Daily Diary
September 1997

Friday, 5 September

  • Stephanie has been very happy and full of energy today.  Behaving as a normal healthy 4 year old getting ready for her birthday would.

Monday, 8 September

  • Today was Stephanie's birthday.  She is 5 years old.  We had a small party, only inviting here friend Angela from across the street.

Tuesday, 9 September

  • Went in to KRCC today for Bone Marrow biopsy.  The results will determine whether or not the Induction Phase of Stephanie's chemotherapy have been successful in killing off all of cancerous white blood cells in her blood and bone marrow.  Stephanie was pretty good about the whole thing, despite the screaming from the fear and pain.  Mom did OK too this time (the first time, despite being a nurse herself, she had to brought back in a wheelchair because she was feeling faint).
  • Stephanie's blood counts were very good this time - although still very low, she can more safely be around other people.
  • Although Stephanie is only due back to KGH on Thursday to be admitted for the next phase of chemo, Mom and Stephanie decided to stay at Almost Home for this evening and Wednesday.   That way, we won't have to leave from Trenton at 6:30 Thursday morning to make it to Kingston for 8:00.  As well, it'll give them a nice "mother and daughter" break.

Wednesday, 10 September

  • Linda called from Kingston this evening.  They had a great "normal" day.

Thursday, 11 September

  • Linda called me at work this morning.  The doctor had been by and confirmed that the results of Tuesday's bone marrow biopsy indicate that the leukemia is in remission.   This means that we can go into the next phase: Central Nervous System (CNS) Prop....  The first dose will start right away and is essentially a number of drugs, including metra.... to be given by IV over the next few days.  Stephanie will be in hospital till at least Saturday, but more likely till Sunday.
  • Linda called me at home this evening.  Everything is going OK.  They have three IV lines hooked up to Stephanie to pump in all of the fluids.

Friday, 12 September

  • Linda called from Kingston this evening.  Everything is going OK.

Saturday, 13 September

  • Left with Michael this afternoon for Kingston.  We going to stay at Almost Home so we can spend the the rest of the day in Kingston and hopefully return to Trenton tomorrow with everybody.
  • Stephanie's body has changed since I last her last Tuesday.  The latest drugs have really made her face even more puffy.  Even her temples are puffed up.  It doesn't bother her and she is still feeling fine otherwise.  As a matter of fact she's literally running down the hallways while pushing her IV pole.
  • She's going to let me stay with her for the night in her room.  Linda and Michael will stay at Almost Home.  We spend the evening reading books, watching movies and playing games and running to the bathroom - the IVs are pushing a lot of fluid through her and she needs to pee every 30 minutes or so.
  • Her temperature seems to be slowly creeping up - its just above 38 celcius.  As well, her urine is showing a little bit of blood.  The doctor ordered a urine sample to check if there's an infection - results will only be back in 24 to 48 hours.

Sunday, 14 September

  • Between the nurses coming in to take vitals, check IVs, draw blood, and Stephanie needing to get up to pee, I didn't get too much sleep.  The good news is that her temperature has come back down to normal on its own - a good sign.
  • By mid-afternoon, the blood results show that her body has adequately processed the Methotrexale from Thursday - we can go home till Tuesday.  Her blood counts are still quite high so she is not that succeptible to infection.
  • At home, Stephanie is feeling fine - well enough to go play in the park twice.

Monday, 15 September

  • Not much happened.

Tuesday, 16 September

  • Up at 6:30 AM, and by 7:30 AM we're off to Kingston for chemo via spinal tap.   Everything seemed to have gone well and by 2:30 PM we were ready to head back home to Trenton.
  • But, before we even got outside of Kingston city limits, Stephanie had thrown up several times.  We stopped and called back to the clinic to see if we should be worried but they could only tell us that today's chemo shouldn't be the cause.
  • Made it home to Trenton but by 5:30 PM Stephanie is still throwing up.  After a few phone calls back to the doctors in Kingston, we decide to bring her in to emergency at Kingston.  Wouldn't you know it, as soon as we get her back in the car she stops throwing up!  By 9:00 PM we're finally out of emergency (of course by now Stephanie is feeling just fine despite having done nothing to her), and decide to call it a day and stay overnight at Almost Home.

Wednesday, 17 September

  • Pretty uneventful so far today, its lunchtime and we're back in Trenton.  Her next scheduled chemo is Tuesday, 30 Sep.  Hopefully it'll be a good break for all of us.

Saturday, 27 September

  • Stephanie is still doing very well.  No fever and LOTS of energy!

Monday, 29 September

  • Stephanie is busy getting all of her stuff ready for tomorrow.  She's been explaining to me how she will be going to the clinic (KRCC) first, and then will make her way to the floor for her high dose methotraxate over the next few days.  As she is always thinking ahead, she explained to be me how she will ask the nurses to leave her IV inserted into her port-a-cath so they will only have to poke her once - pretty smart for a five year old!

Tuesday, 30 September

  • Up at 6:30 AM and off to Kingston at 7:30 AM.  Left Michael at Margarite's.   She'll make sure he gets on the school bus at 8:30.
  • Stephanie was sick in the car again.  Make it to the clinic by 9:00 AM.  Stephanie leads the way.  When it comes time to insert the IV needle into her port-a-cath, she doesn't cry at all - first time.   She explains to the nurse that she thinks it would be a good idea to leave the IV cause she'll be heading up to the floor shortly.
  • Finally made it to the floor (ie, her hostital bed) by 2:30 PM.  I have to leave for Trenton so I can be back by 4:00 PM to meet Michael coming back from school.   Linda will be staying with Stephanie for the next few days.