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Hi, my wife and I recently came across "Mike's Life with Retinoblastoma" and decided we would like to share some of our experiences from the last 2 years plus. Follows is a letter we wrote to a Multipile Birth Club we belong to which gives a run down on our twin daughters Amanda and Melissa. What this letter dosen't explain is that I have had rb and have successfully lived with it all of my 33 years ( my right eye was removed at age 8 months). Amanda and Melissa are non-identical twins who are know a little over two years old. Unfortunately we were unaware of the possibility of rb being genetic and were somewhat dumbstruck when the girls eyes were checked at age 3 weeks, and we were told they were both affected. We are now more informed and certainly don't regret having the children ( two was always going to be our limit!) Should you wish to we would be quite happy for our story to be posted. We would also be happy to hear from others who have been affected by rb, or should anyone like to know more about our two special girls we would be glad to answer any queries. Regards Kevin & Joanne Beaver Wellington NEW ZEALAND k.beaver@clear.net.nz Send e-mail |
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An open letter from us (the Beavers') to those who still reside in Wellington Now that we have been able to take a small breather from what has been a fairly busy schedule since arriving in Christchurch, we would like to take this opportunity to thank you all for the cards and letters of support we have received since our rather rapid departure from Wellington. It would also seem an appropriate time to bring you up to date and perhaps fill in some of the gaps of what you may or may not know about Amanda and Melissa. At the age of three weeks both Amanda and Melissa were found to have retinoblastoma, a not very common type of cancer that affects the eyes. (on average there are four cases reported in New Zealand every year). Amanda was found to have a tumour in her right eye that was later treated with radiotherapy (a month long treatment completed when she was three months old) and Melissa was found to have a large tumour to her left eye that required removal of the complete eye. (surgery was carried out here in Christchurch when Melissa was four weeks old). Since then the girls have both been receiving regular treatment for smaller tumours that have continued to grow with monotonous regularity. The means of treatment was either the use of a laser beam and/or cryotherapy (freezing of the tumour). In January of this year it was found these modes of treatment were having little or no affect on what was thought to be the remaining tumors and we were advised that it would be necessary for both of the girls to have radiotherapy. In order to prepare for this it a CAT scan was required. In Melissa's case the CAT scan showed the presence of a large tumour in the area of her Pineal Gland, in the centre of her brain. The specialists were quick to point out that the nausea, loss of balance, banging of ears and general lack of well being Melissa had shown over the previous few weeks was a result of the tumour restricting the flow of fluid from around the brain causing swelling, not the symptons of an ear infection as suggested by our GP's locum. Melissa is now described as having tri-lateral retinoblastoma (an even rarer form of this type of cancer). The day after the scan a VP shunt was inserted in Melissa's skull to relieve the pressure. At this time we were advised that a regime of chemotherapy would be required in order to treat the tumour and as Wellington was without a Pediatric Oncologist it would be necessary to travel to Christchurch to complete the treatment. Since we have been down here Melissa has received some five three day courses of chemotherapy and, while the chemotherapy has greatly reduced the size of the tumour it is necessary for her to receive Sterotactic Radio-surgery (multiple beam radiotherapy) to, hopefully, completely destroy the tumour. Consequently we will be traveling to Dunedin where, on Thursday 5 June, Melissa will become the youngest child in Australasia to receive Stereotactic Radio-surgery (multiple beam radiotherapy). Regretfully this treatment is not without its own risks, the least of which is the 12 hour anesthetic Melissa must have. Not to be outdone Amanda has also provided us with her share of ups and downs. While initially her original CAT Scan showed nothing more than what was already known, shortly after our arrival in Christchurch it was discovered that the remaining tumour in her left eye had had a growth spurt. The size of the tumour had become such that removal of the eye was the only option and even then there was no guarantee that the cancer cells hadn't spread to her blood and the lymph nodes. Consequently Amanda has recently completed her second, month long course of radiotherapy (this time to her left eye socket) and is still continuing to receive chemotherapy as a preventative treatment. Not with standing all of the above both Amanda and Melissa are continuing to develop. Melissa now includes such words as "chemotherapy" and "antibiotics" in her ever expanding vocabulary, while Amanda has learnt how to use a stethoscope and is affectionately known as Dr Amanda. They have also both meet with their fare share of local celebrities as the photo below shows. We hope to return to Wellington in the next six months and trust that those of you who may pass through Christchurch during this time will give us a call. |
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Friday, January 30, 1998
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Dear Mike
Attached is a follow up letter I would like included as a footnote to our original letter. Sadly the note is regarding the death of one of our daughters, Melissa, who despite her brave battle did not outlive her tri-lateral retinoblastoma. I have been following the development of your site and the "Family guide to Retinoblastoma" makes interesting reading. Thanks Kevin Beaver An Open Letter From The Beaver Family (Mk II) Sadly we have had the misfortune to lose our delightful daughter Melissa, who passed away on January 8th 1998 as a result of the re-growth of cancer in her brain - technically referred to as Intracranial Metastic Retinoblastoma. Melissa suffered a serious seizure on the 22nd of December 1997. This was the first definitive sign of something untoward occurring and from then until her death, Melissa's body gradually shut down. Thankfully we were able to control most of her apparent pain and we were also able to keep her at home for the majority of the time. While Christmas time was a period of great strain it was also very special to us as were able to enjoy Melissa's company for those last few days. Joanne, Amanda (Melissa's twin sister) and myself are now learning to cope with one less in the family and while this is not always easy it is getting easier. Amanda continues to thrive and remains happy, which of course is of immense help to us her poor parents! While not yet fully appreciating the extent of the passing on of her sister, I am sure that in her own Amanda is coming to terms with not having her favourite playmate around anymore. Of course there are times when we do have to remind Amanda of what has happened - such as the other day when she wanted to telephone Melissa! In summary it would be fair to say we generally still remain positive and aim to enjoy the life we have. Melissa has left us with many fond memories (no-one could "arga" (argue) like Melissa) and taught us, among other things, that life is there to be enjoyed and we should make the most of our opportunities. Regards Kevin |
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