Nate is a great little boy with NB. When I first met him, I was struck with his politeness, inquisitiveness and his manners. That lasted for about five minutes before he had a minor episode. Most certainly, mild mannered compared to Maya.
In the Neuroblastoma family we’re part of, each parent we meet are special. They are special because we all share similar stories and we all have same hopes, dreams and fears. The children are all very special because they are like our own; We follow their progress and their victories are our victories. Their set backs can be devastating to us as well.
Antonia Palmer, Nate’s mother wrote the following blog piece which I felt expressed the archetypal story of parents who have sick children. This particular blog is the blog that has also been brooding in me as well, but I just didn’t have the courage to post, as Antonia has done.
I am cross posting Antonia’s blog with her permission.
It was a year ago today that Nate broke his right leg for the second time and the heart of our journey began. He had broken the same leg before but this time, there wasn’t a fall or any trauma which could have caused the break. We were down the wrong diagnosis pathway for many weeks until the neuroblastoma was finally found. I often have to stop myself from wondering how different things would be if the cancer was found when he broke his leg the first time.
When Aaron and I write the updates, we try to focus on the positive and the happenings of the day as much as possible. We often imagine reading these with Nate when he is older, and telling him the stories of how brave, strong, and incredible he was through his treatment. We want him to have a record of hope and strength ? through our words and all of the messages of support that everyone leaves for us. Most of all, it is the story of one remarkable boy who continues to fight this evil disease.
What we don?t often talk about in detail is how Aaron and I are feeling. Inside the both of us there is a constant battle that some days you win and other days you lose. On one side, you have the positive — the belief that we are going to win this, beat this, and excuse me, but **** this cancer so that it never, ever, not ever returns. On the other side, you have the negative ? the darkness, the fear of the worst that could happen, the grim reality of neuroblastoma, the toll, and all that it takes and continues to take from our family. These two sides rage within us, mix everything up, and create a whole host of emotions that you have to sort through on a daily basis. All of this is exhausting, both physically and mentally.
Sadness, fear, anger and guilt are the big dark emotions. There is immense grief for what Nate must endure, and the life we have lost. There is also so much fear. We have so little control over this situation. We are very involved with Nate?s care and make sure that our understanding of protocols, drugs, and procedures is as detailed as possible. However, even with all that we know and all that we can do, we are still so helpless in this journey. We follow a pathway that many children have walked before us. We learn far too often about children who have relapsed and those who are no longer fighting their battle. This is terrifying. We have to make life-changing decisions on a regular basis ? decisions that are often based on incomplete information and imperfect circumstances. We have no idea how the decisions we make today will impact Nate in the short and long-term.
I think that the biggest emotion for me is anger. I have never taken anything in my life for granted and have always felt very blessed, especially when Aaron and I fell in love and made two beautiful boys. I didn?t need this experience to open my eyes or help me see what is important in life. I knew that already. It wasn?t easy finding my true love and when I did, I knew how lucky I was. My dreams became a full reality when Nate and Alex were born. Some days I walk into SickKids Hospital and I just hate it. I hate everything about it. I hate the colour of the walls, the sound of my shoes as I walk across the floor, the chipped paint, the fluorescent lights, and the smell of medical supplies. Everything about it makes me so mad. I don?t want this. I don?t want this in my life. This was not supposed to be my life.
I don?t think that I am a bad person but now I constantly question what I did in my life to make the universe hate me so much. I know that this is not rational thinking but this is what happens when everything gets so mixed up inside. You can?t help but think about every minor transgression in life and wonder if that was the moment when the universe decided you crossed the line. I get so angry because we spend so much time apart as a family, and that Alex has lost out in many ways because Nate requires so much care. However, the real heat of my anger is from seeing all that Nate has been through. The pain he endures, the countless tests and pokes, the long list of complications he has fought through, the fact that he can?t walk and doesn?t eat, and that this cancer picked him. I am angry about all of the time that we have had to spend away from family and friends, the fact that Nate has missed out on socializing with children his own age, and that his future will be marked by this disease forever. He will probably never have a family, his growth will be significantly impacted, there is a chance that a secondary cancer will occur sometime in his life, and there are a whole host of other maddening long-term effects and austere statistics.
But, there is also the good. Along this journey, some things have become clearer and we have had some truly beautiful moments that will stay with us forever. We have seen bonds of love and friendship fuse even tighter and we have been constantly overwhelmed by the support and caring that so many people have shown us. If this did have to happen to Nate, we are only a short drive away from the best childrens hospital in Canada ? we don?t have to fly or drive hours and hours to get treatment. We are seeing great promise with immunotherapy, the first ever for neuroblastoma, and Nate is getting that treatment now. We will take every percentage point that we can.
I hold on to a number of different visions. I think about the cancer being sourced out, found, marked, and obliterated. I imagine huge explosions that completely destroy the cancer cells until nothing recognizable remains. I think about Nate?s body and skeleton with bright shiny, white, and strong bones surrounded by veins of bright red blood and organs working in well-timed synchronization. I think about Nate?s strength ? the special kiss he gave me when he was so sick during his stem cell transplant, the sound of his voice when he tells me that he loves me, his bed dancing, and they way that he snuggles with his little brother. I also think about the future quite a bit. I imagine Nate and Alex as older boys, walking off to school together with me following behind trying to look inconspicuous, going camping together and taking the boys in a canoe for the first time, watching them graduate through school, play sports, and learn how to drive. I think about the day that we drop Nate off for his first day of university (or college or whatever), his first love, his true love, and everything else in between. I tell him constantly that he is going to grow up to be a beautiful man and that he will live a long and healthy life.
Right now, we have a very different life than anything we could have ever imagined. Once Nate beats this cancer, we will start a new and changed life. One where we cherish all of the ?normal? moments, make extraordinary memories, spend more time with family and friends, and try to get back all of the time that we have lost in hospitals. I have no doubt that there are going to be different challenges that will face but that is okay. We can handle that. We will also learn to let go of the anger and the guilt. But, we will probably never completely loose the fear. Every muscle ache, sneeze, and cough Nate has will be a concern. Anything and everything will evoke a fear in us, a fear that the cancer has returned. It will be a fear that we will have to live with for the rest of our lives. But, we will manage that too and balance it with the desire to live and enjoy life.
In one of the bedtime songs that I sing to Nate, there is a part that goes like this: ?you have suffered enough, at war with yourself, its time that you won?. That is a very important part of the song for me and is later followed by the phrase, ?you?ve made it?. Nathaniel Lloyd Palmer Hudson is going to make it. We are all going to make it.