A half told story…

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? 

3 Replies to “A half told story…”

  1. I believe in my heart and in my reasoning brain that this is Not half the story. That this is only 1/4 of the story. That there will be lots of zigs and zags, ups and downs. It may feel like you’ve been through sooo much (you have) that your half way through and looking towards the other half with your ending…good or bad? But I implore you its too soon in this story. I know your tired, frustrated and your love is flowing from your body like a bleeding cut but later in life, when you can look back on this time with 20/20 vision you will realize that you were trying prematurely to fore tell the future. Also, it’s impossible, as a mother you are taking on the responsibility of his life…but it’s simply not up to you. This is between Aiden, cancer, and the treatments success/failure. Your level of love unfortunately does not play in the equation. If it did you would have already healed him, or it would never have happened. It’s obvious he is truly loved by mom, dad, brothers, family and friends. You simply have no control. Also cancer does not care its sole purpose is to grow. Treatments are good, some are better, the proton therapy is the better but there is no cure. Dr.s are humans, please percentages should not raise or lessen your hopes, they are only numbers and sometimes of unrelatable situations. So that leaves Aiden. Strangely enough, he will be the one to lead you through this, follow him. Like him your helpless so let go…… if he’s happy be happy, be happy if he smiles, revelle in its warmth and smile back. Take each day as it comes, minute by minute. Take his cues, he’ll let you know how things are going. His abilities have been lessened from the surgery, but you are able to still communicate with him. Talk to him (I know you are) but more importantly listen and follow. This will be a long drawn out story …Aiden will tell you when its nearing it’s conclusion. This is not a book, it’s life, Aiden’s life. I have tried as a mother to put myself in your situation, and I can’t, my eyes well up,my heart gets full and my throat chokes and strangles and I have to stop. And that’s just THINKING about Aiden’s cancer. BUT if it was Beau, I know it would both be our first time, and as in many things in Beaus’ life, I have looked him in the eyes and tried to feel his feelings, read his unspoken thoughts and listened to his cues and if he had or ever has cancer, I will follow him, I’ll still fight for the best care but on a daily basis I’ll follow. As a nurse I have watched recovery, set backs, success and death. It has always amazed me at all the different ways these different situations are dealt with by patients’ and their family, some good, some bad. But in most cases, suprises straight out of the blue are rare, usually good or bad all the signs are there in neon lights when the time is right. And until then there is no foresight just guessing and really, what good is that??? XO

  2. Stephanie, when Aiden was a baby you and Josh gave me a picture of the three of you which I have framed and have on my sideboard. I took the picture to church and was prayed for on Aiden’s behalf. Since, then I have copied the prayer that was prayed….that the cancer would ‘break up’ and that Aiden would be restored to full health. I also pray for strength for your whole family as you face this time that is trying beyond belief. God, bless Aiden, his extended family and friends and everyone who has a hand in his care.

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