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• 1999 Jun 15: CT scan confirms a relapse. Tumour has grown back to its original pre-surgery size (chicken-egg-sized). We are devastated. Emily was doing so well recently, looking better than she had since last August. It's hard to believe how fast this tumour grew back (she had a clean MRI less than four months ago). We are scheduled to meet with the radiation oncologist tomorrow.

• 1999 Jun 16: We meet with the radiation oncologist. Emily will be scheduled for immediate cranio-spinal radiation therapy in 30 hyperfractionated doses (5 days a week for 6 weeks). She will be receiving 36 Gy to head and spine, and 54 Gy boost to the posterior fossa (back of head, which is the location of the tumour bed). We are grateful that Emily will be starting her radiation therapy immediately. We hear of so many cancer patients in Ontario who have to wait months to begin radiation treatment because of a lack of staffing. Unfortunately the fast-tracking of Emily’s case is indicative of the seriousness of her condition. Statistically, we are told that the chance of cure at this point is slim, though radiation will likely buy her more time (several months, maybe even a year or more). Short-term side-effects are: nausea and vomiting; reddening of the skin where the beam enters and exits (back, chest, abdomen, head and ears); possible drop in blood counts, though neutropenia is rare; complete but temporary hair loss. Possible long-term side-effects in adult survivors: intellectual development may be impaired; shorter stature; sterility; premature hearing-loss; cataracts; possible new tumours many years later in irradiated areas; permanent hair loss or thinning of hair at back of head.
  
  Emily has relapsed "on-chemo" (meaning she is within six months of her last chemo) which apparently has a less favourable outcome than an "off-chemo" relapse (which occurs six months or more after the last chemo treatment). Because Emily's chance of cure is considered extremely slim, we are now faced with having to make decisions based more on our concern for her immediate quality of life than on long-term side-effects.  Radiation will hopefully buy her more quality time, with little short-term side-effects once the radiation treatment itself is over (and since we can't help but cling to the faint hope that it may cure her, we've decided we're willing to take responsibility for the long-term consequences of our decision, knowing that without it she will likely die in the next few weeks). Therefore the decision to start radiation has not been, for us, the moral dilemma that it can be for the parents of a child who appears to be in remission.
  
  Emily's case will be presented at the weekly oncology rounds tomorrow evening, where neurosurgery will debate whether or not to go in and debulk the tumour before starting radiation. Our radiation oncologist will call us afterwards to let us know what has been decided.

• 1999 Jun 17: Our radiation oncologist calls. Neurosurgery has decided against debulking.  Because the tumour tissue in the brain stem is inoperable, they know they can't get it all. At this point they feel that the tumour's response to radiation is more dependent on its pathology than its size. Quality of life has become the main concern, and the surgeons feel the trauma and recuperation time from the surgery would not outweigh the benefits.  Surgery also holds the risk of neural deficit, which would again compromise the quality of Emily's life. We support their decision.

• 1999 Jun 18: We attend PMH (Princess Margaret Hospital) for Emily's mould-making. This is the first step in making the mask which will be used to immobilize Emily's head during radiation therapy. Emily, who has just turned three, is completely amazing, managing this entire scary process without sedation. If you've seen your child go through this you know what's involved here: the child's entire face is covered with strips of wet plaster (like paper-mache) with just two little holes left for the nostrils. The plaster is left to dry (takes a few minutes), then carefully lifted off the child's face. I felt claustrophobic just watching Emily go through this, but she just held our hand and listened to our voices, and was cool as a cucumber.

Here is Emily on the mould-making table with oil on her face just prior to application of the plaster strips.

 

Here she is with the plaster strips applied; she needs to wait about five minutes for the plaster to set.

• 1999 Jun 21: Attend PMH for mask-making. The front of the mask (made from the mould taken three days ago) is fitted and placed on a stand. Then the back of the mask is made and fitted. Emily is hesitant at first but eventually cooperates, and we're out of there in less than an hour.

• 1999 Jun 23: Attend PMH for simulation. This is where the radiation planning is done. Emily tries to cooperate, but is frightened by the restriction of the mask. She eventually needs to be sedated with chloral hydrate.

• 1999 Jun 25: Begin the cranio-spinal radiation treatment #1. Emily attempts without sedation, but eventually needs to be sedated.

[Over the next six weeks, Emily repeatedly tries to go through the radiation procedure without sedation (she has never required sedation for CT’s or X-rays), but in this case the restriction of the mask is just too frightening for her and she invariably begins to sob when the back part of her mask is "clamped" to the table. Unfortunately the sedative (a whopping 1.5g of chloral hydrate) takes four hours to begin to wear off, and even after she wakes Emily is floppy and groggy the rest of the day. Also, if you’ve ever tasted chloral hydrate you’ll no doubt remember how bitter it is; it just makes you want to gag, it is so awful. And Emily had to swallow 15 mL of it every day of radiation for six weeks.]

Here are a few photos of Emily (sedated) in the radiation therapy treatment room:

• 1999 Jun 28: PMH. Sedation didn't kick in enough to do rad treatment #2. We return home worried and depressed.

• 1999 Jun 29: PMH: Radiation treatment #2.

• 1999 Jun 30: Attend PMH: Radiation treatment #3.

• 1999 Jul 2: Attend PMH: Radiation treatment #4.

• 1999 Jul 5: Attend PMH: Radiation treatment #5.

• 1999 Jul 6: Attend PMH: Radiation treatment #6.

• 1999 Jul 7: Attend PMH: Radiation treatment #7.

• 1999 Jul 8: Attend PMH: Radiation treatment #8.

• 1999 Jul 9: Attend PMH: Radiation treatment #9.

• 1999 Jul 12: Attend PMH: Radiation treatment #10.

• 1999 Jul 13: Attend PMH: Radiation treatment #11.

• 1999 Jul 14: Attend PMH: Radiation treatment #12.

• 1999 Jul 15: Attend PMH: Radiation treatment #13.

• 1999 Jul 16: Attend PMH: Radiation treatment #14. Yesterday's CBC results show platelets are 42, so after rad treatment we swing over to HSC for a platelets transfusion.

Despite the daily radiation, Emily is still in good spirits.

• 1999 Jul 19: Attend HSC for MRI (spine only) to aid in planning the rest of the radiation therapy.

• 1999 Jul 20: Attend PMH: Radiation treatment #15. Later that evening Emily develops a fever. We attend Emerg, where Emily is diagnosed with otitis media (ear infection) and is discharged on oral antibiotics.

• 1999 Jul 21: Attend PMH: Radiation treatment #16.

• 1999 Jul 22: Attend PMH: Radiation treatment #17.

• 1999 Jul 23: Attend PMH: Radiation treatment #18

• 1999 Jul 26: Attend PMH: Radiation treatment #19. Simulation for boost to head (posterior fossa).

• 1999 Jul 27: Attend PMH: Radiation treatment #20.

• 1999 Jul 28: Attend PMH: Radiation treatment #21.

• 1999 Jul 29: Attend PMH: Radiation treatment #22.

• 1999 Jul 30: Attend PMH: Radiation treatment #23. Hemoglobin 72, platelets 36. Emily gets a transfusion of both across the street at HSC.

• 1999 Aug 1: Emily's balance and walking are steadily improving as the radiation treatment continues. So far the side-effects of the radiation are skin lesions and redness. The primary area is the back of her neck, which is raw and peeling. There is cracking and redness at the top of the fold behind her ears. Her throat also shows darkening and peeling of the skin. The entire skin on her head feels soft and inelastic. All her hair has now fallen out (basically overnight, unlike with chemo where Emily's hair fell out gradually over a six-month period). The other area of skin reddening and darkening is the region below her belly button. The area of the spine and exit beam show only slight reddening/darkening.

Radiation burns.

• 1999 Aug 1: Emily has a gagging episode. We present at Emerg. No sign of ICP (intracranial pressure) and Emily looks okay neurologically. Gagging may have been caused by nausea from radiation therapy. We are discharged on Gravol to control the nausea.

• 1999 Aug 3: Attend PMH: Radiation treatment #24. Boost to posterior fossa begins today.

• 1999 Aug 4: Attend PMH: Radiation treatment #25.

• 1999 Aug 5: Attend PMH: Radiation treatment #26.

• 1999 Aug 6: Attend PMH: Radiation treatment #27.

• 1999 Aug 9: Attend PMH: Radiation treatment #28.

• 1999 Aug 10: Attend PMH: Radiation treatment #29.

• 1999 Aug 11: Attend PMH: Radiation treatment #30 (last treatment).

• 1999 Aug 27: Attend HSC ambulatory clinic for fingerpoke. Blood results are okay.

By Sep 4 the radiation burns have mostly healed though the skin remains brown and dry for several more weeks.

• 1999 Sep 8: Attend Neurosurgery clinic for follow-up appointment. Emily's walking has improved considerably. Her gait has a broad base but she is walking unassisted. Clinically she looks "great". MRI of Jul 19 included just enough of posterior fossa to see original tumour site, and there appears to be no difference between Jul 19 MRI and Jun 15 CT scan (i.e. tumour hasn't grown). A follow-up MRI is to be scheduled and Neurosurgery is to follow up with a clinic appointment.

• 1999 Sep 9: Attend 8D for CBC and chemistry from port. Blood counts are good.

• 1999 Sep 17: Emily begins attending "Playhaven", a once-a-week play group for "medically fragile children". Little brother David is welcome too, and both kids have a great time. With Emily's treatments and neutropenia, neither she nor David have had much of a chance to socialize with other children. Playhaven is wonderful! There are crafts, toys, snacks, painting, two fun (and really nice!) playladies, plus Wayne on his guitar!

• 1999 Oct 5: Attend HSC for MRI (full head and spine) and bloodwork (CBC and chemistry).

Woodbridge Fair, Oct 9, 1999.

Emily and Dad at Pumpkinfest, Oct 16, 1999.

• 1999 Oct 18: Meet with our oncologist (at our request) to discuss Dr. Thomas A. Olson’s article (J Pediatr Hematol Oncol 1995 Feb;17(1):71-5) which reports three successfully treated rhabdoid cases using doxorubicin and intrathecal thiotepa along with other chemo drugs such as cisplatin. We wonder whether there could be any benefit in trying such a treatment at this point. Our oncologist says she will discuss this with some of her colleagues at an upcoming POG conference this week. She would be willing to give more chemo if it might add even as little as 10 percentage points to the chance of cure (currently less than 20%). She will get back to us after the conference. Meanwhile, the results of the MRI two weeks ago show a slight decrease in the tumour size, and we cling to the hope that the radiation has been effective.

• 1999 Oct 20: Attend 5D for Neurosurgery follow-up. Everything looks good. Attend 8D for Radiation Oncology follow-up. Everything seems okay. Basically not much we can do but wait and hope that the tumour has been killed by the radiation. If there were to be a relapse, radiation (even stereotactic radiation) would not likely be an option. Experimental drugs would probably be more appropriate though there would be no expectation of cure. At best they would merely prolong life. This is something which we hope we never have to face. Emily is doing very well these days. She has lots of energy, is walking well and is in great spirits.

Halloween 1999.

• 1999 Nov 3: Our oncologist calls us with her findings from the conference, regarding our questions from Oct 18 about Dr. Olson's article. Medical opinion is mixed, but the general consensus is that starting this particular treatment now might buy Emily more time but would be unlikely to increase the chance of cure. This disappointing report makes us hesitant to put Emily through the treatment, especially in light of the high risk of hearing loss from the cisplatin.  Emily has an excellent command of language, and throughout her treatments we have always been able to discuss with her what is about to happen and why.  This understanding of the procedures has really helped her cope, and we are afraid that loss of hearing in the last few months of her life might be extremely frustrating for her.  As our oncologist cautions us, inflicting hearing-loss is NOT good palliation.  (Hearing loss with the chance of cure, however, would have been an entirely different story, as we're quite confident that, given time, Emily (like most kids) could readily learn sign language).
  
  Our oncologist recommends Emily have an LP (lumbar puncture) done to test the CSF (cerebro-spinal fluid). If the results come back positive (indicating dissemination) Emily would be eligible for a Phase I or Phase II clinical trial drug with low side-effects, such as Temozolomide. If the LP is negative and if we still chose to pursue chemo, our oncologist would be willing to design a chemo protocol to give now, such as cyclophosphamide (which Emily has not yet had) or oral VP-16 for 21 days, which has low toxicity (though we recall that Jonathan Parker was on oral VP-16 with no results). We agree to schedule the LP and hold off any final decision until after we have the results.

• 1999 Nov 10: We attend 8D for Emily's LP. This is Emily's first LP, though apparently (much to our surprise) she had figured out through osmosis what it involved because last night, as we began to prepare her for this new and unknown (or so we thought) procedure, we began by saying "Tomorrow you're going to have a new procedure. It's called an LP." Immediately she frowned and her hands shot to her lower back. A bit puzzled, we asked "What are you doing, Emily?" She looked at us defiantly and said "I'm just covering my back!". Go figure! Kids are just so amazing! Anyways, the LP went off without a hitch. Results will take a few days, since our oncologist is having the sample sent to pathology for detailed analysis instead of having it spun up in the clinic.

• 1999 Nov 13: Emily's ataxia and intention tremor return suddenly. This is absolutely devastating, as we have now exhausted all conventional treatments.

• 1999 Nov 15: We attend 8D for a CT scan. Unfortunately we don't need the scan to tell us that something is definitely wrong .The tremor in Emily's left hand has progressed noticeably in two days, and we are bracing ourselves for some major decisions in the next week. Emily is as cheerful as ever, and doesn't seem at all bothered by the tremor or the ataxia.

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