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At home on January 6, 1999.

• 1999 Jan 7: Platelets are 10. We're advised to come down right away for a transfusion.

• 1999 Jan 11 - 13: Appointment 8D. We are admitted for chemo: cycle 7 of ICE. This is the first time we haven't had to wait for a bed. We are on 8B (BMT ward) and therefore unfortunately have to deal with isolation again. On day 3 Emily's hemoglobin is 64 and she gets a transfusion of packed reds. By now Emily is very well adjusted to hospital life. Port access is routine with her (she doesn't even flinch when the Huber needle is inserted) and for her the worst part of the procedure is the smell of the pink disinfectant swab and the peeling off of the tape afterwards. At age two-and-a-half she knows all about CT's, chest X-rays, fingerpokes, insuflons, etc. and takes it all in stride. She likes to help with the various procedures and the nurses are very accommodating, allowing Emily to push the syringe when flushing or heparinizing her central line. Helping in these procedures seems to give her a sense of control over what's happening to her. If she's in her hospital room and the IV pump begins to beep (signalling the need for a flush or whatever) she likes to press the Call Button herself and tells the answering nurse, "I.V. is beeping!". Emily also loves the clinic playroom, especially the toy kitchen where she will putter endlessly preparing meals and washing dishes. The hospital has become her (and our) second home, and she is quite comfortable here.

• 1999 Jan 21: Follow-up eye clinic appointment. Emily's head-tilt is not as apparent. Her eyesight is fine; no need for glasses. She still has a slight nystagmus (eye tremor) which was one of the presenting symptoms last August. We then go to 8D for a fingerpoke. Because both hemoglobin and platelets are low, Emily receives a transfusion of both.

• 1999 Jan 26: Platelets low. We attend 8D for a transfusion.

• 1999 Jan 28: Emily has fever and vomiting. We are advised to come in for a chest X-ray. She wasn't neutropenic at last check (this morning) but they want to rule out pneumonia. We spend the night in Emergency. Platelets and hemoglobin are low, so both are transfused. We are discharged from Emergency at 6:00 AM Jan 29.

• 1999 Jan 30: Fever 40.2 C under arm. We are told to come in to check polys. We go to Emerg; Emily is not neutropenic (0.95). Discharged.

• 1999 Feb 1: MRI scheduled, but Emily has a cough. The nurse who examines her feels Emily isn't well enough to be sedated for the scan. MRI postponed until March 12 (next available slot!). We attend our clinic appointment. Our oncologist feels March 12 is unacceptable; she has asked for rebooking within 2 weeks. Her plan is that if the MRI shows tumour response, then she will continue ICE. Otherwise, she may switch Emily to Baby POG. Emily's platelets are low, and she gets a transfusion before we return home.

• 1999 Feb 8: Attend 8D clinic for chemo. Platelets too low (79). Chemo delayed. We return home.

• 1999 Feb 12-14: Attend 8D clinic. We are admitted for chemo: cycle 8 of ICE. On day 3 Emily's hemoglobin is 70. She gets a transfusion of whole blood before we are discharged home.

• 1999 Feb 17: Emily vomits, complains of sore neck, and has been progressively ataxic the past few days. We attend emerg for a CT scan. Spend night in emerg; CT scan shows tumour is "unchanged" since last Fall. We are given the option to hang around Emerg for a few more hours and attend 8D clinic in the morning (Thursday) for an assessment, or go home and come back to clinic on Friday for an assessment. It's now 2:00 am. We decide to sleep in Emerg for a few hours and attend clinic in the morning (our oncologist doesn't have clinics on Friday anyway).

• 1999 Feb 18: Attend clinic. No significant findings. We go home.

• 1999 Feb 22-24: Emily has a fever, and is neutropenic (polys = 0). We attend Emerg. Chest X-ray shows no problems. Platelets are 22, hemoglobin is 70. Transfuse both, then transferred to North York General Hospital (no beds at HSC) to start IV antibiotics (piperacillin and tobramycin). By Wednesday (Feb 24) Emily is afebrile and cultures are negative. We are discharged home.

In good spirits at North York General Hospital.

• 1999 Feb 27: We attend Sick Kids for Emily's long-awaited MRI today (the last one was in August, before her surgery! -- We often envy our U.S. friends the frequency of their MRI's). A CBC is done before the scan, since yesterday's fingerpoke clotted before the lab could run it through the machine. Emily requires sedation for this lengthy (90 minutes) scan. It takes a second injection of Nembutal, and still she squirms for quite a while before the sedation kicks in. Emily wakes up partway through the scan as they are repositioning her to do the spine. They got the head done, but we will have to rebook the MRI to do the spine, under general anaesthetic from now on (if Nembutal fails once, it seems they don't try it again). Meanwhile we get the results of the CBC. Platelets are low (19) so we drop by Emerg for a transfusion before going home.

Emily undergoing an MRI.

 

Clowning around with David.

• 1999 Mar 4: Attend 8D clinic for chemo. Platelets too low (43) to start chemo. We return home.

• 1999 Mar 8: Attend MRI for part 2 of scan (spine) under general anaesthetic. Afterwards we go to clinic for chemo. Platelets are too low again (62). Chemo will have to be delayed further. We return home.

• 1999 Mar 11: Attend 8D clinic for chemo. Platelets are finally back up (93) but there are no beds. Chemo is postponed again. The one fantastic news, however, is that the MRI from two weeks ago shows that the tumour is no longer visible! The report says "subtle enhancement in fourth ventricle with no mass"! We are told the "subtle enhancement" is likely scar tissue from the surgery. We return home happier than we have ever been in our lives!

• 1999 Mar 12-14: Attend 8D clinic for chemo. There is a bed for Emily on 8B (reverse isolation ward, therefore no visitors, unfortunately). Begin cycle 9 of ICE. Hemoglobin is low (62) on day 2, and Emily gets a transfusion. We are discharged on Mar 14.

A favourite treat!

• 1999 Mar 22: Platelets = 12. Attend 8D clinic for transfusion.

• 1999 Mar 26: Platelets = 25. Hemoglobin = 61. Attend 8D clinic for transfusion of both.

• 1999 Mar 31: Attend Neurosurgery clinic for Emily's follow-up appointment. Our neurosurgeon confirms results of the February MRI. The tumour has shrunk steadily over the past six months, leaving nothing but a "slight enhancement". We ask if surgery would be considered if the tumour were to grow back. The answer is no. Surgery would not be a cure at that point, and would not be considered.

• 1999 Apr 6: Attend 8D clinic for chemo. No beds. We return home and wait by the phone.

• 1999 Apr 7-9: Attend 8A for chemo: cycle 10 of ICE (last cycle of ICE). Hemoglobin low (66), so Emily gets a transfusion of packed reds. Discharged on Apr 9.

• 1999 Apr 13: Platelets are low (24). We attend 8D clinic for a platelets transfusion.

• 1999 Apr 16: Attend 8D for routine fingerpoke. Platelets = 25. Hemoglobin = 61. Emily gets a transfusion of both platelets and packed reds.

• 1999 Apr 17-20: Emily has a fever. We present at Emerg for bloodwork and chest X-ray. She is neutropenic , and we are transferred to North York General by taxi at 2:00 am (no beds at HSC) to begin IV antibiotics (piperacillin and tobramycin). Discharged from NYGH on Apr 20.

• 1999 Apr 22: Attend 8D for fingerpoke. Platelets = 11 (low). Emily gets a transfusion.

• 1999 Apr 26: Attend 8D for fingerpoke. Hemoglobin = 62 (low). Emily gets a transfusion of packed red cells.

Emily and David, May 1999.

• 1999 May 4: Attend 8D clinic for chemo. Will be starting a different protocol: CCNU and vincristine (our oncologist prefers not to continue ICE because of potential kidney damage and loss of salts after prolonged treatment). It will be on an outpatient basis on a six-week cycle (CCNU once every six weeks, vincristine once a week on weeks 1, 2 and 3). The plan is for two cycles, then re-evaluate and probably start cranio-spinal radiation in August. Platelets (66) are too low to start chemo today. We return home.

• 1999 May 7: Attend 8D clinic for chemo: cycle 1 of CCNU/vincristine. CCNU (also called lomustine) is administered orally. Vincristine is by IV push through Emily's port.

• 1999 May 13: Attend 8D for chemo: vincristine

• 1999 May 20: Attend 8D for chemo: vincristine. Today is Emily's 3rd birthday! She gets a big teddy bear from the 8D staff. Next chemo is scheduled for June 17.

We told Emily that she could choose her birthday cake when we went to the grocery store. This is what she picked. Happy 3rd birthday Emily!

• 1999 May 21: The hospital calls us today to tell us that a patient who was in the playroom yesterday has developed chicken pox today, and Emily must come in for the Zoster Immune Globulin immediately. We head over to the hospital. Emla is applied to both thighs, and two nurses inject the ZIG into each leg simultaneously. (Here is one of the many benefits of being treated in a pediatric hospital; an adult hospital might not have thought to do both legs at once and would have had to deal with a screaming child for the second leg.) The injection seems quite painful despite the Emla, and Emily complains of pain in her legs afterwards.

• 1999 May 22-24: Fever neutropenia. Present at Emerg. We are admitted to 7B and started on IV antibiotics (piperacillin and tobramycin). Hemoglobin is low (62) so Emily receives a transfusion of red cells. By May 24, Emily is afebrile and cultures are negative, but she is still neutropenic (polys 0.06) so we are discharged on oral antibiotics.

• 1999 Jun 10: Emily's ataxia recurs. Hospital advises us to watch her, and bring her in if she has other symptoms such as vomiting.

• 1999 Jun 13: Emily develops intention tremor in her left hand.

• 1999 Jun 14: The intention tremor is still present. We call the hospital. They schedule a CT scan for tomorrow.

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