Mother's Day

Today is a very difficult day. Not only is it Mother's day but Melodina died exactly four months ago today. My mother, who was living with us, died exactly three years ago today, four months after Melodina first went to Sick Kids.

Indira looked after my mother with the same attention she would give her own mother if she had the opportunity. They had a wonderful relationship that my mother cherished. Our observations lead us to believe that my mother decided it was time to die after Melodina got sick. She just couldn't face that fact that a grandchild might die before her. All these things are clear in our minds today.

Still we have a lot to be thankful for. We are at Harmony's house today. Harmony and Mike always welcome us lovingly. Our grandchildren Hannah and Carter always love us and enjoy our company. Because of each of them we are having lots of love and even some smiles and laughs.

It is a day to enjoy the children. It is a day to reflect on love past and present. To be quite candid, I was somewhat afraid to face this Mother's day - the first without Melodina. Indira cried first thing this morning and I held her. Nevertheless there is love in the world and we can all find some joy in that love. We wish every Mother a very Happy Mother's Day.

Just a Note

I thought that some who read this blog might be new to it. I have been writing it with the hopes that others who need it will find both hope and inspiration. I encourage you to go back to the beinning and read from the first posts so that you might have and opportunity to get to know Melodina and her struggle with cancer. I believe that it is an epic and inspirational story.

Although Melodina passed away on January 10th, 2009 she inspired many around the world. Her life and her story still continue to do so. I expect to post some of the comments from people who wrote about Melodina and how she effected their lives on this blog in the coming days and weeks. I trust that in keeping Melodina's memory and her inspiration alive that you and others may be inspired in your own lives. Together we can help change in world - one baby step at a time.

A Prayer

I am cleaning out my home office after over a year at the hospital with Melodina. I have certainly found some interesting, sometimes emotional memories. The following is a prayer I found, undated and written in my mother's handwriting. It seemed to have a very profound effect on me and I thought I would share in the hope that someone reading it would find that it touched their life.

My Mother’s Prayer

Lord help us to look outside the ghetto of self, to perceive other human persons and to choose – however tentatively – to relate to them at levels of humanness. May we decide that certain things in the world, including love and justice, matter even more than our own lives and commit ourselves to them. May we continue to give love and receive joy in resolving to serve and not just in being served.
Teach us when to act in support of the oppressed; Teach us why we have to act; Teach us to be clear for whom we will act; Teach us where to act; Teach us how to act and give us courage to move out for you.
Oh Lord, Help us, not only with a reorganization of society but a fundamental reordering of priorities that sets being above having; Sharing above possessing; Creativity above manipulation; and joy above anything.
Amen

The above prayer was written by Ethel Patricia Herman in Winnipeg – date unknown

Toronto Star

Hello,

This Blog is mentioned in an article in the Toronto Star today. Also Harmony's poem from an earlier posting is featured prominently. You may access these online at:
http://www.thestar.com/article/625738 Also some of you may wish to read the Star article about Melodina from a year ago. It is on line at: http://www.thestar.com/SpecialSections/SickKids/article/347535http://

I have not written as much as I could on this blog recently. Life, while not really getting back to normal, is moving along. I'll not pretend that it is getting easier for Indira and I but we are slowly engaging in more activities and that is good. Everyone who has supported us in so many ways has helped us during this period of our lives.

My understanding and faith in people has remained strong because of you. I believe that everyone wants to be good, loving and kind. I believe that helping each other, supporting those in need in any way and generally contributing to making the world a bit better is human nature despite what the historians would have us believe. The hundreds and hundreds of people world wide who have helped us with their wishes and kind words as well as the many contributions to the Sick Kids Foundation in Melodina's name and the various other kindnesses shown to us have confirmed my understanding that this is the real nature of humanity. Keep it up. What you do is important. Thank you.

I am trying to write a report to the Board of Directors and CEO of Sick Kids detailing our experiences at the hospital and offering suggestions. It is Indira's, Harmony's and my hope that they will be able to use our intimate involvement in the day to day life of of the hospital to help make positive strides in their ongoing efforts to provide the best services and care to their patients and families possible.

I intend to continue writing in this Blog but for now the report to the hospital is my priority. Thanks for reading and thanks for being you.

Thoughts

Today is Good Friday, April 10th, 2009. It is three months to the day since Melodina passed away. I still wake up in the night thinking what I will do with Melodina tomorrow. My wife, Indira, cries every morning and every evening. We know that if Melodina had lived her organs were so stressed that she would have lived the rest of her life with reduced function. We know that she was in constant pain for the final year of her life and we know that death must have been a blessing for her. Still we are left behind and we don't know why.


The psychologists list the stages of grief. If memory serves well I went through something akin to those classic stages of grief when my father died and again when my mother passed away. With the death of our daughter all rules are gone. There seems to be no common pattern. Everyone close to her is grieving in their own and markedly different ways. I am writing this posting to help both myself and others understand and to encourage other families to stay together. You may not understand how your spouse or child is grieving but rest assured they are. This is the time you will need each other. This is the time that only your deep love for each other can see you through. Somehow we must be able to love without judging others against the symptoms of our own grief.


I will be quite candid. My wife Indira finds that everything she sees reminds her of Melodina. Food reminds her that Melodina suffered and couldn't eat the things she enjoyed for the final year of her life. Or it reminds Indira that Melodina will never eat that food she used to enjoy so much again. No matter what we do Indira can only think that Melodina would have enjoyed it. Melodina is missing it. Indira feels guilty that we could not save our daughter.

On the other hand, I am trying to rely on my understanding of life. I have lived believing that we all have a purpose. With that in mind I try to understand that Melodina fulfilled her purpose for being born. I have tried my whole life to be a good person. I have tried to change myself and help others. In that I have been more or less successful. Perhaps I am not the best judge. But I do know that Melodina, without seeming to try, succeeded in changing her own life, in growing and developing into an example anyone could readily follow. She also helped and inspired hundreds of people at home and around the world. I find her life to have been positive and as short as it was it was complete.

What I am finding difficulty grasping is the purpose for my own life. I have always had a sense of purpose or perhaps it is more accurate to say that I have always been able to create a sense of purpose. Right now I have two holes in my life. The first is the loss of Melodina and the second is the loss of my own sense of purpose. I am trying to learn to live meaningfully again. I expect I will, over time find it easier to live without my youngest child. I don't think I will ever get over it but I should learn to live with it.

At any rate my wife and I are grieving differently. Our daughter Harmony and son in law Mike are each grieving in their own ways. At this stage we cannot always expect understanding from each other. We cannot expect to understand each other. Many families are torn apart by this lack of understanding while grieving for a lost child. I trust the fact that we love each other will be the cement that holds us together through this time. I am blessed to have a wife and children who do love and hallelujah - they love me!

It is difficult to understand why a child dies before its parents. We believe that that is not the way it's supposed to be. It is impossible for me to understand what it is like for a mother to lose a child. I cannot know what it is like for a sister to loose a sister so young. I can only hang onto love and hope that time will continue to bring change and that with that change will come understanding. I must remind myself daily that Melodina's life was incredible and full. I must remember that I have those who love me, no matter how much they are suffering and no matter how much pain they are feeling right now. My family is a blessing. They cannot always be there for me right now but with effort we can follow Melodina's motto of Strength and Courage and face tomorrow together. I am grateful!

The Love of a Sister

Melodina and her sister Harmony were very close. Harmony is eleven years older and a better sister/sister relationship I have never seen. Harmony wrote the following:

For eighteen years, you were my girl
The closest blood I had
You understood my very soul
And fights with Mom and Dad

The day you came into this world
Was one of joy and pride
From that day on I was sure I’d have
A sister by my side

And although you were the younger one
You inspired me each day
To live my life with zest and zeal
The “Melodina” way

There couldn’t have been better aunt
For my daughter or my son
And though you loved them like a mom
I admit you were more fun

On weekends we would lounge in bed
Sharing jokes and secrets too
Sisters, friends and biggest fans
That was me and you

Your greatest battle was fought in bed
Not on the mats or slopes
But this was one you could not win
Despite our prayers and hopes

In eighteen years you touched more hearts
Than any of us knew
And though your spirit still inspires
I will always miss having you

Melodina's Own Words

Shortly before she died Melodina wrote about herself for Inspire Magazine. An edited version of this will be published by the Sick Kids Foundation in the next edition of Inspire. The following is what Melodina wrote.

Biography for Inspire
by Melodina Herman

I was never an average child. From the second I was born I showed it. Within minutes of taking my first breath I lifted my head, turned it left, turned it right, re-centered it and placed it back down on my mother’s breast.

Growing up I was rarely sick. From the age of three until I entered The Hospital for Sick Children just before my 15th birthday I hadn’t even taken an anti-biotic. By grade three I had developed my goals and the steps necessary to achieve my dreams of earning my Black Belt in Karate and competing at the Olympics in Alpine Ski Racing.

In August of 2005, I left Canada for the first time to train for ski racing on more difficult terrain. While in Chile I was tired all the time and often felt sick. Upon my return home I felt much better. In October of that year I left home again to train, this time in Zermatt Switzerland. Again I found myself tired and sick but this time, upon my return home, I didn’t improve. I had believed that it was Altitude Sickness but my parents thought that my cold like symptoms indicated that I had been pushing myself too hard. They believed I was having difficulty fighting a cold or the flu.

November and December passed and my symptoms only worsened. I began sleeping longer hours and having a difficult time getting myself up in the mornings. I developed a crupe like cough that although unproductive worsened every day. As the New Year approached I began to have fevers occasionally that were low grade and didn’t last long at first. Then every evening I started getting higher fevers accompanied by shaking. These however did not last and my temperature was fine during the day.

January 5th and the first race of the season had arrived. I skied the course beautifully but my clocked time didn’t reflect my near perfect performance. Nobody could seem to find a reason for it. We went into the chalet to await the second run and have some lunch.
During lunch I sat across the table from my father who noticed that I was shaking terribly. When he asked if I was cold I shook my head, no. He placed his hand on my forehead and told me I had a high fever. I decided to complete my second run (even slower than the first it turned out) and my father told the coaches I was leaving to go to the doctor’s office. It was a Thursday and when we got to the doctor’s office we were told he wouldn’t be in until Monday. I trained Friday and Saturday but my coach told me to take Sunday off because I appeared too tired.

Monday I went to the doctor’s office on the way to school, had some blood tests done and a chest x-ray was scheduled for the following morning. Tuesday morning I went for the x-ray and then onto school to write a math exam. I called my mom to come and get me. I was too tired. Mom drove me home. As we walked through the door the phone rang and the doctor on the other end was frantically telling us not to go anywhere, an ambulance was coming.

I was rushed to Headwaters Hospital in Orangeville. They pulled more blood work and did another x-ray. My blood count had been dangerously low the day before and had dropped further so that I had no immune system that day. The Orangeville pediatrician said he didn’t even want to guess at what was wrong and sent me in the same ambulance I had come in directly to the Hospital for Sick Children in Toronto. I was admitted to the General Pediatrics ward.

That night a hematologist told my father that with my blood counts as low as they were and the activities I had been doing she would have thought I might have died a couple of months earlier. After three weeks of what seemed like endless tests a diagnosis was given which seemed more like a description of what was going on inside me. They called it “Auto-Immune Hemolytic Anemia.” I was out on a very high dose of the steroid called prednisone. This was to help keep my blood counts up. After four months I was free of the medication and it appeared that my counts were holding. I was weak and 45 pounds overweight but I was able to stop the medication.

During the next eight months I grew stronger and even managed to achieve my Black Belt in Karate. I began the ski season well and participated in my first international races. However, I soon received some bad news. On a check up at Sick Kids I found out my counts had dropped again an I was put back on steroids.

This time the steroids didn’t work and as time passed my condition worsened. Still I managed two ski medals during that season. By the middle of summer I was in and out of Sick Kids at least weekly and by September I needed an emergency splenectomy. My 6.5 kilogram spleen was removed. Once again I was back in the hospital and still no one knew why.

Samples of the tissue from my spleen as well as from both a bone marrow biopsy and spinal puncture were used to stud the cause of my illness. After 21 months I was diagnosed with Delta/Gamma Hepatosplenic Peripheral T-cell Lymphoma with an underlying disorder called HLH. The malignant cells that were in my blood were clones of normal cells and could not be identified under a microscope. This was the first time this specific type of cancer was diagnosed at the Hospital for Sick Children.

I was one of less than 75 documented cases worldwide, most of which ended in death. After four rounds of Chemotherapy I had still not gone into remission. I would need a Bone Marrow Transplant for any hope of surviving. I received donated bone marrow stem cells from an unrelated donor on February 7th 2008 and began my road to recovery.

Over the next nine months I took everything life threw at me while living in the hospital. I’m still fighting a nasty virus called CMV but recovering at the same time re-learning to eat and walk and doing physcio. I have a job set up for this winter and still intend to complete my goal of competing at the Olympics in Alpine Ski Racing – and expecting to win.

Melodina Herman November 2008