Daily Diary
October 1998

Friday, 2 October

  • Lost: one grouchy Stephanie.  Found: one always happy Stephanie.  Both Michael and Stephanie were crazy tonight.  Don't know what has gotten into them today.

Wednesday, 7 October

  • Well, I guess that it couldn't last forever.  We thought that she had gotten over whatever had been making her so grouchy last week but we were wrong.
  • Sunday night Stephanie went to bed complaining of not feeling too well.  Sure enough, she was up throughout the night, not able to fall asleep.  The next day (Monday), the complaining and crankiness started again. Her Monday night sleep wasn't much better.  She woke up really early Tuesday morning, not able to sleep anymore, and started throwing up again.  By Tuesday night she went to bed exhausted.   Unfortunately she still didn't sleep very well last night and today she did have some good few hours where she was full of energy, but then a quick crash.

Friday, 9 October

  • Stephanie still isn't doing too well.  She's been extremely cranky, not sleeping, sore head, trouble seeing.
  • On a happier note, the Sunshine Foundation's "Sunshine Bear" was here to bring Stephanie's wish.  She asked to go to Disney World in Florida.  She seemed pretty excited about it.  Hopefully she won't get sick before or during the trip.   Its planned for next week: 16-20 Oct.

Tuesday, 13 October

  • Stephanie had chemotherapy today in Kingston. 
  • We went over in detail with the doctor how Stephanie has been over the last month.   In order to rule out the worst, the doctor decided that she should do a CT Scan of her head to rule out that there might be a tumor developing in her brain.  As well, she decided that they should do a Lumbar Puncture to rule out that Leukemia has appeared in Stephanie's Central Nervous System.  When we told the doctor about hoping to get off to DisneyWorld at the end of the week, she was able to pull a few strings to get her in today.
  • Surprisingly Stephanie wasn't scared at all about doing the CT Scan.  The doctor read the results right away and confirmed that there was no tumor presence. 
  • As for the Lumbar Puncture, she scheduled it for next Wednesday, the day after we get back from DisneyWorld.

Thursday, 15 October

  • We debated about going to DisneyWorld at all.  Stephanie still hasn't been doing that well - not sleeping, trouble seeing, pains, etc.  In the end, we decided that it might be the thing to snap Stephanie out of her slump.
  • Our flight is tomorrow morning (6:30 AM), so we've decided to spend the night in Toronto at a hotel.  As a result, we spent the day at the Toronto Metro Zoo.  It was a beautiful day.  We noticed that Stephanie's right eye was turned in and that she was covering her eye or closing it so she can see properly.  Maybe this is what has been causing all of her problems this past month: eye problems.  She seemed much more relaxed now that she is only using one eye to see.  We got to bed early since we're planning to catch the airport bus at 5:00 AM tomorrow morning.

Friday, 16 October

  • We made the flight with no problems.  The only problem was at the airport after we landed.  There had just been some sort of security infraction (we found out later in the news that somebody had rushed through a security checkpoint), so they shut down the whole airport while they investigated.  For our flight, they let us get off the plane, but then locked us all into a waiting area.  As a result, although we landed at 9:00 AM, we didn't make it too the DisneyWorld hotel till about noon.
  • We spent the rest of the day checking things out: the pool, and the area they call Downtown Disney.  The weather is great here - at least 30 C.  Both Stephanie and Michael are pretty excited.

Saturday, 17 October

  • We spent the day at Magic Kingdom.  We had planned on catching the first bus out at 7:30 AM to take advantage of the smaller crowds.  In the end, only Michael and Linda kept to the plan.  Stephanie and I slept in till 9 or so.  It was pretty funny when we finally got there.  As we got off the bus, there was a small downpour from a passing cloud.  As we waited under a canopy till it stopped, Stephanie, in a serious voice asked me "Daddy, is this real rain?".  It was hard to tell her that it was indeed real without laughing.
  • We met up with Linda and Michael at noon in front of the Castle.  They were able to get onto a few rides.  In our case, we really only did the Carousel and It's a Small World. 
  • For the rest of the afternoon, I went with Michael, Linda with Stephanie.  I managed to convince Michael to wait in line for Space Mountain (a roller coster in the dark) and made it all the way to the front of the line, but once he realized that it would be all in the dark and that the seating wasn't side by side, I let him chicken out ... ok, ok, I was chicken too ... and we got out of line.
  • We were all supposed to meet up just before 3:00 PM for the afternoon parade, but it didn't happen.  Michael and I got stuck at one end of the park and Linda and Stephanie got stuck at the other end.  We both had good viewing areas just the same and met up shortly afterwards. 
  • We all walked around together for a few more hours before Linda and Stephanie went off to the Hotel and Michael and I stuck around for the evening parade and fireworks.  We made it back to the hotel by 9:00 PM.  They had gone out for a nice quiet supper.   Everybody went to sleep real quick!

Sunday, 18 October

  • ... this is not a vacation, we were up again at 7:30 AM to catch the bus to the Animal Kingdom. 
  • We started off by watching the Lion King show.  Poor Stephanie, although she seems to feeling better, she is really only getting to see half of DisneyWorld! - for the last two days, she has been either been closing her right eye or holding her hand over it so she can see properly. 
  • Coming out of the show, Mickey and Minnie, and Tigger and Pooh were available to meet.   The park staff noticed our Sunshine Foundation pins and offered Stephanie complementary pictures of her with the characters.  The pictures turned out beautiful.  They'll make perfect souvenirs.  It is obvious from them, however, that she is having major problems with her eyes - they definitely appear "cross-eyed".
  • We checked out the Jungle Book show.  Again, the staff noticed the Sunshine Foundation pins and offered to Stephanie to meet with Moglie and the Maiden.  She thought it was great.
  • We did the Safari trip thing.  It was pretty fun and relaxing.
  • We made the mistake of making the kids sit through the "It's Tough to be a Bug" show.  The show is what they call 4-D.  You where 3-D glasses, which make things stick out of the screen, but they combine it with special effects such as water splashing on you, gusts of air, loud sound effects, and, the best part, things that poke you from behind and below your seat.  Linda had to take Stephanie out as soon as it started (it was just too much for her - Stephanie that is).  Michael lasted till the end but by then he was in my lap, crying, screaming and hiding his eyes.  I, on the other hand was howling with laughter because there were things poking my back and behind!
  • The temperature was pretty high today again (30 C), so we called it a day fairly early and spent the evening in the hotel pool. Both Michael and Stephanie had a ball and thought that it was neat to be be swimming at night outside.
  • Stephanie is weird.  She insisted on doing some homework that she had brought with her, before going to bed!

Monday, 19 October

  • It as another early morning today as we headed off to MGM-Studios.  It was another scorching day.  I spent most of the day just sitting with Stephanie today as Michael and Linda went off to see a show.  We tried to watch a presentation of the Muppet Show.  It was another one of those 4-D type shows, so I had to leave with Stephanie.   Michael lasted the whole show but he made it clear that he would never go to a 4-D show again.
  • We had supper at a Character Supper location.  Mickey, Minnie and Snow White wandered around table-to-table as we ate to meet the kids.  We got lots of pictures of Stephanie with Minnie.
  • It was Michael's birthday today.  He turned 9.  Mickey led the restaurant in singing Happy Birthday for Michael.  We'll celebrate his birthday with his friends later in the week at Trenton.  Hopefully it works out better than last year - we had to postpone several times because of Stephanie.
  • By the time we got back to the hotel, Stephanie was pretty zonked.  When we took her temperature, it was already at 39.5 C.  We called Kingston to see what we should do.  They thought it was pretty neat that we were calling from Florida.  Anyway, they said that since Stephanie wasn't neutropenic (her counts from last Tuesday were normal), we should just treat with Tylenol.  She is due back anyway into Kingston for Wednesday for a Lumbar Puncture.  Its going to be a long night.

Tuesday, 20 October

  • We made the return flight back OK.  Stephanie threw up a few times, but we were able to catch it each time.
  • Her temperature is still hovering between 39.5 to 40 C.  Hopefully she'll make it till tomorrow morning for our scheduled appointment.

Wednesday, 21 October

  • Unfortunately, we didn't make it through the night last night.  We ended up calling Kingston to talk to the doctors just before going to bed.  Because of her temperature and eye problems, they suggested that we come in that night.  So, by about midnight she was checked in to her hospital room.  Our neighbor was nice enough to come over and sleep with Michael so we wouldn't have to wake him up.  Before giving her antibiotics to try to treat the fever, they did the Lumbar Puncture to get a fluid sample.   I went to Almost Home around 2:00 AM to get some sleep.  Linda stayed with Stephanie in her room.
  • Around 9:30 AM Linda phoned me and asked me to come to the hospital.  The doctor had come by to tell her the results of the Lumbar Puncture.  The reason for all of Stephanie's complaints were that she had had a relapse in her Central Nervous System.   Leukemic cells (which had never been there before) were blocking normal brain functions and hence her headaches, pains, and eye problems. 
  • They took a bone marrow sample this afternoon to see whether or not Stephanie has had a relapse there as well.  We should get the results back tomorrow.  Either way, it means that Stephanie has had a relapse while under chemotherapy.  Neither one of which are good.
  • I went back to Trenton tonight, Linda seems to be handling it well and besides there isn't much for me to do.  Being with Michael should be better.

Thursday, 22 October

  • I talked to Linda today.  The results from yesterday's bone marrow sample are back.   Its not good - she has also had a relapse there as well.  There is no other option, because she has had a relapse while under chemotherapy, she will need a bone marrow transplant - if by restarting chemotherapy she can be forced into remission again and if a matching bone marrow donor can be found.  It really doesn't sound good.
  • They started chemotherapy over from the beginning.  Up to now, they were just doing preventative chemotherapy for her Central Nervous System.  This time round though, because of the relapse, they will be doing more aggressive Central Nervous System chemotherapy.  As a result, giving the drugs via lumbar punctures is not effective enough.  Stephanie will need to have a "reservoir" surgically inserted into her brain so that the drugs can be given directly to her brain.  They would like to put this in sometimes over the next few days.
  • As for finding a matching bone marrow match, Michael is the prime candidate.  The doctor says that there is a one in three chance that he will be a perfect match.   She'll schedule him for blood samples to be taken sometimes over the next few days to see if he matches.  When the time comes (if he is a match), the procedure for taking the bone marrow consists of putting him to sleep and poking him across the hip bone some 24-50 times. 

Friday, 23 October

  • Since Stephanie still doesn't have her reservoir in, but she still needed to get (CNS) chemotherapy today, she had to get another lumbar puncture.
  • After Michael finished at school, we drove to Kingston to visit with Linda and Stephanie.  Although Stephanie is still an "in-patient" (she's waiting for the surgery for her head reservoir), her doctor gave her a pass so she could spend the weekend away (the hospital is really no place to rest!).  I already had a room booked at Almost Home for me and Michael so Stephanie decided that we should spend the weekend there instead of going back to Trenton.
  • We told Michael some of the details of what was going on and of how sick Stephanie really was.  We also told him about the possibility of being the bone marrow donor.   As any normal nine year old would react I guess, he was more concerned about how much it would hurt him.

Saturday, 24 October

  • Lucky we didn't go far!  The nurses called saying that the surgeon would be available to talk to us this afternoon. 
  • On the walk over to the hospital, Michael started questioning us about what Stephanie's chances were now.  He asked if they were 50/50.  I said yes - they're probably actually less than that.  He made a comment about how we'll soon be a "single-child" family.  He didn't say it to be mean.  We haven't given up hope yet.
  • The surgeon explained the procedure to us.  Basically they shave a big patch of hair off her head, make a "C" shape incision in her scalp (about the size of a silver dollar), drill a hole through her scull, insert a tube through the hole into one of the naturally occurring voids in the brain and then sew everything back up.  The big danger is that because she is also undergoing chemotherapy, which directly impacts her immune system, complications could occur before the cut heals because of infection.
  • As it is critical that Stephanie have the surgery sooner rather than later, he asked if he could try to fit her in tomorrow.  It was no problem by us, so Stephanie checked back in to the hospital in anticipation of surgery tomorrow morning.

Sunday, 25 October

  • Stephanie got in really early - 9:30 AM.  That's good because they always want you to fast before surgery.  Last time (for her port) it kept getting delayed and she kept having to fast - she didn't like that.
  • After the surgery, the surgeon told us everything went well.  His only comment was that there was a lot of fluid pressure - I'm not sure what that is supposed to mean.   He said that he'll have a CAT Scan done tomorrow to confirm that it is properly located and then it will ready to be used - that's good because it means no more spinal taps.
  • Stephanie was pretty groggy coming out.  Just the same, by the end of the day, she was up walking.  No laughing though, it hurts.
  • Michael and I went back to Trenton.  He has school and we both need to get our flu shots.

Monday, 26 October

  • Hmmm, for Michael's flu shot, he let me put an Emla patch on him, let me take him to the Doctor's office but then he just crossed his arms and kept repeating "I'm not doing it".  In the end, I held him down while the nurse gave him the shot.  My shot went much better - she didn't have to hold me down.
  • I talked to Linda today.  Stephanie's CAT Scan showed that everything was OK.   They were able to access the reservoir and give her chemotherapy with no problems.  
  • They got to leave the hospital later.  Instead of me going to pick them up, they just checked into Almost Home.  Unfortunately, Stephanie started throwing up because of the heavy doses to her head and had to return to emergency for IV medications to stop her.  They eventually made it back to Almost Home for the evening.

Tuesday, 27 October

  • Stephanie had chemotherapy today so they just walked over from Almost Home. 
  • I came down from Trenton with Michael so they could take blood samples for the intial matching ... six tubes, he cried but made it through.  We should get the results on Friday.
  • I got my first look at Stephanie's incision (it was covered over on Sunday when she came out of surgery).  With her head half shaved and the big cut, it looks pretty bad.   They used extra strength, non-dissolving stitches to make sure that it holds closed.  The look of it doesn't seem to bother Stephanie - she's looked at it in the mirror.
  • The doctor confirmed that the brain fluids taken from her reservoir yesterday showed no leukemia cells - that's good.  As for whether or not her bone marrow is in remission, she plans to do a  bone marrow sample in about two weeks - we'll see then.
  • At home, Michael and Stephanie were talking about how they could dress her up as Frankenstein and be really scarey!  I didn't tell her, but that's what I was thinking of

Wednesday, 28 October

  • Stephanie seems to be doing better.  Her eyes are clearer and don't seem to be cross-eyed.  She seems to be able to see better as well.  She still feels pretty bad all over because of the chemotherapy, but she isn't complaining.
  • She was actally smiling and laughing today.  Its good to see her old self again.  
  • Linda and Stephanie walked over to her school to pick up some work  She actually wanted to stay, but becuase we know her counts will be dropping very rapidly this week, she won't be able to.

Thursday, 29 October

  • We just got a call from Stephanie's doctor in Kingston.  The results of Michael's blood tests on Tuesday have come back and he is a perfect match for Stephanie!  Next Tuesday they need to do blood tests on Linda and myself to confirm that there wil be no surprises with Michael, but otherwise he is a perfect match.  The only other unknown is whether or not this new round of chemotherapy will put Stephanie into remission.   We should find that out in a week or two.  If she is, the doctor says that Stephanie will be scheduled for the transplant between then and Christmas.
  • Michael was asking about me about how they were goint to take the bone marrow from him.   When I started to talk about being put to sleep for the procedure, Stephanie was quick to jump in to correct what I was telling him!  I was saying something about holding a mask over your mouth when Stephanie corrected me by telling me that the doctors hold it there and not yourself.  She went on to talk about how they transferred her to a surgery bed and then to the actual operating table.
  • Michael was pretty jumpy the rest of the night.  When I tucked him in for the night he finally blurted out in his "goofy" voice that "maybe that's why God had put me on this earth".

Saturday, 31 October

  • Today was Halloween.  Stephanie was feeling not too bad and it was a gorgeous evening so she decided to do up and down our street.  I had a small wagon that she sat in as we walked between the houses.  She had a lot of fun.  I took Michael out for the rest of the evening.  He got a good haul.