Daily Diary
February 1998

Tuesday,10 February

  • Brought Stephanie to Kingston this morning so she could be admitted to Kingston General Hospital for some overnight chemo.  Since the protocol calls for chemo overnight tonight and then some on Thursday and Friday, Linda and Stephanie will stay in Kingston till Friday (they'll spend Wednesday and Thursday night at Almost Home).  I'll have Michael here in Trenton in the meantime.
  • I talked to Linda this evening. Everything is going fine.  The floor is really packed so Stephanie ended up getting a 4-bed room.  I doubt that either of them will get a half descent night of sleep.

Thursday, 12 February

  • Talked to Linda and Stephanie today.  I was right about them not being able to get a good night's rest Tuesday night.  Last night at Almost Home though, they were able to make up for it.  Stephanie is having a ball at Almost Home.  She really loves it when she gets a chance to stay there - it beats staying at the Hospital.  She likes it so much, they have planned to stay till Saturday.
  • Chemo this morning was quick - just a small bag.

Friday, 13 February

  • Linda and Stephanie are still in Kingston.  This morning's chemo was the same as yesterday's - quick and easy.
  • Next up for her is a spinal tap next Tuesday.  As a result, today she practiced with Ralph (one of the Child Life worker's puppet) giving him spinal taps.   Stephanie's last spinal tap really didn't go well and it was quite a while ago.   We're hoping that next Tuesday's will not be a big problem but its obvious that Stephanie is worried about it.

Saturday, 14 February

  • Picked up Linda and Stephanie this morning in Kingston.
  • Michael went off to a friend's house for a sleep over.  Linda, Stephanie and myself made a fondue supper, including a chocolat fondue for dessert.

Tuesday, 17 February

  • It was freezing rain this morning.  The roads looked like glare ice; the sidewalks were even worse.  According to the radio, Highway 401 was closed off in both directions at Napanee (about halfway between here and Kingston).  Although we could have called the clinic to tell them we couldn't make it, today's chemo is the beginning of a 4-day stretch, and postponing today will probably mess the schedule up.
  • Luckily, there was a train leaving Belleville for Kingston at 8:45 AM.  Stephanie was pretty excited, it was  her first time on the train.  After I put them on it, I called the clinic to let them know that they'll be a little late.
  • Since the train only took carry on luggage, they had to leave their week's food supplies (they are planning to stay at Almost Home for the week) here.  I'll have to try   to bring it down tomorrow, if the weather is better.
  • I talked to Linda this evening.  Despite the day's hectic start, everything went OK at the clinic today.  Stephanie had chemo via IV and via spinal tap.  The spinal tap went OK - just a little bit of crying.

Wednesday, 18 February

  • The weather was still pretty horrible today.  Just the same, a neighbor that was going down to Kingston for other business was happy to drop off Stephanie and Linda's food supplies for me.

Saturday, 21 February

  • I went to Kingston to pick Stephanie and Linda up today.  Stephanie's appetite has really decreased these last few days now that she is off Dexamethose.

Tuesday, 24 February

  • We went to Kingston today for Stephanie's chemo.  The spinal tap didn't go well again.  After the first few misses, Stephanie had to go pee - we normally get her to pee before it gets started, we forgot this time.  Halfway through the other set of misses, they had to take her IV out of her port because the nurses were holding her in such a tight ball that her knee was pushing against her chest where her port is.   Despite the crying, Stephanie kept very still and curled up, its just that it was hard to get the needle between the vertabraes.  In the end, it took two doctors and several tries.  Needless to say, afterwards, she was exhasted.  Just the same, in talking to her about it afterwards, it doesn't seem to have been too traumatic to her.   I guess that her crying is just her way of getting over the fear.
  • On a much happier note, Stephanie is very excited about becoming a "movie star"!  Almost Home has let some students of one of the Kingston Colleges put together a 10 minute video as one of their class projects.  Last week they asked us if they could feature Stephanie.  Stephanie was very excited and more than willing to do it when we asked her.   We'll be getting a copy of the final production and will circulate it to those who would like to see her first staring role.
  • So, this afternoon, right after her spinal tap, and before we drove back to Trenton, we stopped off at Almost Home for her first session.  They basically videotaped her helping one of the volunteers making cookies and then interviewed her (why she liked Almost Home, etc).  She was a little bit shy on camera, but hopefully it'll work out.
  • Michael is also very excited as the students will be coming to our house Friday to videotape some more of Stephanie as well as specifically Michael.  When we told him tonight, he said that he couldn't wait to tell his classmates.
  • In the end, today was quite a long day as we didn't get back till about 6:30PM.

Thursday, 26 February

  • Michael and Stephanie were quite excited tonight.  Tomorrow is Linda's birthday and we baked a cake for her while she was out at band practice.  We went over our plan as to how I will wake them up at 7:00 AM tomorrow morning so they can make breakfast for Linda.  Then, the idea is that they sneak back upstairs and pretend to be asleep until she gets up at 7:15 AM.  They'll follow her downstairs and yell Happy Birthday when she sees the breakfast already made on the table.  They also spent a good hour each making a card for her.
  • Michael is also quite excited because of the people coming over to videotape tomorrow afternoon.

Friday, 27 February

  • This morning's breakfast worked out pretty well.  Of course, Linda new what was going on because of all of the little feet stomping back and forth.  We also gave her the cake we made last night.
  • Stephanie started complaining of headaches and sore eyes about an hour after breakfast.   Shortly after she started throwing up.  By noon the throwing up stopped and her headache was gone.    We phoned the people for the videotape to tell them not to come today and that we'll reschedule for a later date.
  • Just the same, Stephanie still wanted to go outside to play - all of our snow is gone and the temperature reached almost 10 degrees today.
  • This evening Stephanie still wasn't feeling normal yet.  Her temperature was slowly creeping up to 38 degrees, but never quite reached it before it started coming back down again.  Maybe all of this is just her body trying to fight off a flu or something.
  • Linda slept with her in our bed just in case she started throwing up in her sleep.

Saturday, 28 February

  • Stephanie was feeling so so today.  She would run around playing for a while and then stop and hold her throw-up bowl under her mouth for a few minutes until the feeling went away.  We went outside for a while again since the weather has been so nice here.
  • Michael went over to a friend's house for a sleep over again.