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.
Friday, November 21, 2008
Monday, November 17, 2008
Ski Coaching
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 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!!!
Wednesday, November 12, 2008
The Ups and Downs
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.
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.
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.
Nothing But Good News
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!!!
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!!!
Thursday, November 6, 2008
Sick Kids Foundation
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."
"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."
Saturday, November 1, 2008
Winter & Spring 2006
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.
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.
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