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.
Showing posts with label hope. Show all posts
Showing posts with label hope. Show all posts
Friday, December 5, 2008
Friday, November 21, 2008
A Great Week Under the Circumstances
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.
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.
Monday, November 10, 2008
Summer and Fall 2006
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.
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.
Tuesday, October 7, 2008
Yesterday, Today and Tomorrow
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 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.
Subscribe to:
Posts (Atom)