Daily Diary
February 1999

Monday, 1 February (Day 25: WBC-2.0, HGB-?, Plat-26, Poly-2.03)

  • Stephanie is still doing pretty good but is still having some throwing up.  They think that it may be caused by some minor Graft vs Host Disease (GVHD) in her stomach.   In order to counteract it, they started Stephanie on Prednisone this afternoon.   We've been here before (and Stephanie knows it!) so we're ready for the increased appetite!

Tuesday, 2 February (Day 26: WBC-3.3, HGB-106, Plat-25)

  • The Prednisone is starting to kick in and Stephanie is getting hungry (and eating too!).

Wednesday, 3 February (Day 27: WBC-2.9, HGB-107, Plat-38, Poly-2.06)

  • Looks like platelets have finally kicked in this morning.
  • I tried to get my eye checked out so that I can get back on the floor.   Unfortunately, its still a little bit red so its still a no go.

Thursday, 4 February (Day 28: WBC-3.6, HGB-105, Plat-51)

  • Stephanie is doing very well.  The prednisone seems to be working in terms of making her eat as well as keeping it down.  As long as nothing happens overnight, she'll be able to go home tomorrow.

Friday, 5 February (Day 29: WBC-6.1, HGB-110, Plat-69, Poly-5.0)

  • It was a long day today.  A lot of waiting around for the right people to see us so that we would be allowed to leave.  Finally, by 4:00 PM we were off for Trenton!  
  • Basically, Stephanie is due back to Toronto 3 months after transplant (7 April).   In the meantime, she'll have weekly appointments in Kingston to check out her blood and adjust her oral medications.  Although her counts are rising, she is still under heavy doses of anti-rejection drugs (Cyclosporin).  As a result, she will be in isolation at home.  That means that she can't go out in public places and that we can't have people over.  Just the same, she is allowed outside, which I'm sure she'll remind us.  As well, we will need to be careful about what she eats.  They gave us a big list of what types of food she can eat.  Fast foods and fruits where you eat the skin are out because of the risk of infections.  Anything she eats has to be well cooked.

Sunday, 7 February (Day 31)

  • We had a nice first weekend at home in a long time.  It was neat watching Michael and Stephanie.  They actually got along!

Tuesday, 9 February (Day 33: WBC-6.8, HGB-115, Plat-151)

  • It was off to Kingston this morning.  Stephanie had a good time, seeing all of her old friends.
  • The initial blood results look good.  However, her cyclosporin and immunoglobin levels will only be available tomorrow.  The cyclosporin level will determine whether or not they have to adjust her cyclosporin dose (pills that she takes).  The immunoglobin level will determine whether or not they have to give her some via IV.   Just the same, we came back to Trenton and will call tomorrow morning to see if we have to go back down.

Wednesday, 10 February (Day 34)

  • Got a call from Kingston this morning.  Both her levels were OK, so no change.

Thursday, 11 February (Day 35)

  • Stephanie is still doing great.  The Prednisone is really working now.  She is continually eating and has not had any throwups.  Just the same, it does make her moody.  Otherwise, her and Linda have been keeping busy during the day doing schoolwork and crafts.

Wednesday, 17 February (Day 41)

  • Pretty simple day in Kingston today.  Just a blood sample and something called Pentamidine via IV.  Something about preventing something ... not sure.  Its something that she'll have to get every two weeks.
  • In taking the blood today, her Hickman could flush, but they couldn't get blood from it.   They ended up having to "poke" her in the hand to get it.  Hopefully next time it'll work.

Saturday, 20 February (Day 44)

  • Hmm, while Linda was changing the dressing on Stephanie's Hickman, the little external stitch that holds it in place came out.  As well, the tubing came out by about a quarter of an inch.  Kingston said that it wasn't anything to worry about as the dressing will hold everthing in place until her next appointment on Tuesday.

Tuesday, 23 February (Day 47: WBC-12.0, HGB-135, Plt-144)

  • Simple day in Kingston today.  Basically, it was only for blood samples.   Unfortunately, they couldn't get blood again from her Hickman so she had to get a "poke" again.
  • Just before leaving, the doctor had a look at Stephanie's Hickman to see if it was OK without the stitch holding it in.  When she gave it a little tug to see how solid it was in, it came out another quarter of an inch and she couldn't get it back in!   After a few minutes of playing with it, Stephanie's doctor finally said, "well, it'll have to come out eventually anyways" and pulled it out altogether!
  • Afterwards, Stephanie was really happy that it was out.  For one thing, now she can give big hugs (with the Hickman in, there are two big tubes that get in the way.
  • InMommyArms.jpg (4942 bytes) Day 47 - Hickman.jpg (9360 bytes)

Friday, 26 February (Day 50)

  • Stephanie had bad headaches last night and Linda ended up sleeping with her in her bed.   We're really worried because Stephanie's relapse last Oct started the same way.   We called her doctor in Kingston and she asked that we go out to see her so the can examine her.  After doing the normal battery of neurological tests (Stephanie has down pretty well now and actually has fun doing them!), Stephanie's doctor carefully explained that the headaches could either be a long term after affect of the cranial radiation whereby pressure builds up in the brain.  Or, the headaches could be because she is coming down with some virus (Michael had similar symptoms last week).   Or, the headaches could be the beginning of a relapse.  In the latter case, she explained that the only definitive way to determine whether or not she is having a relapse would be to do a lumbar puncture.  However, she even if she did a lumbar puncture and it showed that it was a relapse, it wouldn't be of any use because if Stephanie is really having a relapse this soon after the transplant, then there's really nothing the doctors can do.  In the end, she suggested that we sit it out for a few days and see what developes.
  • By bedtime tonight, Stephanie was feeling much better.  Her headaches were gone.   Hopefully it was just the same thing that Michael had last week.

Saturday, 27 February (Day 51)

  • Thankfully, Stephanie had a normal night last night and today she is back to her normal self!

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)