Daily Diary
June 1999

Tuesday, 8 June (Day 152: WBC-4.1, HGB-129, Plt-180, Poly-1.86)

  • Stephanie is still doing very well.  Her appointment in Kingston today was pretty routine.  As part of weening off of the Cyclosporin, they reduced it to two pills in the morning (50mg) and only one at night (25mg).  Counts all look OK.

Friday, 11 June (Day 155)

  • We had a lot of fun tonight. In recognition of the the 75th aniversary of the Canadian Air Force, they had a sunset cermony at the local park.  Linda was in it and we got to watch.  Michael and Stephanie really liked the fire works.

Saturday, 12 June (Day 156)

  • We were supposed to go the Air Show today.  Unfortunately, when Stephanie was getting dressed this morning, we saw it: shingles.  The same thing happened last May so we weren't too concerned this time round.  When we called Kingston, they said that if it was shingles, Stephanie would have to go in hospital to receive Acyclovir via IV until the sores crust over.  Either way, they wanted to see Stephanie.  So, Linda and Michael went off to the Air Show, and Stephanie and I went to Kingston expecting to have her admitted.   As we had expected, it was shingles, so she was admitted.
  • Shingles is when the chicken pox virus reactivates itself.  This is normal for people with reduced immune systems, older people, etc.  In Stephanie's case, because her immune system is still suppressed because of the Cyclosporin, its not abnormal.  Just the same, she has to get the anti-biotic (Acyclovir) via IV, which means that she'll be in for a few days.

Sunday, 13 June (Day 157)

  • We switched this evening.  Linda caught a ride to Kingston to stay with Stephanie in hospital and I returned to Trenton to go to work and take care of Michael.

Tuesday, 15 June (Day 159: WBC-4.8, HGB-103, Plt-87, Poly-2.64)

  • I drove into Kingston this morning to pick up Stephanie and Linda.  She'll finish off her antibiotics for the Shingles by pill at home.
  • The Shingles this time round weren't nearly as bad as last time.  Stephanie is feeling excellent as has been her norm for the last few weeks.  Her little stay in the hospital didn't bother her one bit.

Tuesday, 22 June (Day 166: WBC-4.4, HGB-108, Plt-175, Poly-2.41)

  • It was another routine appointment for Stephanie in Kingston today.  All of her counts are still looking good and she's feeling excellent as well. 
  • Her weight is still slowly coming down and is now down to 24.8Kg (down from a high of 31.0Kg back in March).  Just the same, she's eating three meals, with snacks, a day.   It's just that she isn't eating big meals.  Hopefully her weight won't get too low as to cause problems.

Wednesday, 23 Jun (Day 167)

  • Today was Stephanie's last day of school.  Home school that is.  She passed grade 1 and will be able to start grade 2 this fall with her classmates!
  • With everything that was going on this school year for Stephanie (relapse and then bone marrow transplant), the school board was good enough to set up a tutor to come in and teach Stephanie for an hour or so three times a week.  We were very grateful because, being the least of our worries, we figured that at worst case she'd lose a year.  As it was, she was able to keep in touch with her classmates and keep up with the basic stuff.  Although she really liked not going to school, she is looking forward to starting this fall to be with her friends.

Wednesday, 30 Jun (Day 174: WBC-4.0, HGB-97, Plt-139, Poly-2.18)

  • Today was Stephanie's 6 month post-transplant checkup in Toronto.  We left at 6:30 AM and made it into Sick Kids Hospital by 9:00 AM.  We made it home for around 5:00 PM.
  • Overall there are no major problems to date.  Although she still had two more steps of reducing her Cyclosporin, they decided to stop it altogether as she has not shown any acute graph vs host to date.  With the Cyclosporin stopped, the only thing that she will be on now is two Penicillin pills a day and two Septra pills three times a week.
  • The only minor thing is still a rash on Stephanie's cheeks.  On good days, it just a whole bunch of small bumps.  On bad days, the bumps are red.  In order to see if its the Septra, they're going to temporarily switch her to an alternate drug for a few weeks (Dopsone).
  • The 6 month post-transplant point marks the time when we can stop most of the isolation procedures Stephanie has had to be submitted to.  The biggest thing that she was excited about was that now she is allowed to go to the pool  ... of course, we went tonight after we got home!

Day 0 was the day of the bone marrow transplant, Day 1 is the day after, etc.
WBC is the White Blood Cell Count (fights diseases).  Below 1.5 means that her immune system is very weak or non-existant.   (Normal= 4.5-13.5)
HGB is HemoGloBin or red blood cell count (carries nutrients).  Below 70 means a blood transfusion.  (Normal= 120-160)
Plt is the number of Platelets (stops bleeding). Below 20 means a platelet transfusion.  (Normal= 150-450)