Daily Diary
January 1999

Friday, 1 January

  • Stephanie still has lots of energy and was having fun hopping and skipping down the hall on her toes.  She's still allowed out of her room since her counts are not expected to drop until sometime next week.
  • She was sick this morning - normal with high dose chemo.  They gave her gravol, in addition to odansetron.  It did the job but knocked her out for the afternoon.   It was pretty funny when she woke up because she thought she had slept overnight but I didn't realize what she was talking about.  We finally worked it out.

Saturday, 2 January

  • Stephanie was a little bit sick this morning.
  • There was a big snow storm last night.  I was glad we weren't planning to go anywhere.
  • Stephanie has a little bit of a rash starting on her face.  The doctors are a little bit concerned as it could become a problem later.

Sunday, 3 January

  • Stephanie is still doing fine.  Although, she is still feeling nauseated now and then.
  • Her favorite thing these days is to sit in the window sill and look out over downtown Toronto - she looks pretty cute.

Monday, 4 January

  • Stephanie had her first whole body radiation session today.  They make her lie on her back on a table and then wrap her in a clean sheet.  Then they cover various parts of her body with blocks of radiation absorbing material that they pre-measured for last week.  The material looks and feels like hardened jello.  Its for the thinner parts of her body and helps ensure that her whole body gets the same amount of radiation.  The actual radiation exposure is about 2 minutes.  Then they make her lie on her stomach and repeat the procedure.
  • Stephanie will have one session today, two on Tuesday and Wednesday, and one final one Thursday morning, the day she will receive Michael's bone marrow.

Tuesday, 5 January

  • Made my way to Trenton this afternoon to pick up Michael.  I'll spend the night and make my back tomorrow with special cargo in hand.  Stephanie wants me to be extra careful with him, not so much that she loves him (which she does) but just as much that he has her bone marrow!
  • Got word today that we will be able to stay at the Ronald McDonald House.  We'll finally be able to unpack our bags and try to set up some sort of routine.

Wednesday, 6 January

  • We were able to get Michael and Stephanie together for a last time before she enters isolation.  Stephanie's radiation sessions are at Princess Margarite Hospital across the street so she is transported through the tunnel system to get there. 
  • Michael is pretty nervous about tomorrow.
  • Overall, Stephanie is still doing pretty good.  Her pancreous enzymes were up a little this morning so they did an ultrasound to check it out.  They'll monitor for now.  She was a little sick this morning again.

Thursday, 7 January (Day 0: WBC-0.3, HGB-87, Plt-90)

  • Linda took Michael in bright and early this morning for his donation.  He underwent general anethesia to have a total of 90 needles worth of bone marrow removed from his hip bone.  Michael came through great.  In the end, he was very brave about the whole thing.  He will, however, have to spend the night in hospital.  He has been throwing up since he came to - a common thing after being put to sleep.  They can't let him go until he stops.
  • As for Stephanie, she had her last radiation session this morning.  Early afternoon, we gave her a last shower and officially moved her into her isolation room.   From now on, we have to do a an official scrubbing in and put on a hospital gown whenever we go into her room.  Her room is sterilized once a day from ceiling to floor and she gets a sponge bath as well (not at the same time!).
  • Early evening, they started giving her Michael's bone marrow in the form of a blood transfusion.  There was no immediate reaction on her part.  Just the same, it will now be a matter of one to two weeks of waiting for his marrow to take root and start producing cells.

Friday, 8 January (Day 1: WBC-0.2, HGB-122, Plt-101)

  • Michael woke up feeling much better this morning.  He had no trouble eating breakfast and keeping it down.  By noon, they let him go.  Although his back is very tender, his worst complaint is a sore hand where he had his IV.  Just the same, we'll keep him here till Sunday when I'll drive him back to Trenton.
  • Both of them have been talking together a lot to each other over the past few days.   Since Michael is not allowed in to physically see Stephanie (she is in strict isolation), they have been talking over the phone.  They've worked out that if Stephanie does anything funny, weird or wrong from now on, it'll be because of the "Michael in her"!
  • Stephanie slept most of the evening which was good.  Unfortunately, when she woke up at 8:00 she wasn't ready to go back to sleep.  So, Michael and Linda went back the Ronald McDonald House while I stayed with Stephanie for the rest of the evening.  By midnight, she was ready to call it a night, so I left her and spent the rest of the night at Ronald McDonald's House as well.
  • Day 1 - Looking In.jpg Day 1 - Sleeping.jpg

Saturday, 9 January (Day 2: WBC-0.3, HGB-122, Plt-80)

  • Michael is being itched to death (from his big bandaid across his back).  Otherwise he seems OK.  Everybody has been telling him how much of a hero he is.  We agree.
  • Stephanie has been throwing up quite a lot today.  They're going to give her stuff to try to calm her stomach down a bit.  The problem is that there is nothing in her stomach to throw up (she has been on food via IV for the last few days).
  • Day 2 - Day Nap.jpg Day 2 - Hugging Mommy.jpg Day 2 - Listening to Mom & Nurse.jpg

Sunday, 10 January (Day 3: WBC-0.2, HGB-122, Plt-62)

  • Drove back to Trenton with Michael this evening.  The weather was horrible.
  • Day 3 - Blowing Up Glove.jpg Day 3 - Duck Mask.jpg Day 3 - Reading.jpg

Monday, 11 January (Day 4: WBC-0.2, HGB-125, Plt-48)

  • Stephanie was still throwing up on and off today.  The main concern seemed to be monitoring how much fluid was going in and how much was coming out.  In between she was basically in bed asleep or watching TV.
  • I let Michael soak in the tub for most of the morning.  We eventually worked off his big bandaid off his back.  Underneath, the needle marks don't look too bad.   I sent him off to school in the afternoon.  I think he'll be OK.
  • I hurried back to Toronto as soon as I could (Linda's Dad came down from Ottawa to stay with Michael in Trenton) to relieve Linda. She spent last night with Stephanie and hasn't had a rest yet (there is no bed for the parent in the room).  The plan for the next week or so is to have Linda stay with Stephanie during the day and I'll do the night shift.  Although Stephanie is doing relatively good right now, we feel that with her throwing up and and having to get up to pee, we would always like to have one of us there with her at all times.

Tuesday, 12 January (Day 5: WBC-0.2, HGB-112, Plat-22)

  • Stephanie had a good sleep yesterday evening and night.  Unfortunately it meant that she was up and roaring to go at 05:00 this morning - I wasn't.
  • Stephanie is starting to develop mouth sores and sores on her lips.  Normal at this stage.  The solution is give her morphine as required until her counts come up and her body takes care of it on its own in a week or two.
  • Stephanie's temperature was up a little bit this afternoon.  Normal at this stage.   They've started her on some anti-biotics to keep things under control.
  • They're still closely monitoring her fluid intake and output.  In order to make her pee, they give her something called colix.  It works pretty quick.
  • Day 5 - Playing Mancela at 0500 in the Morning.jpg (12674 bytes) Day 5 - A Smile for Uncle Jacques.jpg (10098 bytes) Day 5 - A Smile for Anne.jpg (10675 bytes)

Wednesday, 13 January (Day 6: WBC-0.1, HGB-106, Plat-5)

  • Stephanie had a really good sleep last night - despite the regular vitals and stuff that they do overnight.
  • Stephanie's platelets count was below 20 so they gave her a transfusion of platelets this morning.  The platelets help in clotting.  If they get too low, she could suffer internal bleeding.  Its normal and expected at this stage.
  • Stephanie was in a fairly good mood today despite her throat getting worse.  Her vomitting seems to have tapered a little bit which I think contributed to her good mood.   Just the same, they say that her throat and mouth will get worse before it gets better on its own (after her counts come up after her new bone marrow starts producing white blood cells).  The common practice is to put the kids on a morphine drip for the worse part of it.  We'll see how she is doing tomorrow.
  • Her temperature seems to have come back to normal under anti-biotics.
  • Stephanie's blood pressure was up a little bit this morning but has since come back down on its own.
  • They are still closely monitoring her fluid intake and output and forcing her body to keep up when required.
  • Stephanie was asking how much longer she would have to stay in the isolation room before being moved to a step-down room.  I explained to her that it depends on how quickly her counts start going up.  To cheer herself up, she asked if I could stuff a pillow case with other stuff so she could make a stuffed animal to hug while she slept tonight (one of the things that she is not allowed in the isolation room are stuffed animals since they can't be cleaned well enough).

Thursday, 14 January (Day 7: WBC-0.1, HGB-95, Plat-85)

  • It was a pretty quiet day for Stephanie today.  No big change from yesterday.   Basically its still sit and wait.  Her temperature is almost back to normal and nothing grew from the blood and urine cultures the other day so they are considering taking her off anti-biotics.
  • She has named her stuffed pillow "Lumpy".
  • The mouth sores and sore throat were getting to be too much for Stephanie so we went ahead and asked that they start the morphine drip.  At least this way its a constant lower dose instead of the as required higher doses they were giving before.  It seems to be helping a lot and it hasn't seemed to have changed her personality too much.  If anything, its made her calmer and relaxed.
  • Before going to sleep tonight, Stephanie was telling me about how Linda had tried to explain to her about her first operation (getting her port-a-cath in) before she had the operation.  She said that the more that mommy explained, the more scared she got.   It turned out that Linda hadn't explained that she would be put to sleep first!
  • Day 7 - Stephanie's White Board.jpg (9843 bytes)

Friday, 15 January (Day 8: WBC-0.2, HGB-93, Plat-59)

  • Another pretty quiet day for Stephanie.  The lingering concern is the fact that she is not peeing enough for the amount of fluid she is receiving via IV.  In order to try to reduce the amount of fluid she is receiving, they have started "pushing" some of her drugs strait into her IV instead of diluting it and running over a period of time through her IV.  This in combination with some medication to make her pee will hopefully get her through the next little while.
  • Stephanie was pretty tired tonight.  She didn't have a nap today.  She fell asleep in the middle of our Scrabble (for Juniors) game.

Saturday, 16 January (Day 9: WBC-0.2, HGB-95, Plat-46)

  • Still pretty much the same for Stephanie.  Still waiting for her WBC (white blood cell) count to start coming up.  She continues to have these funny throw-ups (which is normal for kids undergoing bone marrow transplants at this time).   What happens is that with the low counts and other drugs, she has developed sores in her mouth and throat.  I think they call it mucousitis (?spelling) - having to do with the mucous membranes.  It affects her eyes too - they're leaking a little bit.  The morphine is doing the job in that it makes her mellow enough to not notice the pain but is awake enough to talk and play with us (or is it the other way around, we are talking and playing with her!?).  Just the same, she still doesn't like swallowing past it.  Stephanie has stopped eating a long time ago, she's been getting her food via IV (TPN - total parental nutrician).  So, when she throws up, or more like gags-up, its just some of the natural fluids that have accumulated, clear and frothy during the day, yellow and slimy during the night.  Sounds yucky, which it is, but its usually over fairly quickly, and Stephanie goes on with whatever she was doing.
  • We have routine set up where Linda will stay with Stephanie from about 09:00 in the morning till 09:00 at night.  I then stay up with her from 09:00 at night till 09:00 the next morning in case she wakes up during the night (I sleep during the day at Ronald McDonald House).  Stephanie is sleeping relatively well these days, but there have been a few nights where she's woken up at weird hours, wanting to play something.  The other thing at night is that that is when they usually give her the stuff to make her pee.   It works within 30 minutes and makes her want to pee NOW.  Usually twice within the half-hour.
  • During the day, Stephanie always looks forward to her session with the (Sick Kids) teacher that comes in.  As well, she regularly works on some stuff that I brought from her school in Trenton.  In addition to all her school work, Stephanie has also been spending a lot of time on playing computer games from the "The Learning Company" series.  She plays Math Journey (for grades 1-3), Math (ages 6-9), Reading (ages 6-9), Writing & Creativity Centre (ages 6-10) and Super Solvers Gizmos & Gadgets.
  • Today, she spent some time playing the game called "Operation".  Its the one where you have to take little things out of a person with tweezers and if you touch the side, the patient's nose lights up and buzzes ... makes us all jump every time!
  • Day 9 - Operation Game.jpg (11756 bytes)

Sunday, 17 January (Day 10: WBC-0.1, HGB-92, Plt-32)

  • An OK day.  Nothing really to add!

Monday, 18 January (Day 11: WBC-0.2, HGB-92, Plt-17)

  • Stephanie got off to a really slow start this morning.  She had a big nap yesterday afternoon and so didn't feel like going to bed till about 1:00 this morning.  As a result, she ended up sleeping in till this morning till her teacher showed up ... around 11:00.  Once she got up though, she was in a great mood all day.
  • Platelets were low again this morning so Stephanie got platelet transfusion.  In order to cut down on fluids entering her body, they were "push" instead of "hung".  Push means that they were spun to remove some of the extra fluids on them.  Push means that they were injected with a suringe directly into her main IV line (instead of hanging a bag and dripping it in).
  • Talked with the doctors this morning.  Everything is still progressing normally.   They say that we should start seeing signs of Michael's bone marrow starting to grow around Days 20 to 30.  That should show itself by Stephanie's WBC (and neutraphil) count going up.  Within about 5 days after that, once her WBC or neutraphil count (not sure which one) reaches 0.5, she should be able to be moved out of her isolation room and into a step-down room.
  • In the meantime, despite there being some imbalance in her fluid intake/output, they are not too worried about her kidneys yet.  All their other tests are showing that they are doing fine, so for now, its just one of those things.  Actually over the last day and today, she seems to be peeing quite more frequently on her own. 
  • Her temperature has been really normal and stable over the last few days.  Because of that and because all the cultures came back negative, they have decided to take her off anti-biotics early instead of leaving her on for the normal 7 days.  As a precautionary, they took chest xrays this afternoon to make sure that the low grade temperature that she had developed a few days ago wasn't because of a fungal infection in her lungs.

Tuesday, 19 January (Day 12: WBC-0.1, HGB-117, Plt-64)

  • Stephanie seems to be doing fine.  She's off anti-biotics and her temperature has stayed normal.  She's off the morphine and she hasn't complained of her throat hurting her.  She's still spitting stuff up but its only about twice a day.  She has developed a little bit of a stuffy nose and sneezes.  They're keeping a close eye on it.
  • Posie the clown stopped by.  Stephanie especially liked the magnetic balls she had.
  • Day 12 - Posie the Clown.jpg (14531 bytes)

Wednesday, 20 January (Day 13: WBC-0.2, HGB-89, Plt-35)

  • Stephanie was a little bit funny last night, this morning, and today.  Last night she complained about not being able to sleep because of being scared.  She woke up this morning at 05:00 and ended up playing nintendo because she couldn't sleep anymore.   Tonight was the same, but she is asleep for now.  We'll see how it goes overnight.  As well, she was complaining about sore ankles.  Overall she seems very anxious. 
  • They say that the sleeplessness could be the result of coming off morphine, although she really hadn't been on it long enough to cause after-effects.  They say that the sore ankles could be a result of starting on GCSF (a white blood cell growth stimulant) a few days ago.  We'll have to wait and see if anything more comes out of either symptoms.
  • Stephanie has been talking a lot about when will she able to get out of her isolation room.  She's pretty well confined to her bed (albeit not necessarily only lying in it) because she isn't allowed to walk on the floor.  Slippers wouldn't help because once she wore them on the floor, we wouldn't be able to put them back on her unless we washed them again (the floor is considered a "dirty" area in her floor and they are pretty adamant that anything that touches the floor becomes "dirty").   She's been in here for 14 days now and she is, with reason, anxious to GET OUT!!
  • Day 13 - Nintendo at Six.jpg (12749 bytes)

Thursday, 21 January (Day 14: WBC-0.2, HGB-86, Plt-23)

  • Stephanie had a good night of relaxed sleep last night despite the shakey start.   Today, except for having a lot of energy, she seems to be getting stronger and stronger.  Tonight was how she could jump from bed to chair, thereby staying on the clean areas.
  • Up to a few days ago, Stephanie was on 6 IV pumps because of all of the different types of drugs and stuff.  They're talking about rearranging it a little to cut back on the number of pumps now that she is on less stuff.
  • She has started expressing an interest to eat and drink on her own now that her mouth and throat are much better.  Up to now she has been on a regular liquid diet through her IV.  They've talked about cutting back on that a little to see if she'll start taking solid stuff orally.  Its not that important right now, but some kids have a lot of trouble switching back to solids later which ends up delaying their release from the hospital (its one of the criteria for being able to leave the hospital).  All the better if she starts on her own now.

Friday, 22 January (Day 15: WBC-0.5, HGB-85, Plt-14, Poly-0)

  • Stephanie's white blood cell count (WBC) has risen to 0.5 overnight.  This is good news.  It's actually something called "polyfils" that are the deciding factor as to when Stephanie will be able to leave her isolation room to go to a step-down room.  Just the same, the rise in WBC is an indication that the polyfils should follow suit over the next few days!  Her "poly" count came back as 0, as expected at this early stage.
  • Because of her platelet count, Stephanie had another transfusion of platelets today.
  • Stephanie is still feeling pretty good.

Saturday, 23 January (Day 16: WBC-1.3, HGB-85, Plt-40, Poly-0.91)

  • Stephanie's poly count was a big surprise this morning (they take the blood samples early in the morning (04:00 AM) and we usually get the results back by 08:00 AM).  It went from 0 to 0.9 overnight.  If its above 0.5 again tomorrow morning, she will be taken out of isolation!  Stephanie has been really excited all day about it!
  • The other thing that she is excited about is that Michael may be coming down for a short visit tomorrow afternoon.  If she is out of isolation, she may actually be able to go out to the Parent's Lounge to physically visit with Michael (she'll still have wear a mask).  If not, she'll be just as happy talking to Michael on the phone from her room while he is in the lounge - its the idea that counts.
  • They stopped Stephanie's food IV for a short while today to try to motivate her to eat.   Either way, Stephanie was motivated enough to try out some very small amounts of soup, jello, yogurt and pop.  As well, she was able to take one of her medications orally (as a pill) instead of via IV.  Both of these things (eating and taking pills) will be a requirement before she will be allowed to leave the hospital.  She is well aware of it and is trying very hard to switch back over.

Sunday, 24 January (Day 17: WBC-2.1, HGB-93, Plt-21, Poly-1.22)

  • Stephanie's poly count is above 0.5 again!  Thereotically she was allowed out of isolation today.  But, because they're were no "step-down"  rooms available, she'll have to stay in her current room, but with relaxed rules.  Her room shares a common entrance way with another isolation room, so we still have to be very vigilant so as to not "dirty" the entrance way.  Just the same, Stephanie is now allowed to have her stuffed animals sleep with her.  She was pretty excited about that.
  • Michael made it to Toronto for the afternoon.  Unfortunately, the doctor recommended that Stephanie not leave the floor as her counts have only been up for a very short time.  With Michael not allowed onto the floor, it meant that they couldn't see each other.  She wasn't happy about that at all.
  • Stephanie has taken to "sliding" in her bed.  What she has us do is crank up the foot as well as incline the bed with the feet higher.  Then, starting at the foot she falls/rolls down to the head of the bed, which is raised so she doesn't fly off the end!  The nurses haven't said anything yet, but we can see them cringing.
  • Stephanie has been able to take a pill orally for the last two mornings now.  As well, she is slowly sipping and eating a little food and drink. 
  • They took a blood sample during the day to monitor her platelet counts.  Sure enough, it was down to 9!  She got platelets shortly after.

Monday, 25 January (Day 18: WBC-3.3, HGB-78, Plt-36, Poly-1.98)

  • Stephanie's WBC and poly counts are still up as of this morning.  The next step is stopping the GCSF (a white blood cell growth stimulant).  The original reason for starting was to jump start her new bone marrow.  Now, it will be a matter of seeing whether or not her marrow can keep going on its own.  Normally, there is a little drop in WBC and poly counts. 
  • The other thing that they will be monitoring is the Platelet counts.  They say that its normally the last thing that recovers after a bone marrow transplant, hence the reason for the frequent tranfusions over the last few days.
  • Now that Michael's marrow has started "growing", they're keeping a close eye out for Graft vs Host Disease (GVHD).  What happens usually is that the new bone marrow starts attacking its host (Stephanie in this case).  The initial stages show up as rashes on hands and feet.  They control it by drugs.  They say, however, that a little bit has statistically proven to be good in that it appears that it is the new bone marrow seeking out any left over Leukemic cells, if there are any left.
  • Just the same, they keep saying that IF Stephanie continues at the rate she is going, she might be able to go home by the end of the week ... maybe.  Its very encouraging.
  • Stephanie had two big throw-ups over the course of the day.  Fortunately, one was from a cough that made her gag and the other was a pill that got stuck on the way down (a penicillin pill - it pretty darn big) - nothing to worry about at this stage.  Just the same, they gave her some gravol to calm her stomach.  Unfortunately, that put her to sleep for a few hours during the day which meant that she was up till midnight.   The funny thing with her these days, though, is that when she decides that she is ready to sleep, I swear she's out cold within two minutes of putting her head down!

Tuesday, 26 January (Day 19: WBC-2.1, HGB-74, Plt-23, Poly-?)

  • They stopped GCSF yesterday so today's WBC was down, as expected.  It should turn itself around on its own over the next day or two.  Just the same, Stephanie was feeling excellent today.  She spent most of the evening zooming up and down the hallways on a little tricycle (with mask of course) they have on the floor.  She got a good workout but I thing that Linda got more ... she had to keep up with Stephanie's IV pole!
  • Pills are going down with no problems now.  As well, Stephanie is continuing to eat and drink small amounts of food and fluids.  Still only jello and yoghurt for now, but tomorrow she wants to try some Kraft Dinner.
  • Day 19 - On Bike 1.jpg (11755 bytes) Day 19 - On Bike 2.jpg (12327 bytes)

Wednesday, 27 January (Day 20: WBC-1.1, HGB-74, Plt-13, Poly-?)

  • Stephanie is still eating and drinking little bits and sips on and off.  Otherwise, she is continuing to feel very good.
  • Platelets were low so Stephanie got a topping up this afternoon.
  • This evening a step-down room finally opened up so around supper time we moved into it.   Stephanie was really anxious to move.  She wanted to help so she brought over the last big load in her arms as we pushed her IV pole over.  The room gives her a lot more room and an actual bathroom!  As well, the couch/bench converts to a little cot for a parent to sleep.
  • Hmmm, one of my eyes is pretty red tonight.  Hopefully its just a scratch and will clear by tomorrow morning.  They are pretty strict about open infections, with reason.

Thursday, 28 January (Day 21: WBC-1.4, HGB-66, Plt-63, Poly-?)

  • Unfortunately my eye didn't clear overnight.  Best guess is that it is "pink eye".   I tried covering it with an eye patch to hide it from the nurses, but the pirate costume made them really suspicious!  Once they saw my eye, they politely banished me from the floor until it clears up.  Until then, unfortunately, Linda will have to be on her own with Stephanie in her room.
  • Stephanie's HGB count was low so she got blood today.
  • Day 21 - Teacher 1.jpg (12907 bytes) Day 21 - Teacher 2.jpg (13501 bytes) Day 21 - Teacher 3.jpg (14051 bytes) Day 21 - Teacher 4.jpg (13598 bytes)

Friday, 29 January (Day 22: WBC-2.1, HGB-127, Plt-49, Poly-0.9)

  • My eye looked better this morning but I zipped down to Trenton to see the doctor just the same to see if he could give me something to help clear it up more quickly.   Unfortunately, because pink eye is viral, its just a matter of waiting it out.

Saturday, 30 January (Day 23: WBC-2.0, HGB-114, Plt-38, Poly-?)

  • Went back to Toronto this afternoon. 
  • Stephanie is still doing OK.  Her counts are slowly coming back up on their own.   At this point its the right trend that they were looking for.
  • Her eating and drinking haven't changed much - little bits and sips now and then.   She has still been throwing up now and then.  The worse time seems to be when she has to take her pills in the morning.  She has quite a few and some of them are fairly large.  If it wasn't for that, she would be doing pretty good.  By evening time, she usually is eating fair amounts of food and water.  Its just the morning time when her stomach isn't too stable. 
  • Just the same, she is literally running up and down the halls.

Sunday, 31 January (Day 24: WBC-2.0, HGB-119, Plt-27, Poly-?)

  • My eye looks much better this morning but the verdict is that I must wait 7 days to make sure that I am not a risk to the floor before I am allowed back in.  Just the same, Stephanie is allowed out to see me in the parent's lounge.  That's good so I can give Linda a little bit of a break.

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.
HGB is HemoGloBin or red blood cell count (carries nutrients).  Below 70 means a blood transfusion.
Plt is the number of Platelets (stops bleeding). Below 20 means a platelet transfusion.