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!"
Thursday, October 16, 2008
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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