Daily Diary
November 1998

Sunday, 1 November

  • Stephanie was feeling not too good again today.  Not throwing up or anything, but just feeling not good.  Hopefully its just the side-effects of the chemotherapy drugs.

Monday, 2 November

  • Stephanie is still not feeling too well.  She did take the time however, to tell me, without whining, that her "wrists hurt like they did before (ie, last month just before her relapse)".

Tuesday, 3 November

  • Today was a big (read: long) day for everybody.  Linda and myself both had blood taken to complete the matching process of Michael.  Stephanie, though, had the worse.   She had three drugs intraveneously (ie, through her port), she had Asparigenese intramuscular (ie, a needle in her leg), and she had one drug intrathecally (through her reservoir on her head).  She wasn't feeling well, so none of this helped.   Although she has told me that she prefers the intrathecal through her reservoir instead of the lumbar punctures, she still did a lot of screaming, yelling, and screaming.   To make things even worse, it appears that she is going to be one of the ones that reacts quickly with sideeffects from the chemotherapy directly to her head.  As soon as the doctor had left, she threw up everything she had in her stomach.  We're told its a common sideeffect.
  • By the time we got home, Stephanie was beat and exhausted.  She probably doesn't realize it, but next Tuesday will be the same set of drugs, plus a bone marrow sample...

Wednesday, 4 November

  • Stephanie felt wonderful all day.  She got up in a really good mood and basically stayed in a good mood all day.  Kind of surprising after a day like yesterday.

Thursday, 5 November

  • Stephanie wasn't too bad today.  Her steriod (Dexamethose I think), is really kicking in.  She is eating constantly throughout the day.  It really shows in her face and body. 
  • The important thing is that she continue to "poo"!  With the chemo she is recieving now, there is a real danger that she could get constipated.  To prevent it, she is on Lactulose and Colace.  I think that she has broken the record for "toot" length times.  They're pretty funny ... and she thinks so too.

Friday, 6 November

  • Chemo in Kingston today again. Fairly quick, as it was just her Asparagenese needle in her leg.
  • Her counts are really low now, the lowest they have ever been. We will have to make sure to keep the house extra clean and to limit who comes into the house as much as possible.

Sunday, 8 November

  • Stephanie still hasn't come down with a fever yet. We're kind of surprised because being so neutrapenic, its usually inevitable. She has however been complaining of a sore lower back. We'll have to keep a close watch on it to see if anything develops. At least her temperature is still OK.
  • Stephanie hair has been falling out as a result of this round of chemotherapy.   Stephanie took advantage of a once in a lifetime (... well, I guess three times now for her) opportunity and cut it herself with scissors.  Linda finished it off with the clippers.  She actually looks a lot better now.

Monday, 9 November

  • We didn't make it through the night. Stephanie's sore back was causing her to scream and squirm so by 11:30 last night we were heading out to Kingston. We sent Michael off to the neighbor. It was a long drive as Stephanie cried all of the way there.
  • By the time we got into Emergency, got xrays taken of her stomach to confirm that it was full (ie, constipated) and that that was the problem, it was pretty well morning. I guess that although she had been going pretty regularly to the bathroom, it wasn't enough to keep up with all the eating she had been doing. And to make things worse, some of the chemotherapy that she has been receiving (ie, the Vincrinstine) essentially paralyses the digestitve track.
  • They finally decided that the best solution would be to have Stephanie drink something called "Go-Lightly". Its a type of laxative. I think the should call it "Go-Quickly". We explained to Stephaine that she had the choice of either drinking the 8 cups of the stuff or that they would have to put a tube down (through her nose). Despite crying and still in pain. She got 3 cups of the stuff down (its tastes pretty gross) before she gave in to having the tube put down. Putting the tube down certainly did little for cheering her up. They were able to get the last 5 cups of stuff down through the tube.
  • Even though it eventually started to work, Stephanie cried pretty well throughout the day. Although they gave her a little bit of Morphine to try to calm her down, they really didn't want to use too much because it has a tendancy to slow down your metabolism as well.
  • Eventually by late afternoon, Stephanie was feeling a little bit better so she tried to eat a little bit of soup. The problem was that her tube was still. While eating, she knocked it and the tape that was holding it let go. She literally freaked out as the tube moved in and out with each (screaming) breath she took.
  • By early evening they took the tube out (they had kept it in in case she needed more "Go-Lightly") after some more xrays to confirm that her stomach was empty. It was amazing how quickly her personality changed after that. Finally our old happy Stephanie was back!
  • Needless to say, we were all exhausted by bed-time. None of us had slept since Saturday night. I slept with Stephanie in the room and Linda went to Almost Home.

Tuesday, 10 November

  • It was Stephanie regular chemo day today. Instead of staying in the Hospital to get it (things to happen quite as quick as at the clinic), they discharged her so she could have it downstairs at the Clinic. Same doctor, just politics.
  • It was supposed to be the same stuff as last week but the doctor decided to hold off on giving Vincrinstine to give her bowels a break. Just the same, she had chemo via her IV, via her reservoir in her head (which caused her to throw up again), and chemo via a needle in her leg.
  • Stephanie was supposed to have a bone marrow sample taken today to confirm that she is in remission. Unfortunately because her counts are so low, a sample would show nothing so the doctor postponed it till next Tuesday. When they do the sample, they are looking at the white blood cells to make sure that none of them are cancerous white blood cells. Because her counts are so low, there would be no white blood cells to look at, period. Hopefully her counts should be up next week.
  • By the time we got home it was supper time. We thought we were ready to settle down for a few days of rest but we were wrong. By 9:30, Stephanie's temperature was up to 38.8C so it was Michael to the neighbors and us back to Kingston. We had phoned ahead so they had her room all set up. We've been through this routine before so its not a big deal. Basically its a general anti-biotic via IV while they do cultures to try to identify exactly what the problem is.

Wednesday, 11 November

  • After making sure Linda and Stephanie were tucked in for the night, I returned to Trenton. I made it back by about 01:30 or so this morning. Michael is starting to complain about missing us so I didn't bother hanging around Kingston.
  • I talked to Linda tonight. Stephanie's temperature has come down under the general anti-biotics they are giving her. That's good.

Thursday, 12 November

  • I talked to Linda in Kingston tonight.  Stephanie is feeling OK.  However, her fever has come back and she has had one for most of the day.  They are still waiting for the final culture results to come back to help them try to identify what is making her sick.
  • The other suspicious thing is that they weren't able to draw blood through her port-a-cath.  In the end, they had to draw it through a poke in her arm.  When Linda talked to the doctor this morning, they didn't seem worried yet.

Friday, 13 November

  • Linda and Stephanie are still doing OK.  She still has a fever however.  The culture results from her urine have come back and showed that something was growing in it.   However, the anti-biotics that she has been on for the last few days should have cleared it.  They're going to continue to wait and see.
  • In order to address the poor blood return from their port-a-cath, they did an Echo Cardiogram this morning.  They wanted to see whether the tube coming out of her port-a-cath (and going into her heart) had a blood clot at the end of it.  They couldn't see any.  Sometimes a clot forms at the end of the tube and acts as a one way valve, letting stuff in, but none out.
  • The other possible source of infection could be the port itself.  Should they suspect that be the case, they would have to surgically remove it and then grow cultures from it.
  • They took Stephanie's stitches out of the incision they had made to insert the reservoir in her head.  They gave her some valium to try to keep her calm as they did it, but it really didn't work that well.

Saturday, 14 November

  • The doctors seem pretty sure that her infection is what they are seeing in her urine.   The particular strain, however, requires anti-biotics via IV (vice oral anti-biotics).  Bottom line is that Stephanie will be in hospital till at least Monday.
  • Stephanie's port is still causing problems.  It was blocked in both directions today.  They are still talking about possibly removing it.
  • Stephanie's head has started to leak at the incision where for her reservoir.  The naturally occuring pressure of the fluid around her brain is putting a lot of stress on the cut that hasn't quite healed yet.  They're talking about putting some temporary stitches in to make sure that the cut doesn't open up.
  • I made it to Kingston tonight to visit Linda and Stephanie and to give Linda a break by letting her go to Almost Home for a good night's sleep and shower while I spend the night with Stephanie.  Stephanie's stomach, face and temples are quite bloated, a result of her medications.  Her temperature is still coming and going.
  • She showed me her "staples" that the doctor has just put in to keep the cut on her head closed.  She showed me the staple gun the doctor left her with - it was a sterilized disposable one.  She also took great pleasure in showing me how she stapled a seam in one of her stuffed animals.  I don't know about that gleam in her eye - I'm sleeping with one eye open in case she has any ideas for me!

Sunday, 15 November

  • We had an alright night.  This morning, her temperature is still coming and going.
  • They were able to draw blood from he port today, which is good.
  • I left this afternoon to return to Trenton while Linda and Stephanie were preparing to walk (with Stephanie in a wheelchair) downtown to watch the Santa Clause parade.  It was in between anti-biotics and the doctor is always so supportive with trying to get the kids out of their beds as much as possible so it was no problem at all with her.  In the end it worked out well.

Monday, 16 November

  • Stephanie's temperature is still up and down.  Until it stabilizes, the doctor has to keep her in to give her anti-biotics via IV.
  • Just the same, the doctor is planning to give Stephanie her full Tuesday chemo tomorrow.   As well, they are planning to take a bone marrow sample to determine whether or not she is in remission.  We should get the results back in a day or two.
  • When I talked to Linda tonight on the phone, Stephanie was in an extremely good mood.   I could hear her giggling in the background as she was letting off some long and noisy farts (... Stephanie that is).

Tuesday, 17 November

  • All of the chemo went well today.  As well, they did take a bone marrow sample.   We expect to hear back over the next day or so as to whether or not Stephanie is remission.  The fluid that they took from her brain reservoir last week showed that her Central Nervous System was in remission.  All we need now is that her bone marrow also be in remission.
  • I drove to Kingston to bring Stephanie and Linda back to Trenton this evening.   They increased some of Stephanie's oral anti-biotics in an attempt to control the infection.  However, as we tucked Stephanie in for the night, her temperature was slowly going up.  As well, her breathing is very laboured.  Hopefully the latter is because of the distended stomach from all of her eating and from the medications she has been taking over the last week and a half.  Linda hasn't unpacked all of her bags just yet; we may have to return to Kingston overnight.

Wednesday, 18 November

  • Unfortunately we were right.  Stephanie's temperature was between 39 and 39.5 all night.  We talked to the doctors to make sure it was OK to give Tylenol, but it really didn't work.  We left for Kingston around lunch and got her tucked back into hospital and on anti-biotics via IV by supper.
  • From what the doctor is saying, she still suspects a bladder type infection.  Its just that oral anti-biotics aren't quite as effective in this case.  Her concern is that it could spread to the kidneys.  To complicate things, she mentionned that some of the results are showing kidney stress (from all of the chemo).  She's going to have Stephanie's stomach ultrasounded (hmmm, I think that that's a word) to see how they are doing.
  • Stephanie's port seems to be working better now.  They were able to draw blood from it twice.  That's good because it makes it much easier on Stephanie, otherwise she would have to get a needle each time.
  • We got some tentative dates as to when Stephanie would undergo her bone marrow transplant in Toronto.  As it is now, she would start radiation on 7 Dec with the actual transplant occurring on 14 Dec.  They call that day "Day 0".   From what I read, she would be in hospital for about three weeks as the new bone marrow takes hold.
  • To start things off, we have an initial meeting at Sick Kids in Toronto next week.

Thursday, 19 November

  • Stephanie's fever seems to be once again under control now that she is back on anti-biotics via IV.
  • The results from Tuesday's bone marrow sample are back.  Stephanie is in remission again!

Friday, 20 November

  • Linda and Stephanie went to Hotel Dieu Hospital to see a pediatric eye doctor.   Stephanie's right eye is still very weak.  When she relapsed in her central nervous system, there appears to have been some nerve damage done by those leukemic cells.   They examined it and could only say that there may very well have been some nerve damage and that radiation may provide some minor improvement.  There was some talk about maybe combining it with the radiation she'll receive at Toronto but its all pretty confusing right now.
  • Went to Kingston with Michael after school to visit Stephanie and Linda for the weekend.
  • By now, her face is really puffy and her stomach is big as well.  Michael noticed it as soon as we walked in but was polite enough to only quietly mention it.
  • Tonight was my turn to sleep with Stephanie in her hospital room.  Linda and Michael will sleep at Almost Home.  It lets Linda get a good night's rest (its really not restful at night in the hospital).  As well, it gives Michael some time with Linda; he has frequently mentionned that he misses Linda.

Saturday, 21 November

  • Stephanie was very talkative last night as we were settling down for the night.   She told me about all of the problems they had at the eye doctor.  His chair wasn't working well and they finally had to get her to stand on a stool.  She was funny about the whole thing.
  • Stephanie's temperature has been down for quite a while now.  We almost made it out the door (ie, discharged), but her head started leaking again (from the cut when they put her head reservoir in).  The danger is that if brain fluid can get out, germs can get in.  So they put a half dozen more staples in but it really doesn't seem to be doing that good. 
  • Its really too bad, 'cause her temperature is really down to normal and she seems to be feeling quite well.  She's been up on her feet much more and talking and smiling.
  • Stephanie wouldn't let me stay with her tonight.  I'll be staying at Almost Home with Michael.

Sunday, 22 November

  • The eye doctors want to do an MRI of Stephanie's head to see if they can learn more about her weak eye.  They'll try to schedule it for tomorrow.  Although the MRI itself is nothing, it takes quite a long time to complete.  During which, Stephanie will have to stay completely still.  As a result, they will put her out for the duration.
  • The brain surgeons were by to look at her leak again.  They are planning to put her out tomorrow and put in some big stiches to try to keep everything closed.  They'll try to coordinate with the MRI so they only have to put her out once but I doubt that it will happen.
  • When Stephanie's main oncology doctor came by, we found out more as to severity and meaning of Stephanie's eye problem.  It is possible that it is being caused by a small pocket of leukemic cells which are not being reached by the chemotherapy that she is receiving in her head reservoir.  It would also mean that it is not showing up when they test the brain fluid that they draw out at the same time.  Its not good news.   The radiation they were talking about on Friday is more to try to kill those leukemic cells than to try to improve her sight in that eye.  The long-term risk (as if there isn't enough already) is that she may develop cataracs later.  However, if she doesn't have the radiation done, the leukemic cells could spread and she would have a relapse again.
  • Michael and I drove back to Trenton this evening.  Unfortunately when I talked to Linda tonight, Stephanie's fever is back.  They've drawn blood and taken urine and are starting cultures again.  Additionally, they are going to draw a sample of brain fluid from her reservoir to see what shows up there.  In the meantime, they've started her on additional anti-bioitics via her IV.
  • The last word about her MRI is that it won't be before Tuesday.

Monday, 23 November

  • I talked to Linda this morning.  The inital results are back from some of the cultures.  There is a skin-based bacteria growing in her spinal fluid.  It means that something got in through the cut on her head.  It also means that the reservoir in her head has to be removed.  The surgery is scheduled for later today. 
  • In the meantime, they are going to give her a final dose of chemotherapy through the reservoir this afternoon.  After it's out, the only way to give her chemotherapy to her central nervous system is by spinal taps.
  • Right now, Stephanie's big upset is that she can't have anything to eat or drink until the surgery.
  • I talked to Linda around supper time.  Stephanie's chemo to her head went pretty good.  She didn't throw up this time.  Stephanie's surgery was postponed till tomorrow early afternoon.  They still have the MRI scheduled as well.  In the meantime, they have her on more anti-biotics.  Her fever is under control and she is very hungry.  She'll be able to eat tonight but then will have to fast again for tomorrow's surgery.
  • This postponement means that we may not be able to go to Toronto till Thursday.   They are trying to work that out and we should find out more about the plan tomorrow.

Tuesday, 24 November

  • They did the the MRI and surgery this afternoon/evening.  They put Stephanie out in the MRI room, did the MRI and then carted her down the hall and up an elevator (while she was still out) to the operating room to do the surgery.  Linda was there when they put her out and then was allowed to stand and watch just outside the MRI door as they took the MRI.  Then, she helped cart her down the hall to the operating room.   The surgery went over with no problems.
  • Michael and I drove to Kingston for the evening and are planning to spend the night.   They have decided that Stephanie is stable enough to make the trip to Toronto for tomorrow.  We will leave around 9:00 to be able to get there for our 13:00 appointment.  We should be back in Kingston by evening.
  • We checked in to see how Stephanie was doing before going to Almost Home for the night.   She was looking good but hungry.  When she had gotten back to her room, she had asked Linda for a pencil so she could write a phrase from a Disney CD she had been listening too over the last few days: "I want to eat like a pig!".

Wednesday, 25 November

  • It was off to Toronto this morning.  We made it there and on time with no problems.   The Hospital is really different.  It's laid out as a fancy mall.  Little shops, eatery and all.
  • Our 13:00 appointment turned into a late afternoon appointment before we were seen by the doctor.  I guess other people in Toronto were sick today!  We filled in the doctor on the latest details of the previous few days of Stephanie (infection in her spinal fluid, removal of her reservoir, etc).  He questionned us extensively about Stephanie's right eye that was turned in (which had sort of grown more pronounced during the day).  After he was done, he explained much to our surprise, that he strongly recommended that Stephanie only be transported back to Kingston by ambulance (and not car).  His main concern is that if she has a seizure along the way, we would be helpless in a car.
  • We finally got into a room by late evening.  The rooms here are very nice.   Mostly all singles with TV, built-in cot for parent, and bathroom with shower/bathtub.
  • Michael and I found a hotel close by that was offering "parent rates".   Between parking, meals and hotel, I can see how this is going to be expensive come bone marrow transplant time.

Saturday, 28 November

  • They finally were able to arrange for ambulance transportation.  Because of the distances involved, it had to be air ambulance.  Stephanie thought this was great.
  • Linda and Stephanie made it back to Kingston by air ambulance with no problems.   Michael and I made it back to Trenton with no problems.
  • The plan for Stephanie is for the doctors to work out on Monday a combination of radiation and chemotherapy to prepare her for her bone marrow transplant.  The question in the air is whether or not to radiate her bad eye.  One to kill any hidden leukemic cells and two to maybe improve her sight.  We'll find out more on Monday.   In the meantime, she is still on anti-biotics for her infection in her spinal fluid.
  • Overall, however, Stephanie seems to be doing much better now.  Her fever has been down for quite a few days now and she has been feeling well enough to get up and walk around.  Her face and tummy are still quite bloated but she is almost off the Dexamethose so I expect she should be coming back to normal fairly soon.

Sunday, 29 November

  • Today was the clinic's Christmas party.  I drove down from Trenton with Michael.   Stephanie made me bring her favorite "party" dress.  Both Michael and Stephanie enjoyed themselves.

Monday, 30 November

  • Michael threw up last night.  He seemed OK this morning but he insisted that he stay home in case he was still sick.  I gave in.
  • We drove back to Kingston this morning to drop off a fruit basket that St Peter's school had given Stephanie.  I should have brought it with me yesterday, but I forgot it.   It was way too big for Stephanie and Linda so they had fun carrying it around in a cart and sharing it with everybody else.
  • Michael didn't seem too sick afterall.