Daily Diary
October 1997

Wednesday, 1 October

  • Stephanie was throwing up this morning, but otherwise, the chemo is coming along very well.  Sounds like she should be out of the Hospital by Friday.

Friday, 3 October

  • Stephanie has been throwing up a lot more this time round.  However, aside from not liking the actual throwing up part, it doesn't seem to be bothering her that much.
  • Stephanie's toxicity level is down enough that she can get out today.  She's due back in to the clinic for next Tuesday for spinal tap chemo. 
  • Linda's Mom came down from Ottawa to pick them up in Kingston and bring them to Ottawa for the weekend.  She'll bring them back to Kingston for her Tuesday appointment.   I'll meet Stephanie and Linda in Kingston on Tuesday and bring them back to Trenton.  If all goes well, we should have another two weeks off again.
  • In the meantime, I'll spend the next few days with Michael here in Trenton.

Saturday, 4 October

  • I talked to Linda and Stephanie in Ottawa today.  The trip from Kingston to Ottawa was OK, but Stephanie did throw up some more.  She seems to be hypersensitive to going in car now.  Guess we'll have to stock up on "barf-bags".

Sunday, 5 October

  • Haven't heard from Linda and Stephanie in Ottawa today.  Things have been going OK here in Trenton with Michael. 
  • In order to take advantage of Stephanie being out of the house and therefore being allowed to have people over, he invited a friend over last night for a sleepover.   With Stephanie's counts being so low because of the chemo, we had not been letting him have friends over in case they brought over a bad bug or something.  With Stephanie out, he took advantage of having someone over.
  • This afternoon Michael went over to a friend.  I went out to Canadian Tire.

Tuesday, 7 October

  • Met Linda and Stephanie at Kingston this morning - they took off from Ottawa at 7:00 AM and I took off from Trenton at 7:30 AM.  Stephanie's spinal tap went OK.  As per normal, she has to rest for an hour with the foot of the bed raised (ie, head lower than her feet).  She thinks that neat - especially since its normally lunch time when this happens and she ends up getting to eat while upside down.
  • Before taking off for Trenton, we stopped off at a local photographer.  Stephanie is having her picture taken for some fundraising fliers that the clinic will be sending out.  She had some pretty good smiles - it should turn out pretty good - I'll try to post them once I get a copy.
  • Should have suspected the worse when Stephanie mentionned that she felt a little bit sick at the photographer.  Although she didn't throw up there, as soon as we got into the car, it started.  Twelve times by the time we got to Trenton (a one hour trip).
  • Got home at about 4:00 PM and she finally stopped throwing up about an hour later.   She fell asleep on the couch around 5:30 PM - so did I, but the jab in the ribs from Linda made it difficult to stay asleep.  Stephanie woke up a little bit at 7:30 PM when I brought her upstairs to her bed.  Her stomach felt better and she was thirsty and still tired but still smiling.  I read her a story and tucked her in for the night.

Wednesday, 8 October

  • Stephanie woke up around 8:00 AM and threw up a few times.  An hour later, her stomach had settled and she was able to hold down a little food and water.
  • She made the best of today, playing outside as much as she could and eating and drinking a little bit, with just a few throw ups in between.

Friday, 10 October

  • Decided to go to the  Toronto Metro Zoo today.  It was a nice day, sunny but not too hot.  Made it there without Stephanie throwing up.  Her favorite animal was the Polar Bears.  You could watch them from above and if you went below ground, you could watch them from below water.  She thought it was great to be able to see them under water, especially when they came right up to the window.  Overall, both Michael and Stephanie did wonderfully, walking most of the way on their own, without having to be carried.
  • Spent the night in a hotel where we all went swimming.  Again, all of us, including Stephanie, had a ball.  She quickly picked up from where she left off in her swimming lessons.  By the end of the hour or so in the water, she was able to swim half the width of the pool with her head under water ... sort of.  She got a few funny looks, being bald and all, but it didn't bother her at all.

Saturday, 11 October

  • As we were in Toronto, decided to go to the Ontario Science Center.  Stopped off at MacDonald for a quick breakfast, but Stephanie passed on having breakfast as she threw up as we were walking in.
  • Didn't bother her, as she later wolfed down a donut and drank a juice as we wandered around the Science Center.  Again we all had a great time.  Stephanie's favorite section was the one about diseases.
  • Had fun for supper as we found a neat Chinese BBQ place.  Each table had a gas grill in the middle of it and you get a plate of raw marinated meats and one of raw seafood.  The idea is that you cook your own.
  • By the time we got to the hotel, we were all beat so we just went to bed.

Sunday, 12 October

  • Today's plan was to visit the CN Tower, eat Dimsum, and hit Costco on the way back.
  • For the CN Tower, Linda decided that she would have no part of it and would wait at the bottom for us.  Once we were up top, Michael and Stephanie thought the site was great.  The cars and people looked so small.  Stephanie loved dancing across the glass floor part.  I had to put a stop to her jumping on it ... it was scaring all of the tourists.  Michael was brave and after some coaching, made his way out onto it.   They both thought it was neat how your ears popped when going up and down the elevator.
  • Found China Town, found  a place to park and then found a DimSum place ... in that order.  DimSum place must be associated with the one we often went to in Edmonton ... it also offered a 30% discount on weekends and holidays!!??  Waitresses are very smart, she would open some dishes to show us and then quickly cover them, telling us that we did not want that one!

Monday, 13 October

  • Back home in Trenton now.  Weather is so nice around here that it is very hard to believe that it is Thanksgiving.

Tuesday, 14 October

  • Up at 6:45 AM to get everything ready to head out to Kingston.  Stephanie is being admitted for another session of high dose Methotrexate.  If all goes according to schedule, she should be out on Friday and then back in the following Tuesday for her final spinal tap of this CNS Prophylaxis phase.
  • By 2:30 PM she's gotten her bed, her IV is running and I head back to Trenton to meet Michael's school bus at 3:50 PM. 
  • After meeting him, he heads off to a friend's place down the road to play and I lay down because of headache (eye ache to be exact) that I've gotten over the day.  After about 10 minutes, Michael's friend is at the door telling me that Michael has fallen out of a tree and has hurt his arm bad (just what is the medical definition of bad?).  By the time I get out there, his parents have slung his arm and are walking him home.
  • Turns out the kids were climbing trees and sliding down branches.  One of the branches Michael was on broke and he fell.
  • At home, I take a quick look at his forearm and it looks OK (used my XRay eyes).   Finally convince him to take off his sweatshirt ... that's when I see his elbow ... that's not right (5 years of Engineering required to make that call on the spot) ... that bump shouldn't be there!
  • Off to the Trenton Hospital emergency ... four XRays and three hours later, the verdict: "that's not right" ... it had taken me 5 seconds to make the same diagnosis (remember, 5 years of Engineering).  Seriously though, of the two bones in his left forearm, one was dislocated at the elbow, the other broken at the elbow.
  • The only thing that Michael could say was "no needles" and "no surgery" ... unfortunately, he had picked up quite a bit from Linda and me talking about Stephanie.  He did however, proclaim that he never wanted to touch another tree for the rest of his life ... guess forestry is out of the question.
  • Since there is no local specialist in Trenton, guess where he they referred him to ... do I know where Kingston General Hospital is!! Ha.  So, a quick call to Linda and Stephanie to let them know that I was coming back, and by 7:30 PM, it was off to Kingston again, with Michael this time.
  • Once there, they put a tournequet on his upper arm, pumped up his lower arm with anethetics, popped his bone back in, slapped a cast on, more XRays, and by 2:00 AM, he was in a bed, just two rooms down from Stephanie  ... good we can take advantage of the two for one family rate!  So for that night, Linda slept in Stephanie's room and I slept in Michael's room.

Wednesday, 15 October

  • In the morning, Stephanie visited Michael and they discussed IVs, flow rates, side effects of long-term immobilization, and all those other things that 5 and 7 (soon to be 8) year olds routinely talk about.  All the nurses and Child Life support people just have to see us to council us that moving permanently into the Hospital is not a good option!
  • By 11:00AM Michael and I were back home in Trenton.  He was pretty sore all day, but able to get up and slowly move about.
  • I kept a close watch on Michael's hand to make sure that the swelling in his arm didn't restrict the blood flow to his hand.  Unfortunately, it seemed to be slowly getting worse all day and by midnight I decided to bring him into Trenton Emergency to have a second opinion.  They decided to "split" the cast and hold it together with elastic wrapping.

Thursday, 16 October

  • Michael didn't do much today; he's still pretty sore.
  • I called Kingston to see if they wanted to see Michael since he had had to get his cast split the night before.  They told me to bring him in tomorrow, which works out OK since I will have to go get Stephanie and Linda anyways.

Friday, 17 October

  • Michael's doctor's appointment in Kingston was pretty anti-climatic.  All the doctor did was to wrap tape around his split cast and ask us to come back in on Monday.
  • Left Kingston late in the afternoon with everybody.  Stephanie's week in the Hospital went fine.  She is feeling great as normal.  Her next appointment is Tuesday for another Spinal Tap - the last of the CNS Prophylaxis Phase.

Saturday, 18 October

  • Stephanie threw up this morning.  Just the same, she was up to going out to the Family Day at work.  She had a lot of fun watching a movie, playing Pin the Tail on the Donkey and decorating her own muffin.  She especially liked jumping on a small aerobics trampoline.
  • Michael was feeling much better today and went over to a friends house for the afternoon.

Sunday, 19 October

  • Today was Michael's birthday.  He is eight years old now.  Linda's parents and brother (Jacques) came down from Ottawa for the day.  We had a special lunch and opened presents.  We had originally planned to bring Michael and two of his friends out to a movie on Saturday for his birthday, but decided to postpone because of Stephanie having been in the hospital all week which got further complicated by Michael breaking his elbow.  Just the same, we had a great Sunday.

Monday, 20 October

  • I stayed home with Stephanie while Linda brought Michael to his doctor's appointment in Kingston.  This time they took xrays and then wrapped the still split cast in fiberglass - it was still too soon to put his "permanent" cast on - maybe next week.  Michael chose black for the fiberglass color: "for Halloween".
  • Stephanie is still full of energy ... sometimes too much!

Tuesday, 21 October

  • Today was Stephanie's turn to go to Kingston ... just like work: leave here at 7:30 AM and back by 4:00 PM.
  • The Spinal Tap didn't go well at all today.  Its usually a 5 minute procedure where they insert the needle, drip about 10 drops of fluid out, and then inject some chemotherapy drugs (ARC in this case).  Unfortunately this time it took 45 minutes and 4 pokes.  They couldn't get the needle in quite right the first time to get a flow of fluid so they had to poke again and again and again.  Of course after the first missed poke, Stephanie started screaming and moving which just made it worse until they were finally able to get it on the fourth poke.
  • After her required one hour of lying with her head lower than her feet, however, she was back to her old self, albeit quite tired out by the whole ordeal.
  • The trip back to Trenton was without throwing up this time (last two times had Stephanie throwing up for three hours non-stop after the Spinal Tap).  We had arranged that she recieve Ondansatron - a stronger form of Gravol, before the Spinal Tap this time.  It seems that it worked.  Talk about expensive though, at $18 dollars a pill, we were required to give her a dose of one and one-half pills this evening and another dose tomorrow.
  • Talked to our doctor about what the next phase is (as today's Spinal Tap was the last treatment of the CNS Prophylaxis phase).  The next phase that Stephanie will under go is called Interim Maintenance Phase.  Note that this is not the "long-term" maintenance phase that continues until the end of the 3 year treatment period - that comes later, after a Reinduction phase.  Just the same, this upcoming Interim Maintenance phase is fairly relaxed with a Methotrexate (via IV) session every two weeks at the clinic (ie, she doesn't have to be admitted).
  • Stephanie had no problems falling asleep tonight - she was exhausted.

Thursday, 23 October

  • Stephanie has been doing very well, both today and yesterday.  Michael's arm is bothering him very little if any at all...oh no, he's back to his old self now.  He still doesn't want to climb trees though.