest.  Unfortunately it didn't as she threw up a few more times.  One of the times, she was lying on her back, still asleep, or so it seemed, with her hand over her mouth (this is what she normally does so she can run to the bathroom and not throw up on the floor or couch, etc) and her mouth full of puke.  It sort of scared us so we moved her into our bed for the night so we could keep a closer eye on her.  She finally stopped around 2:00 in the morning and slept peacefully through what was left of the night.

Wednesday, 7 January

  • We figured yesterday's session was over, but we were wrong.  When it hadn't stopped by lunch time, the doctor recommended that we bring her in so she could get fluids and ? via IV.  We got to Kingston by about 1:00 in the afternoon and by 5:30 that evening she was "topped up" and ready to go home!  Unfortunately freezing rain had been falling all afternoon and the roads were litterally glare ice.  To play it safe, we decided to stay overnight at Almost Home.  We phoned Michael in Trenton to make sure that it was OK that he could stay with our next door neighbor.

Thursday, 8 January

  • Looking outside this morning, it looks like the ice storm was pretty bad.  The power went out in the middle of the night and is still out.  The road that we're on is closed off because there's a power line down across the street two houses down.   In the back yard, there used to be be some nice trees.  Most of the main branches have broken off.  Amazingly none of the cars parked around those trees were damaged.
  • Its lucky that Linda suggested that I park in the car port last night.  I hadn't realised, but where I normally park the car is right under a tree and some of its branches had fallen off.
  • The roads are all closed, its still freezing rain and they are forecasting more freezing rain tomorrow.  When we phoned Trenton to check on Michael, they hadn't got any freezing rain at all, just rain!  Stephanie has another appointment tommorow at the clinic so we figure we might as well to spend tonight here.
  • Stephanie spent most of the day crying, throwing up and sleeping.  She didn't want to take any of her pills.  I walked over the pharmacy at the Hospital hoping to be able to fill a prescription for Odansatron that we had gotten yesterday for Stephanie but it was closed because of the bad weather.  I was able to get some from the clinic. It didn't matter 'cause she wouldn't take that either.
  • The walk over there was interesting.  Normally its a nice walk through a nice park with lots of big old trees.  Today it looked like a war zone.  The trees looked like they had been exploded.  Most of the streets were closed off because trees had fallen and/or power lines were down.  I could see and hear big branches  falling as I walked along.  I had to pick my route carefully in order to avoid walking under the trees or over fallen power lines.
  • Some parts of Kingston still have power.
  • By 3:00 it looks like the power will not be restored and the temperature is falling inside the house.  By luck I was able to get a room at the Howard Johnson Hotel (one of the volunteers at Almost Home cancelled a reservation she had for some friends who weren't going to make it from Toronto).
  • I went out by foot to get food for supper at one of the few restaurants that's has power and is open.  After eating, Stephanie (and Linda) seem to be doing much better!   After supper, Stephanie finally agreed to take her morning pills.

Friday, 9 January

  • We all had a nice sleep last night.  We went to have breakfast this morning before heading out to the clinic (its just a  two minute drive from the hotel) but it made Stephanie feel sick and throw up.
  • The TV cable was back on this morning.  We hadn't realized it but Ottawa and Montreal is in even worse shape.  It looks like weather wise for Trenton/Kingston that the freezing rain will be letting up a little bit this afternoon.  Sounds like a good time to be make a break for Trenton.
  • Stephanie's appointment went OK - crying aside.  Its been so long since she had had needles.  Today was another Asparagenise needle in the other leg (she just had one of those earlier this week, on Tuesday).  Pill-wise, she seems to have given in that she has to take them; hopefully she go back to her routine of taking them almost on her own.
  • The trip back to Trenton was pretty uneventful.  We hit a lot of rain, but the temperature was just at or above zero so it wasn't freezing.
  • Found a surprise waiting for us in the basement however.  Because of all of the rain and because they didn't completely fill back in after they dug up our front lawn for the sewer lines, there was water seeping up through the floor.  Its not too bad (we can easily keep up by mopping up every hour or so) and its flowing directly into the floor drain so its not a big emergency.  There's nothing really that CE can do so it'll have to wait till Monday morning.

Saturday, 10 January

  • Took the Christmas tree and decorations down today.
  • Fixed up some of the flooding in the basement by drilling a hole throught the floor slab.  It relieved the pressure under the floor so that the water only comes up throught the hole I drilled.  The hole is about a foot away from the floor drain so while there's a constant stream of water running between the hole and the floor drain, the rest of the basement has quickly dried up.
  • Stephanie is doing much better today.  Still pretty hard to get her to take all of her medicine (she's finding a thousand and one excuses why she shouldn't take it and is trying to set up all sort of deals ... always after this, after that).  The Dexamethose is kicking in now and her appetite is really picking up, not to mention her energy level.

Sunday, 11 January

  • Medicine taking seems to be getting easier for her again.  The big problem seems to be the Dexamethose - they don't go down well and always get stuck in her throat and then she gags ... and unfortunately, she has two of them she has to take every morning.
  • We restarted Michael's aquarium again.  We picked up three fish this afternoon.   Tropical fish this time ... any bets as to how long it takes us to kill them this time?  Should be easier this time since we're using a heater in the tank!
  • Stephanie was in a really good mood all day.  The Dexamethose has really kicked in now.  Despite eating two big servings at supper, she woke up at 10:30 tonight and had to eat two slices of bread and a glass of milk.

Tuesday, 13 January

  • Stephanie didn't sleep very well at all last night.  She woke up around midnight and didn't really fall back asleep till about 5:00 this morning.  She was pretty good about the whole thing in that she kept herself busy all night reading.
  • We were in to Kingston for another appointment for Stephanie (same drugs as last Tuesday).  Stephanie was in a VERY good mood (despite not sleeping very well the night before).  The needle in her leg (Asparagenese) went very well.  She didn't cry at all.  We had rehearsed that while the needle went in, she would watch Linda or myself and would take turns saying the alphabet (ie, Linda would say "A", Stephanie would say "B", Linda would say "C", etc).  It worked well and I am sure that she will insist on doing the same way every time.
  • As for pills, Stephanie wanted to try taking them with ice cream.  She tried one spoonful with a pill ground up in it but didn't like it too much.  She found that if we just put the whole pill in a spoonful of ice cream she can get it down.  Note that she doesn't have this problem with all of her pills, just the Dexamethose.
  • Despite it being almost a week since last week's ice storm, Kingston still looks pretty bad.  A lot of places still don't have electricity.  Parts of the hospital were being used as temporary shelter for those people.  Hopefully  they can get everything fixed up soon.
  • Even though she ate lunch, Stephanie was a little bit hungry when it came time to leave for Trenton (around 2:30).  So, we stopped in to Kentucky Fried Chicken to pick up a "10 Pack".  By the time we got home, she had eaten 5 pieces!
  • Just as we were about to start eating supper (around 5:30), Stephanie said that she didn't feel very good and went to lie down.  Interestingly enough, this was how last week's throwing up started.  Fortunately, we had insisted on giving her Odansatron before her treatments.  In the end she didn't throw up.  Hopefully she'll get a good night's sleep.

Wednesday, 14 January

  • We'll be keeping Stephanie out of school for the next little while.  Because of the set of drugs she's on now, her (white blood cell) counts should drop drastically over the next few days.  Keeping her out of school will minimize her exposure to other sicknesses which she could now easily catch.  If she does catch anything, she'll have to be hospitalized and put on antibiotics via IV to help her fight it.
  • Not going to school doesn't seem to bother Stephanie at all, even though she loves it.   If anything, she is looking forward to having a tutor come to teach her again.

Thursday, 15 January

  • We finally got our first major snowfall that looks like it might stay ... for whatever is left of winter.
  • Pill taking is almost back to normal now.  The deal is that if she takes them 3 days in a row with no fuss, she gets a prize (a KinderEgg for now).  I think we're getting off easy.

Friday, 16 January

  • Back into Kingston today for another Asparaginese shot.  The ABC thing seems to be working real well.
  • Accessing her Port was kind of funny today.  There was another girl who was recently diagnosed and that had just had her Port put in yesterday.  We asked Stephanie if it was OK if she could watch while the nurse accessed (hooked up the needle/tubing to draw blood) Stephanie's port.  Normally Stephanie cries a little but because today she had an audience, her lip trembled, but she kept cool.
  • The blood results confirmed that her counts are low.  We are now back to trying to keep her quarantined away from other people.  She can go outside to play, but she shouldn't come into contact with other people or be in public areas.
  • The trip to and from Kingston went fine with Stephanie.  We had given her Odansatron so she didn't get sick at all.

Tuesday, 20 January

  • Back into Kingston today for same stuff as last Tuesday.  Her blood results for today confirm that her counts are still dropping (as was expected for this part of the protocol).  For the last few days, we've been taking the same precautions as we did in the beginning when her counts were low: washing the bathrooms every evening, and changing the hand towels and dish cloth towels daily.  Hopefully this will reduce the likelihood of infections.
  • Our pre and post medication with Odansatron (of Stephanie, not us!) is working out really well.  She has not been sick for quite a while now.
  • Pill taking has once again become a breaze for everyone again - although, we may have to invest heavily in the company that makes KinderEggs.  She is back to taking most of the pills and syrups almost on her own again - in some cases without even water.  The only one she really still has problems with are the two Dexamethose she has to take every day.  They really stick to her throat, even with water.  The best she has found is to take in with a mouthful of icecream.

Thursday, 22 January

  • Stephanie's tutor came in to teach her today.  Stephanie had a great time.   Over the past few days, she had been very busy and taking great pride in doing a Grade 1 activity book (in english).  Her tutor is very happy with her progression (in french) and told her how her Kindergarden teacher has asked her to really push her because she is learning so well.
  • Stephanie is continuing to eat a lot.  She has been easily eating servings that I would have trouble eating.  The Dexamethose has made very hyperactive during the days, although she is still under control, so its nice to see her so happy.  By bedtime, however, she is really beat and quickly settles down
  • I think we have Michael under the spell of KinderEggs now as well!  The deal is that he can't misbehave for more than 3 times during the day and that he must stretch his arm (that he broke) 20 times every day.  If he succeeds in doing both of these things for three days in a row, he gets one.  Its great! Yesterday evening he was actually sitting with Stephanie and playing Monopoly - just the two of them - they would normally be fighting!  As well, for two evenings in a row now, when I come home, he has been sitting at the table busy trying to finish his homework - instead of waiting till the last minute like he used to.  Now, if I could only get Linda hooked on them ...

Saturday, 24 January

  • Michael and I went skiing today (in Batawa).  Its not a big hill at all, but its a great size for a beginner like Michael.  We stayed on the bunny hill.  Michael had a great time as he met up with two of his close friends.  It was good to see Michael enjoying himself.
  • This evening, we sat around and watched some videos we took last year - the kids think that its better than watching movie videos!.  It was neat how Stephanie characterized the dates of the segments as "before I was sick".  We worked our way up to some of the videos of when Stephanie was just diagnosed and the first months of chemotherapy.  She really didn't look very good  - her hair was thinned right out and her face was puffed up.  It didn't seem to bother Stephanie at all to watch it.  As a matter of fact, she took great joy in narrating and explaining all the scenes.

Sunday, 25 January

  • Stephanie spent most of the day playing outside today.  Michael was over to one of his friends house.
  • Stephane's hair is falling out more now.  There are no bald patches yet, but it is starting to look thin.  Since it has only grown to about an inch long, it doesn't look that bad yet.  She had great joy in showing Michael and me that her eyelashes are falling out - I'm not convinced that they are falling out on their own, I think more that it's from her pulling on them to show us that they are falling out!
  • Linda had been using one of those lint remover brushes for clothes to clean up Stephanie's pillow  (she had been complaining that the fallen hair on her pillow was tickling her).  Anyway, this morning Stephanie asked Linda where that brush was.   Linda explained in great detail how it works only in one direction and that how going in the other direction removes the lint from brush and then sent her off upstairs to find it.  When she came back, Stephanie asked how her hair looked - she had used the brush to comb her own hair!  Of course, she didn't find our laughing too funny.

Tuesday, 27 January

  • It was a quick trip into Kingston today for Stephanie's treatment.  It was the same drugs via IV as last week.

Wednesday, 28 January

  • Stephanie's hair has really started to fall out out now.  This morning she had only a patch of hair left on the top of her head with a patch on either side of her head.   It looks pretty funny but we try not to laugh.

Thursday, 29 January

  • Stephanie decided to let Linda cut the little hair that's left.  Stephanie hates it when it falls out into her food.  Linda tried using the clippers but it left too much stubble.  They ended up shaving it off.  Stephanie thinks its pretty neat cause there's one or two small patches that feel like beard stubble.

Friday, 30 January

  • Michael had a final appointment in Kingston for his arm today.  He still doesn't have full motion in it, but the doctor says that the best therapy is just to make sure he uses it.  The bone is literally bent  around where it broke, but the doctor says that it straighten out over time.  The doctor didn't want to see him anymore, so unless he hurts it again, that's it for appointment.