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.
Saturday, December 19, 2009
Thursday, December 17, 2009
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.
Tuesday, December 8, 2009
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.
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.
Monday, November 23, 2009
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.
H1N1
In order to help protect hospitalized children from coming in contact with the H1N1 virus the Sick Kids Foundation has postponed their awards ceremony until the spring. This is, in my opinion, a wise move. Protect the children!
We were emotionally prepared to receive the award for Melodina at the hospital where she died. It was a bit of a let down but we are looking forward to participating next spring and we thank the Foundation for their ongoing work on behalf of sick children. It has a profound and lasting effect on children here and around the world.
We were emotionally prepared to receive the award for Melodina at the hospital where she died. It was a bit of a let down but we are looking forward to participating next spring and we thank the Foundation for their ongoing work on behalf of sick children. It has a profound and lasting effect on children here and around the world.
Saturday, September 26, 2009
Spirit Award
Indira and I were very pleased to learn recently that the Sick Kids Foundation will be honoring Melodina with an award this fall. It will be in recognition for the effort she put into raising money and awareness for the Foundation during her illness. It is always humbling to be the parent of a child who accomplishes so much in so little time the way Mel did. We are grateful that the Foundation recognises what an incredible human being she was. The following is taken from a letter sent to us by Mr. Ted Garrard, the President and CEO of the Sick Kids Foundation."I am pleased to write to you today to inform you that Melodina has been selected to receive the Spirit Award at the 2009 Kids Believe in Sick Kids Awards. Sick Kids Foundation is very proud of all that Melodina did to raise money for Sick Kids during her battle with cancer and feel that she was an inspiration to others during her life. For this we would like to recognize her kindness, strength to endure anything and generosity at this years ceremony...
"We are very proud of the difference the youth that have fundraised for Sick Kids are making in the lives of the children who need our help and I can't wait to celebrate Melodina's inspiring generosity."
As readers of this Blog will certainly know the Sick Kids Foundation is at the centre of our fundraising efforts as a family. This is largely because it meant so much to Melodina but also because the Foundation has demonstrated clearly it's dedication to easing the suffering of sick children however they can. We have met many wonderful dedicated people at and through the Foundation. If any readers would like to donate or donate again to the Foundation in Melodina's name I remind you that you can contact them at the following link: http://www.melodinatribute.org/
Indira and I are at Harmony's house right now baby sitting our grandchildren so that Harmony and Mike can enjoy the wedding reception of a young woman who used to live across the street from us. While thoughts of Melodina are always with us, it is a great blessing to have beautiful grandchildren - Hannah and Carter. They are so full of love and life!!! Just a thought- if you ever feel down and depressed about the troubles that life had given you just observe the simple joy of children. They seem to get such amazing wonder in a very simple and naturally mystic way. There is a lesson there for each of us, I think.
Sunday, June 21, 2009
Sears National Kids Cancer Ride
Here I am with Kurt Harnett in front of The Hospital for Sick Children, Toronto, June 20, 2009.Wonderful everyone!!! Three times I raised my goal and each time people responded and each time more money came and I, once again, reached my goal. Thank you so very much.
I rode 82 kilometers yesterday in the Sears National Kids Cancer Ride. I haven't ridden that distance in years and this was only my fifth time on a bike this year. On top of that it was raining for the first two thirds of the ride. It was an adventure for me but I kept thinking that if Melodina had made that commitment she would have used her will power to keep up. I'd drop back a bit and then push and catch up. In the end I rode into sick kids Hospital beside Kurt Harnett, Canadian cycling World Champion, four times Olympian and three times Olympic medalist.
It was a thrill to meet Kurt. I met him first at Sherway Gardens in Mississauga when we were both called up to the podium to speak. After the speeches I got hugs from many people, some who had lost their own children to cancer. It was an emotional time.
Kurt Harnett and I began and finished the final 20 kilometers together. In between when I was struggling Heather Jagar, one of the National Riders from Alberta rode with me. When I told her I was fine and she could ride ahead Heather said she enjoyed riding slowly and her legs could use a rest. My one fall was when I was riding beside her. (a few people fell in the rain yesterday but nobody was hurt) She didn't need to stay with those of us who were slower but she did. Thanks Heather. Eventually I got my second legs and finished comfortably.
Jesse Porter, Melodina's boyfriend from British Columbia, was there. Jesse is and incredible young man who supported Melodina in wonderful ways while she was alive and supported our family after she passed away. We like to think we are Jesse's Ontario family. Jesse is a very good photographer and he wanted to volunteer on the ride. Unfortunately the ride only takes along people who are twenty five or older because their insurance says these are the only people who are insured to drive. Jesse persisted. He told Melodina's story and he kept after them. The organisers called him in Invermere BC the afternoon before the Sears National Kids Cancer Ride began and said if he was in Vancouver by nine in the Morning he was going along. Jessie was there and yesterday the organisers had nothing but praise for this teenager who was not only taking hundred of photos a day but always looking for was to help out. They were very pleased that he came along. I felt so proud, like he was my own son. Linda, his mother must be very proud as well.
Harmony is an official "Ambassador" for the Sears National Kids Cancer Ride. Her job yesterday was to meet and greret people arriving at the community event on the front lawn of Sick Kids. Its great to hav her involved.
At Sick Kids I was met by Indira, Harmony, Mike, Hannah and Carter along with my sister Ellen, Uncle Bill and Aunt Lorna. It was good to see them. There were lots of people there. Some were Cancer Kids from the Hospital. In addition to talking about Melodina at Sherway Gardens, I talked about Cancer Kids and, how, as a group, they are the most incredible kids I have met anywhere in the world.
As if to emphasize the point I ran into the father who has a two and a half year old daughter with cancer whotold me what a twelve year old cancer boy told him and him and his wife. He was in the hall of a ward at Sick Kids. I know this boy and I know that he has suffered way more than most. He was told many months ago that he was going to die but so far he is alive. I saw him last week and he was smiling and positive in his attitude about his future. This boy looked at the parents of the little girl and said " Little children shouldn't have to suffer the way your daughter suffers. If I could I would die so that she could live and be healthy." The father had tears in his eyes as he told me this story and I had tears in my eyes as I listened. Cancer Kids are wonderful and they are worth saving.
If anyone would still like to donate to the Sears National Kids Cancer Ride, you can still sponsor me at: https://secure.e2rm.com/registrant/LoginRegister.aspx?EventID=25787&LangPref=en-CA and click on James Herman and the click Donate Now. Thank you all for your interest. You're wonderful and I love you.
I rode 82 kilometers yesterday in the Sears National Kids Cancer Ride. I haven't ridden that distance in years and this was only my fifth time on a bike this year. On top of that it was raining for the first two thirds of the ride. It was an adventure for me but I kept thinking that if Melodina had made that commitment she would have used her will power to keep up. I'd drop back a bit and then push and catch up. In the end I rode into sick kids Hospital beside Kurt Harnett, Canadian cycling World Champion, four times Olympian and three times Olympic medalist.
It was a thrill to meet Kurt. I met him first at Sherway Gardens in Mississauga when we were both called up to the podium to speak. After the speeches I got hugs from many people, some who had lost their own children to cancer. It was an emotional time.
Kurt Harnett and I began and finished the final 20 kilometers together. In between when I was struggling Heather Jagar, one of the National Riders from Alberta rode with me. When I told her I was fine and she could ride ahead Heather said she enjoyed riding slowly and her legs could use a rest. My one fall was when I was riding beside her. (a few people fell in the rain yesterday but nobody was hurt) She didn't need to stay with those of us who were slower but she did. Thanks Heather. Eventually I got my second legs and finished comfortably.
Jesse Porter, Melodina's boyfriend from British Columbia, was there. Jesse is and incredible young man who supported Melodina in wonderful ways while she was alive and supported our family after she passed away. We like to think we are Jesse's Ontario family. Jesse is a very good photographer and he wanted to volunteer on the ride. Unfortunately the ride only takes along people who are twenty five or older because their insurance says these are the only people who are insured to drive. Jesse persisted. He told Melodina's story and he kept after them. The organisers called him in Invermere BC the afternoon before the Sears National Kids Cancer Ride began and said if he was in Vancouver by nine in the Morning he was going along. Jessie was there and yesterday the organisers had nothing but praise for this teenager who was not only taking hundred of photos a day but always looking for was to help out. They were very pleased that he came along. I felt so proud, like he was my own son. Linda, his mother must be very proud as well.
Harmony is an official "Ambassador" for the Sears National Kids Cancer Ride. Her job yesterday was to meet and greret people arriving at the community event on the front lawn of Sick Kids. Its great to hav her involved.
At Sick Kids I was met by Indira, Harmony, Mike, Hannah and Carter along with my sister Ellen, Uncle Bill and Aunt Lorna. It was good to see them. There were lots of people there. Some were Cancer Kids from the Hospital. In addition to talking about Melodina at Sherway Gardens, I talked about Cancer Kids and, how, as a group, they are the most incredible kids I have met anywhere in the world.
As if to emphasize the point I ran into the father who has a two and a half year old daughter with cancer whotold me what a twelve year old cancer boy told him and him and his wife. He was in the hall of a ward at Sick Kids. I know this boy and I know that he has suffered way more than most. He was told many months ago that he was going to die but so far he is alive. I saw him last week and he was smiling and positive in his attitude about his future. This boy looked at the parents of the little girl and said " Little children shouldn't have to suffer the way your daughter suffers. If I could I would die so that she could live and be healthy." The father had tears in his eyes as he told me this story and I had tears in my eyes as I listened. Cancer Kids are wonderful and they are worth saving.
If anyone would still like to donate to the Sears National Kids Cancer Ride, you can still sponsor me at: https://secure.e2rm.com/registrant/LoginRegister.aspx?EventID=25787&LangPref=en-CA and click on James Herman and the click Donate Now. Thank you all for your interest. You're wonderful and I love you.
Friday, June 12, 2009
Sick Kids Hospital
Indira and I had spent a lot of time (virtually all of our time) trying to be with and help Melodina for the last years of her life. It was hard, it was sad, it was inspirational in many ways. Melodina was amazing so were the other cancer kids. They are some of the most amazing people I have ever met. I would not give up a minute of it. Indira and I were talking about the cancer kids with a doctor when we visited the Hospital for Sick Children today. We all agreed that, as a group, they are, in many inspirational ways, the most positively awesome children we have ever encountered anywhere.
It was only the second time we had been back to the hospital since Melodina passed away. We left some information that we hope will help the hospital to improve its service to the children and the families it serves. It is a wonderful thing that Sick Kids is constantly trying to improve the way they do things. They're not perfect but they do try to always improve and that is the sign of a great institution.
After Melodina died there was a period when I was quite lost regarding purpose in my life. It wasn't that I had a loss of faith; I just couldn't function well and it was hard to understand what to do now. I still have days like that but generally three projects have helped me past feelings of hopelessness. I have decided that Melodina's story is important, ongoing and inspirational. Therefore I continue to update this Blog. Our family has decided to try to use our experience to help the Hospital to improve the way they do things with a particular focus on the kids and their families. Third, as a family we are involved in fundraising for research into childhood illness, particularly cancer.
So we went to the hospital today knowing that it would be difficult but feeling that we should. I delivered the information I had brought with me to the mail room and then we went looking to people we know. We met and talked happily with some of the hospital staff. It was good to see people who had cared deeply about Melodina. We exchanged some e-mails and phone numbers. We learned that some children we knew were in the hospital - some very sick - others just there for routine follow up. We first went to the oncology clinic and saw a young boy who is doing very well. The idea that Melodina might have been attending the clinic was, however, very hard. We saw great nurses and kind doctors and we went to one of the wards that Melodina had spent a lot of time on and talked to both children and parents, some of whom needed encouragement and strength. Its a hard life for the whole family on a childhood cancer ward.
All in all it was a difficult but good day. We spent time with some beautiful people and we faced some of our own difficulties. People who suffer and those who serve the ones who suffer are a very meaningful part of this life.
It was only the second time we had been back to the hospital since Melodina passed away. We left some information that we hope will help the hospital to improve its service to the children and the families it serves. It is a wonderful thing that Sick Kids is constantly trying to improve the way they do things. They're not perfect but they do try to always improve and that is the sign of a great institution.
After Melodina died there was a period when I was quite lost regarding purpose in my life. It wasn't that I had a loss of faith; I just couldn't function well and it was hard to understand what to do now. I still have days like that but generally three projects have helped me past feelings of hopelessness. I have decided that Melodina's story is important, ongoing and inspirational. Therefore I continue to update this Blog. Our family has decided to try to use our experience to help the Hospital to improve the way they do things with a particular focus on the kids and their families. Third, as a family we are involved in fundraising for research into childhood illness, particularly cancer.
So we went to the hospital today knowing that it would be difficult but feeling that we should. I delivered the information I had brought with me to the mail room and then we went looking to people we know. We met and talked happily with some of the hospital staff. It was good to see people who had cared deeply about Melodina. We exchanged some e-mails and phone numbers. We learned that some children we knew were in the hospital - some very sick - others just there for routine follow up. We first went to the oncology clinic and saw a young boy who is doing very well. The idea that Melodina might have been attending the clinic was, however, very hard. We saw great nurses and kind doctors and we went to one of the wards that Melodina had spent a lot of time on and talked to both children and parents, some of whom needed encouragement and strength. Its a hard life for the whole family on a childhood cancer ward.
All in all it was a difficult but good day. We spent time with some beautiful people and we faced some of our own difficulties. People who suffer and those who serve the ones who suffer are a very meaningful part of this life.
Ambassador
The Sears National Kids Cancer Ride has asked if Indira and I would honor Melodina by allowing them to use her and her story as an "Ambassador". We gladly agreed. I have filled out the ambassador form as if I was Melodina speaking. The following are two questions and the answers as I believe Melodina would have answered them.
Ques: "Tell us what Coast to Coast Against Cancer means to me."
Our whole family is working to relieve the suffering of children with cancer. I am truly blessed to have such an incredible group of people around me.
Ques: "Tell us what Coast to Coast Against Cancer means to me."
Ans: "I met several National Riders last year as my father rode with them into Sick Kids. I was in my wheelchair and my mother wheeled me over to the community event. I had to wear a mask to protect myself and I was too weak to walk.
"At the community event I met the president of Sears Canada. He asked me to ride with him this year. My plan was to be strong enough to ride in a regional ride with him and my father. Because of this the Sears National Kids Cancer Ride helped me focus my goals and helped give me courage to find my strength during the last months of my life.
"I also dedicated myself to raising funds and encouraging others to raise funds for childhood cancer research. My hope is that events like the Sears National Kids Cancer Ride will lead to a future where no children have to suffer what I suffered and what I saw others go through."
Ques: "Tell us what our message is to our riders, volunteers, sponsors and all Canadians."
Ans: "My watchwords are "strength" and "courage". We will win this battle as long as we continue to fight it together. The children need you. They are inspired and gain strength and courage from your efforts. Thank you."
Mel's sister Harmony has also become and Ambassador for the ride. She has agreed to do anything she can that's "not on a bicycle". I understand Harmony will be greeting and talking to people at a community event in Toronto on June 20th. Indira will be there as will my Uncle Bill. If you like we would like you to come to. I will give you more details (time and place) when I get them.Our whole family is working to relieve the suffering of children with cancer. I am truly blessed to have such an incredible group of people around me.
Monday, June 1, 2009
The Sears National Kids Cancer Ride
The Sears National National Kids Cancer Ride was important to Melodina. The ride contributes all donations to children's cancer research. None of the money you donate goes to the charity's administration. The admin costs are covered by it's sponsors.
If you sponsor me, as an Ontario Regional Rider, all you money will go to the Sick Kids Foundation, an institution to which Melodina donated as much of her time an energy as her health would allow.
You can sponsor me at the following link:http://my.e2rm.com/personalPage.aspx?registrationID=654905&LangPref=en-CA
Thank you all for reading this blog and thank you for caring. Please pass this along to anyone who might be interested.
If you sponsor me, as an Ontario Regional Rider, all you money will go to the Sick Kids Foundation, an institution to which Melodina donated as much of her time an energy as her health would allow.
You can sponsor me at the following link:http://my.e2rm.com/personalPage.aspx?registrationID=654905&LangPref=en-CA
Thank you all for reading this blog and thank you for caring. Please pass this along to anyone who might be interested.
Friday, May 29, 2009
Wondering Why
While Melodina was alive she inspired people with her ability to stay positive about the future through incredible suffering. I was thinking (and crying) this morning remembering. One of the main thoughts that helped me cope with Melodina's disease and suffering was the idea that if she could come through everything she had to face she would be an incredible inspiration to many, many people. I could just not understand how anyone who had been as healthy as she could get as sick as she did unless it was to somehow help others.
My false faith told me that the reason for the suffering was so that she could live and help others. What I didn't know was that she would die. What I didn't know was the number of people who were being and would be inspired by Mel's strength, her courage and her indomitable faith. I was right in thinking that Melodina would inspire many many people in a great many ways. I did not realize that she didn't need to live to accomplish that.
Recently a High School in Kitchener held a fund raiser for Cancer. Kids got together and formed Team Mel and donated their time and money in Melodina's name. They are inspired. I am inspired. I will be riding soon in the National Kids Cancer Ride in Melodina's name. I had hoped to ride with her but I will ride in her name. Within the next few days I will post information about how you can sponsor me and donate to cancer research. Please consider doing so, if you can. Everything helps and your money will help save lives and reduce suffering for children well into the future. I will be back to you soon with a posting containing the details of my participation in the ride and how you can be involved. Until then, smile, life is amazing.
My false faith told me that the reason for the suffering was so that she could live and help others. What I didn't know was that she would die. What I didn't know was the number of people who were being and would be inspired by Mel's strength, her courage and her indomitable faith. I was right in thinking that Melodina would inspire many many people in a great many ways. I did not realize that she didn't need to live to accomplish that.
Recently a High School in Kitchener held a fund raiser for Cancer. Kids got together and formed Team Mel and donated their time and money in Melodina's name. They are inspired. I am inspired. I will be riding soon in the National Kids Cancer Ride in Melodina's name. I had hoped to ride with her but I will ride in her name. Within the next few days I will post information about how you can sponsor me and donate to cancer research. Please consider doing so, if you can. Everything helps and your money will help save lives and reduce suffering for children well into the future. I will be back to you soon with a posting containing the details of my participation in the ride and how you can be involved. Until then, smile, life is amazing.
Sunday, May 10, 2009
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.
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.
Thursday, May 7, 2009
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.
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
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
Thursday, April 30, 2009
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.
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.
Friday, April 10, 2009
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 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!
Friday, March 6, 2009
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
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
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
Tuesday, January 27, 2009
From Alpine Ontario's Website
Melodina Herman 1991 -2009
Melodina Herman passed away Saturday, January 10th at 10:00pm, three years to the hour after she was first admitted to the Hospital for Sick Children in Toronto. She had a three-year fight with cancer, HLH and a compromised immune system. Melodina is an inspiration and a hero to people all over the world. Her struggle is truly epic. She taught all of us so much in so many ways. The primary focus of her life was ski racing. Like many young people, she hoped one day to represent Canada at the Olympics. During her career, Mel raced for Chicopee, Caledon and the Huron Alpine Development Team. She raced in both Canada and the US.
Mel was admitted to Sick Kids following a high fever that became apparent between runs on a Thursday at the first K2 Individual race of the 2007 season. She did complete her second run. Her doctor was not available until the following Monday so Melodina trained on Friday and Saturday. Her coach told her to rest Sunday as she appeared tired. She went to the doctor Monday and had tests done. Tuesday morning she wrote a math exam and by the afternoon was rushed to Headwaters Hospital and then to the Hospital for Sick Children by ambulance.
During that first winter, Melodina could not race so she took courses and became certified with both the CSCF and the CSIA. She did this while on medication that hurt her performance. She was in a severely weakened condition. She went on to train in Karate, receiving a hairline fracture in her leg from a kick because both the drugs and the disease weakened her bones. Throughout that year she maintained her position as an honor student.
By October she was back race training in Switzerland with HADT. She also achieved her Black Belt in Karate from the Technical Director for the world in her type of Karate. On his instruction she taught new technical Karate moves to a 5th Dan Black Belt and others in India in November and returned to Canada to train and race in her first (and only) FIS season.
Melodina’s goal for the 2007 season was to lower her FIS points, be on the podium once in a J race and improve technically. She achieved each of these goals. Tuesday February 12th blood tests at Sick Kids showed that once again both her red and white blood cells were severely compromised. Her immune system and her energy level were deteriorating. She was on the podium in J races each of the next two days. Her technical abilities were demonstrated in April that year while on a ski vacation to Alberta. Mel had a broken rib due to her brittle bones, yet skied well on all steeps, bumps and all terrain through a vast variety of conditions, from ice to powder. She had fun. It was the last time she skied.
By the fall of 2007, Melodina needed an emergency splenectomy and regular intense Chemotherapy treatment. She had a stem cell bone marrow transplant on February 7th 2008. Since that time, she was only out of the hospital for 10 days. While in the hospital, she inspired many all over the world with her positive attitude. She never gave up her hopes and dreams. The possibility of getting back on skis this winter helped keep her going. In the end, infections and multiple organ deterioration were too much and she passed away peacefully at the hospital.
Mel’s spirit, attitude and outlook can be summed up in her own words “I am so grateful. I'm so grateful I had cancer. It taught me so much about myself. I learned that I am so much stronger than I ever knew I could be.”
Mel’s family would like to thank everyone in the ski community for the extraordinary amount of support Mel has received from many, many people. Your prayers, wishes, and other efforts have been a great source of strength and encouragement to Mel and her family. You will never be forgotten. Special mention and gratitude goes out to Kelly Vanderbeek for her unfailing support and encouragement. Kelly kept in constant contact with Mel and was a source of strength, hope and inspiration for her. Also, while too numerous to mention individually, coaches, racers and their families were constantly supportive and encouraging to Mel. Thanks go to each and everyone.
Mel’s father has been writing a blog with Melodina's story. Mel would have been 18 on January 31st. Her short life was truly remarkable and touched many people (see the blog at http://teenwithcancer.blogspot.com). Mel wished to have an 18th birthday party which was also a fundraiser for The Sick Kids Foundation. The Sick Kids Foundation is the largest provider of funds for research into childhood diseases in Canada. In keeping with her wishes there will be a celebration of her life on January 31st with a silent auction to benefit the Foundation. Those who wish may also donate to the Foundation by clicking on Mel's Tribute Page www.melodinatribute.org.
Melodina Herman passed away Saturday, January 10th at 10:00pm, three years to the hour after she was first admitted to the Hospital for Sick Children in Toronto. She had a three-year fight with cancer, HLH and a compromised immune system. Melodina is an inspiration and a hero to people all over the world. Her struggle is truly epic. She taught all of us so much in so many ways. The primary focus of her life was ski racing. Like many young people, she hoped one day to represent Canada at the Olympics. During her career, Mel raced for Chicopee, Caledon and the Huron Alpine Development Team. She raced in both Canada and the US.
Mel was admitted to Sick Kids following a high fever that became apparent between runs on a Thursday at the first K2 Individual race of the 2007 season. She did complete her second run. Her doctor was not available until the following Monday so Melodina trained on Friday and Saturday. Her coach told her to rest Sunday as she appeared tired. She went to the doctor Monday and had tests done. Tuesday morning she wrote a math exam and by the afternoon was rushed to Headwaters Hospital and then to the Hospital for Sick Children by ambulance.
During that first winter, Melodina could not race so she took courses and became certified with both the CSCF and the CSIA. She did this while on medication that hurt her performance. She was in a severely weakened condition. She went on to train in Karate, receiving a hairline fracture in her leg from a kick because both the drugs and the disease weakened her bones. Throughout that year she maintained her position as an honor student.
By October she was back race training in Switzerland with HADT. She also achieved her Black Belt in Karate from the Technical Director for the world in her type of Karate. On his instruction she taught new technical Karate moves to a 5th Dan Black Belt and others in India in November and returned to Canada to train and race in her first (and only) FIS season.
Melodina’s goal for the 2007 season was to lower her FIS points, be on the podium once in a J race and improve technically. She achieved each of these goals. Tuesday February 12th blood tests at Sick Kids showed that once again both her red and white blood cells were severely compromised. Her immune system and her energy level were deteriorating. She was on the podium in J races each of the next two days. Her technical abilities were demonstrated in April that year while on a ski vacation to Alberta. Mel had a broken rib due to her brittle bones, yet skied well on all steeps, bumps and all terrain through a vast variety of conditions, from ice to powder. She had fun. It was the last time she skied.
By the fall of 2007, Melodina needed an emergency splenectomy and regular intense Chemotherapy treatment. She had a stem cell bone marrow transplant on February 7th 2008. Since that time, she was only out of the hospital for 10 days. While in the hospital, she inspired many all over the world with her positive attitude. She never gave up her hopes and dreams. The possibility of getting back on skis this winter helped keep her going. In the end, infections and multiple organ deterioration were too much and she passed away peacefully at the hospital.
Mel’s spirit, attitude and outlook can be summed up in her own words “I am so grateful. I'm so grateful I had cancer. It taught me so much about myself. I learned that I am so much stronger than I ever knew I could be.”
Mel’s family would like to thank everyone in the ski community for the extraordinary amount of support Mel has received from many, many people. Your prayers, wishes, and other efforts have been a great source of strength and encouragement to Mel and her family. You will never be forgotten. Special mention and gratitude goes out to Kelly Vanderbeek for her unfailing support and encouragement. Kelly kept in constant contact with Mel and was a source of strength, hope and inspiration for her. Also, while too numerous to mention individually, coaches, racers and their families were constantly supportive and encouraging to Mel. Thanks go to each and everyone.
Mel’s father has been writing a blog with Melodina's story. Mel would have been 18 on January 31st. Her short life was truly remarkable and touched many people (see the blog at http://teenwithcancer.blogspot.com). Mel wished to have an 18th birthday party which was also a fundraiser for The Sick Kids Foundation. The Sick Kids Foundation is the largest provider of funds for research into childhood diseases in Canada. In keeping with her wishes there will be a celebration of her life on January 31st with a silent auction to benefit the Foundation. Those who wish may also donate to the Foundation by clicking on Mel's Tribute Page www.melodinatribute.org.
Thursday, January 15, 2009
Celebration of Life
Melodina loved life. She asked that, should she die, we not hold a funeral or a memorial but she did agree to have all of us celebrate her life. In addition, Melodina was planning her 18th birthday party to be a fundraiser for the Sick Kids Foundation.
In keeping with Melodina's wishes and our needs we are holding a Celebration of Melodina's Life on what would have been her 18th birthday, Saturday, January 31st. It will be at St. George Hall, 665 King Street North, Waterloo, Ontario between 2:00 and 5:00 in the afternoon. Everyone who has been touched by Melodina and her life in any way is welcome.
Because of Melodina's wish to hold a fundraiser at her birthday party there will be a silent auction to raise money for the Sick Kids Foundation at the Celebration. You will find indications of the importance Melodina placed on the work of the Foundation elsewhere in this Blog. You may also wish to donate to the Foundation in Melodina's memory. You can do so on Mel's Tribute page on the Sick Kids Foundation website by clicking here.
We know from the kind and inspirational e-mails that we have received this week that Melodina touched many lives, some who knew her and many who had just heard her story. If Melodina has touched your life we would be honoured to see you again or meet you for the first time. Please come, if you can, to the celebration of her life.
In keeping with Melodina's wishes and our needs we are holding a Celebration of Melodina's Life on what would have been her 18th birthday, Saturday, January 31st. It will be at St. George Hall, 665 King Street North, Waterloo, Ontario between 2:00 and 5:00 in the afternoon. Everyone who has been touched by Melodina and her life in any way is welcome.
Because of Melodina's wish to hold a fundraiser at her birthday party there will be a silent auction to raise money for the Sick Kids Foundation at the Celebration. You will find indications of the importance Melodina placed on the work of the Foundation elsewhere in this Blog. You may also wish to donate to the Foundation in Melodina's memory. You can do so on Mel's Tribute page on the Sick Kids Foundation website by clicking here.
We know from the kind and inspirational e-mails that we have received this week that Melodina touched many lives, some who knew her and many who had just heard her story. If Melodina has touched your life we would be honoured to see you again or meet you for the first time. Please come, if you can, to the celebration of her life.
Sunday, January 11, 2009
The Passing of a Hero
Melodina Herman passed away yesterday, Saturday January 10th at 10:00pm three years to the day after she was first admitted to the Hospital for Sick Children in Toronto. She had a three year fight with cancer and a compromised immune system. Melodina is an inspiration and a hero to people all over the world. Her struggle is truly epic. She taught all of us so much in so many ways. Her mother and I, her sisters and her niece, nephew and brother in law, her aunts and uncles and all who knew her and gathered their own strength through her great dynamic personality will miss her dearly.
Melodina is pain free now. While she was alive Melodina did everything she could for the Sick Kids Foundation. The Sick Kids Foundation is the largest provider of funds for research into childhood diseases in Canada. This institution was near and dear to Melodina's heart. If anyone feels moved to give or donate I know Melodina would want you to support the Foundation http://www.sickkidsfoundation.com/. Please feel free to to donate in Melodina's name.
I would like to thank everyone for the extraordinary amount of support Melodina has received from people of varying backgrounds, cultures and religions all over the world. Your prayers, wishes, and other efforts have been a great source of strength and encouragement to Melodina and her family. You will never be forgotten. You are the reason I believe that we can, with God's help, build a better world of Peace and Love and Unity. Thank you for your inspiration.
I will try to keep updating my blog with Melodina's story in the hope and faith that she can continue to inspire.
Melodina is pain free now. While she was alive Melodina did everything she could for the Sick Kids Foundation. The Sick Kids Foundation is the largest provider of funds for research into childhood diseases in Canada. This institution was near and dear to Melodina's heart. If anyone feels moved to give or donate I know Melodina would want you to support the Foundation http://www.sickkidsfoundation.com/. Please feel free to to donate in Melodina's name.
I would like to thank everyone for the extraordinary amount of support Melodina has received from people of varying backgrounds, cultures and religions all over the world. Your prayers, wishes, and other efforts have been a great source of strength and encouragement to Melodina and her family. You will never be forgotten. You are the reason I believe that we can, with God's help, build a better world of Peace and Love and Unity. Thank you for your inspiration.
I will try to keep updating my blog with Melodina's story in the hope and faith that she can continue to inspire.
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