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.

The story continues

The one thing that helps me cope with Melodina's death more than anything else is the fact that she inspired so many in her short life. She continues to inspire and I enjoy sharing some of these stories with you.

I told you in my last posting that a Nurse from Sick Kids was running in the Olympic Torch Relay with a picture [see below] that Melodina drew in her pocket. Here is what the nurse wrote to us about the experience. "All of the torch bearers had a chance to say something before we began running and I spoke of how this was a dream of mine and to inspire my children to go for their dreams. And then I spoke of Melodina and her dream to go to the Olympics. Not a dry eye on the bus. I still get emotional typing about it."

I feel that Melodina's story needs to be told. Her life was truly inspirational. Even in death she is somehow able to help motivate and encourage people. It is an awesome feeling and I am inspired by all who use her story in their own lives and share it with others.

Thank you all

Thank you everyone who has expressed your understanding of the strange and difficult time this season presents to us. Your thoughts and prayers are appreciated. It is hard to even think about going through Christmas and New Years without Melodina. Never the less there are many things to be thankful for, not the least being friends and acquaintances who are so very thoughtful and supportive.

We have received cards and e-mails from friends. Many of these had flowers or some other pretty picture on the front. At first I thought it was strange that there were so few that were the standard "Christmas Card". Two days ago I opened up a card that might explain why. A Jewish family we are friends with sent a card with a beautiful photograph of a rose on the front - not so strange as you would not expect a Christmas card from people who celebrate Hannaka. Inside, however was a note that, to us that might explain why It expressed kindness and compassion and I wanted to share it with the readers of this blog. "We did not know whether you are ready for Christmas Cards, so we decided to let you know that we are thinking about you and that our hearts are with you..."

If you know someone who is suffering, for whatever reason , something present or from memories of the past, perhaps you can take the time to let them know you are thinking of them. It means a lot.

Another person sent us a card - picture of tulips this time - to let us know she was thinking about us. It was from a doctor from Sick Kids, who had treated Melodina early on in her ordeal and again a couple of years later. She praised Melodina and complimented us. Her memories which she shared brought tears to my eyes and I wanted to share some of her words with you. "...What a tragic loss to your family and also to the world in general who is really missing out on not having Melodina any more... Thank you for the impact you have had on me personally and professionally." Thank you Doctor. You are important in our lives too.

The other story I wish to share with you is about a nurse from Sick Kids. She sent me an e-mail today. This nurse is running in the Olympic Torch Relay tomorrow. Melodina had drawn the design above. It is the Lymphoma Cancer ribbon with an alpine ski racer and the word Courage - a key word in Melodina's philosophy and her approach to life. The Nurse wanted to know if she could print out a copy of the ribbon to carry with her on the run. She wrote "...I cannot show anything on the outside of what they gave me to wear but it will be in my pocket and Mel in my heart. I hope you are all doing well and we think of you lots at the hospital."

I am grateful to each of you and so may other well wishers the world over. Have a wonderful season. May you enjoy your love and find peace. In Melodina's spirit I wish each of you strength and courage.

The Holiday Season

The holiday season is upon us; people are inviting us to parties and wishing us the best. Indira and I are trying to do a little decorating of the house - not because we're celebrating but because we both think we should. Last year Melodina was in the ICU over Christmas and New Years and on to her death. Both Indira and I lived at the hospital, one sleeping in a chair by her bed while the other curled up with other ICU parents on the benches in the waiting room. This is how we remember the holidays. I don't remember which day was Christmas or New Years, I only remember the minutes, hours and days as we sat our watch, hoping Melodina would recouver, knowing she might die.


Indira tried to go for councelling a couple of months after Melodina died. It was difficult to access at first. The Hospital for Sick Children had given us a package that included grief councelling information. Perfect if you live in Toronto. To us it seemed just cold and unfeeling. They gave us information that was useless to us. It was done with the best intentions of beaurocrats trying to help. Nothing personal. Nothing caring. Just send out the package without thought or feelings and congratulate yourself for doing your job. It hurt.


Eventually friends pointed Indira to a service in Orangeville, only 25 minutes away. She called. A very nice councellor came to the house. It was helping. At least Indira said it was helping and that is the best way to know. Right from the beginning she was told that it was expected that she would got to Orangeville for group councelling sessions soon. After five sessions at home, two a week, the councellor told Indira she couldn't come to the house any more. She couldn't provide individual councelling any more. Indira had to go to the group sessions or not recieve help.


The group sessions proved difficult right from the start. The problem is that when your child dies - even if you have other wonderful children and grandchildren as we do - even if you hold life as a sacred blessing, as we do - you still wonder why you are alive. You don't see any purpose to live and you sometimes wish you were dead. Every parent we know who has lost a child would have died so our children could live, if that were possible.

The group Indira went to was populated, understandably, by suicidal suicidal women. Some had attempted to take their own lives several times. The discussion wasn't around the children and how wonderful they were - it was around possible suicide. Indira was scared. These women were talking about things that were to close to her own emotions; they were talking about killing themselves and it terrified Indira. She came home depressed and angrier than she had been for some time. Indira couldn't talk to me about it. I felt helpless to help with a situation I did not understand. That councelling session, which I had not attended, was hard on both of us. That was the end of councelling.


Back to the holidays. Each day is a reminder that the one who loved giving the most, the one who loved family the most and the one who got the most joy out of others' happiness is not here this year. There is a large gap in what we think of as the holidays. We are trying. We have others in the family who are important. It just can never be the same when your youngest child suffered and died. We are trying to keep the spiritual side of the holidays. The idea of being grateful. We will get through it for the grandchildren but quite frankly I would much rather spent both Christmas and New Years alone meditating and reflecting. So be it.

Please don't tell us you understand because your grandmother had cancer and died. This is totally different. Please don't tell me we have too much attachment. The loss of a child is like the loss of an arm. You may learn to live without it but it is still gone. Please done tell us that time will heal. Like the amputated arm time does not heal. Some things are just like that. Whatever the cause, there is a loss that cannot be replaced and most cannot understand. Let us do the best we can. Support us with your love, not your with understanding, which is inadiquate. Thank you.

Am I bitter, sometimes, but not often. The reality is I am trying to live in a world that is completely new to me, a world where the light is dim and the rewards are few. Still I am grateful for my life and I look to understand life's lessons as they come to whatever extent I can. I sincerely wish everyone a wonderful holiday season. Mostly I wish that each of you can face the pain and suffering that you have and still smile. I know we all suffer. I hope that you can see the beauty of nature and our fellow human beings and enjoy the spirit of love while appreciating the blessings, past and present, in your lives. Whatever your religion, whatever your beliefs, I wish you peace and good will.

Another Honour for Melodina

The people of RS Ashram in Jamshedpur India have honoured the life and spirit of Melodina by planting a Peace Garden and erecting a Memorial in Melodina's Name.

RS Ashram is was founded by Sree Sree Mentu Maharaj and the land was donated by the Adivasi community (Indian aboriginal, often poor people). The ashram is considered part of the Adivasi community's Holy Land.

We consider it a great honour to have the contribution Melodina made to helping people achieve their potential and encouraging those she met around the world to live in peace with themselves and each other recognised by these kind and humble people. I feel that Melodina's life was so incredible that it should be an inspiration to those of us left in the world now and into the future. The Peace Garden in India should give many a place to reflect on the things that are important for generations to come.

The centre of the Peace Garden is a banyan tree. The banyan tree is famous around the world as the tree that Buddha was meditating under when he received his enlightenment. The tree planted at RS Ashram in Melodina's name is truly a small baby. In time it should grow into a very large and strong tree spreading much further than the biggest maple. Banyon trees provide shade and protection for humans, animals and birds alike, particularly during the hot hot months of the Indian summer. As such is is very appropriate to have such a tree represent the inspiration, solace and wisdom with which Melodina shaded those she met during her short life. Melodina believed that Buddha's teachings of kindness and compassion were important lessons for all of us to imbibe in our own lives.