Daily Diary
December 1998

  Tuesday, 1 December

  • Pretty quiet day for Stephanie and Linda today.  The highlight was that it was time to change Stephanie's gripper (the needle part that pokes into her port-a-cath).  It's been in for about a week now and it needs to be changed every week.  Anyways, since it had to come out and because Stephanie's antibiotics are only every 6 hours, they were able to get out to Almost Home and do some laundry.
  • We got some new dates from Toronto reference radiation and the actual bone marrow transplant.  Next Tuesday, 8 Dec, we have an appointment again in Toronto for a consult - basically the meeting we were supposed to have last Wednesday.  Then, it sounds like Stephanie will go for cranial radiation from 14-21 Dec.  That will be followed by whole body radiation starting 30 Dec with the transplant thereafter.   We're not sure what the plan is for in-between those dates.  We assume more chemotherapy, but are not sure how much (ie, every day as an in patient or less as an out patient).  Although we are not holding our breath, it could mean that she could be home a little bit before the transplant or even better, be home over Christmas.  We should find out more tomorrow. 
  • Tomorrow, Stephanie has another eye appointment at Hotel Dieu.  They are still trying to assess the damage that was done as a result of the relapse and what could possible be done to reverse it.  As well, she is scheduled for chemotherapy via a spinal tap.
  • Stephanie is scheduled for a follow-up MRI on Thursday.  We've asked that we be able to try without putting Stephanie out under general.  She was able to stay still for the CAT scan and so we hope she should be OK for the MRI (although it is significantly longer).  As much as possible we would like to minimize the amount of time she is out in order to minimize the risks.

Wednesday, 2 December

  • I went to Kingston this morning to drop off some of the many Get Well cards that Stephanie received from Michael's school. Stephanie was in an exceptionally good mood so she decided that I could stay with her overnight in the hospital room while Linda goes over to Almost Home for a well deserved rest.
  • Stephanie had an eye appointment scheduled for this afternoon. It worked out well because Linda's Mom & Dad dropped in from Ottawa and Stephanie let me take her to her appointment while Linda went off with her parents for the afternoon. The eye examination was just to confirm that her right eye hasn't changed, which it hasn't. Basically she can't see well enough to read with her right eye. Her relapse in Oct damaged the centre part of the back of her eye. Her left eye is perfect.
  • After we got back from her appointment, they were waiting for her. She had a Lumber Puncture scheduled. With her Omia Reservoir out of her head, she must now get her central nervous system chemo via lumber punctures once again. Stephanie was very good even though it took them 5 times before they got it in properly. You really have to feel sorry for the doctors. By now we know most of them really well and they know Stephanie really well. Although they are trying their best, I know that it must really bother them to put Stephanie through that.
  • Got some more clarification as the doctor's plans. Its still 14-21 Dec for cranial radiation. Whole body radiation would start on 30 Dec. The actual transplant day is scheduled for 7 Jan. To go over the details, we are scheduled to meet with the radiologist at Sick Kids next Tuesday (8 Dec) and then the oncologist on Wednesday, both in Toronto.
  • Stephanie's temperature has been slowly creeping up. Hopefully we're not in the beginning of another infection.

Thursday, 3 December

  • Unfortunately, Stephanie's temperature quickly rose to 40 degrees overnight. She was also sick - throwing up and diarrhea. Needless to say, neither one of us any sleep. Linda picked a good one to take off!
  • The doctors don't appear too worried. Although some of the throwing up may be from the lumber puncture, the rest is more than likely from some sort of flu bug going around - the hospital is the worst place to catch stuff. They've taken blood, urine and throat samples to culture, but they suspect it will just confirm that she has a flu bug and that nothing is growing in the cultures.
  • Stephanie slept most of the morning. By afternoon, her temperature was still up but the tylenol seems to make her feel well enough to be in a good mood.
  • The worst part of this recent development is that we were hoping to maybe get Stephanie home for the next few days, depending on her chemotherapy schedule. Now we're not sure.
  • Stephanie's MRI was cancelled today because the machine was broken.  They didn't say if they would try to reschedule it for tomorrow.
  • I came back to Trenton for the night.

Friday, 4 December

  • I made arrangements for Michael to stay with his friends here in Trenton for tonight and tomorrow night so that I can go to Kingston and try to give Linda a break.  I went down after supper.
  • Stephanie's temperature was up and down today.  The tylenol seems to help and there is nothing growing in her urine, blood or spinal fluid.
  • Stephanie didn't want me to sleep with her tonight so I stayed at Almost Home.

Saturday, 5 December

  • Stephanie's temperature is still fluctuating a little bit but the tylenol is still working.  The plan is still to sit it out and see what happens.
  • Stephanie is definitely feeling better.  She's up walking quite a bit now.   She still is very unstable though so we have to hold her hand because she trips easily.  I imagine its partly because of being mostly in bed these last few weeks and partly because of the specific chemo drugs she has been on.
  • I spent most of the day playing with Stephanie while Linda went off shopping.  For tonight, Stephanie decided that I could spend the night with her.  Linda got to go off to Almost Home.

Sunday, 6 December

  • Stephanie was really grumpy this morning but quickly got better.  She really isn't a morning person.  It didn't help that her port wasn't working well again and they had to fiddle with it.
  • The rest of the day was pretty good.  Stephanie is feeling much better now.
  • They stopped her Vycomiosin (?) to see how she will do.  She has been on this for the last 2 weeks or so in order to try to kill the bacteria in her spinal fluid.  To play it safe though, Stephanie will have to stay in hospital for monitoring.  We had thought that we might have been able to get her out for the night but no.
  • We thought Stephanie's MRI was rescheduled for tomorrow morning at 0800 hrs but according to the nurses, its only for the 14 of Dec, one week from tomorrow.  Linda will have them try to work it out first thing tomorrow morning.  Our concern is that we believe that Toronto needs the MRI results to keep us scheduled for the transplant.   Our appointment in Toronto is still Tuesday and Wednesday of this week.
  • I came back to Trenton for the night.  I'll head out to Kingston tomorrow morning after Michael goes off to school and pick Linda and Stephanie up.  The plan is to head to Toronto for the night, stopping off in Trenton for a few hours first.

Monday, 7 December

  • Stephanie had her MRI done this morning.  She did it perfectly, without moving or fusing at all, despite the rather rude staff.  Stephanie is really funny like that.   She'll make a big fuss about taking a piece of tape off, but for something as scarey as being in tube for 20-30 minutes, she doesn't complain at all.  The staff were full of threats such as "you know if she moves, you'll lose your slot, etc".  As Linda said, they acted as if they thought they were God's gift to the world!  Anyways, I think that Stephanie showed them a thing or two.
  • I took off from Trenton for Kingston as soon as Michael was off to school.  I was hoping to be able to bring Stephanie and Linda back to Trenton for a few hours before heading off for Toronto.  Unfortunately, they weren't able to get the MRI films until late afternoon.  In the end, we made it back to Trenton around supper time and took off for Toronto around 1900 hrs and got in to town around 2100 hrs.
  • Although Stephanie still has a little bit of low grade fever, she is feeling very well now.  Her legs are getting stronger and the puffiness in her face and tummy is slowly coming down.

Tuesday, 8 December

  • We spent this morning at the radiologist.  He went over what will be happening with respect to cranial radiation and whole body radiation.  He also talked about the short and long term effects.  The cranial radiation is required to augment the CNS chemotherapy she has received to date.  The augmentation is required because she had a CNS relapse.  Unfortunately, the radiation will probably have some minor effects on brain development later on in that she may have difficulty grasping some areas having to do with spacial relationships, advanced math, etc ... but then so do I.
  • When he was done, they made Stephanie's mask.  The mask will be used during next week cranial radiation.  It holds her head in the same position (it clamps down to the table) and gives them a place to mark aim points.
  • I was surprised that Stephanie let them do everything with no crying at all.  To make the mask, they started with a piece of white plastic type material about 12 inches square and an eighth of an inch thick that they softened in a bath of hot water.   They then took the sheet and literally pulled and stretched it over her face to make a mold.  The result looked like a cross between a casper the ghost face (her cheeks are pretty puffy) and a Jason mask from Friday the 13th.  Even though the sheet is full of eighth inch holes, I thought that she would panic because she would find it hard to breath (I know that I would have), but she said that it didn't bother her.
  • She ended up having to lay there on the table with the mask on (and clamped to the table) for a good 10 minutes as they took XRays to position her properly so they could mark the aim points on the mask.  It didn't bother Stephanie at all.
  • Starting next Monday, she will undergo 6 radiation sessions, one a day (Monday to Friday, and then the following Monday).  The actual session should last no more than hour, with most of that time used to position, etc, with the acual exposure only being a few minutes.
  • We spent the rest of the day playing in the play rooms at Sick Kids.

Wednesday, 9 December

  • We spent most of the morning waiting to see the oncologist who will be overseeing the bone marrow transplant.  He went over the procedure, risks, effects and choices.
  • The plan is to admit her the 29/30 Dec to start high dose chemo followed by whole body radiation, with the actual transplant scheduled for 7 Jan.  Then, if everything goes well, Stephanie would stay in hospital for 4-6 weeks followed by 3 months of isolation at home.
  • Statistically, Stephanie has a 50-60% chance of coming through the transplant and being "cured" of her leukemia.  She has a 10-15% chance of not making it through at all, usually as a result of infections and/or complications.  The remainder make it through but then have a relapse shortly after and then have to undergo another alternative treatment.  If she doesn't undergo the transplant, her chances of long term survival are only about 10%.  Not the best odds.  Stephanie was present when the doctor talked about all of this.  We know she listens to everthing going on around her.  What we don't know is how much she understands.  Probably more than what we think.
  • On a more optimistic note, the doctor told us about some recent promising statistics which should improve Stephanie's odds for a cure.  It has to do with Graft vs Host Disease (GVHD).  GVHD occurs when the transplanted marrow (the graft) attacks the body that its been transplanted into (the host).  What they are finding its that in those cases where it occurs, the final outcome is a higher percentage of "cures".  While severe GVHD is dangerous they figure that a little bit of GVHD is good as the transplanted marrow ends up actually seeking and attacking any remaining leukemic cells.  In Stephanie's case, barring any major complications, they hope to let GVHD progress to a level 1 before controlling it, instead of trying to eliminate it all together.
  • As a side issue, the doctor did appear a little concerned that Stephanie still had her port-a-cath in, instead of a hickman (a different type of central line).  The hickman, I think, allows for more fluid to be pumped in and has two connections.   With Stephanie's last few weeks in the hospital with minor complications, Kingston hasn't had the opportunity to put it in yet.  We'll have to sort this out with Kingston tomorrow.  Toronto would like to see it in before Stephanie starts cranial radiation next week .... so much for a quiet weekend.
  • We made it back to Trenton for supper time.  I picked up Michael from his friend that he was staying with and we finally "reunited" the family for the first time in .... over a month ... I'm not even sure.  It was cute to see Stephanie and Michael together.  They must have really missed each other as they weren't fighting at all.   I swear Michael has grown a few inches.  Last time Michael and Stephanie were together, I'm sure that Stephanie was almost as tall and as big as Michael.  Now Michael is significantly taller and bigger than her.
  • We broke the news to Michael as to how many needle pokes the doctor said they would probably use to draw the bone marrow from him.  Actually, I asked Stephanie if she heard what the doctor had told us this morning.  Without hesitating, she blurted it out: 100 ... I knew it she was listening to everything!  It didn't seem to bother Michael that much as he realizes he will be asleep.

Thursday, 10 December

  • Stephanie was full of beans today.  She was dancing and running circles - as best as she could - she still has trouble climbing stairs and bending down to pick things up from the floor.  It was pretty funny watching her hobble around.
  • We worked out when Stephanie can go in for surgery to put in her hickman.  It's scheduled for early Saturday morning.   She'll need to have a blood sample done prior.  As a result, Friday afternoon we'll zip into Kingston for the blood test and then spend the night at Almost Home  That way, it'll be a quick walk over to the hospital the next morning for the surgery.
  • We started putting up our Christmas tree and inside decorations tonight.  The kids had fun.

Friday, 11 December

  • They had a "hero" party for Michael at his school this morning.  The timing could not have been better planned as it was one of the few times we were all able to attend.  I think that he really appreciated it as so often in the past he has made little comments about Stephanie getting all of the attention.
  • Linda and Stephanie took off for Kingston this afternoon.  The plan is to drop into the Hospital for a quick blood test on Stephanie (to make sure that she is OK for tomorrow's surgery) and then spend the night at Almost Home.  When I asked Stephanie if she minded going without me, she laughed it off, saying of course not since this was the fourth time whe was going to have surgery!

Saturday, 12 December

  • Well, so much for plans.  Because of some confusion, and I guess because they were trying to slip Stephanie in at the last minute, they didn't get to her till afternoon instead of first thing in the morning.  Just the same, everything went well.   They removed her port-a-cath from her right upper chest side and installed the new hickman on her left upper chest side.  At the same time, we had arranged for the neurologist to remove the stitches from the incision from the reservoir  in her head (that had been removed a few weeks ago) while Stephanie was asleep.  We sometimes feel like a General Contractor, arranging this and that between the different medical departments!
  • Since it was pretty late before Stephanie wasn't groggy anymore from the surgery, they will stay at Almost Home for the night before heading back to Trenton tomorrow morning.

Sunday, 13 December

  • Linda and Stephanie made it back from Kingston today with no problems.
  • We left for Toronto around 7:00 PM.  Because Linda's Dad is only coming tomorrow, we sent Michael off to a neighbor for the night before leaving.  We got into Toronto around 9:00 PM.  We checked in to the Novotel, had a snack and then went to bed.   The Novotel, through friends, is giving us an excellent rate for our stay.

Monday, 14 December

  • Today was busy running around making and waiting for appointments.  First it was the Neurologist at 11:00 PM.  They just want to double check (they've already checked this out in Kingston) that there is no real underlying neurological/leukemia related problem causing Stephanie's eye problem. 
  • We had to leave Neurology before they were done 'cause Stephanie's first radiation appointment was at 12:00 across the street from Sick Kids Hospital - at Princess Margarite Hospital.  Her session went over with no problems.  Stephanie was very good and didn't complain at all.
  • After it was over, it was back to Sick Kids to finish off the Neurology appointment.   After some waiting, we finally got back in to finish the appointment.  The conclusion is still that her (now very minor) cross-eyed is just a simple "lazy eye" syndrome, a result of her brain not using that eye because of the damaged blood vessels in it - nothing to be worried about at this time.
  • After that appointment, it was up to Oncology/Hematology Clinic (8D) to get Stephanie's new Hickman checked out.  At Kingston, they had just done it and then basically said so long and good bye!  It turns out, according to Toronto, that it should be re-Heperinized (a fluid that prevents any blood from clotting in it) every day.  As well, her dressings (she has one on her head to cover where they took out the stitches from her Omia reservoir, one on her upper right chest where her Port-a-Cath was taken out, and one on her upper left chest where her Hickman is now) need to be cared for.
  • We made it back to the room by supper time and spend the evening relaxing.

Tuesday, 15 December

  • It was back to Princess Margarite for another radiation session, same as yesterday.   Afterwards, it was off to the Oncology/Hematology Clinic (8D) for dressings and Hickman.
  • Since we were done fairly early, I headed back to Trenton for Michael's Christmas pagent.  He's not expecting me so it should be a nice surprise for him.  Linda and Stephanie have the routine down so they should have no problems on their own.
  • Michael's pagent went OK.  Since I'm in Trenton now, Linda's Dad will go back to Ottawa tomorrow and I'll stay with Michael for the rest of the week.

Wednesday, 16 December

  • Linda and Stephanie had no problems with either of their two appointments (radiation and hickman) today.  They spent the rest of the afternoon shopping for clothes for a performance of The Nutcracker that they are going to later this afternoon.  They're having a ball.  Stephanie is having a lot of fun shopping, commenting on how well these shoes go with that outfit, etc.
  • I picked Michael up after school and drove to Toronto.  Through the Sick Kids Hospital, we were able to get a pair of tickets to tonight's Toronto Maple Leafs vs Phoenix Coyotes hockey game.  Not only were the tickets free, but they were for Curtis Joseph's (the Maple Leaf's goalie) private box!  At first, when Michael was pretty reluctant to go, but he quickly warmed up when he saw the great view we had.   Michael was pretty funny, leaning back in his chair, his feet up, a pop in one hand, a chicken finger in the other, when he said "now this is the life!".
  • After the game, we met back up with Stephanie and Linda back in the hotel room.   They had a good time but Stephanie is getting tired, its been a long day for them.   The plan for Michael and me is to sleep overnight in Toronto and then leave early tomorrow morning to get him back to Trenton for school.  He says that he wouldn't mind if he missed tomorrow since they are not doing anything important but doesn't want to miss Friday since they are having their Christmas party ... priorities!

Thursday, 17 December

  • Took off from Toronto at 07:00 AM and made it in to Michael's school for 09:00 AM - right on time!
  • Talked to Linda and Stephanie this afternoon.  They had no problems with their appointments.  Stephanie is still feeling great.

Friday, 18 December

  • Linda and Stephanie are still having a ball in Toronto.  So much so, they don't want Michael and me to come and join them till Sunday!  That's fine, Michael and me will stay here till then.  On Sunday, we'll drive down to meet them and stay overnight.  After Stephanie's last cranial radiation appointment on Monday, we'll all head back to Trenton.

Saturday, 19 December

  • I took Michael out to a movie this afternoon - It's a Bug's Life.  At first he really didn't want to go.  He still remembers DisneyWorld's fiasco (it was 4-D and he got really scared).  He really enjoyed this one this time.
  • I talked to Stephanie and Linda tonight.  Stephanie is sounding incredibly well.

Sunday, 20 December

  • Went down to Toronto this afternoon.  I will stay overnight and then bring Stephanie and Linda back after tomorrow's last cranial radiation session. Left Michael for overnight at a friend's house in Trenton.

Monday, 21 December

  • Made it back to Trenton just after supper.  It was a long day.

Wednesday, 23 December

  • We packed the car with all the Christmas gifts and drove to Linda's parents place in Ottawa.  Stephanie and Michael are really excited.

Friday, 25 December

  • We're all having a good time here.  Stephanie is having a ball using Michael's "moonshoes" (they're shoes that have large elastics on them that allow you to jump really high).  For somebody who was having trouble walking a few weeks ago (and is still having trouble climbing stairs), she is pretty amazing.

Saturday, 26 December

  • Came back to Trenton today.  We left Michael there.  They will bring him back to Trenton in time for school.

Sunday, 27 December

  • The home care nurse came in to take care of Stephanie's hickman.  Although she was able to hepronize it, she wasn't able to draw any blood from it.  We're guessing its just how Stephanie was sitting.

Monday, 28 December

  • Stephanie's doctor in Toronto got the report back from the home care nurse.  He wanted us to have Stephanie's hickman looked at immediately, so we drove to Kingston tonight.  The danger with her hickman is that it may have a clot blocking it.   Even if that isn't the problem, it has to be working properly if we want to go ahead with the bone marrow transplant as scheduled.
  • Kingston was able to get her hickman working.  Even though it was fairly early when we got out (just after supper), Stephanie choose to stay at Almost Home for the night.

Tuesday, 29 December

  • Got back from Kingston around lunch.  We spent the rest of the day getting ready for the upcoming month or so in Toronto.
  • Stephanie has beans in her.  She definitely is the strongest she has ever been over the last few months.  It should give her the best chance over the next few weeks.

Wednesday, 30 December

  • We drove in to Toronto this morning.  All in all Stephanie is taking the upcoming series of events well.
  • It was kind of weird walking up to the ward where Stephanie will be admitted (8B).   They have three big sets of double doors that you have to walk through before you reach the nurse's station - its because the whole ward is considered isolated and only patients and their parents (not even brothers and sisters) are allowed in.  I think that we all realized that once we went past those doors, Stephanie was in for the next month or so.
  • We spent most of the afternoon and evening getting used to what will become our home for the next little while.
  • They have us temporarily in what they call an "isolation" room although at this point, we do not have to undergo all isolation procedures.  This is the type of room that she will end up in starting the day she receives Michael's bone marrow. It is very small, with no parent's bed, no storage area and no bathroom, or roller coaster for that matter.  As well, it has a super-dooper air recirculation system - one whole wall is a filter.  In order to get to the room, you go through a door into a small supply room.  This is where you "scrub in" and put a hospital gown on.  You then have to go through an automatic sliding glass door.  It does have a TV, VCR and Super Nintendo in it.  The whole setup is intended to reduce the risk of infection following the actual bone marrow transplant when Stephanie's immune system will be at its lowest.
  • They also have what they call "step-down" rooms which are essentially a normal room with storage area, a parent's bed, bathroom, TV, VCR, super nintendo, but still no roller coaster.  These types of rooms are used after transplant and the white blood cells have began reproducing on their own.  Unfortunately, they don't have any available for Stephanie for pre-transplant because they are all occupied by kids post-transplant.  I guess that's actually good (its a good thing to be allowed to move out of the isolation room into a "step-down" room.
  • For now, we'll have to do with an isolation room with a cot for one of us to sleep in until Stephanie gets moved into isolation on the day of tranplant.  Unfortunately it means very tight quarters with no storage areas - and you know girls with all of the stuff they want to always drag around with them.

Thursday, 31 December

  • It was a busy morning.  Before starting the high dose chemo, they needed to do a cardio echogram to ensure that there will be no surprises with her heart.  Just after that, it was off the the treatment room for a bone marrow sample to determine where she sits.  Contrary to Kingston, they do their bone marrow aspirations and spinal taps using something called "conscious sedation" (as opposed to Kingston which only uses local anethestics (spelling?!@#).  I'm told Kingston is the only place that doesn't - anyways, there's pros and cons with both ways.  While she was out, they took out her stitches from the port-a-cath removal and the hickman insertion - again, only thanks to our arranging.
  • The afternoon was much quieter.  They've started the high dose chemo (cyclophosphamide?), as well as a large number of other drugs for this and that.  Its too many to remember or to try to fully understand.
  • Stephanie and Linda are planning to stay up till midnight tonight for New Year's eve.   I was too tired and went to bed at 10:00.  We aren't in to the Ronald McDonald house yet so right now we sort of jumping from hotel to hotel, depending on availability and or price (through the hospital, some have offered free nights because of the Christmas period).