Emily's Rhabdoid PageIn loving memory of Emily
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On Friday July 31, 1998 our 26-month-old daughter, Emily, began losing her balance when walking. She seemed otherwise well but we nevertheless took her to our family doctor, who referred us to a pediatrician. The pediatrician immediately sent us to Toronto's Hospital for Sick Children's Emergency for a neurological assessment. To this day we feel extremely fortunate that both our family doctor and the pediatrician took Emily's situation as seriously as they did, sparing us the weeks (or months) of runaround that it seems so many other rhabdoid parents have had to face.
CT of Emily's head revealed a chicken-egg-sized mass in the posterior fossa. On August 10,1998 Emily had surgery to remove the tumour (sub-total resection; they couldn't remove a pea-sized portion that had grown into the brain stem). Ten days later Pathology diagnosed it as rhabdoid after DNA testing of the tumour sample revealed monosomy 22. From August 1998 until April 1999 Emily received ten cycles of ICE chemo (Ifosfamide, Carboplatin, Etoposide) with excellent response. An MRI in February 1999 showed the tumour was no longer visible.
ICE was discontinued in April 1999 (for fear of kidney damage) and chemo was switched to CCNU and Vincristine while waiting for radiation therapy to begin (which was originally planned for August). But Emily's loss of balance returned suddenly on June 10, 1999, and CT confirmed a relapse. In the less than four months since the February MRI, the tumour had grown back to its original pre-surgery chicken-egg size.
Emily had just turned three in May and was now considered old enough for radiation. We immediately began six weeks of cranio-spinal radiation therapy. Emily responded well and regained her balance, but she relapsed again in November 1999. Two clinical trials proved ineffective, and we decided to stop hospital treatment in January 2000 when her condition took a sudden slide.
We kept Emily at home with us after that and were fortunate to get lots of support from Hospital for Sick Children, the Home Care nurse, our family doctor and Emily's grandparents and relatives. During her last few weeks of life Emily successively lost the ability to walk, to see and (in the last few days) to swallow, but she seemed almost entirely free of pain thanks to a portable subcutaneous morphine pump which proved invaluable. After she lost the strength to speak she continued to answer yes/no questions through finger-squeezes, and she remained alert (and extremely opinionated!) until the very last day.
| During her 18 months of treatment Emily continued to be an active, spirited and fun-loving little girl who took hospital life in stride and continued to thrive as a normal preschooler -- in great part due to the wonderful treatment she received from the staff at Hospital for Sick Children. She loved being read to and had a special knack for words and language. We've included here a bedtime poem which she made up in the Fall of 1999, four months before she died. At the time, Dad wrote it down in the Emily Notebook so we could remember it "right" if we tried to recite it with her (among other things, she was very particular (as always!) that "moon" be singular and "stars" be plural... she let us know if we said it wrong!). She called it "Moon and Stars", and as far as we know it was entirely her own creation. |
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| Our beloved Emily died peacefully at home in Toronto on March 8, 2000 at 7:25am. | ||
Soon after Emily was diagnosed we began keeping notes on everything she was going through, mostly so we could keep all the treatment details and terminology straight in our minds. As we went along we found we benefited tremendously from reading the detailed online journals of other families who were also walking this difficult road. The following is Emily's journal, finally transcribed from those purple spiral notebooks we carried to clinic with us. It is included here in the hopes that it might help someone else as we were helped by those before us.
Any errors, medical or otherwise, are most probably ours, and for this reason we have purposely avoided mentioning our Sick Kids staff by name to prevent our own medical ignorance from being attributed to them. The Sick Kids staff was wonderful to Emily, and we'd hate to thank them with an inaccurate quote!
We are grateful to all the rhabdoid children and their families who have shared, and continue to share, their difficulties and triumphs with us. You are in our thoughts as we check the Rhabdoid Kids updates every few days. Thanks in particular to Connor's mom for asking us all those questions which helped us clarify some of the details. A special acknowledgement goes out to the families of Jonathan Parker and Skye Mhari Stewart, whose stories helped us enormously at a time when we felt so alone.
We've also included a summary of Emily's cancer treatment. |
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Emily and little brother David, summer 1999. |
Though it may not necessarily change the course of therapy, a basic understanding of your child's cancer may help you feel a little less bewildered. Here are some of the resources we've used in the past:
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Created December 21, 2000 by Emily's parents
Last updated March 6, 2005
