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.

National Kids Cancer Ride

Every day the National Riders for the Sears National Kids Cancer Ride dedicate that days ride to a child before they get on their bicycles. Yesterday they were riding for Melodina. I was able to meet the riders and thank them for remembering my daughter. It was very emotional. I am not riding with the Sears ride this year because I wanted to dedicated all my fundraising activities to the Sick Kids Foundation. (see my other  blog posting of today's date.) I do however strongly support the work of the ride which funds the needs of children "living with and beyond cancer". It is the longest charity ride in the world. Please visit their website at: http://www.coasttocoastagainstcancer.org .

Sick Kids Comes Through

As you know by reading earlier postings Melodina fervently hoped that her experiences at the Hospital for Sick Children could be used to help the hospital change some of the things they do and thus make life better for future sick children and their families. In addition to the recommendations that were presented to us last March, Sick Kids has confirmed that even more changes are being made as a direct result of Melodina's experience, my report and a formal review by the hospital.

These changes include the following. A new model for "rounds" is to be established and "Family centered rounds have commenced." A number of hospital wide initiatives concerning challenging situations which should improve two way communication in  particularly with immigrants, teens and all families including additional training for staff on several wards.

In addition "the hospital has embraced a new strategic direction - hospital wide service excellence." All of the above and those initiatives outlined in my April posting are just some of the changes being made. We are grateful that the Hospital for Sick Children has a culture of "how can we do it better." It gives us hope for a better future for children here and around the world. With that in mind my next posting will outline a new fundraising effort on behalf of The Sick Kids Foundation being launched by Melodina's family and friends.

Sick Kids Culture

As readers of this blog are aware I sent a report to the Hospital for Sick Children regarding our experiences - good and bad - while at the hospital. The report focused on Family Centered Medicine. This is a relatively new approach to medicine and has been proven in clinical trials to enhance the effectiveness of treatment.

The report was the most difficult document that I have ever written. I wrote fifty-seven pages trying to focus on the great care that Melodina received while she was at the hospital. The purpose of the report, however, was an effort to help the hospital to make positive changes that would effect the care and treatment of other children well into the future. As such I tired to express the pain and suffering that was experienced by Melodina, other children we witnessed and other parents struggling to understand what was happening with and to their children.

Everything in the report was discussed and approved by Melodina. She ask me on a regular basis while she was confined to her hospital bed to include this or that incident or experience in the report. Indira, Harmony, Melodina and I discussed what to include for months. We were trying to make the report not only helpful in its content but carry the incredibly powerful impact of a family caught in a war they didn't want to be a part of and fighting for the life of their youngest child. I wanted the reader to somehow feel the extreme suffering as well and the consistent good will and extraordinary will power throughout inconceivable suffering that Melodina exhibited.

Melodina was a unique child by any measure. What she experienced was hyper real and so beyond the commonplace that I felt it was necessary to somehow bring the reader into Melodina's world, her life and her experience. That is why I had a difficult time writing. It was like experiencing the most painful time of my life and watching what is the inexplicably horrendous suffering of children all over again. It is, without a doubt an inspiring and life changing experience. I would not give up a minute of it but still, one wonders, why?

The details of the report were investigated by a team from the hospital. The inquiry was done under Ontario's Quality of Care Information Protection Act. QCIPA protects all who contribute to such an inquiry from repercussions by making anything received by the hospital confidential. Even the final report by the committee is confidential. The only information we are able to get are the recommendations which are actually implemented. Obviously this is a trade off. It likely means that those the investigating committee talk to can feel free to be honest without fear. The downside is that it is anything but an open process.

I accept the process as valid for three reasons. First of all I think that staff at the hospital need to be able to express themselves without fear. Secondly the staff involved in the investigation told me that 80% of their recommendations have been implemented historically. The third reason is that it is The Hospital for Sick Children. My experience with the hospital tells me the culture of the hospital is such that the administration and most of the staff are constantly looking for ways to make things better for their patients and their families. They are constantly looking for better ways to treat those in their care.

We did meet with both the CEO of the hospital and the investigation team recently. Both apologized. (An apology is now legal without admitting guilt or liability in Ontario health care.) Then the committee went over areas where change is being made as a result of Melodina's experience. There should be better communication between doctors and patients and their families on the oncology/hematology wards in the future. More staff doctors should be hired in the Bone Marrow Transplant Unit. There are several other changes. I will report further in future postings.

We look forward to next steps which the hospital will inform us of soon.

Birth Day

Today is the anniversary of Melodina's birth. Last year, just three weeks after her death, we marked Melodina's eighteenth birthday with a celebration of her life. Hundred's of people attended the celebration and thousands of dollars were raised for the Sick Kids foundation, the largest funder of research into cures for childhood diseases in Canada. It was a memorable occasion and our family remains grateful for the support shown each of us and the wonderful generosity both of spirit and finances that is a lasting tribute and memory of the wonderful soul who was Melodina.

This year people who were close to Melodina remembered her birthday in their own ways. Some quietly, others verbally and many with some suitable activity. I went skiing as did Indira, Carter and Hannah. We will enjoy a piece of chocolate cake with neighbours this evening. May of Melodina's friends wrote on her Facebook wall. Harmony has kept Melodina's Facebook page open and from time to time people leave her messages or share something they wish with her in that way. My point is we remember, each in our own way, and the inspiration that was Melodina's signature in life lives on.

I tend to stress the incredible suffering, positive attitude, will power and other attributes that Melodina exhibited in Himalayan ways during her illness. As a parent, perhaps I didn't see the extraordinary effect she had on others throughout her life. Both parent and peers have reminded us how she often befriended those who were lonely and branded as uncool or worse. We have heard numerous stories of how Melodina could encourage the best in people without ever being judgemental or critical. A school music teacher from grades six, seven and eight, before Mel got sick, keeps a picture of her on the classroom piano and uses it to introduce Melodina's story excite students with the possibility of doing their best and achieving their goals.
Melodina received the 2009 Spirit Award from the Sick Kids Foundation. A plaque honouring her is in the main hallway at the hospital. The Sick Kid's Foundation became an important part of Melodina's life. She was inspired by the work they do and Mel's determination to help the foundation in any way she could inspired the staff of the Foundation. There has been over twenty thousand dollars raised in Melodina's name and the donations keep coming in. Some people give monthly, others yearly and many when they are inspired to do so. If you feel you would like to remember Melodina in this way donations can made at www.melodinatribute.org

Remembering

We met today at Chicopee Ski Club. Melodina's sister and brother in law Harmony and Mike were there. Indira and I were there along with our grandchildren Hannah and Carter. My sister Ellen came and skied with us. It seemed to be the right place to be today.

One year after Melodina died we were at the ski club where she learned to ski and where she spent many years summer and winter training to become an internationally ranked ski racer. Chicopee was a place Melodina loved; it was her playground. It was a place I always felt was safe for her. Everyone knew her and everyone looked out for her. It was like a second home - an extended family.

We saw many old friends who knew Mel and in some cases had taught and mentored her. It brought us comfort to be in the place she loved so much, participating in the sport that meant so much to her. A groomer asked where Melodina was. He hadn't known she'd died. We hadn't known that he knew her. He told us his fond memory of the young skier who would wait at the bottom of the hill shaking with anticipation, waiting for the groomers to finish preparing the slopes and put their equipment away. She wanted to be the first one up the lifts and the first one to ski down the hills. Her enthusiasm had somehow left an indelible mark on him. It was as if Melodina's presence on cold winter mornings served to remind him of the purpose behind his job, of the joy he gave people by fulfilling his mandate. Melodina affected people that way. She valued everyone and everyone tended to get something intangible but valuable from her.

Later we had dinner at Harmony's house. Indira lit some candles and Hannah enquired about the purpose. (Hannah had coped with her aunt's death by imagining that she had turned into a fairy) Harmony explained to Hannah that it was one year since her Auntie had died. Hannah said "Oh, its the birthday of a fairy." We all cried and wondered at the wonderful thought of a five year old child that death is really a birth day.

I'm home now writing this to share with everyone who reads this blog. It has been a sad day; a year of firsts is over. It has been a comforting day with many of those who loved Melodina together, family and friends. It was a day I will remember as being appropriate.