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!
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