Sharon Ingle

I never knew Sharon Ingle. I was supposed to meet her this past weekend but she passed away from cancer November 6th. Sharon was to be in a cycling instructor training workshop that I was running for CAN-BIKE and Cycling Canada in Cobourg Ontario. I was looking forward to meeting her for several reasons. Sharon Ingle was an amateur Triathlete who has competed for Canada since 1993. It was three months after she competed in the 2008 World Championships that Sharon was diagnosed with cancer. Like Melodina and so many other cancer patients she decided to not let the cancer rule her life. Sharon took punishing chemo treatments and much radiation She continued to train and compete. Like Melodina she won medals while on treatment. Nothing could stop her. By last summer, I understand she was told there was nothing more the doctors could do. She joined a bike club and took a CAN-BIKE course with the idea of becoming a certified instructor and help others enjoy an activity she loved. What an inspiration! I am sorry that I never got to meet Sharon Ingle. I am sorry that I never got to instruct her and I am sorry she is not going to teach cycling. Yet I know she continues to inspire. She inspires me and she inspired my students and she inspires many. Thank you Sharon.

Four years later

Today is the fourth anniversary of Melodina's death. We think of her constantly. Still the memories are bitter sweet and do tend to give much comfort. I have been skiing almost every day recently and it seems almost like she is with me. She certainly continues to inspire me. Indira and I have been looking at photographs today and remembering trips to the world's various mountains, times in India, with family and yes the years at The Hospital for Sick Children. We have received many kind messages and that too is comforting. For us it is a special day toremember and contemplate but it is generally peaceful now.

Maggie

Maggie, Melodina's beloved dog died on Monday. Since Melodina passed away it has often seemed that Maggie understood our grief and emotions and looked after us in many wonderful ways. She would have been 18 years old next month. After Melodina died Maggie spent three days searching every corner of the house without sleep. We understood she was looking for Melodina. They hadn't seen each other for over a year because Mel was in the hospital. Maggie seemed to know somehow what had happened. She settled down when Indira gave her the blanket Melodina had died in. Maggie slept on it for the rest of her life.

When Indira would be distraught with grief Maggie would come to her and insist upon sitting on her lap. If I was sitting in a chair feeling sad Magggie would come and lie on on, not near but on my feet. She knew our feelings and comforted us.

Her passing brought back, full force, the pain, the grief and the inspiration of loosing a child. We are grateful to Maggie and all the love and devotion she gave us.

Hello

I know it has been a long time since I wrote on this blog. For those of you who are new, hello. To repeat visitors please accept my apologies. Today I got an e-mail from an old and dear friend who decided to write to me after viewing www.melodinatribute.org. He asked for more information about Melodina and I realized I hadn't been keeping up my end of the blog.

We have been to funerals of other great souls, mostly children, who were in the bone marrow transplant unit with Melodina. Caiden, the four year old inspirational boy I talked about earlier in this blog passed away at the age of eight. Adam, a major inspiration to anybody involved in the National Kids Cancer Ride passed away. Adam and I had a date to ride our bikes together when he got better. That won't happen now. Others who always wore a smile and expressed concern for others despite their own suffering have left this world - infants, children and teens. Each and everyone giving more than any human could possibly be expected to. Each and every one an example of how to live for others, for a better world. They are all missed. The cancer Kids are my heroes.

As a family we continue to raise money for Sick Kids Foundation through the Melodina Ski and Snowboard day. I will announce soon the plans for next February. All your support is appreciated. Let us do all we can to help relieve the suffering of children and help build a better future for this sick world. Enjoy life, be grateful and do what you can to bring peace. i will write again soon.

Ski and Snowboard Day

This should have been written a long time ago. We had an extremely exciting Ski and Snowboard Day at Mansfield Ski Club to raise mo9ney for the Sick Kids Foundation. The thing that struck me the most was the smiles on everyones' faces. We even had a cancer patient from Sick Kids come and ski and talk to all the participants. It was a wonderful day and thousands of dollars were raised for the Foundation. Thank you everyone who participated.

We are beginning to plan next years event so keep a day to come and ski or snowboard for Sick Kids in Melodina's memory. You will be glad you did. Beginners welcome.

Ongoing Participation - A Difficult Task

Recently a new study spearheaded by the Hospital for Sick Children and the University of Toronto was launched. They are looking into how to make the experience at the hospital while a child is dying better. As I understand it the idea is to improve service and care for both dying children and their families. In order to accomplish this and come to realistic recommendations, mothers who have lost children in the hospital are being surveyed. Indira was asked to participate in this study. Difficult as she knew it would be she agreed. It seems a way to help children and their families who find themselves in a similar situation that we were in nearly two years ago.

We knew it would be difficult so I sat down with Indira to answer the first of two multi page surveys that she would be asked to fill out. The questions brought back all our experiences of the last two or three weeks of Melodina's life. We had to live them all over again. We discussed our feelings and what we thought could be improved and Indira answered the questions. We cried together. The questionnaire even asked what level of emotional pain the participant went through filling it out. It was even more traumatic than Indira had thought it would be. Quite an experience! Indira went through it gladly hoping to help dying children and their parents in the future.

It is hard to imagine if you haven't had the experience of watching children dying through excruciatingly painful disease and even more painful treatment. You might think that one looses the feelings of pain and horror over time but that is not true. I think, maybe that if you don't feel the trauma as a part of life you are running away. I have seen doctors who try to hide their emotions and their empathy behind an impenetrable wall have also hidden their humanity. While they appear to function normally, these doctors also fail their patients by apparently being unable to know them as human beings. People are treated as mechanics treat cars. The doctors suffer from lack of emotion and the patients suffer from lack of humane care. This may or may not be an accurate assessment but it fits with my observations and it is sad. If you pray perhaps you would want to pray for the doctors as well as the patients. Both are in need of ongoing help and care. At least that is my understanding of my observations.

Having written the above it should be noted that most of the doctors and staff at Sick Kids exhibit an extraordinary amount of compassion to go with their world class education and exceptional intelligence. We are fans of Sick Kids and continue to follow Melodina's example by fundraising for the Sick Kids Foundation. See http://www.melodinatribute.org/ . While we have to relive the experience in order to help others we also remember the many positive people and the amazing strength of spirit exhibited by "cancer kids". They continue to be an inspiration and I will be be forever grateful for the lessons learned and many of the experiences though I wouldn't wish that anyone go through them.

Back to the survey. We remember the Chronic Care Unit at Sick Kids as being a compassionate and caring part of the hospital with much opportunity for us to participate in Family Centered Medicine.  Never the less many things could have been done differently and much agony could have been dampened or avoided so Indira went through the difficult experience of detailing her memories through the survey. Soon the next stage will come and we will do it again.

Sick Kids has already made changes to the training in the some parts of the hospital where families and patients are under extreme emotions stress as a result of our experience, my written report and follow up investigations. The Paediatric Intensive Care Unit and the Neonatal Intensive Care Unit nurses have now participated in "crucial confrontation training in hopes of reducing misunderstanding, poor communication and indeed, interpersonal conflict." This is just one more example of Sick Kids Hospital trying to do a better job. We look forward to the continuing practice of always trying to do it better.

The Melodina Herman Ski and Snowboard Day

Melodina's family and friends are organizing a ski and snowboard day at Mansfield Ski Club on January 28th 2011. The event combines Melodina's passion for supporting the work of the SickKids Foundation and her love of skiing. The funds raised that day will go to the SickKids Foundation. We have also continued the melodinatribute link where you can contribute directly to the foundation in Melodina's name.

Please take the time to visit our new web site and follow us on Twitter and Facebook. Links to all of the above can be found at: http://www.melodinatribute.org/ . Please take a look.