We have had better Christmases but we have a lot to be grateful for. Melodina is in the Critical Care Unit at Sick Kids. I won't go into the incredible stress that provokes. Indira and I both stay in the room overnight. Maggie, Melodina's dog needed emergency surgery Christmas Eve. I guess she was in a doggy CCU Christmas day as well. This posting is to focus on some of the positive aspects of this unfortunate situation.
Melodina was diagnosed last week with an infectious pneumonia. She went down to the ISU early Tuesday morning because she could no longer breath on her own. Early that morning she went into surgery to get a lung biopsy and a scope to look around as well as some fluid collection was done at the same time. She went back to the CCU after Surgery. We knew this surgery was imminent for a few days. Melodina asked for a particular surgeon who she knows and trusts. He came in on the first day of his vacation to perform the operation and he came back the next day to follow up.
From the moment we arrived in the CCU we got wonderful cooperation from both the anaesthetist on the surgical team and the ISU doctors. We had one of the best and most compassionate of the Oncology Haematologist Staff Doctors to back us up. We discussed every aspect of her treatment and care before it was implemented. This was done in conjunction with teams of doctors. As results of the surgery came back a plan for treatment was created. The main architect was one of our favorite Oncologist/Haematologists along with the "Guru" of Infectious Diseases and a wonderful Staff Doctor from the CCU.
Throughout the whole process we have been a part of the discussions and Melodina's care and treatment has been modified to meet her past experiences and our observations. The caring, knowledge and attention to formulating all activities specifically to Melodina's personal situation and past experiences as well as her Mother and my observations have made the whole experience better and somewhat less stressful. We are confident that this negative situation which occurred at the worst possible time - the Christmas Holidays - has been handled with the best possible care and treatment. Melodina is still on a breathing tube as I write this but it should come out today or tomorrow. Her lungs have improved somewhat. We know she is on the road to recovery.
Maggie the dog got her surgery late Christmas Eve thanks to my sister, her fiance and Melodina's Godmother. She will fully recover soon. This was another blessing. The Veterinarian and staff at the Animal Hospital spent their vacation time looking after Melodina's dog. Wonderful people.
Indira pointed out that having the best people in place at the right time was her "Christmas Miracle." We have nothing but praise for the teams of doctors and nurses, the Respiratory Therapists and the other Sick Kids staff who have helped us through this period. Angels of Compassion; every one!!!
Oh, bye the way the diagnosis of pneumonia has proved to be wrong and the doctors who know have determined that Mel's lung condition is an adverse reaction to one or more of the drugs she's on. This is good news and treatable.
Sunday, December 28, 2008
Tuesday, December 16, 2008
Inspiration
I think I have mentioned in this blog that one thing that keeps me going is that I know there are others in this life going through things that I can't even imagine. There are inspiring people everywhere. The link below is to a video that I found inspirational and I wanted to share it.
http://www.wimp.com/trueheart/
http://www.wimp.com/trueheart/
Monday, December 15, 2008
Former Patient and Her Family
I have mentioned before on this blog that you meet wonderful people in the world of cancer. Today we met a wonderful family. Shannon and her family and family friends came and brought a lot of presents for each and every child in the Bone Marrow Transplant Unit at Sick Kids.
Shannon is a 17 year old post Bone Marrow Transplant patient. She left the hospital several years ago. For the past six years her family has provided gifts to help lift the spirits of the children going through what is , at best, an extremely difficult time. Shannon is so healthy that she was able to complete the Princess Margaret Hospitals ride this year. That means she rode 100 kilometers from Toronto to Niagara Falls one day and 100 kilometers back the next day, all to raise money for cancer research. A remarkable young woman and and inspiration to those who still struggle to regain their health!
It was a joy to see the smiles on the faces of the children as they received their gifts from Shannon and her family. It is a great and generous thing that they do. I have placed a photo of Shanon and Melodina on the Blog.
Shannon is a 17 year old post Bone Marrow Transplant patient. She left the hospital several years ago. For the past six years her family has provided gifts to help lift the spirits of the children going through what is , at best, an extremely difficult time. Shannon is so healthy that she was able to complete the Princess Margaret Hospitals ride this year. That means she rode 100 kilometers from Toronto to Niagara Falls one day and 100 kilometers back the next day, all to raise money for cancer research. A remarkable young woman and and inspiration to those who still struggle to regain their health!
It was a joy to see the smiles on the faces of the children as they received their gifts from Shannon and her family. It is a great and generous thing that they do. I have placed a photo of Shanon and Melodina on the Blog.
Thursday, December 11, 2008
TV News Feature
Melodina will be the focus of a Global TV News Feature this Friday evening on the six o'clock news. I hope some of you can watch it.
Wednesday, December 10, 2008
Its all Up and Down
The post Bone Marrow Transplant roller coaster ride continues - for Melodina, for Indira and myself and for other children and other families. One boy who up until a couple of weeks ago spent much of his time screaming in pain or crying is up, walking around and playing. It is such a relief for us to see this. His parents must feel it even more. We see children in extreme pain and we see them die. We see children suffering with an amazing array of symptoms and we see them survive. We saw a boy who came to visit yesterday who had had his transplant earlier this year.He was healthy, active - wonderful! It is the most amazing experience of my life, barr none.
Melodia has been in betweeen this week. She has pain and nausea with occasional vomiting and loose stool yet she has used her strength of spirit to get up every day. Tuesday she went to the gym and amazed us by reaching a cadence of 109 revolutions per minute on the stationary bike. She's been walking every day and continues planning to be on snow skiing between Christmas and the New Years. Her courage is extraordinary.
It's also been a busy week in other ways. Many people participate in Melodina's recovery. My Aunt and Uncle have be particularly supportive. We hope to get out of the hospital to have lunch with them soon. Melodina's cousins are back from Europe. She hopes to see them and her other cousins over the holiday season. Perhaps some friends from school and others from her previous school will visit. All these things help keep her going. Her social life includes communicating by e-mail, texting and face book. It is not the same as and active social teenage experience but it all helps keep her going.
This week has been particularly busy. Melodina's sister, bother in law, niece and nephew came on Saturday. Sunday Melodina visited some of the shops at Sick Kids and did some Christmas shopping. Monday Global television called late in the day. They want to do a feature on Melodina. We arranged for a reporter and videographer to come to the hospital Tuesday. The hospital public affairs department were a bit perturbed that we didn't call them first but a kind woman helped us arrange everything in the end.
Tuesday went well. Melodina and I were interviewed. The reporter got a hold of Kelly Vanderbeek at the airport as Canada's Alpine World Cup Team was leaving for Europe. Melodina was also filmed in the gym doing her workout. After we were back in her room, Melodina had a visit from her half sister Naomi. She had been eagerly anticipating the visit but fell asleep before too long. Still it was a good day.
Yesterday some of the Toronto Maple Leafs came to visit. We were pleased to meet Curtis Joseph. Melodina has been one of hundreds of children who have benefited by his generosity to Sick Kids over the years. Jason Blake is a great inspiration. He was diagnosed with Leukemia just over a year ago and continues to play in the NHL. Emily is an artist and sculptor who has been a family friend since she was four years old. Now she lives in BC and in the process of choosing a university to go to for her PHD in Fine Arts. Emily came to visit with Melodina last evening. All in all it has been a busy week so far.
Melodia has been in betweeen this week. She has pain and nausea with occasional vomiting and loose stool yet she has used her strength of spirit to get up every day. Tuesday she went to the gym and amazed us by reaching a cadence of 109 revolutions per minute on the stationary bike. She's been walking every day and continues planning to be on snow skiing between Christmas and the New Years. Her courage is extraordinary.
It's also been a busy week in other ways. Many people participate in Melodina's recovery. My Aunt and Uncle have be particularly supportive. We hope to get out of the hospital to have lunch with them soon. Melodina's cousins are back from Europe. She hopes to see them and her other cousins over the holiday season. Perhaps some friends from school and others from her previous school will visit. All these things help keep her going. Her social life includes communicating by e-mail, texting and face book. It is not the same as and active social teenage experience but it all helps keep her going.
This week has been particularly busy. Melodina's sister, bother in law, niece and nephew came on Saturday. Sunday Melodina visited some of the shops at Sick Kids and did some Christmas shopping. Monday Global television called late in the day. They want to do a feature on Melodina. We arranged for a reporter and videographer to come to the hospital Tuesday. The hospital public affairs department were a bit perturbed that we didn't call them first but a kind woman helped us arrange everything in the end.
Tuesday went well. Melodina and I were interviewed. The reporter got a hold of Kelly Vanderbeek at the airport as Canada's Alpine World Cup Team was leaving for Europe. Melodina was also filmed in the gym doing her workout. After we were back in her room, Melodina had a visit from her half sister Naomi. She had been eagerly anticipating the visit but fell asleep before too long. Still it was a good day.
Yesterday some of the Toronto Maple Leafs came to visit. We were pleased to meet Curtis Joseph. Melodina has been one of hundreds of children who have benefited by his generosity to Sick Kids over the years. Jason Blake is a great inspiration. He was diagnosed with Leukemia just over a year ago and continues to play in the NHL. Emily is an artist and sculptor who has been a family friend since she was four years old. Now she lives in BC and in the process of choosing a university to go to for her PHD in Fine Arts. Emily came to visit with Melodina last evening. All in all it has been a busy week so far.
Friday, December 5, 2008
Progress
Last Friday Melodina went into the gym at Sick Kids. This was her first time in a gym since July of 2007. She did 10 minutes on a bicycle and some stretching. She went back to the gym Tuesday and again yesterday. Yesterday was 15 minutes on the bike, core work on the balance ball, heel lifts, weights for triceps and biceps and She is working with a physciotherapist who is as impressed as I am at Meodina's determiation and improvement. Mel is still on anti viral drugs in the hospital but she is determined to coach skiing this winter.
Kelly Vanderbeek from Canada's National Alpine Ski Team has been encouraging Melodina right along. Kelly has convinced Marker/Volkl Ski company to work with Melodina and they are trying to put together a media event introducing Mel at the Lake Louise Women's World Cup this weekend. Doctors and Nurses have expressed amazement at Melodina's progress. I am not surprised. It is her own focus, positive attitude and will power that is the main reason she is alive. Never the less I am overjoyed watching her struggle bear fruit quickly. There is a long way to go but all the news this week is great.
For those of you reading this Blog. Thanks. I hope you find Melodina's story inspiring. I certainly do. If you are parents of a sick child stay strong. It is difficult watching your child suffer and it will change your life. You may not believe me now but some day you will see the multitude of positive things that result from it.
Kelly Vanderbeek from Canada's National Alpine Ski Team has been encouraging Melodina right along. Kelly has convinced Marker/Volkl Ski company to work with Melodina and they are trying to put together a media event introducing Mel at the Lake Louise Women's World Cup this weekend. Doctors and Nurses have expressed amazement at Melodina's progress. I am not surprised. It is her own focus, positive attitude and will power that is the main reason she is alive. Never the less I am overjoyed watching her struggle bear fruit quickly. There is a long way to go but all the news this week is great.
For those of you reading this Blog. Thanks. I hope you find Melodina's story inspiring. I certainly do. If you are parents of a sick child stay strong. It is difficult watching your child suffer and it will change your life. You may not believe me now but some day you will see the multitude of positive things that result from it.
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