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On March 6th 2002 I left to go to New York for a life saving Bone Marrow Transplant. I was very lucky my sister was the matching donor. Because my parents' insurance would not cover my treatment in New York, I needed the help of many kind people who donated to my appeal. Many people also pray for me and sent me best wishes. With God's help I was able to return to Australia on 6th September 2002. On 10th October 2002 I was very sad when the leukaemia came back. Our family went back to New York in November 2002 so that I could have a second bone marrow transplant. My Mum and Dad and my Grandmother Nina and my sister Nina and my Aunt Debbie are with me right now in New York. My treatment is at Memorial Sloan Kettering Cancer Centre. My doctor is Dr Nancy Kernan. Our family made many friends while we were in New York. We will never forget them and we thank them all. Please click on the pages on the left hand side and have a look. |
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21 Mar- Dr Susan Prockov from the Bone Marrow Transplant Team, Sr Nadia Hamdi, and Dr Alec Chow the Fellow watch as I get a transfusion of Nina's bone marrow. Thank you to everyone |
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| 20 Mar- My sister and I stayed in the same room. She went through a lot of pain for me. She is brave. I love you Nina. | 20 Mar- Dr Prasad is one of my favourite Doctors in the hospital. He spoke to my Dad about the Cricket World Cup. He comes from India and India will play Australia in the final. | 20 Mar- Esther is one of my Primary Nurses. She looked after Nina tonight. Nina played Bingo in the hospital and won some great Barbie prizes. | ||
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| 20 Mar- Sr Amy helped Nina get ready for her operation. Nina was linked to fluids before her operation | 18 Mar- Dr Peter Steinherz is head of the Paediatric Leukaemia Team at Memorial Hospital. | 17 Mar- My Dad is in this photo with Elissa Burke. Elissa is a Pharmacist and her Dad Harry has a Pharmacy in Ipswich where Dad used to work. She brought me a present. | ||
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| 17 Mar- Dr Kevin Heller and I have been friends since he looked after me the first night I went into hospital the first time I came to New York. | 17 Mar- I was feeling really sick but I was feeling better when Magic Al came and showed me some tricks. My teacher Mrs Green is also in the picture. | 15 Mar- Christina Tzimas came to visit me today. Christina lives in New Jersey. She brought olives for me which are my favourite. | ||
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| 17 Mar- On Monday and Thursday nights we play bingo over the phone. We win great prizes. Therese is a Childlife Specialist | 15 Mar- My Grandmother Nina is feeding me soup. They had to stop formulae in my feeding tube because my phosphorous level is too high. | 15 Mar- My Aunt Debbie keeps me company in hospital and we play games | ||
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| 14 Mar- On Friday nights the ChildLife Specialist have a sweets night. Ingrid, Kate, Carol and Lou brought round the sweets trolley | 14 Mar- All my nurses are great but Mary-Eliza is my favourite. She is one of my primary care nurses. She also looked after me during my last transplant | 14 Mar- My Sister Nina visited me today. She is the best Sister in the whole world. She will have her operation next Thursday. She is so brave. | ||
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| 13 Mar- Dr Andy Kolb was my doctor when I was with the Leukaemia Team. Now I am with the transplant team. Thanks for getting me to transplant. He came for a visit today. | 13 Mar- Kateri was one on my Nurse Practitioners with the leukaemia team. She gave me lots of check-ups | 13 Mar- Moya was my other Nurse Practitioner with the Leukaemia team. Moya looked after me on Fridays. | ||
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6th March 2003 From Kos Sclavos (Stanley's Dad) Dear Friends, Hello from the Sclavos family in New York. Firstly we would like to thank you all for your support and prayers. It honestly just brings us to tears knowing how many people are supporting us and more importantly it has inspired Stanley and Effie. Some people have simply amazed us with their heart- warming contribution and we feel blessed by their support and love. I would like to give you an update on Stanley’s and Effie’s treatment plan. When we arrived back in New York in November it was inconceivable that Stanley and Effie would be beset by so many setbacks. Stanley had already survived a painful bout of shingles in Brisbane after his immunity had been knocked about by the chemotherapy. He had an extended hospital stay here in December having a dangerous blood sepsis and fungal infection. The doctors have set a time period for transplant. Stanley will be admitted to hospital on the 12th of March. Stanley’s fungal lung infection is called Aspergillus and is known to be very difficult to treat. After 13 weeks of treatment with Voriconazole and 8 weeks of combined AmBisome (Amphotericin) and Voriconazole treatment, the 5-6 nodes have remained the same size on the Chest Catscan (approx 3mm). The Transplant specialists met with Infectious Diseases specialists last week and all round it was decided that Stanley should go to Transplant as the risk of leukaemia relapse is too great. We hope and pray that the medications will hold the infection while Stanley has no protective cells for a period of about 1 month. A bone marrow test on 10th February actually showed Stanley is in an excellent remission which gives us much hope for long term success. His remission is a better microscopic remission than prior to the first transplant. When admitted Stanley will have powerful chemotherapy for 8 days. This will ablated or wipe out his marrow. Nina’s bone marrow will be harvested and Stanley will receive the marrow with t cells the next day. That is counted as day zero. It will then take approximately 22 days for Stanley’s new marrow to produce white cells. Up to that point in time infections can be very threatening. The chemotherapy agents are more powerful than anything he has ever had before in terms of anti-leukaemic effect but it also brings added risk of toxicity. The fungal treatment has made Stanley very nauseous and he has lost significant weight. Last week he had a naso-gastric tube inserted but it was removed on Friday because it caused him so much distress and he was unable to eat anything by mouth. Two days ago Stanley had surgery to insert a Gastric tube directly to his stomach to receive nutrition. Right now he is in a great deal of pain from the operation but hopefully he will be able to put on a couple of kg before transplant. The doctors keep emphasizing the importance of protein and getting his Albumin level up. We will be doing everything we can to improve his nutritional status prior to transplant. Effie (my wife and Stanley's Mum) has completed her 30 radiation sessions and two rounds of chemotherapy but is still in a lot of pain. She wears Duragesic 100mcg patches and has Oxycodone Syrup that she takes via the PEG feeding tube in her stomach. Effie visited the Speech Therapist this week and has swallowed a little milk and water for the first time since completing treatment. She still has a very irritated mouth from mucositis and radiation burn especially to her tongue. This makes it painful to put anything in the mouth, but she also swallowed some stewed apples with the therapist. Her nutrition will probably stay via the stomach tube for the next 3-4 months until her mouth heals. Her Chemotherapy Oncologist told her today that they usually advise patients that it takes 6 months after radiation is completed to be able to return to previous activities – that would be around August. She is becoming more involved now in Stanley’s treatment and he is cherishing that. We also have Effie’s sister Debbie with us to assist and of course my mother Nina who is Stanley’s personal cook. That is about all the news we have at the moment as our family enters a very traumatic phase of Stanley’s treatment. It was actually a year ago today we first arrived in New York for Stanley’s treatment. He has been through so much yet still maintains his determination. Once again a most sincere and humble thank you from our family. We pray and hope that Effie and Stanley will triumph over their adversities in the weeks ahead. Yours sincerely Kosmas Sclavos |
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This site was last updated Friday, 21 March 2003 |
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