As I write this, I try to write this as a narrative, as a novel. I try to disassociate myself from the reality of the words in the story. If this was a novel it would be placed in the horror section because nothing is more scary then watching your child battle cancer. Watching your child battle death. Yes I said the word, death. Because in this story the mother is trying to come to terms with the fact that this is a possible outcome, “that we are not in the favorable outcome category”. In this story the mothers trying to understand what these words mean, tries to imagine a world unlike the one before, a life with a piece missing. It is unimaginable and dark and full of terrors. “At this time I need to talk to you about grieving “”at this point we still have the intensive Chemotherapy and that is why we do both” all these words are told but not fully heard. The mother knows it is not good when the doctor tears up and tells her husband and her “life is not fair sometimes”. The mother returns the next day to get clarification, or maybe she is looking for hope. Hope that she heard the doctor wrong, hope that there is more then this. More then just watching and waiting for death to win.
Back in the tiny exam room the mother has her list of questions, prepared this time. First questions: “when you said grieving is that what we should be preparing for? Is That where we are right now, are we preparing for worst case scenario, then what is the point?” The doctor apologizes for leaving her so hopeless and tries to explain, saying a lot of the same stuff all over again. “There are many forms of grieving, grieving about time already lost, grieving about unfavorable results, grieving is a process….” He explaines that with medullablastoma there is low risk category, where the cancer is in one spot and fully removed (not them). Then there is high risk, where it has metastasized in a couple spots in the spine as well as the back of the neck, surgury is performed and radiation to kill the rest (what they thought they were). He then explains that in this case the scans have shown numerous growth in his spine, and on arrival to Boston found in other parts of his brain as well (that were visible in the very first scans but never picked up) there are spots on the brain behind his eyes, spots round his ear, spot on areas effecting smell, in short, alot. So what are we looking at?” The mother askes “we were given 70% success rate before, what is it now?” “I do not have a number but I see a number is important to you so I will see if I can find out” the mother pushes “Like 50%? 10, 5, 2%?” Feeling herself falling and partly not wanting the answer. He can not say… The mother hesitates to ask the next question on her list, does she really want to know the answers? “So at this point is the radiation working at all. is he where he should be this far into treatment compared to other kids?” “The hope was that the scans would show the spots completely gone or significantly smaller.” The doctor tells the mother “there was a meeting where his case was reviewed and half at the table said, “good they have not grown, there is no new spots, and some have diminished a bit in size. Although the other half of the room said “yes, but they are still there.” So the mother concludes that half the room is glass half full people and the other half, glass half empty. The Dr laughs “yes you could say that”. “So what does this mean?” The mother asks, “have you seen cases like this where the chemo takes out the rest? Can you live with spots still in the body that don’t grow? Have you seen this? What will it look like, That he could just stop breathing. Will we know ahead of time? Can we do more radiation? Will we do more radiation after Chemo. When will the next scan be?” The doctor says that yes he has seen cases where the chemo gets the rest and we still have two weeks here and they are going to do extra shots of radiation here. Yes you can still live with scans that show spots if they stop growing. Yes that is one possible outcome depending where and if the cancer grows again. He can not speak on what the chemo will do because we are not there yet. “The next scan would probably be before you start Chemotherapy” the list of questions is done but a hollowness fills the answers. The mother leaves and tries to make sense of it, of the meaning of it all and can’t. A part feels more hopeful after the second talk but she wonders if she is manipulating the words she has heard. Is denyal one of the first steps of grief.
In this story the mother has started begging god to help. She remembers standing over her new borns crib every night praying that her beautiful baby boy grow up to live a LONG and happy life. That he would be funny and smart and handsome and kind. That he would have many friends and could do anything he put his mind to. Every night the same prayer to keep her baby safe and grow up to be a mighty man of God. Somewhere along the way these prayers stopped. Somewhere along the way her life got to busy for prayers. She knows she has felt god in her life answering prayers before and she calls out to god that he remembers these nights, every night so long ago, when she was a much younger mom and had a mighty faith. She remembers being told that if you pray that it has already happened it will and this is what she did EVERY night over her first born.
Mark – 23“Truly I tell you that if anyone says to this mountain, ‘Be lifted up and thrown into the sea,’ and has no doubt in his heart but believes that it will happen, it will be done for him. 24Therefore I tell you, whatever you ask in prayer, believe that you have received it, and it will be yours. “
The strong mother that only cried once every 2 weeks now breaks in moments throughout the day, now kisses the bald head of her sleeping child every night with tears dripping onto his warm skin. The mother has walked around the last week in a constant conversation with herself, with what ifs, and replaying all the possible scenario of all aspects of her life in her mind. Holding this information, unable to speak, this weight is sinking her. The writer of this story does not know whether to share this story yet, she wants to write a fairytale with a happy ending. A triumphant story where a little boy fought hard and learned to walk and talk again and kicked cancers ass all with a smile on his face And they all lived happily ever after. The writer does not want others to worry like the mother has been. she wants to hold all the pain and worry to herself, to protect the audience. To not post until there is a better outcome but then what does that really mean. So does the writer post a half told story?