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.
Sunday, December 28, 2008
Tuesday, December 16, 2008
Inspiration
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/
http://www.wimp.com/trueheart/
Monday, December 15, 2008
Former Patient and Her Family
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.
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.
Thursday, December 11, 2008
TV News Feature
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.
Wednesday, December 10, 2008
Its all Up and Down
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.
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.
Friday, December 5, 2008
Progress
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.
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.
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 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.
Friday, October 31, 2008
Discharge!!!
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!
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!
Tuesday, October 28, 2008
The Cancer Sphere
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.
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.
Friday, October 24, 2008
A Good Day
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!
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
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.
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.
Wednesday, October 22, 2008
Good News Bad News
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.
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.
Thursday, October 16, 2008
Thanksgiving Weekend 2008
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!"
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!"
Sunday, October 12, 2008
Thoughts on Suffering
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!
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!
Tuesday, October 7, 2008
The First Days
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.
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
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.
Friday, October 3, 2008
The First Night
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.
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.
Thursday, October 2, 2008
The First Evening
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.
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
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.
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.
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