Daily Diary
April 1999

Sunday, 4 April (Day 87)

  • Easter today.  Stephanie spent most of the day wearing her "ears".
  • Stephanie is down to one 5mg Prednisone every other day.  As a result, her appetite is very reduced as compared to what is was a few weeks ago.  Although her face still looks really puffy, she is quickly losing a lot of the extra that she had gained.   Overall, Stephanie is feeling really well.
  • Day 87 - Easter Morning1.jpg (40810 bytes) Day 87 - Easter Morning2.jpg (41441 bytes) Day 87 - Easter Morning3.jpg (12156 bytes) Day 87 - Easter Supper.jpg (13598 bytes)

Monday, 5 April (Day 88)

  • A beautiful Spring day today.  Stephanie and Michael spent most of the day outside.
  • Day 88 - Stephanie1.jpg (11701 bytes) Day 88 - Stephanie2.jpg (11867 bytes)

Tuesday, 6 April (Day 89)

  • Stephanie stomach hasn't been feeling too good these past mornings.  This morning she threw up.  We're not too concerned at this point as in the past coming off of prednisone has caused some funny changes in her eating habits that have slowly came back to normal.

Wednesday, 7 April (Day 90: WBC-5.4, HGB-129, Plt-197, Poly-3.13)

  • It was into Toronto (Sick Kids Hospital) today for Stephanie's 3 month post transplant checkup.  Left Trenton at 6:00 AM to make it in for her 9:00 AM appointment.   Luckily, they weren't too backed up so we were heading back by 11:30.
  • On the way back, she threw up in the car.
  • As for the appointment, all of the news was good.  Basically, Stephanie is progressing as expected.  The next 3 months will focus on slowly reducing her cyclosporin (anti-rejection drug).
  • In terms of her other drugs, as of today, she's off pentamedine, prednisone and acyclovir.  However, she'll be starting on Septra (to prevent infection).   She'll be on Septra and Penicillin till next Jan (one year post-transplant).
  • In terms of her restrictions, although they have been reduced somewhat, Stephanie didn't get the news she wanted.  Stephanie's immune system is still suppressed so she still has to remain is "isolation" to a degree.  She still cannot go to school.   However, short excursions to public places is alright now, within reason.   Stephanie hoped to be able to go swimming but that's still out - too risky to catch something.  She's allowed outside to play now without a mask .... oops, we failed that one (we have always let her out outside without a mask).  However, definitely no kisses, licks or touching for now please - save them for when her immune system is stronger.
  • The other area that Stephanie was eager to get restrictions lifted was respect to food.   Although she would have REALLY have liked to start on fast food today (SUBWAY to be specific), they suggested we slowly phase that in starting next week.  Starting today, however, she is allowed to start on "thin-skinned" fruits (eg, apples, grapes - her favorite).  Unfortunately, when we finally gave her some grapes tonight, it was a big let down for her when after she tasted them she meekly said, "Mommy, I don't think I like them anymore ...".
  • At this point, the long-term plan is to carry on as if Stephanie has been "cured".   However, she is still at risk for having a relapse (as compared to the average person), but that risk will be slowly reduced as the years go on.   The good news from this morning is that should she have a relapse, she could be given another chance through a different type of transplant/cell therapy.  Otherwise, though, the long-term plan is to slowly reduce her cyclosporin over the next few months, continue her penicillin, start her on septra, and then monitor for side-effects from all of the other drugs and treatments while hoping that she doesn't have a relapse.

Saturday, 10 April (Day 93)

  • Stephanie pulled out a Bird Feeder craft that she had:
  • Day 93 - BirdFeeder1.jpg (13263 bytes) Day 93 - BirdFeeder2.jpg (11308 bytes) Day 93 - BirdFeeder3.jpg (10941 bytes) Day 93 - BirdFeeder4.jpg (12555 bytes)  Day 93 - BirdFeeder6.jpg (12460 bytes)

Tuesday, 13 April (Day 96: WBC-5.1, HGB-124,Plt-196)

  • Appointment in Kingston was pretty quick and easy this morning.  Just a blood samples and a quick talk with the Doctor.
  • Stephanie is still throwing up most mornings.  She still hasn't been eating much either.  Hopefully its just her pills that are upsetting her empty stomach.   There's not much the doctors can do at this point.

Saturday, 17 April (Day 100)

  • Stephanie finally agreed to try riding her bike without training wheels.  To her surprise, she was able to!  As she put it, "Maybe I already knew how to ride my bike without training wheels but just didn't know it sooner because I hadn't tried!".

Sunday, 25 April (Day 108)

  • First reduction of Cyclosporin today.  It means only two Cyclosporin in the morning (instead of three) and three at night.

Tuesday, 27 April (Day 110, WBC-3.8,HGB-123,Plt-198, Poly-1.8)

  • Appointment in Kingston was quick again.  Just blood and exam by doctor.   Stephanie's face has developed a rash which the doctor thinks might possibly be some delayed Host vs Graft.  They want us to try some ointment for this week and if it doesn't start clearing, they'll decide next week whether or not to send us to Toronto.
  • Stephanie is still not eating that well and is still throwing up in the morning and/or feeling nauseated.  As well, she hasn't been sleeping that well.  She has a little bit of sniffles and coughing, so that could be part of the problem as well.   All that, along with the fact her counts (WBC and Poly) are on a slow downwards trend have us a little bit worried.  Hopefully its a temporary reaction by her body as it slowly readjusts itself to normal.

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)