Parent of Teen with Cancer

Ski and Snowboard Day

2011-04-24T16:39:00.004-04:00

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

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

Ongoing Participation - A Difficult Task

2010-11-22T14:48:00.000-05:00

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

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

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

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

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

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

The Melodina Herman Ski and Snowboard Day

2010-09-18T21:51:00.002-04:00

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

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

National Kids Cancer Ride

2010-09-18T21:39:00.001-04:00

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

Sick Kids Comes Through

2010-09-03T22:33:00.000-04:00

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

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

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

Sick Kids Culture

2010-04-08T08:22:00.012-04:00

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

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

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

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

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

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

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

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

Birth Day

2010-01-31T17:44:00.009-05:00

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

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

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

Remembering

2010-01-10T22:13:00.004-05:00

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

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

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

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

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

The story continues

2009-12-19T20:24:00.003-05:00

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

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

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

Thank you all

2009-12-17T17:05:00.008-05:00

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

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

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

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

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

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

The Holiday Season

2009-12-08T14:45:00.002-05:00

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

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

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

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

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

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

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

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

Another Honour for Melodina

2009-11-23T16:59:00.003-05:00

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

2009-11-23T16:47:00.002-05:00

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.

Spirit Award

2009-09-26T20:20:00.007-04:00

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.

Sears National Kids Cancer Ride

2009-06-21T13:07:00.010-04:00

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.

Sick Kids Hospital

2009-06-12T23:44:00.004-04:00

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.

Ambassador

2009-06-12T08:01:00.006-04:00

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."

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.

The Sears National Kids Cancer Ride

2009-06-01T09:31:00.007-04:00

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.

Wondering Why

2009-05-29T22:12:00.002-04:00

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.

Mother's Day

2009-05-10T11:29:00.003-04:00

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

2009-05-07T11:54:00.004-04:00

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

2009-05-07T11:48:00.002-04:00

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

2009-04-30T11:16:00.002-04:00

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

2009-04-10T08:32:00.004-04:00

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

2009-03-06T18:47:00.003-05:00

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

2009-03-06T18:34:00.004-05:00

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

From Alpine Ontario's Website

2009-01-27T11:01:00.001-05:00

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.

Celebration of Life

2009-01-15T19:51:00.006-05:00

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.

The Passing of a Hero

2009-01-11T08:09:00.001-05:00

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.

Christmas in the CCU - Grateful

2008-12-28T15:13:00.003-05:00

We have had better Christmases but we have a lot to be grateful for. Melodina is in the Critical Care Unit at Sick Kids. I won't go into the incredible stress that provokes. Indira and I both stay in the room overnight. Maggie, Melodina's dog needed emergency surgery Christmas Eve. I guess she was in a doggy CCU Christmas day as well. This posting is to focus on some of the positive aspects of this unfortunate situation.

Melodina was diagnosed last week with an infectious pneumonia. She went down to the ISU early Tuesday morning because she could no longer breath on her own. Early that morning she went into surgery to get a lung biopsy and a scope to look around as well as some fluid collection was done at the same time. She went back to the CCU after Surgery. We knew this surgery was imminent for a few days. Melodina asked for a particular surgeon who she knows and trusts. He came in on the first day of his vacation to perform the operation and he came back the next day to follow up.

From the moment we arrived in the CCU we got wonderful cooperation from both the anaesthetist on the surgical team and the ISU doctors. We had one of the best and most compassionate of the Oncology Haematologist Staff Doctors to back us up. We discussed every aspect of her treatment and care before it was implemented. This was done in conjunction with teams of doctors. As results of the surgery came back a plan for treatment was created. The main architect was one of our favorite Oncologist/Haematologists along with the "Guru" of Infectious Diseases and a wonderful Staff Doctor from the CCU.

Throughout the whole process we have been a part of the discussions and Melodina's care and treatment has been modified to meet her past experiences and our observations. The caring, knowledge and attention to formulating all activities specifically to Melodina's personal situation and past experiences as well as her Mother and my observations have made the whole experience better and somewhat less stressful. We are confident that this negative situation which occurred at the worst possible time - the Christmas Holidays - has been handled with the best possible care and treatment. Melodina is still on a breathing tube as I write this but it should come out today or tomorrow. Her lungs have improved somewhat. We know she is on the road to recovery.

Maggie the dog got her surgery late Christmas Eve thanks to my sister, her fiance and Melodina's Godmother. She will fully recover soon. This was another blessing. The Veterinarian and staff at the Animal Hospital spent their vacation time looking after Melodina's dog. Wonderful people.

Indira pointed out that having the best people in place at the right time was her "Christmas Miracle." We have nothing but praise for the teams of doctors and nurses, the Respiratory Therapists and the other Sick Kids staff who have helped us through this period. Angels of Compassion; every one!!!

Oh, bye the way the diagnosis of pneumonia has proved to be wrong and the doctors who know have determined that Mel's lung condition is an adverse reaction to one or more of the drugs she's on. This is good news and treatable.

Inspiration

2008-12-16T16:05:00.002-05:00

I think I have mentioned in this blog that one thing that keeps me going is that I know there are others in this life going through things that I can't even imagine. There are inspiring people everywhere. The link below is to a video that I found inspirational and I wanted to share it.

http://www.wimp.com/trueheart/

Former Patient and Her Family

2008-12-15T17:56:00.005-05:00

I have mentioned before on this blog that you meet wonderful people in the world of cancer. Today we met a wonderful family. Shannon and her family and family friends came and brought a lot of presents for each and every child in the Bone Marrow Transplant Unit at Sick Kids.

Shannon is a 17 year old post Bone Marrow Transplant patient. She left the hospital several years ago. For the past six years her family has provided gifts to help lift the spirits of the children going through what is , at best, an extremely difficult time. Shannon is so healthy that she was able to complete the Princess Margaret Hospitals ride this year. That means she rode 100 kilometers from Toronto to Niagara Falls one day and 100 kilometers back the next day, all to raise money for cancer research. A remarkable young woman and and inspiration to those who still struggle to regain their health!

It was a joy to see the smiles on the faces of the children as they received their gifts from Shannon and her family. It is a great and generous thing that they do. I have placed a photo of Shanon and Melodina on the Blog.

TV News Feature

2008-12-11T10:32:00.002-05:00

Melodina will be the focus of a Global TV News Feature this Friday evening on the six o'clock news. I hope some of you can watch it.

Its all Up and Down

2008-12-10T22:00:00.005-05:00

The post Bone Marrow Transplant roller coaster ride continues - for Melodina, for Indira and myself and for other children and other families. One boy who up until a couple of weeks ago spent much of his time screaming in pain or crying is up, walking around and playing. It is such a relief for us to see this. His parents must feel it even more. We see children in extreme pain and we see them die. We see children suffering with an amazing array of symptoms and we see them survive. We saw a boy who came to visit yesterday who had had his transplant earlier this year.He was healthy, active - wonderful! It is the most amazing experience of my life, barr none.

Melodia has been in betweeen this week. She has pain and nausea with occasional vomiting and loose stool yet she has used her strength of spirit to get up every day. Tuesday she went to the gym and amazed us by reaching a cadence of 109 revolutions per minute on the stationary bike. She's been walking every day and continues planning to be on snow skiing between Christmas and the New Years. Her courage is extraordinary.

It's also been a busy week in other ways. Many people participate in Melodina's recovery. My Aunt and Uncle have be particularly supportive. We hope to get out of the hospital to have lunch with them soon. Melodina's cousins are back from Europe. She hopes to see them and her other cousins over the holiday season. Perhaps some friends from school and others from her previous school will visit. All these things help keep her going. Her social life includes communicating by e-mail, texting and face book. It is not the same as and active social teenage experience but it all helps keep her going.

This week has been particularly busy. Melodina's sister, bother in law, niece and nephew came on Saturday. Sunday Melodina visited some of the shops at Sick Kids and did some Christmas shopping. Monday Global television called late in the day. They want to do a feature on Melodina. We arranged for a reporter and videographer to come to the hospital Tuesday. The hospital public affairs department were a bit perturbed that we didn't call them first but a kind woman helped us arrange everything in the end.

Tuesday went well. Melodina and I were interviewed. The reporter got a hold of Kelly Vanderbeek at the airport as Canada's Alpine World Cup Team was leaving for Europe. Melodina was also filmed in the gym doing her workout. After we were back in her room, Melodina had a visit from her half sister Naomi. She had been eagerly anticipating the visit but fell asleep before too long. Still it was a good day.

Yesterday some of the Toronto Maple Leafs came to visit. We were pleased to meet Curtis Joseph. Melodina has been one of hundreds of children who have benefited by his generosity to Sick Kids over the years. Jason Blake is a great inspiration. He was diagnosed with Leukemia just over a year ago and continues to play in the NHL. Emily is an artist and sculptor who has been a family friend since she was four years old. Now she lives in BC and in the process of choosing a university to go to for her PHD in Fine Arts. Emily came to visit with Melodina last evening. All in all it has been a busy week so far.

Progress

2008-12-05T13:04:00.004-05:00

Last Friday Melodina went into the gym at Sick Kids. This was her first time in a gym since July of 2007. She did 10 minutes on a bicycle and some stretching. She went back to the gym Tuesday and again yesterday. Yesterday was 15 minutes on the bike, core work on the balance ball, heel lifts, weights for triceps and biceps and She is working with a physciotherapist who is as impressed as I am at Meodina's determiation and improvement. Mel is still on anti viral drugs in the hospital but she is determined to coach skiing this winter.

Kelly Vanderbeek from Canada's National Alpine Ski Team has been encouraging Melodina right along. Kelly has convinced Marker/Volkl Ski company to work with Melodina and they are trying to put together a media event introducing Mel at the Lake Louise Women's World Cup this weekend. Doctors and Nurses have expressed amazement at Melodina's progress. I am not surprised. It is her own focus, positive attitude and will power that is the main reason she is alive. Never the less I am overjoyed watching her struggle bear fruit quickly. There is a long way to go but all the news this week is great.

For those of you reading this Blog. Thanks. I hope you find Melodina's story inspiring. I certainly do. If you are parents of a sick child stay strong. It is difficult watching your child suffer and it will change your life. You may not believe me now but some day you will see the multitude of positive things that result from it.

A Great Week Under the Circumstances

2008-11-21T17:00:00.008-05:00

A Maple leaf's hockey game at the Air Canada Centre and meeting Brian Price an Olympic Gold medalist with Canada's Men's Eights were highlights of Melodia's Week. Dispite the fact that we were in the hospital I have to say it was a good week.

At the hockey game (tickets generously donated to the Sick Kids Foundation who offered them to Melodina) we found that Melodina had to climb up four steps and then down a long staircase in order to get to our 5th row seats. The game was fun although the Leaf lost. When we were leaving Melodina and I had to climb back up the steep staircase. She wondered at how easy it was compared to the day before at her coaches training. She re-discovered that training gets easier with each workout - or at least you can do more with the same effort. Melodina has been walking around the hospital each day this week talking to patients, nurses and doctors as well as getting her exercise.

Today Brian Price came and visited. Brian is a member of Canada's Men's Eights who won gold in Bejing. Brian was also a patient at Sick Kids with Lukemia a few years ago. Inspirational eh! Like I said it was a good week despite being in the hospital.

Ski Coaching

2008-11-17T09:28:00.004-05:00

Melodina attended a coaches meeting at Mansfield, the resort she hopes to work at this winter. Everyone was wonderful and treated us well although I'm sure that many wondered what the girl with the cane and surgical mask was doing there. It was a struggle for Mel but another step along her road to health.

The battle to get up the stairs to the second floor meeting room was a momentous step forward in Melodina's war. With her cane on one side and the railing on the other she pulled herself up one step at a time. With the final two steps in front of her it was clear that she had reached her absolute limit in stair climbing ability. Mel handed me her cane and before I could take her arm she grabbed the railing with both hands and pulled and pulled until she was standing on the next step with both feet. Then her arms encircled the top post of the railing and with a mighty heave she landed, on her feet, at the top of the long staircase, a smile in her eyes. I had just witnessed a great victory and I had tears of joy and pride at my daughter's accomplishment in my eyes.

This victory is all the greater because Melodina had been un-hooked from her intravenous tubing only two hours earlier. We sat through the staff training including a video aimed at teens and young adults on safety and the value of life and limb. It is a lesson Melodina has learned well. After the mandatory part of the session there was a fire drill. We were the last ones to leave the building. I left Melodina on a bench outside and went in to gather out things. She was exhausted and we decided to leave.

I gathered up our bags and papers and headed outside only to find Melodina walking around. I was amazed. I said I'd get the car. Melodina continued to walk around. She went back into the chalet to look at an equipment display. After ordering some gloves for me and mitts for Mel we headed back outside, into the car and home. Melodina slept for a couple of hours before walking out to the car through the ice and snow. I had not been home to shovel the drive or walkway. We returned to the hospital where and a day of successes ended by being hooked back up to IV and receiving her anti viral drugs. Melodina plans on skiing within the next seven weeks!!!

The Ups and Downs

2008-11-12T20:37:00.003-05:00

The ups and downs of post Bone Marrow Transplant are many. The biggest toll comes on the emotions. Melodina has been improving in many small ways every day since we left the hospital. We are planning to attend a meeting for Ski Instructors and Coaches this Sunday at the club where we both hope to work part time this winter. That is truly something for Melodina to look forward to. An emotional high if you will.

The biggest health issues Melodina faces now are twofold. First she needs to eat. She needs to eat healthy and lots to gain weight. Up until Monday she was continuing to loose each time she was weighed. Today for the first time in a long while she weighed in at the same weight she was on Monday - no gain but no loss either. Believe me this is a victory.

The second issue is that she still has the CMV virus. Last week the lab measured the CMV at 1700, not too bad and definitely manageable. Today this week's test came back and the measurement is 119,000. That's way too much. She has been re admitted so that she can go back on the nasty drug Foscarnate. Foscarnate has bad side effects including an often rapid depletion of electrolytes that need to be replaced quickly so that organs can function properly. We are hoping that the schedule of IV drug administration can be done in such a way that she can have many hours outside the hospital each day. Hopefully she can still make the instructor/coaches meeting Sunday. I will keep you posted.

Sometimes the workings of the BMT unit at the hospital are unfathomable. Melodina has made it known that she does not wish to go back to that unit. Just today he expressed her wish to be admitted to 8A rather than 8B. Instead of talking to her about it, patients were moved from 8B to 8A freeing up rooms. She is now on 8B again. This is a huge emotional setback. I'm sure it was done for some sort of efficiency reason but nobody bothered to talk to Melodina about it. Crazy eh! The 8B medical staff just don't understand the emotional stress they place on their patients from time to time.

So the cancer/BMT roller coaster continues up and down, up and down. I'll let you know where it goes next.

Summer and Fall 2006

2008-11-10T18:56:00.006-05:00

In the school year 2005 and 2006 Melodina achieved the School's Honour Roll. By the end of the school year she was off steroids. At the time she was bloated from the medication but she had done well in school, she was training in Karate and looking forward to the next ski season. We were hopeful, even expectant. We assumed that whatever her disease was that she was recovered.

In July 2006 Melodina stayed with her sister and brother in law in Kitchener. She rode her bike every day to summer school to study grade 10 science so as to ease her course load the following winter. In addition she went to the Do Jo to train in Karate three times a week. In August she suspended her Karate training in order to go to Zermat Switzerland and train with her ski team on snow on the glacier there. It was a great summer. She was still not back to her original strength but was improving steadily.

September brought school and twice a week Karate. As well she rode her bike with me regularly. She beat me up all the climbs and there are lots of hills in our area. She also beat me in the final sprint up our street to the drive. In October it was off to Zermatt for more ski training. One week after she returned from Switzerland Melodina successfully completed her Black Belt Test in Karate. We went to clinic at the Hospital for Sick Children that week. Her blood tests came back better than normal and both the doctors and Melodina as well as Indira and myself thought she was cured.. The next clinic date was scheduled for February 12th, 2007.

We took a family vacation to India and everyone enjoyed themselves. We spent time with Indira's family and some time travelling. Harmony Mike and Hannah came with us. Melodina saw her Grandmother, her Cousins and her Aunts and Uncles. We were back in Canada for a week and Melodina was off to Mt. Ste. Anne in Quebec with her ski team. We had a great family Christmas and despite the lack of snow that winter Mel's coaches found places to train. Mel was entering the races for the Federation International du Ski (FIS) for the first time that season.

So went the last half or 2006. New Years ended on a high note. The Herman Family was happy and the future looked bright.

Nothing But Good News

2008-11-10T18:22:00.005-05:00

This weekend we went to Harmony's new house on Saturday and came back to Toronto Sunday Evening. Harmony and Mike have bought a new home but not moved in yet. The ducts have been cleaned, the walls and ceilings washed, the floors cleaned and the carpets steamed. It was probably as clean or cleaner than the Bone Marrow Transplant unit at the hospital.

We took Melodina's IV stand and tubing etc. with us so we could hook her up and hydrate her over night. To keep a wonderful story short. Melodina laughed with her sister and niece and nephew. She climbed up and down stairs for the first time since June. She walked around. She ate better than she has since the middle of January. It was a great step forward. She slept all the way back to Toronto.

This morning after unhooking her IV we went to the hospital. We attend clinic three times a week. The first great news is that for the first time since she started Chemo Therapy in October, 2007 Melodina is producing her own platelets. She did not need an expected transfusion. She now has a normal white blood cell count and acceptable haemoglobin and platelet counts. The next good news was that her blood was re tested and all her cells are donor cells meaning that not only does she not have cancer but she cannot produce cancer cells. This is the second time this test has come back 100 per cent!!!

While it will take a year or two to built her body back to where it was, Melodina is planning to coach children ski racing this winter. We ran into another Bone Marrow Transplant patient at the hospital. Anthony's story helps me believe that Melodina will coach this winter. Anthony left the hospital and returned to school this September. At first he found it difficult to climb the school stairs. One month later Antony's school held a cancer fundraiser in the name of another student. Anthony walked a full two and a half kilometers in the fundraiser! He had his teachers in tears with joy at seeing his success. I was in tears today hearing his story. Anthony, like so many cancer kids is inspiring many with his struggle and his successes. He looks healthy, he has gained weight and he is doing well in school. Way to go Anthony!!!

Sick Kids Foundation

2008-11-06T22:34:00.002-05:00

The Sick Kids Foundation is the largest provider of grants for children's health in Canada. Tonight Melodina spoke at a thank you event to recognize people who organized community events and raised over $50,000.00 for the Foundation. The following is a copy of her speech.

"The French poet Anitoli France once said, “To accomplish great things, we must not only act, but also dream, not only plan, but also believe.” Most battles need not be fought with weaponry. Just over a year ago I was diagnosed with Heptasplenic Gamma/Delta Peripheral T-cell Lymphoma with an underlying condition called Haemophagocytic (hemo-fag-o-cytic) Lymphohistiocytosis (lim-fo-his-tee-o-cy-toe-sis), more commonly known as HLH. Ten months ago I received a Bone Marrow Transplant. I have fought many battles and like many of you, I’m sure, am still fighting my war. You are here because you wish to win the war against childhood illness or perhaps something else in your hearts. Every single day here, both doctors and patients fight their battles to get to their goals of winning their wars.

"Without the outstanding people sitting in front of me today, this would not be possible. The funds that you provide the foundation allow it, and because of this we can touch so many. My father cycled in the Sears Kid’s Cancer Ride fundraiser, people we barely know, and even some people we’ve never met, through our friends, were donating funds that can make patient life better. Doctor Sheila Weitzman of Oncology and Haematology was able to diagnose my cancer, of which I am one of the first seventy five documented cases, was able to come up with the diagnosis because of the funds donated for research. We should be extremely thankful that these donations give us the funds to have some of the top researchers in the world and keep them to keep improving patient life.

"John Dewey, the philosopher said, “Every great advance in science has issued from a new audacity of imagination.” So why not imagine a better, easier way to improve patient life. All of you have been touched by Sick Kids, whether through the perspective of a patient, a parent, a friend, a family member or some other way. I have been inspired to use my upcoming eighteenth birthday as a fundraiser and continue with annual fundraisers in the following years.

"Remember, “Impossibility is nothing, but nothing is impossible.” Without your donations we would not be where we are today. From the bottom of my heart, and the hearts of many other children and their families, thank you. You truly are extraordinary individuals."

Winter & Spring 2006

2008-11-01T21:59:00.007-04:00

After Melodina was discharged on January 30th 2006 she was still very ill. Her immune system and her body's natural production of blood was being supported by the steroid prednizone. The adrenal glands of a healthy adult produce aproximately 7 mg. of steroid each day. Melodina was getting 120 mg per day at that time.

You may understand steroids to be the performance enhancing drugs banned in international sport. Prednizone is what I call a performance dehancing drug. It certainly kept Melodina alive. You can tell if people are on high doses of steroids because they bloat like balloons. Our teenage daughter looked like the Micheline Man. She retained fluid and ate constantly. Melodina enjoyed three meals per day with us and usually had two more which she prepared herself. Unending hunger is a side effect.

Within a few weeks she was back at school except for weekly visits to the hospital. By the beginning of March she was skiing again, taking time off school to train and even entered a K2 individual race that spring. She started back at Karate. Mel got a stress fracture in her foot at a Karate Otario Grand Pre event. Prednizone weakens the bone structure much like osteoporosis. Never the less Melodina won both silver and bronze medals at the tournament.

Through the winter and spring Melodina struggled hard to keep up her studies. The staff at Centre Dufferin District High School went out of their way to help her and she was on the Honor Roll that year. That time was truly memorable and it was one of many periods of Melodina's struggle when I found her truly inspirational.

Discharge!!!

2008-10-31T21:11:00.003-04:00

October 31st 2008 - Discharged!!! Melodina will sleep outside the hospital for the first time since January 30th - I can't describe the sense of relief. We've prepared for this several times before, starting last June. Each time something changed before we got out - sometimes within two days of discharge. Melodina was nervous all week. There is still a question of whether the CMV virus is being controlled or not but we are out of the hospital.

Melodina needs to go three times next week as an out patient but she's out!!! She has a long way to go to get her strength back. She has a long way to go to get her immune system fully functional but we had lots of good news this week. Her heart is functioning better than it has since February. Her hearing is improved and any hearing loss is outside of human speech range and her eyesight is the same as it was before she was diagnosed.

Today was Halloween. Sick Kids sure knows how to do Halloween. Melodina enjoyed it thoroughly. Dresses as a surgeon, complete with surgical mask, she roamed the hospital giving chocolates to doctors nurses, cleaning staff and children. She collected a lot of loot herself and she walked further than she as any day since June. All in all a Halloween to remember!

The Cancer Sphere

2008-10-28T12:20:00.011-04:00

Like the Circle of Life or the rings made by a stone thrown in the water, cancer casts a circular influence that encompasses many and diverse people. When one person has cancer it effects many, many people, some in a negative way but most in an exceptionally positive manner. The experience of being close to a cancer patient is truly remarkable.

For months even before she had been diagnosed Melodina was on a haematology/oncology ward often. We met the most inspirational children. Strong, often smiling, these kids kept us going when we didn't know what was wrong with our daughter. That was ward 8A. During the summer, fall and early winter of 2007 and 2008 Melodina was in and out of the hospital, sometimes twice a week. When we weren't admitted to hospital, we had to attend as out patients on a regular basis. It was always an inspirational wonder to see the positive attitudes of the cancer Kids. It was an unmitigated joy to say good bye to these children when they were well enough to go home. We are still able to follow the health of some of these kids.

We have been able to help the families of cancer kids and they have been able to help us. The parents, grandparents, uncles, aunts, brothers and sisters of fellow cancer patients have become close to us. Some have helped us through difficult periods while we have been able to help others. This system of mutual support and understanding is essential to our mental and emotional stability.

In some circles the word cancer is almost as anti social as a four letter word. Melodina as well as Indira and I have had friends who chose not to communicate with us since Melodina was diagnosed. There have not been many but perhaps the whole idea of cancer is so foreign and so frightening that they can't find the courage to face it. Perhaps they have known someone close to them who died of cancer and can't face even the thought of someone else dying that way. Perhaps, as I have heard, some people feel it is Karma or punishment from God. Whatever their particular reasons I think I understand that it is very, very difficult for some people to face the idea of cancer, particularly in a young person.

Most people on the other hand are supportive beyond any reasonable expectation. We have hundreds of people, many of whom we don't know praying for Melodina in churches, temples and mosques all over the world. My barber in Toronto, a Muslim, said special prayers during Ramadan for Melodina. Individuals all over the world include her in their daily prayers and meditations. All of this positive energy being focused on Melodina must be contributing to her survival.

Our neighbours have been spectacular. We moved to our present home just a few months before Melodina got sick. Our new neighbours have mowed our lawn, weeded our garden, checked on our house, removed the snow and planted flowers. They have prayed in their churches and they have called to check on us in the hospital. Some have even made special trips to Toronto to visit. We are blessed with great neighbours and we are grateful.

What cancer does to a family is a great spherical experience as well. My oldest daughter by a previous marriage has been very supportive. Naomi, who spent time at Sick Kids many years ago has special feelings and experiences to share with her half Sister. I have not lived with Naomi since she was an infant. In a way cancer has brought us together. I have had the best talks of my life with Naomi since Melodina has been sick.

Harmony, Melodina's older sister with two children comes to visit when she can and calls, usually twice a day to support her mother, her sister and me. Harmony has always been a daughter we were proud of and her support has been invaluable. We have always been close and each of us regrets that we see so little of each other. She can't come if her children even have a hint of a cold in order to protect Melodina. Mike our son in law has been great as well, driving the family into Toronto to see us and laugh and joke with his sick sister in law. Harmony may never understand fully how much her daily phone calls have meant.

My sister comes often to help us and Janet Archer comes with her when she can. Indira's sisters and brothers in England and India talk to us regularly on the phone. As I am writing this the phone rang and Indira is talking to India. Hannah, Indira's niece who is in medical school in England even took her Christmas vacation last year to spend time daily with Melodina in the hospital. We talk to Hannah's sister Emma, a nurse, regularly on the phone. Melodina's godmother has come from England to visit and she calls regularly from wherever she is in the world.

Then there are Melodina's friends and team mates who have come from near and far to visit her in the hospital. She's had classmates from her old school in Kitchener, from her new school in Shelburne. Ski team members and Karate club members have come. Young family friends and cousins visit when they can. Melodina has had young people visit her from as far away as Windsor and British Columbia. Kelly Vanderbeek from Canada's National Ski Team keeps in touch from wherever she is training or racing in the world. All contribute to her mental and emotional health.

Hospital staff also is phenomenal. Most discern the stress we must be under and the hardship Melodina is experiencing. They go out of their way to help us fathom what is happening and to help us understand the treatment options. They answer all our questions with humility and compassion and aid Melodina by empowering her to participate in her treatment planning.

Some doctors are still living in the past when doctors pretended to be gods with absolute powers. Those doctors add to the strain of both patients and their families but most Sick Kids doctors are sympathetic and merciful. This is all the more impressive when you understand that many are among the top researchers in the world in their field. The Staff Doctors are supported by large numbers of Fellows who are fully trained and working for low wages and long hours in order to practice with the best. These doctors have chosen to work with children and have respect for their patients that helps them to understand the various traumas they face.

We have dealt with numerous nurses. These people are friendly, compassionate and knowledgeable. Many nurses have helped us suggest treatment changes that have helped Melodina by easing her suffering or protecting her organs from some of the harmful effects of the drugs. Just today we started with home visiting nurses and the first one we met was knowledgeable and helpful. If I listed the names of all the nurses who have been helpful to us and deserve special thanks I couldn't finish this posting this week.

Sick Kids also has Child Life Specialists and volunteers who contribute to the well being of patients. The PSAs (cleaning staff) contribute to the health of the children when they do their jobs and keep infections at bay but many also help with their compassion and friendship.

So there are family, friends who call often, neighbours who are truly neighbourly and medical staff dedicated beyond the norm who support us on a daily basis. There are also many businesses who have been particularly kind. I hope to deal with both positive and negative business experiences in a future entry because it is very interesting. There are are, in addition to these people, many, many folks who we don't even know who are involved with Melodina and her recovery in a multitude of varying ways.

I'm certain I have failed to mention innumerable people who have helped us, encouraged us and supported us over the last three years. All deserve more credit than we can possibly extend. Thank you one and all. We are grateful. You are in our hearts and prayers. Cancer has confirmed my belief in the spirit, love and greatness that dwells within all people.

A Good Day

2008-10-24T22:12:00.003-04:00

Hamilton Actress Kathleen Robertson of 90210 fame was at Sick Children's Hospital and had a chat with Melodina as part of a segment for the hit television show Entertainment Tonight. The Gemini nominated actress was in Toronto to benefit the Sick Children's Foundation which raises money for research. Melodina was asked by the Foundation to speak to Kathleen and present her with a gift and a thank you on behalf of the Foundation.

The interview was pleasant and continued long after the camera crew had left. Kathleen was wonderful and we enjoyed seeing Melodina smiling and laughing with her. I don't know when it will be aired but presumably on Global between 7:00 and 8:00pm some day next week. After that Melodina was energized so that we had fun wheeling her around in a wheelchair to put together a Halloween costume. Back in her room she changed into costume and walked down the hallway of ward 8B dressed as a surgeon. Several nurses thought she was a doctor they hadn't seen before. A good time was had by all. As a parent I must say my feelings and tears were all joyful today.

The last dose of foscarnate was given today. Hooray!!! IV will be mostly for hydration at night until Melodina is eating enough and taking in enough fluids to avoid dehydration and a drop in electrolytes. She's getting closer to that goal every day. With the foscarnate gone Melodina can leave the hospital for hours at a time. We have to be careful not to go into environments with lots of people and therefore the potential for infections. Tomorrow a pleasant drive in the country and some home cooking are the order of the day. We've come a long way!

Back to the Beginning

2008-10-24T09:39:00.005-04:00

During the first few weeks on ward 7C in 2006 we met with teams of doctors daily. There was a paediatrics team, a haematology team and an infectious diseases team. There were other teams but these three we saw often. I remember these teams very clearly. We discussed tests Melodina was having, how they worked, what they were looking for. The doctor's were very pleased whenever a test came back negative. Then we could discuss what Melodina did not have and what the next tests would be. As time went on we became more concerned with what she did have than feeling happy about what she didn't have.

Melodina continued to eat well during that period. Because the hospital food was not great - to say the least and they often sent the wrong order I regularly went to restaurants and ordered out for all of us. It was kind of like picnicking in a hospital room. I enjoyed finding new restaurants with dishes that each of us would enjoy.

The highlights of Melodina's social calender during this period included a visit from her alpine ski racing team as well as members of the Toronto Maple Leafs and the Toronto Rapters. Each of them brought gifts so we went home with memorabilia as well as memories.

More tests. One was a bone arrow biopsy where Melodina had to be anesthetized. Doctors surgically removed a bit of bone marrow from two places, one on either side of her butt. A little painful but not too bad. The procedure took place in Cujo's Room. This was named after the former Toronto Maple Leaf's goalie Curtis Joseph who donated the money for the room and its equipment and as I understand it, continues to fund its ongoing operations.

In the end we got a diagnosis of Auto Immune Haemalitic Anaemia. Too me this was more of a descriptive than a diagnosis. The theory was and still is that she caught a virus, possibly while skiing in Chilli but also possibly at school, in a shopping centre or anywhere where you can pick up a virus. The infectious diseases doctors explained that this is only a theory but that she now had no active virus and that they could not test for most of the thousands of viruses in the world.

It is thought that her immune system fought the virus successfully. Having nothing better to do it continued its activity by beginning to attack and destroy her own blood cells. During this period Melodina had several blood transfusions. After about two weeks she was put on high doses (120 mg. per day) of a steroid called prednisone. Her blood counts started to stabilize at normal levels quickly. One doctor told me that prednisone was so powerful you could give it to a corpse and it would get up and walk. The body produces small amounts of steroid naturally but theses high doses (7mg per day might be normal) were designed to kick start her system.

We left ward 7C and Melodina was discharged from the Hospital for Sick Children on January 30th 2006. Melodina was still very weak and we had to return to Dr. Droer's Haematology Clinic once a week for monitoring but we had a sense of freedom. The next day we went to Simcoe County Restaurant in Collingwood to celebrate Melodina's birthday. My mother and our friend Janet Archer were with us. I brought a bottle of wine and we enjoyed the great local foods prepared by Simcoe County's owner, Chef Doug Porter.

I'm going to the hospital now to help Melodina prepare for an interview this afternoon with one of the actor's from the hit TV show 90210. Apparently Entertainment Tonight is doing a segment on Sick Kids and Melodina is one of the patients who has been asked to participate. I'll let you know, if I can, when it will air.

Good News Bad News

2008-10-22T22:40:00.002-04:00

Well, it's mostly good news! This past Sunday Melodina woke up at 7:00am and we left the hospital before 8:00. It was Melodina's nephew's birthday. Carter turned one year old. The plan was to visit in the morning and be back at the hospital for IV medications by one in the afternoon. We had a great time. Melodina had to walk up two flights of stairs to get into her sister's living room. It was the first time since June that she had climbed any stairs. With some help the task was accomplished.

The time with her niece Hannah, nephew Carter, her sister Harmony and brother in law Mike was wonderful. In addition my sister, Melodina's Aunt Ellen arrived. Everyone had a great time - an indispensable mental health break. It was only the third or fourth time Melodina has left Sick Kids Hospital since June. We left before the "snot nosed little kids" arrived for Carter's party. We have to be cautious to the point of paranoia to protect Melodina from any infections. Her immune system is not yet fully developed. It's not developed to the point where she can safely receive her immunizations. Her childhood immunizations were wiped out with the stem cell transplant. Her immune system is weak like a newborn baby only without the antibodies that a new born receives from it's mother. She has no spleen and a compromised liver and kidneys.

Melodina suffered with muscular pain the next day for her efforts but it was worth it. A few hours freedom from the confines of the hospital room are a tonic that money can't purchase and medicare can't provide. We are anticipating a lot more time away from Sick Kids shortly. The only reason its so difficult is that some of her medications are still intravenous. The nurses spent a couple of days adjusting her medication schedule to accommodate Sunday's festivities. We are sooo grateful!!!

The bad news is she may have chronic Graft Versus Host Disease of the skin. This should be able to be controlled but cannot be definitively diagnosed. We only know that the virtually daily rashes and accompanying insanity inducing itching is compatible with a diagnosis of Graft Versus Host Disease. It is also compatible with drug reactions and other potential causes. It seems to be under reasonable control with steroids right now. Hopefully as we slowly remove various drugs the rashes and itchiness will disappear.

More good news! Today Melodina started on the new drug to control the virus CMS. In a few days the doctors will stop the foscarnate and hopefully we will be able to leave the hospital. The new medication is given orally, not intravenously. This is an experimental treatment for post bone marrow transplant patients and is experimental for use against viruses. It is however promising and appears far less toxic that what she is on now. Keep your fingers crossed. Keep those prayers and positive thoughts coming.

Thanksgiving Weekend 2008

2008-10-16T08:28:00.006-04:00

Hello, If you live in Canada this past weekend was the time we celebrate Thanksgiving. It was a tough weekend for Melodina but we ended up with a lot to be thankful for. If you live in other parts of the world thanksgiving is a three day weekend in October that comes just after most of the crop harvesting has been finished. Originally Thanksgiving was so that we could communally show our thanks for the fruit of the earth after harvest. Now it is mainly a time for family to get together and enjoy a feast.

Melodina appears to be cancer free. She has been through a lot and is still in the hospital but the present issues are minor compared to what she's experienced. Melodina is relatively healthy. Having said that her skin is peeling or the sixth or seventh time since January. On the weekend we had planned to go to her cousins for a Thanksgiving dinner on Saturday. The parents , my cousin and her husband are both medical specialists so we felt safe. Melodina would wear a protective mask to protect her from viral or bacterial or fungal infections. She would be in a wheelchair because of weakness. We were looking forward to the mental health break that being away from the hospital together with family would bring.

Melodina had been put on a steroid called Hydracortozone. This was given after her blood pressure dropped as a result of another steroid being removed too quickly. While all steroids have negative side effects, we know from past experience that Melodina had some very uncomfortable allergic type responses to this drug. Slowly Mel's reactions were betting worse. Two or three weeks ago I had asked that she be changed to a different steroid to avoid the type of situation described below but was told that it could not be changed. Certainly a steroid is necessary because Melodina's adrenal glands have suffered from steroid reliance and her body needs time to re develop adrenal function.

By last Thursday Melodina was getting a red angry rash after every dose of the Steroid. It was so bad that she couldn't sleep because of extreme itching and depression about her condition was very evident. When the rash was at its worst she had a lot of pain in her hands and feet; her elbows were raw and painful as well. By Saturday we had cancelled our Thanksgiving diner. Saturday night was the third night she didn't sleep. Sunday Melodina left the hospital for a few hours and lay on a couch at the apartment where we stay in Toronto. She talked to her niece and nephew, her sister and brother in law and my aunt and uncle. We had a great few hours but by the time we got back to the hospital she was itching again. Saturday night was sleepless and the depression was worsening. Melodina began thinking that she might never get out of the hospital. She started believing that she was ruining her mother and father's lives. Melodina expressed thoughts that she thought she was going to die. The situation, in our opinion, was desperate.

On Monday we talked to the staff doctor on call regarding changing to dexamethazone, a different steroid. He agreed. The rash subsided as soon as the new steroid was administered. While she still appears to have drug reactions, they are comparatively mild and short lived. The doctor who told me we couldn't change the steroid expressed his displeasure but he offers no explanation why and no alternatives and Melodina is suffering less the way things are.

The Good news!!! Melodina's CMV, the virus we are so worried about tested negative for activity this week. We know it could come back but for now it is under control. Good news #2! The malaria drug we want to use to control CMV on an ongoing basis may be available to us soon. Sick Kid's Infectious Disease Doctors have a lot of paper work to fill out but hopefully that will be the final hurdle. If we get the drug, it is administered orally. As long as it works we should be able to leave the hospital. Her kidney and liver functions should slowly move towards normal and life outside Sick Kids can begin. We have a lot to be thankful for. I pray that all the readers of this blog and their families and loved ones had a loving and healthy Thanksgiving. "God Bless Us Everyone!"

Thoughts on Suffering

2008-10-12T22:07:00.007-04:00

One of the things that has kept me going while my daughter, Melodina, has been suffering is my understanding of life. Oh, yes, if you want to know, I do believe in God. This posting is not about that though. I have some fundamental understanding about life in this world and I wish to share some of that with you today. Please note that this posting has taken several trys to write. I hope it makes sense. I keep coming back to it. I feel a need to express these ideas and yet in some unknown way the concept of suffering can never be allowed to defeat us. It can - no - it must buoy us up.

It is true that each of us can look around and find someone who suffers more than we do. I have never lived in a war zone. I can only imagine the terrible fear and suffering that many people endure as the result of conflicts around the world. What I do know is that I have never witnessed anyone suffer as much as Melodina has suffered this last year or so. I have sat on temple steps with lepers and not witnesses as much suffering. I have lived years in the third world and not seen this kind of intense suffering. Doctor's and nurses tell us that of bone marrow transplant patients Melodina's is among the longest stays in hospital. At the same time we know many children have died after the same procedure. We fully expect Melodina to survive and thrive.

There was a time, a few months ago that the head Bone Marrow trans plant doctor asked us to meet with him without Melodina present. "She doesn't need to hear what I'm going to say." He took us into a small room and told us that Melodina has severe stage four Graft Versus Host Disease. He explained that if it got any worse it would be stage five and "we may not be able to save her." I explained that just the day before, for the first time in weeks, we had seen improvement in Melodina's condition. Dr Doyle insisted that he was worried and offered no words of ope and no recognition that our observations could possibly be true. Fortunately we had learned to rely on our own clinical observations to a great extent. We generally knew three days before the doctors would acknowledge it when Melodina was improving or deteriorating. Other parents we talked to had the same experience. Our faith in our own observations carried us through that dark time of our daughter's suffering.

I was talking to another parent the other day. Her daughter recently got Graft Versus Host Disease (GVHD). My response was "good." In GVHD the transplanted stem cells, bone marrow or cord blood stem cells fight the body they have been transplanted into. A transplant patient who has cells from a Donner they are not related to needs to suffer. There is a battle that should take place between the Donner cells and the body they now inhabit. This helps facilitate a strong graft and the new cells can learn through this process that they are supposed to protect, not destroy the host - the bone marrow transplant patient.

This mother and I had a long conversation about how difficult it is to watch your child suffer; how helpless and ineffective you feel watching your child and how each of us realized the necessity of some suffering. I talked about how we had been on the on marrow transplant ward for a long time. I told the worried mother that everyone that was there when we arrived had gone home months ago. We had seen many of the kids who did not suffer with GVHD need to be re admitted after they were discharged.

Bear in mind that bone marrow transplant is generally used when there is no other way to save a life. All the children are very sick an they all suffer more than we would like to see any human being suffer, let alone a child. Each and every child has their immune system compromised and becomes open to common and usually simple diseases being life threatening. We have seen a lot of suffering. When a child has an unrelated Donner graft versus host disease is a necessary addition to that suffering. Neither her mother, her sister or I was a match for Melodina's bone marrow. A total stranger who we do not know sacrificed so that she could live.

So response to the news that this girl was suffering from graft versus host disease was "good!" I expressed my concerns and wishes that the GVHD only be enough to ensure a good engraftment. We talked about how hard it is to watch your child suffer and how you feel helpless most of the time. We also talked about how important it is to be with our children, to love them, support them and our spouses emotionally and protect the children as best we can. This is our job. Each and every one of us has been told going in that our children could die. The time we spend with them in the hospital becomes more special because of that.

The older children know that they may die during the bone marrow transplant process and its after math. They can die because of a failed transplant, they can die of GVHD, they can die of infections due to a severely compromised immune system. They know they can die. The courage and dignity with which these children and teens face their ordeal is beyond most adults imagination. They are truly inspirational.

Most children on the bone marrow transplant live but still, many do not. We have met parents whose first child died a year or two ago and now they are back with the second child. I have sat talking to sisters, brothers, aunts and uncles while the child they love was dying. I have been in the room with the family watching their second child die. This is part of the bone marrow transplant experience. This is part of the support that families must give each other to get through the trauma that is bone marrow transplant. This is why I feel blessed.

Cancer introduces one to many wonderful people. Patients, friends, neighbours, doctors, acquaintances, nurses, cleaning staff and beggars; all provide inspiration and support. Cancer is truly amazing in that way. A friend of mine who died of brain cancer told me during a period of remission that nothing had been negative about his cancer experience. "James, everything has been positive - everything" he said.

The children and their families are not the only victims of trauma on ward 8B at the Hospital for Sick Children. Staff on the ward see the children under their care suffer and die on a regular basis. I cannot imagine the stress that they face. We all suffer. There is a beggar that I talk to regularly near the hospital. I can't know what he has gone through in his life.I can't know the extent of his suffering. Never the less he always has a kind word and a positive outlook. He is inspirational and his words are uplifting.

I have come to a clear understanding that like the sun and the rain suffering does not discriminate. Everyone in the world feels it bite. We all, rich or poor, happy or sad, Muslim or Christian suffer. No matter where we come from or who our parents are, no matter the colour of our skin or our cultural background we all face untold and unexpected difficulties from time to time in our lives. We are never alone in our suffering. We always have the option to see other's suffering. We can always offer some help and we can always be grateful for what we have, what we are learning and the people that are a part of our lives. We can be thankful that we are able to inspire and be inspired. We can be comforted by our own actions and the actions of others. There is truly a lot of Love in the world. These are the lessons of suffering and it is not all bad!

The First Days

2008-10-07T15:23:00.005-04:00

It is a strange new world when you enter a children's hospital with your teenager. Fortunately at Sick Kids the doctors and nurses help you a lot. We had two main doctors, a paediatrician and a haematologist/oncologist. Dr. Coffey and Dr. Droer respectively were in charge of Melodina's care. Nurses were very helpful and friendly. We actually ended up being cared for by one of the nurses from ward 7C more than two and a half years later when Melodina had to spend a few days in the ICU. That is the story for another blog posting.

Our first days were a a whirl of doctors explaining tests to us, more tests being done and the results of tests being explained. All our questions were answered patiently and accurately. I have never had much to do with the medical profession in my life. The few exceptions have included a hospital allowing my father to get bed sores so severe that he had to live in pain the rest of his life and my mother being treated like she didn't matter and no one explaining to us that she was dying. Both were heartbreaking.

At Sick Kids I learned to respect not only the doctors and nurses but the science that they operated under. The nurses were great. They were kind, cautious of anything to do with Melodina's health and they would take time to answer any questions. If they didn't know the answers to our inquiries they would call a doctor for us to talk to. The honesty was a great comfort. If the doctors did not know they told us they didn't know and then we discussed next steps. We were kept involved and nothing was decided before Melodina approved it. This was important beyond measure. Melodina was always mature for her age and I felt very strongly that she should be involved in her own health care decisions.

To explained how impressed I was let me say that from the very beginning all the doctors who came into Melodina's room spoke directly to her. They explained everything to her, they asked all questions of her and they made their treatment decisions with her input and her approval. Melodina was treated from the first with the dignity and respect that human beings should always be accorded. I began to see Sick Kids as an environment that not only treated children but respected them.

As a family we worked out a protocol for our own interaction with medical staff that suited everyone well for over two years. We would discuss things as a family. Indira and I would ask as many questions as we could think of and Melodina would listen to the questions and answers. Melodina would then ask any more questions and add her thoughts and decision to the mix. In this way she got health care that she understood and accepted. We all feel that because we had knowledge and input Melodina received better care than would otherwise be possible. She was a part of the analysis of her ongoing disease, symptoms of which seemed to change often. Because she had input and because she was respected Melodina bought into her treatment plan 100%. I will always be grateful to the medical staff at Sick Kids who treated a teenager with such dignity.

And so the days went by, tests and more tests. Discussions and more discussions. We knew they were testing for cancer; leukemia, lymphoma and others. We honestly didn't think that Melodina had cancer. We thought that she contracted a virus in Chilli while training and that because she almost never took a break she couldn't fight the virus - you know a terrible flu or something like that. We discovered that there are thousands of viruses in the world most of which cannot be identified by a hospital lab let alone treated. For most of us this doesn't matter because we successfully fight the viruses. In Melodina's case her immune system was compromised and she couldn't fight the disease, whatever it was.

We also weren't aware that viruses can cause or trigger cancer. And so the tests went on. The discussions went on and while we all felt incredible stress the doctors and nurses treated us well and included us in everything. This was health care the way health care should be.

Yesterday, Today and Tomorrow

2008-10-07T08:32:00.007-04:00

Yesterday was Indira's Birthday. We had initially been told that we could be out in five weeks, a little longer if Melodina had to deal with infections. I had anticipated two months from the date of the transplant. That meant that while Mel was hoping to be out by the end of March I was expecting the middle to the end of April. Non of us were looking forward to such a long hospital stay.

The doctor's actually scheduled Melodina to be out in June but she caught yet another infection two days before her release date. The summer was tough. We lurched from virus to bacteria and back to virus again. Mel fought disease and the nasty side effects of drugs used for her treatment. She has had several episodes of extreme pain and she spent some time in the ICU. She faced neurological problems successfully but she was afraid to leave the hospital room. Sick people go to hospitals. While she needs to be there for treatment, we all know that a hospital is full of disease.

I had been hoping that we might be out for my birthday in early September. Melodina was noticeably improving but she still faced infections and vital organs that are compromised because of the medications to treat the infections. Yesterday was Indira's birthday. She has slept at the hospital every night for more than two weeks. Melodina is miserable because she just wants to go home. I would love to stay some nights at the hospital and give Indira a break but she won't leave her baby.

Never the less there is hope. They will test Melodina's adrenal glands today. If they have some function the doctors will slowly reduce the immune suppressing steroids that Melodina is on. Cyclosporine which also suppresses the immune system but is a miracle anti rejection drug is also being reduced slowly. If both these efforts are successful Melodina can start to use her own immune system. It will not be fully functional for many months but she can begin to fight her own diseases.

The CMV virus I mentioned in earlier blogs appears to be much less active. We are still trying to get a hold of Artesunate to control the CMV. The North American distributor has denied it for use in post bone Marrow transplant patients. The Australian distributor has refused. I understand that Melodina's doctors are still waiting for a European distributor to respond. The company that manufactures Maribavir e-mailed me and they are writing their protocol for compassionate release of the drug. It will not be available until next year.

Melodina has a Thrush like substance on her tongue. Sunday night the fellow on call took a swab and we are waiting to confirm if it is a fungal infection or not. Yesterday I talked to a medical specialist from another hospital and found out that the treatment for Thrush is non toxic. I approached the fellow on call and a staff doctor from Infectious Diseases and asked them to confirm that the treatment is non toxic in post bone marrow transplant patients. They confirmed this and I requested that treatment begin right away. Melodina is being treated now instead of waiting. This is important because it could spread to the roof of her mouth and down her esophagus. If the lab confirms Thrush we continue treatment, if it is something else we discontinue with no harm done.

Still looking ahead we all see an opportunity to be released to outpatient status as early as next week. Your hopes, best wishes and prayers are always appreciated.

The First Night

2008-10-03T22:18:00.000-04:00

After arriving at Sick Kids, I made inquiries and found my way to an isolation room in the emergency department. By this time it was close to midnight. Melodina was in a bed and hooked up to intravenous antibiotics.Indira was on the floor on a small piece of foam that folded into a chair during the day. Someone had supplied her with sheets and a pillow. We waited for a while and a doctor came in, asked some questions and told us that Melodina would be going upstairs to be admitted as soon as a bed was ready. Indira was nervous and scared. After some discussion we agreed that I would go and book a nearby hotel room and come back. After Melodina was admitted I would stay with Melodina and Indira could try to get some sleep at the hotel.

I returned just in time to accompany Indira and Melodina on her rolling bed with attached IV stand on wheels to ward 7C, the general paediatrics ward. Melodina's room had her bed , a chair and bench like seat with naugahyde covered seat and cushions. There was a sink in the room and a bathroom with a sink, toilet, tub and shower. for a hospital it was luxury. Most of the rooms at Sick Kids are like this. By having private rooms you cut down on the spread of disease. No one knew what was wrong with Melodina at this stage. Also a parent can sleep in the room with the child. It is a great step forward with modern medicine.

I remember when Indira had to fight the hospital staff in Kitchener, dig in her heels and threaten to go to the media to stay with Harmony, our older daughter on the eve of her tonsillectomy. Why the hospital staff would even want a three year old to stay on their own when a parent was willing and able to help out is beyond logic.

When you arrive in the emergency room at the hospital family members are given stickers to identify them as legitimate denizens. You can then come and go without question. To this day I see that sticker on sad and worried faced and I wonder if this is their first time bringing a child to Sick Kids. It reminds me that for each and every parent in the hospital the unknown experience they are facing is likely the most frightening and stressful time of their lives. If I see that sticker on a body attached to a particularly stressed and sometime crying person I will often, with gentle caution, stop and talk. I enquire about their child and try to reassure the parent, sister, brother, grandparent, aunt or uncle that the doctor and nurses at Sick Kids are among the best in the world that that Sick Kids is "medicine the way medicine should be practiced."

Sleep is a misnomer. By 2:30 am Indira was in the hotel and I was drifting off to sleep on the bench near Melodina's bed. I had a fitted sheet over the foam cushion seat of the bench. I had two sheets - called blankets at Sick Kids - and I had a plastic coated pillow. At 3:00 I was sitting up talking to a staff doctor. I don't remember her name. She was a haematologist, a specialist in diseases of the blood.

The doctor questioned me as to Melodina's recent symptoms and activities for over two hours. I'm not sure if she believed me. We went over Mel's story in detail three times. It was after 5:00am when the haematologist left the room. I slowly drifted off to sleep and shortly after 7:00 am the day nurse was shuffling in and out of the room. By eight o'clock the public address system was active, calling nurses and doctors to attend the various rooms. You never get a good night's sleep in the hospital.

The First Evening

2008-10-02T14:51:00.000-04:00

Melodina had gone to a hospital. I had a rental car. My Mother was taken care of by a friend. Now to find Melodina and Indira. I drove to the Shelburne hospital. The door was unlocked from the parking lot. I walked timidly into dark hallways. I didn't want to shout, after all it was a hospital. There was not a scrap of sensual data to suggest that even a single human being existed except myself. Spooky like a Hollywood movie. Eerie like a wooded area during a thunder storm. I walked slowly around the main floor and my fears were confirmed. No human beings! Locked doors!

I found a dark staircase and made my way cautiously up through the gloom arriving in a pool of light on the second floor. I was in a foyer. Testing the door I found it locked. There was a woman behind a tall counter who, at first refused to look up. When she finally acknowledged that a living breathing person was standing outside the locked glass paneled door she still did not welcome me. All she did was point. I shrugged. She pointed. I scrunched my face into what I hoped looked reasonably like a question. She pointed. I looked around...She pointed. Eventually I realized that there was a numbered key pad on the wall. I looked questioningly and shrugged. She pointed.

Finally! I saw some tiny numbers above the key pad. I punched in the numbers and entered. The security should have been a clue but I was so focused on finding my family that I failed to process all the information. Up at the desk I asked for Melodina Herman and was told she was not there. I explained that the doctor at the clinic downstairs sent my daughter to hospital. "Your daughter" she asked? "Yes." "How old is she?" "15." "Oh" the woman exclaimed. She went on to suggest that Melodina was probably never there because most of there patients were elderly and in need of chronic care.

The woman at the desk refused to let me use the phone to call Headwaters Hospital in Orangeville - a local call. Not understanding why anyone would refuse to help a desperate parent in such a simple way I walked down the stairway and found a pay phone on the ground floor. It would not accept my quarter. A cleaning woman found me after I'd tried several times. When her quarter didn't work either she unlocked an office an let me phone. Melodina was at Headwaters Hospital in the emergency ward. After thanking the cleaning staff several times I went to my car and drove down highway ten to Headwaters Hospital. The drive had never seemed as long as it did in the dark that night.

When I arrived Melodina was finishing up an emergency blood transfusion and was being prepared to travel in the same ambulance she had arrived in to The Hospital for Sick Children in Toronto. The Orangeville paediatrician had repeated my daughter's blood tests. Her haemoglobin was 37 - normal is about 120 to 130. She had no countable white blood cells. The doctor told my wife that he didn't know what was wrong and he was not going to guess. We are extremely grateful for his humility. He probably saved our daughter's life.

Indira left in the ambulance and I returned home to get tooth brushes, pyjamas clean cloths etc. I then proceeded to Toronto and Sick Kids Hospital. Neither my wife or I remember how or when I returned the rental car or when I got my own car prepared but it was done. I got our belongings and myself to the emergency room and the long first night at one of the most wonderful hospitals in the world began.

More on The Present

2008-10-02T07:13:00.000-04:00

We have been unable to obtain Maribavir. Apparently you have to meet three criteria for the manufacturer to allow its use. 1. you must be in a clinical trial. 2. you must live in the continental U.S. 3. you must be an "adult". Melodina will be an"adult" in less than four months. She fails all three tests. Apparently this is the criteria set by the manufacturer. I have written to Vira Pharma Incorporated and asked for use on compassionate grounds. While the Health Minister has not responded to my e-mail - I have to assume he doesn't care - the Canadian and Ontario governments, nor the doctors at Sick Kids can get this medication.

There is another hope. Artesunate is an anti-malaria medication that has very few side effects and is being studied in Isreal for use against CMV in post bone marrow transplant patients. We will be discussing its use with Melodina's doctors today. I'll keep you posted.

The good news is that Melodina's CMV activity in her blood is markedly reduced. Her liver function indicators are unfortunately up and the available drugs cannot get rid of the virus - only try to control it. That's why we continue to look for a drug with less side effects. Until Melodina can achieve a fully functional immune system this may be an issue.

The First Hours

2008-09-29T09:29:00.000-04:00

Monday January 9th, 2006, was the first day back at school after Christmas break. Indira took Melodina to the doctor on the way to school. Mel saw Shelburne's only doctor and continued on to Centre Dufferin District High School. After classes she took the school bus home to the bottom of our street in Hornings Mills. The next day, Tuesday, I drove Melodina to school and then headed to Blue Mountain for a day of skiing.

Indira picked Melodina up after school and drove her to hospital for chest x-rays then home. In the meantime I was enjoying a day on the slopes. When I came into the chalet to change and prepare to drive home I discovered that my bag and all belongings in it were missing. I gave an official report to the resort's security and was told several people had had their possessions taken that day.

Included in the lost items were my cell phone and my car keys. I needed a ride home. I knew Indira would come and get me so I called home - collect. My mother answered the phone and told me Indira was not there. "Do you know what happened to Melodina?" she asked. I thought about it for several seconds and replied that I knew Melodina had gone for a chest x-ray that afternoon. My Mom said "Melodina is in the hospital." I didn't know whether she would be in the Selburne "hospital" where the doctor's office and the medical laboratory was or the larger Headwaters Hospital in Orangeville. When I enquire my 83 year old Mom said "Oh James, Its hard enough for me to remember that she's in the hospital. I have no idea which one."

There I was, no car keys, my daughter was in a hospital somewhere. My wife was with her. I felt helpless, alone, confused and perhaps just a little guilty that I had enjoyed my day while I could have been helping with more serious events. The first thing to do was calm down and think clearly. I was in a pickle and needed to discover solutions quickly.

It's hard to meditate when in a large public ski chalet. I bought a cup of hot chocolate, sat down and tried to think meditatively. Slowly sipping my chocolate and going over the events of the day I remembered that I had left my credit card, driver's licence and other cards in the car. At least they weren't stolen I thought hopefully. Then it came to me. I had a key to the car door. It wouldn't work in the ignition. When it was made I was warned never to use it to start the car or the computer system that keeps the vehicle going would fail. The key should be in a container magnetically held under the car in a wheel well.

Hoping with all my hope I walked out to the parking lot. Somewhat fearfully I reached under the wheel well and pulled my hand back dirty with road slime and holding a small metal box. It was corroded and filthy with dirt from the road but after several trys the lid slid open and a brand new, clean key came into view. I opened the car door and the alarm went off. Since I didn't have the proper manufacturer's key I couldn't turn the alarm off. I quickly grabbed my wallet with my cards and shut and locked the door. The alarm continued to alert anyone in the vicinity that something was not right. Trying to appear calm and innocent I sauntered slowly back toward the chalet.

Eventually, I got a taxi and drove to the local chrysler dealer. I was too late in the day to get a new key made. I rented a car with my credit card and drove home. Mom was doing well on her own. Indira had phoned Janet Archer in Kitchener, my mother said. She was on her way to care for her. Janet is a friend of many years and a wonderful soul who looked after elderly people in their homes before she retired. She helped us often those first few weeks. Without Janet we would not have been able to stay with Melodina in Toronto. She's a saint and I'm grateful for her selfless service.

Then it was onto the Shelburne Hospital. The search for Melodina and Indira began in earnest.

In the Beginning

2008-09-27T07:56:00.000-04:00

Melodina had been training in Quebec, at Mt. Ste. Anne, just before Christmas in 2005. She was upset that her coaches thought she was being lazy. She came home for Christmas and did seem tired. After Christmas she continued to train. We were aware that something was wrong. I remember saying to my wife, Indira, that our daughter needed a rest. Because ski racing was akin to breathing in importance for Melodina we knew she would not rest until April.

Slight fevers in the evenings did not deter the determined young woman from skiing the next day. Every morning Melodina would carry two pairs of skiis and her heavy ski boots to the hill and hours of intensive technical development would begin again. She was expecting to do well that year. Goals included medals in K2 individual racing. She was skiing exceptionally well. Melodina had had some success within her own team during practice races but she wanted to be ranked with the best in her age in Canada.

The first race for national points was held at Osler Bluffs Ski Club in Collingwood, Ontario the Thursday before the end of Christmas Break. Parents were quietly waiting in nervous anticipation as our teenage charges prepared, with their coahes, for the season opener. At this stage a parent becomes useless. Interference is frowned upon by both coaches and atheletes alike. All one can do is watch and hope that the daughter you love survives this one event with her lofty goals and high spirits both in tact.

This is serious stuff to many of the racers. Some parents are also rabid promoters of their own childen. I always tried to remain focused on the fact that at the end of the day it's just skiing. Never the less for Melodina it was her life and the goals for her future were and still are tied up in ski racing. I admit that I get intense, perhaps too intense, sometimes, trying to support her in reaching her goals.

Melodina has developed greatly as a person through sport - both skiing and karate, her main cross training activity. While developing as a racer the athelete needs will power and focus. Home work must be done even when training means you miss classes. You learn to do activities that you may not otherwise choose to do. Waking up at five in the morning and being on the hill ready to train by seven is not what teens normally look forward to in the morning. Running up and down hills, focused training on snow for five hours, followed by intensive exercise makes for a long day. These kids learn to do what is necessary to reach the goals they've set.

I have also noticed that the kids that work hardest at sports also do well in school. This has little to do with talent. Some are natural athletes and some are natural students. Still there seems to be a co-relationship between working hard at sports and working hard at studies. There is also the team aspect, even in the individual sports like skiing and karate. The kids learn to learn from their teammates and they learn to help each other. They learn to cheer for others on their team and be happy when they are successful.

Athletes live and train in close proximity with other kids. Sometimes these are kids they might not normally associate with. Learning to get along in work, at play and in social situations is a great bonus. Pity the coaches. They have to deal with the sport, which most are experts at, but there is also dealling with a diverse group of teens and all that goes along with that.

Back to the race. This first contest was a Giant Slalom. It consists of two runs down a prescribed course with lots of gates or turns. Giant Slalom is considered a technical event because of the number of turns in the course. On the first run Melodina skied very well. She looked magnificent. Each turn was perfect and beautiful. She literally flowed from gate to gate and she was slow.

In between runs Melodina sat with me in the chalet. This was unusual. Often she sits with her teammates. I noticed that she was shivering and asked if she was cold. The answer was no so I felt her forehead - she was burning up. Melodina insisted on racing the second run, an effort that proved even slower than the first. At home we discovered that the local doctor was away until Monday. The fever was gone so we made an appointment.

Friday and Saturday Melodina trained with her team. The coach told her she was too tired and to take Sunday off. Monday morning her mother took Melodina to the doctor.

Present Battle

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It's been a long time since Melodina first entered the hospital in Jamuary of 2005. She has recieved several different treatment protocols - most of which did not work. I will detail these struggles their failures, the inspiration, and the successes in future blogs.

In February of this year Melodina had a Bone Marrow Transplant. Today Melodina appears to be cancer free. We are battling the the life threating results of the need to keep her immune system supressed while the donor cells become used to their new host body - Melodina's body.

The drugs that are available to fight the CMV virus - a virus that has killed many bone marrow transplant patients in the past - are horrible. You could call them "righteous poison". Because of the medication necessary to save her life Melodina's kidney's and liver are being compromised - again.

I am worried that in fighting this virus Melodina will end up needing a new transplant, a liver transplant. This is not necessary. There is a new drug presently in stage three clinical trials in California. Maribavir has been shown to be very effective in preventing and treating the CMV virus in post bone marrow transplant patients. Maribavir does not have the negative side effects on the liver and kidneys that the drugs allowed by Health and Welfare Canada or the drugs allowed by the Ontario Government.

Yesterday I e-mailed the Minister of Health and Long Term Care in Ontario twice, begging him to allow this drug for Melodina on compassionate grounds. The Doctors at Sick Kids are phoning Health and Welfare Canada trying to explain the urgency for Melodina to have access to Maribavir. We are hoping and praying. We are requesting and we are begging. I will keep readers of this blog informed as to our success.

Introduction to Melodina

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Melodina is a teenage girl with dreams for her future. She works hard at the things that will help her achieve that future. Her dreams - to be successful in her education and to be a successful international ski racer - eventually an olympian.

The morning of the day she first went by ambulance from our country home to Orangeville hospital and on to Sick Children's Hospital in Toronto Melodina had written a math exam. She passed with honours. Mel had been training for ski racing only two days earlier. The doctors later admitted that they thought she should probably have died three months earlier.

Since she was of pre school age Melodina has had the natural ability to set goals and then work on the steps needed to achieve her goals. This ability to plan and her iron will to achieve has undoubtedly contributed in a huge way to keeping her alive. It is because she sees a future and works towards it that Melodina is alive today.

Melodina is still fighting. Melodina still has her dreams and Melodina has inspired people all over the world with her exceptional courage and her ability to keep her dreams alive. This blog is a testament to Melodina and it is intended to give hope and encouragement to all children and all parents who face the spector of childhood/teenage cancer.

Say Hello to Melodina

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My daughter Melodina got sick towards the end of 2005. Melodina went to Chilli in August to train for her 2006 alpine ski race season. She was 14 years old, an honours student and a brown belt in Karate. Throughtout the fall she continued to train. She visited her mother's family in India and she attended school when possible, achieving honours in her first year of high school.