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Emily and David at home, Nov 15, 1999

• 1999 Nov 19: CT scan results show tumour re-growth. Our options at this point are clinical trial (no expectation of cure, only more time) along with palliative care, or palliative care alone. We elect to consider participation in a clinical trial. The pathology results for last week's LP are negative, indicating there is no dissemination to the spine, though what should have been good news has now become rather academic.

• 1999 Nov 20: We celebrate Emily's three-and-a-half year birthday. She is in good spirits. Other than the ataxia, she has no other symptoms.

• 1999 Nov 22: The hospital calls us. After much discussion with the clinical trials oncologist, they have decided on a drug: Irinotecan, a phase II drug. We are to come in tomorrow to discuss this, and if we agree, we shall go for bloodwork and a chest X-ray and Emily can start Irinotecan the following day.

• 1999 Nov 23: Attend 8D clinic and discuss Irinotecan. Side effects are supposed to be minimal (sometimes diarrhea). It is to be given over 1-hour IV infusion for five days, every three to four weeks. Because the side effects are so mild and Emily enjoys herself at the hospital almost as much as she does at home, we agree to participate in the clinical trial, hoping (though we know the odds are very slim) that the drug might have some effect in shrinking the tumour, or at least slowing its growth and prolonging quality of life. Emily gets a chest X-ray and complete blood work-up in anticipation of tomorrow's chemo.

• 1999 Nov 24: We attend 8D to begin cycle 1 of Irinotecan. We have agreed to participate in a study which will monitor the levels of the drug in Emily's system following the end of the infusion (1 minute post-infusion, 5 minutes post, 15 minutes post, 30 minutes post, 60 minutes post, 2 hrs post, 4 hrs post, 6 hrs post, and 8 hrs post). We are free to opt out at any time, and the study will simply use what we've given them up to then. Because the test samples cannot be taken from the same line through which the chemo was administered, Emily requires a peripheral I.V. for this study (she hasn't needed a P.I.V. in over a year, thanks to her port which has redeemed itself after all those problems it gave us those first few weeks post-surgery). Finding a good vein takes two tries and Emily gets upset, but afterwards she's completely relaxed about the frequent blood draws. As the day progresses, however, the blood samples get harder and harder to draw from the peripheral I.V. (which isn't really designed for multiple blood draw). By 7:15pm, after the 6-hour draw (the eighth sample) is obtained with great difficulty, we (Mom and Emily) are both pretty exhausted. We decide to call it quits, get the P.I.V. removed and head home, with Emily's port heparinized but still accessed (it will stay accessed during the treatment, so no bath for five days).

• 1999 Nov 25: Attend 8D for cycle 1 of Irinotecan (day 2 of 5).

• 1999 Nov 26: Attend 8D for cycle 1 of Irinotecan (day 3 of 5).

• 1999 Nov 27: Attend 8A for cycle 1 of Irinotecan (day 4 of 5).

• 1999 Nov 28: Attend 8A for cycle 1 of Irinotecan (day 5 of 5).

• 1999 Nov 30: Attend 8D for fingerpoke. Blood results are good. Emily has had no side effects at all from the Irinotecan. She is her usual chatty self.

• 1999 Dec 4: Emily's quality of life has been very good since the relapse -- no nausea or vomiting, good disposition. Her ataxia and intention tremor did not continue to worsen (as it did in the June 1999 relapse). Rather it seems to have "plateaued". However, today we notice that the ataxia is starting to worsen. She has a much more unstable gait and requires hand-holding to negotiate stairs.

Preparing for Christmas with some reindeer friends.

• 1999 Dec 6: Attend 8D for CBC and chemistry from port. Next chemo scheduled December 16-20.

• 1999 Dec 9: The whole family goes to the hospital for the B.R.A.I.N.child Christmas Party, for families of children with brain tumours. Many of the doctors and staff are there, and there is dinner for everyone and presents for the kids. Everyone has a nice time (last year we were so busy getting adjusted to everything that we didn't make it to the party).

• 1999 Dec 13: Attend 8D for fingerpoke. Our oncologist examines Emily. She says she doesn't see dramatic or significant improvement, but she feels it's worth doing a second cycle of Irinotecan. Since the counts are okay, we'll start cycle 2 today. A CT scan is scheduled for day 5, to verify if Irinotecan is having any effect on the tumour.

• 1999 Dec 14: Attend 8D for cycle 2 of Irinotecan (day 2 of 5).

• 1999 Dec 15: Attend 8D for cycle 2 of Irinotecan (day 3 of 5).

• 1999 Dec 16: Attend 8D for cycle 2 of Irinotecan (day 4 of 5).

• 1999 Dec 17: Attend hospital for CT scan, then go to 8D for cycle 2 of Irinotecan (day 5 of 5). Outside the clinic playroom Emily meets some of the players from the Toronto Maple Leafs and gets several autographed pictures (she has no idea who these guys are, but she is happy to add the photos to her album, next to the ones she got from the players' visit last year).

• 1999 Dec 19: Over the past few days, particularly yesterday, Emily's ataxia has progressed significantly. She has marked difficulty walking, and her gait is shaky. Yesterday she fell a few times. She cannot safely climb steps. She no longer uses her left hand for feeding herself (too much tremor). Nevertheless her disposition remains good. She has no nausea or vomiting (either ICP or chemo-induced). She has not reported any headaches or other pain. She is, however, slightly more volatile and more easily upsettable than normally.

• 1999 Dec 24: The clinical trials oncologist calls us at home with bad news. The CT scan shows that the tumour has grown 40% in the past four weeks. Irinotecan does not seem to be working. Fortunately there is no sign that she is hydrocephalic at this point. We are to come to the clinical trials clinic on January 4 to discuss the possibility of a different drug (either Fotemustine, Temozolomide, or Thalidomide). If Emily begins to show signs of ICP (intra-cranial pressure) she will probably need a shunt, though so far there's no indication of this. This is not the news we had hoped for. Emily, however, is in great spirits and attends a Christmas Eve party at Great-Uncle George's house.

• 1999 Dec 25: Emily and David have a great Christmas, opening their presents, fighting over the toy cash-register they received from Playhaven's Janet and Sue, and attending yet another Christmas party, this time at Great-Auntie Kathy's (as usual, the kids have way more energy than Mom and Dad!)

• 1999 Dec 28: Just before noon Emily begins crying and complains that her head hurts. We page the haem/onc fellow on call, who asks us to bring Emily in to Emerg for an assessment. Emerg does bloodwork and haem/onc debates whether to do a CT scan. Since Emily is looking very good by now (she's smiling and very chatty) they decide against the CT scan and discharge us around 6:30 p.m. We are to watch her closely for further headaches, changes in behaviour, or sleepiness.

• 1999 Dec 30: Attend 8D for bloodwork (CBC, chemistry).

A bed-time story.

• 1999 Dec 31: Several times today Emily complains of headaches, which seem to pass after about 10 minutes. She spends much of the day sitting on the couch to play. She wakes up spontaneously at 11:59pm and is therefore able to welcome in the New Year with us.

New Year's Eve 2000: Dad, Emily, Mom and David.

• 2000 Jan 1: Emily complains of headaches this morning, but seems fine in the afternoon and has a good appetite at Great-Auntie Kathy's annual New Year's Day party in the evening.

• 2000 Jan 4: Attend 8D for meeting with clinical trials oncologist. He feels that Fotemustine (a Phase I experimental drug) will work faster than an anti-angiogenesis drug such as Thalidomide. Fotemustine inhibits cell division by affecting DNA, while Thalidomide would inhibit growth of blood vessels (i.e. any effect wouldn't occur until new blood vessels tried to be constructed). We agree to try Fotemustine. Side effects are mainly drop in platelets. Emily will be receiving dose level 4, which is at the higher end of the dose level. It has already been tested at lower doses on other patients with acceptable results (i.e. no unacceptable side-effects). It will be administered through IV infusion over 1 hour, every three weeks assuming Emily's platelets recover. Emily receives her first cycle of Fotemustine at 5:00 p.m., and we return home.

• 2000 Jan 7: Emily's headaches become more frequent, and don't seem to be controlled by acetaminophen (Tempra). We call our clinic nurse, who arranges for a prescription of oral morphine.

[Lester finds the decision to go to morphine at this point psychologically difficult. Only three days after the start of Fotemustine, he was expecting perhaps a higher dose of acetaminophen or maybe going to codeine; for morphine is probably the most potent analgesic, reserved for extreme pain and terminal cases. He is worried that early sensitization might leave no other drug if the pain becomes worse, though we are told that this is rarely the case. In a way, the use of morphine at this point signalled the beginning of the end -- quite depressing.]

• 2000 Jan 10: Attend 8D for bloodwork (CBC and chemistry). Emily has a cold, and is examined by our clinical trials oncologist.

• 2000 Jan 12: Emily has been feeling crummy the past few days, but her mood improves today.. She says her cough and stuffy nose are bothering her, but that she doesn't have a headache. She asks us to write down (in the medical log book that we keep) that she is happy.

• 2000 Jan 17: Attend 8D clinic for bloodwork (CBC and chemistry). Emily has been in a good mood for the past few days and hasn't required morphine the last 2 days. Her platelets are low (44) but hopefully on the way up, so Emily doesn't get transfused. However, as her liver is showing signs of elevated counts (of what, I'm not sure and didn't think to ask), it will have to be checked again in 3 days.

• 2000 Jan 20: Attend 8D for bloodwork (CBC and chemistry). Platelets are 51, just above the transfusion threshold (50) so Emily doesn't get transfused. Liver results are down a bit (this is good) though they may go back up. Monday's chemo will probably depend on the platelet levels. Emily's mood continues to be good over the past few days, though she doesn't have much energy and spends most of her time playing on the couch.

These days Emily is quite tired and spends most of her time playing on the couch.

• 2000 Jan 24: Attend 8D for bloodwork (CBC and chemistry). Platelets are down again (43). As this may be just a transient dip, Emily doesn't get transfused. Too low to proceed with chemo, however. We are to come back in 3 days for a fingerpoke.

• 2000 Jan 25: Emily has been constipated recently, most likely from the morphine (we are giving her a dose when she wakes up in the morning, and again at lunch; this seems to get her through the day without headaches, though occasionally she needs a third dose around supper time). We begin to give her ex-lax to help the constipation (1/2 square at breakfast). Just after lunch Emily vomits, a large quantity but not projectile.

• 2000 Jan 26: Around noon today Emily begins to tilt her head to the left, very noticeably. This lasts about half and hour and then disappears.

• 2000 Jan 27: Attend 8D for fingerpoke. Platelets are 41. Emily gets a transfusion. Today, for the first time in over a year, Emily is not happy to be at the hospital and asks to go home. Over the course of her treatments this wonderful hospital has become a second home to her, and she is usually chatty and friendly with the nurses, loves to play in the playroom, and even if she's tired she never complains about being here. Her familiarity with the hospital was one of the main reasons we agreed to participate in the clinical trials, knowing Emily has no problems with fingerpokes, scans, port access, doctors and nurses. Today, however, is different. She is withdrawn and quiet with the staff and quietly repeats to me that she wants to go home. There is a solemn change in her that is noticeable to several staff members.

• 2000 Jan 28: Emily hasn't had a bowel movement in close to a week. We call our clinical trials nurse for advice. She instructs us to administer a pediatric Fleet Enema, and also faxes a prescription for lactulose to be given orally on a daily basis to help prevent future constipation. Our clinical trials nurse is an especially gentle and attentive person who has taken excellent care of Emily during our recent visits. The pediatric Fleet Enema turns out to be very effective advice; Emily passes a huge bowel movement and seems quite a bit happier afterwards.

• 2000 Jan 29-30: Emily's condition takes quite a slide this weekend. The oral morphine doesn't seem to be controlling the headaches. We page the haem/onc fellow on call, and are advised to raise the dose from 2mg to 4mg. By morning Emily is in great discomfort and begins screaming. Haem/onc advises us to raise the dose again to 6mg. This new dose seems to work in managing Emily's pain, but it means waking her from sleep every four hours at night to administer it, or risk having her experience breakthrough pain. It appears that Emily has not had a significant response to Fotemustine.

• 2000 Jan 31: We have decided that we want to discontinue further cancer treatment and to keep Emily home at this point. Her ataxia has progressed over the past two days to the point where she is unstable even when sitting. The intention tremor is now in her right hand, and as a result she cannot feed herself. Her neck seems stiff, and she winces and protests when we move her. At times she seems agitated and confused, forgetting the names of familiar objects such as some of her toys. Arrangements are made for delivery of a portable subcutaneous infusion pump, which will administer a steady dose of morphine (eliminating the need to wake Emily up at night for her morphine or risk breakthrough pain). Our homecare nurse was to set it up today, but the pump arrived too late. It will be started tomorrow instead. Our clinical trials nurse faxes a prescription for lorazepam (an anxiolytic and sedative also called Ativan) to administer orally when Emily seems to experience anxiety. We ask our clinical trials nurse about cancelling the MRI which was scheduled this week. Emily's last visit to the hospital suggested she was no longer happy to be there and we feel forcing her to be sedated for a 90-minute scan would be against her wishes and would provide no medical benefits. Our nurse speaks to our clinical trials oncologist and they both agree that there is no medical need for the scan at this point, that it would probably only confirm what we already know: that Fotemustine hasn't worked.

• 2000 Feb 1: Our homecare nurse (another wonderful person who has taken excellent care of Emily) comes to set up the morphine pump. The morphine is infused through an insuflon in Emily's arm. The pump is very small (not much bigger than a walkman) and runs on one 9-volt battery. The morphine comes in a small cassette which plugs into the bottom of the pump. The cassette will have to be replaced every few days. The whole device is very portable and it's a relief not to have to wake Emily up to administer the morphine by mouth.

• 2000 Feb 2: For the past hour this afternoon Emily has been cranky and saying she's not feeling well. We worry that the current level of morphine isn't managing the pain, until we notice that Emily has pulled out her insuflon! We have no idea how long it's been out. We immediately give her an oral dose of morphine which seems to hold until our homecare nurse comes by to reinsert a new insuflon.

• 2000 Feb 3: We notice a reddish-purple bruise at the insuflon site. Our homecare nurse examines it during her visit, thinks it may be due to low platelets and that the insuflon needle may be causing trauma. The nurse will try a different system, called a "soft-set", tomorrow.

• 2000 Feb 4: Our homecare nurse comes by to insert the soft-set in Emily's left thigh. This seems much more comfortable and less likely to be yanked out.

• 2000 Feb 5: Emily is in a good mood in the morning, eats a bit of pancake, then naps from 10:30 to 2:00 p.m. In the evening she has trouble settling, and begins "grunting" every few minutes. The grunting goes on throughout the night, and doesn't seem to be associated with pain (in fact the morphine pump seems to be managing the pain amazingly well; the pump keeps the level much more constant and we've seen little evidence of breakthrough pain).

• 2000 Feb 11: Fleet enema hasn't been working, and Emily is constipated. This is a common side-effect with morphine. Our homecare nurse suggests Microlax (another kind of enema), which we try with good results. It has been two weeks now since Emily's big slide. Emily is drowsy all the time, probably from the morphine though possibly as a result of pressure from the tumour. She has 3 to 4 sleep/wake cycles in a 24hr period. When she is awake her speech is slow and slurred, but her hearing is unaffected and she hears everything well. She is very aware and can respond to conversation. Her vision is very limited, and sometimes she says she can't see; other times she can see things but says they're very blurry. Again, this could be a side-effect of the morphine or a result of tumour progression. Occasionally she has hallucinated, which is supposedly a side-effect of the morphine (she kept reaching for non-existent Smarties on the couch; it seemed so frustrating that we got her a box of real Smarties the next day). Her left eye looks rather lifeless and her left eyelid no longer closes all the way (we try to keep her left eye hydrated with saline drops). Her mobility is very limited. She can barely manage to push up onto all fours. She must be carried from place to place with head support as one would hold a two-month-old baby. Her appetite is quite small -- a few mouthfuls of applesauce or yogurt a few times a day, and about 150 mL of water a day. She is getting very thin. Her personality is all there, however, and she is still very opinionated about what she does and doesn't want. She also remains very protective of her little brother David (he's now almost 18 months old and he promptly brings to Emily any book or toy she happens to mention or that he thinks she might want). Surprisingly, she doesn't really seem frustrated by her current situation or physical limitations. In fact she seems generally calm and in good spirits, and hasn't complained about not being able to see or walk or sit up (which is strange, since she's never been one to tolerate anything but perfection). We don't know if this is because of the morphine, but we're grateful that she seems so content and at peace with the situation.

• 2000 Feb 15: Emily has a nosebleed today. It is in her right nostril, and fortunately lasts only a few minutes.

• 2000 Feb 16: Our Interlink Nurse had recently asked us if Emily would be interested in having a music therapist come to the house, and today is the music therapist's first visit. She has a guitar and a flute, and lots of little instruments for Emily and David to use. Emily seems to enjoy the music, joining in with a shaker while the therapist sings and plays beautiful lullabies on the guitar.

• 2000 Feb 19: Emily is eating less and less, and seems to have difficulty swallowing. She does seem to be able to eat a freezie. The swallowing difficulty is consistent with progression of tumour into the brain stem. She has lost a lot of weight. When asked if she can see, she answers "No," though it doesn't seem to upset her.

Resting on the couch with Mira, Emily's favourite doll, Feb 21, 2000.

• 2000 Feb 23: The music therapist visits this morning. Emily is too weak this time to join in with the shakers but seems to enjoy the guitar and singing.

• 2000 Feb 26: Emily hardly drinks at all today, and eats nothing. The left side of her face seems paralyzed. There is no motion in her left eyelid, and no motion on the left side of her mouth.

• 2000 Feb 27: Emily wakes just after midnight and drinks 50 mL of water. She is alert and speaking, saying "yes", "no", "finished", and "mom". Her left eyelid is open about 70%, and the left side of her mouth is moving again.

• 2000 Feb 28: Emily eats a decent lunch of apple sauce and Pablum with Boost (several tablespoons of each). Other than that she has been asleep on the couch most of the day.

• 2000 Feb 29: Around 3:00 am Emily's breathing seems very laboured. She is taking very loud, deep breaths. When asked if anything is hurting, she responds "No" in her annoyed "why are you asking me that?" tone.

• 2000 Mar 1: Emily did not eat or drink at all today. She was drowsy or asleep most of the day. By now Emily’s breathing has slowed significantly. She goes about 25 seconds with no breathing and then takes a deep breath releasing it in a sigh followed immediately by a small half breath. Then there is the 25s or so of no breathing. It is rather nerve-racking when checking her breathing to have to wait so long. We enjoyed another lovely visit from the music therapist. Emily was drowsy but we know she can hear everything.

• 2000 Mar 2: Emily's breathing is raspy today. She seems to be in discomfort and is grinding her teeth. Lorazepam seems to calm her. Our family doctor, who oversaw Emily's birth (was it really just three-and-a-half years ago?), has been calling us regularly these past few weeks to offer support, and she drops by for a visit this afternoon. She and the homecare nurse arrange for us to get a suction pump, which might help Emily's breathing. Because Emily hasn't been drinking, her saliva has become quite thick and is causing the uncomfortable rasping. We can use the suction pump to clear the secretions in her mouth, which should help her breathe better. Also (because Emily isn't drinking) we discuss hydration. Most medical staff we've talked to recommend against hydration at this point, which is not as clear-cut as just hooking Emily's port up to an IV pump. The problem, which we knew from reading Jonathan Parker's case, is that at this stage, IV fluids (which must be run at a minimum of 20 mL/hr to keep the central line from clotting) can cause increased ICP which could result in pain and violent vomiting of the fluids. Despite the fact that she's not drinking, Emily seems very comfortable and we're reluctant to risk upsetting this comfort. We decide to hold off on hydration for now, as Emily doesn't seem to be bothered by the lack of fluids. In the evening we attempt to suction Emily's mouth. It seems to help reduce the rasping, but Emily's raised eyebrow tells us she is quite obviously annoyed with the suctioning procedure.

• 2000 Mar 3: Haem/onc staff looks into using Scopolamine patches on Emily to try to reduce the secretions in her mouth and facilitate breathing. Scopolamine is an anti-emetic (anti-nausea), with a side-effect of "dry mouth" which would actually be beneficial in this situation. Unfortunately the patches don't come in children's doses, and Pharmacy wouldn't be comfortable in cutting a patch to a smaller size because they wouldn't know exactly what dose it would be providing. Another option would be to administer small amounts of fluids via an N-G tube (a naso-gastric tube) to provide some hydration and thin the secretions. However, this is quite uncomfortable to insert (through the nose) and impossible to tell whether it's correctly in place in the stomach (and not in the trachea) until it's all the way in (check for stomach acid); if it's not in correctly, it has to be removed and the whole procedure started over again, with (again) the possibility of going down the trachea. Our homecare nurse is reluctant to put Emily through this procedure, and so are we, especially as Emily seems quite comfortable as it is. A third option is to administer small amounts of fluids into Emily's port through a portable PC-CAD pump (like the one used for the morphine). The portable pump operates at a higher pressure and needs far less volume than the 20mL/hr that the hospital IVAC pumps require to keep the port open. This small amount of fluid wouldn't be enough to cause ICP (nor enough to keep Emily hydrated, unfortunately) but might be enough to thin the secretions and facilitate suctioning. A fourth option (suggested by both our clinical trials nurse and our homecare nurse) is to offer popsicles or freezies on Emily's lips and mouth; this little bit of liquid might help thin the secretions and make her more comfortable. We decide to go with this last suggestion, the least invasive-sounding of the four options. Emily is now blind in both eyes, has left facial paralysis, no longer verbalizes and in the past two days has developed difficulty swallowing. Yet she continues to communicate with a squeeze from her hand or sometimes a raised right eyebrow, a sigh or a grunt, and we know she can still hear and understand perfectly. This evening before bed, as Emily was holding Dad's finger, Dad chastised David for something he'd done. Emily obviously thought David was being reprimanded unfairly and gave Dad's finger a pinch of objection to express (as she often did verbally in the past) her support of baby brother David.

• 2000 Mar 6: Emily has been whimpering a bit today as well as yesterday. Morphine dose is increased from 1.6mg/hr to 2.0mg/hr.

• 2000 Mar 7: Today is a beautiful warm sunny day (20C) and we wrap Emily up in a blanket and take her outside on the roofdeck for a few minutes. She seems to enjoy it. That night Grandmaman calls from Montreal. When asked if she wants to talk too, Emily gives Sylvie’s finger a squeeze (this means "yes"). We hold the phone up to Emily’s ear so she can hear her grandmother.

• 2000 Mar 8: Emily's breathing has been quick and shallow all night. Her feet are cold and very mottled. Gently rubbing her feet helps a little, as does a warm hot-water bottle. Her pulse is weak, at times almost impossible to find. She seems restless, holding Mom's finger weakly. Quiet talking seems to calm her, and Mom spends most of the night talking with her about the people she knows and the things she loves to do. Emily hangs on until "the boys" (Dad and David ) come into her room just after 7:00 to say good morning. Our sweet little girl dies peacefully at 7:25 a.m..

We will always be immensely grateful that, with the help of the homecare nurse and lots of support from various hospital staff and so many other wonderful people, Emily was able to spend her final precious weeks with us in the comfort of her home.

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