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!
Friday, October 31, 2008
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!
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