[PREVIOUS] | 1 | 2 | 3 | 4 | 5 | [NEXT]

• 1998 Sep 28 - 30: Hospital admission for fever-neutropenia, requiring IV antibiotics. Low hemoglobin on the first day requires transfusion of packed red cells.

 

Emily has been carefully watching all the procedures which have been done to her at the hospital. She re-enacts them at home with her doctor’s kit. This seems to be therapeutic for her as a way to express herself and potentially alleviate some fears in the future. Doing "procedures" on herself (but usually on Mom) is one of her central play activities.

 

• 1998 Oct 11: It’s Thanksgiving Weekend (Canada, eh); we all go to Glen Haffy Conservation Area for Pumpkinfest. This is our first time out of the house and not to the hospital. Emily and David have a good time in the fresh air. Emily pushes David around the grounds in the stroller.

Preparing for Halloween.

• 1998 Oct 13: Clinic appointment. Emily cries as soon as we enter the hospital lobby. Chemo delayed due to lack of beds on 8A. We go home and wait by the phone.

• 1998 Oct 15 - 17: Hospital admission for chemo: cycle 3 of ICE.

• 1998 Oct 18: Emily's ataxia returns suddenly. We wait and see.

• 1998 Oct 22: Emily's ataxia is still present. We are advised to present at Emergency for a CT scan. We are very worried as we drive to the hospital, as we have read of many other cases of rhabdoid which relapsed fatally only weeks after surgery. However, the CT scan shows nothing alarming, and in fact the tumour may even have shrunk slightly. No explanation for the ataxia. We return home very relieved.

• 1998 Oct 25: Emily has a fever and we are advised to present at Emergency. CBC results indicate she is not neutropenic and a chest X-ray shows nothing abnormal. We return home around midnight, tired but happy to have avoided another hospital admission.

• 1998 Oct 28: The visiting homecare nurses have taught us how to administer G-CSF. The drug is administered once a day through an Insuflon (a subcutaneous port inserted into Emily's upper arm) which is great because this means she has a needle poke only once every seven days to insert a new Insuflon rather than a poke every day for every shot.

Emily pretends to give herself G-CSF in her Insuflon.

• 1998 Oct 31: Emily has been tired and quite pale the past few days. Nevertheless she enjoys a great Halloween, answering the door in the clown costume grand-maman made for her. She "discovers" Smarties (yum!) and spends the next few days playing trick-or-treat with the leftover candy.

Halloween 1998

• 1998 Nov 3: Clinic appointment. Chemo delayed due to lack of beds on 8A. We go home and wait by the phone.

• 1998 Nov 7 - 9: Hospital admission for chemo: cycle 4 of ICE. The hospital is so backlogged with kids waiting for chemo that they've set up a "week-end blitz" (in what is usually the Haem/Onc day care room) to try to clear backlog. Everything is very well organized. Emily's hemoglobin is low and, by the third day, requires transfusion. Lester requests forms for directed blood donation for future transfusions (he is the same blood type as Emily. Sylvie, who is also compatible, is not an ideal donor as she is still nursing 12-week-old David).

• 1998 Nov 16: We begin attending an outside lab for Emily's twice-a-week bloodwork. Up until recently home-care had arranged for a phlebotomist to come to our house, but they cannot do off-site fingerpokes (the volume of the blood sample from a fingerpoke is too small and usually clots before they can get it back to the lab), and they are having more and more trouble getting the blood from a vein (Emily's veins are very small). We have managed to locate a local lab that says they will allow us to attend for on-site fingerpokes. Unfortunately they haven't got the pediatric experience that Sick Kids Hospital does, and they use a lance, rather than a needle prick (we later provide them with a blood-letting pen, but they just don't have the knack, I guess, and can't get enough blood from the smaller puncture hole). Emily quickly becomes cooperative for this procedure, even though her fingertips are bruised and sore for several days afterwards and the lance cuts take a long time to heal. Still, she tells us she prefers this to the venipuncture.

• 1998 Nov 18: Emily's platelets are low. We attend the hospital clinic for transfusion.

• 1998 Nov 20: Emily turns two-and-a-half. We have a quiet party at home with a cake. And lots of Smarties!

• 1998 Nov 26: Clinic appointment. Chemo delayed due to lack of beds on 8A. We go home and wait by the phone.

Relaxing at home while waiting for the hospital to call.

• 1998 Dec 1 - 3: Hospital admission for chemo: cycle 5 of ICE. We are admitted on 8B (bone marrow transplant ward); still no beds on 8A (haem/onc ward). The BMT ward is a reverse isolation ward; parents are allowed in, but no other relatives, including siblings, are allowed to visit. This is a bit awkward, as three-month-old David has been pretty much glued to Sylvie's hip since birth. Nevertheless we manage to do some baby swapping in the lounge so that Sylvie can visit with Emily periodically during the day, and Lester stays with Emily at night. Emily's hemoglobin is low, and on the second day she receives her first transfusion of packed reds from Lester's directed blood donation which he had arranged last week in anticipation of low counts. Also on the second day Emily complains that her eyes are hurting. One of her eyes is turning in a bit. Two doctors from ophthalmology come to have a look, administer some drops, then return later and confirm there is a slight rotation in her right eye which might be caused by the tumour. Emily occasionally tilts her head when doing an eye-intensive activity (watching TV, playing on the computer) and the ophthalmologists think this may be an attempt to compensate for a visual disturbance. We make an appointment for her to be seen in the eye clinic after this round of chemo.

Sleeping through a blood transfusion.

• 1998 Dec 4: Eye clinic appointment. Emily sails through the depth-perception test, the colour test, and the letter-recognition test. Her eyes are then alternately patched to see if the head tilt disappears; it does, sort of (it's hard to tell, because even normally it isn't always present, or is hard to detect). They conclude that she is extremely fortunate, in that the type of rotation in her eye (caused by pressure from the tumour) is something which is almost never compensated for, yet she has managed to compensate for it somehow and as a result her vision has been unaffected (it normally causes double vision, of which she shows no symptoms). They ask permission (which we grant) to take photos of this unusual phenomenon for teaching and/or scientific publication purposes.

• 1998 Dec 11: Platelets are low. We attend 8D clinic for transfusion.

• 1998 Dec 14: We attend 8D clinic for fingerpoke (we were downtown for David's immunization). Hemoglobin and platelets are both low, but polys are on their way back up. Emily gets a transfusion of packed reds. We are advised to stop the G-CSF, which may allow the platelets to recover on their own (they're 43, not dangerously low but a bit on the low side for a brain tumour patient because of the risk of brain hemorrage).

• 1998 Dec 17: Appointment 8D clinic. Chemo delayed due to lack of beds on 8A. Emily's platelets are down to 16 (very low). She gets a transfusion, then we go home and are told to come back Monday (they want to try to get the chemo in before Christmas).

• 1998 Dec 21 - 23: Hospital admission for chemo: cycle 6 of ICE. There are still no beds on 8A. We are on 8C, and as the nurses in that ward are not qualified to administer chemo drugs, Emily will have to go to 8A or 8D on a daily basis to get her chemo (it's just down the hall, and not a big deal). As the Etoposide is being flushed on day 1, Emily leans to one side of the bed and the IV tubing pops open at one of the connections. Lester quickly closes the slide clamp and calls the nurses for help. A nurse replaces a section of the tubing, and seems to think that Emily received most of the drug. Upon discharge Emily's hemoglobin is getting low (72) but still just above transfusion levels (70). She doesn't get transfused before leaving, though we are concerned that she will be anemic during the coming holidays.

• 1998 Dec 25: We spend a quiet Christmas at home. Lester's parents come to visit. Emily is in good spirits but low-energy, and she reports that she's feeling tired. We have good reason to suspect her hemoglobin is low.

• 1998 Dec 29: Appointment 8D clinic for fingerpoke. Hemoglobin is 64, platelets are 33. Emily gets a transfusion of both.

• 1998 Dec 31 - 1999 Jan 1: New Year's at home. Emily is neutropenic, so we decide against going out. We welcome in the New Year while camped out in front of the fireplace with the kids.

December 1998

[PREVIOUS] | 1 | 2 | 3 | 4 | 5 | [NEXT]

[Top]