Without a Crystal Ball

Our Journey through Chronic Illness

 

 

We live in a gray area of unknown prognosis. It’s a troubling place to live for my husband and me. When you don’t know what is going to happen to your child’s health, it’s hard to make plans for the future. It is hard to know what is going to happen at any given moment, and it’s impossible to know what might pop up on a medical test or image. Often it means we are given more diagnosis and more questions than answers. While we try to find a way to live with it – it’s harder for our friends and family to really comprehend.

Prognosis unknown – means exactly how it sounds. It means there is no primary diagnosis known as to why the conditions and symptoms are happening. It means there is no idea what could come up along the way, and it means there is no model of other patients in what they have experienced. For us it means we are the first for many doctors. His doctors call him a “case of a career” or a “medical zebra”. He’s the kind of patient many residents dream about because they are the first to manage the care of the child. The doctors can also be the first to make discoveries on how to potentially help other patients in the future. It means there is no blue print for treatment. It also means that often times you leave appointments feeling more confused than when you arrived. There are appointments you dread because you know the image will absolutely uncover another issue in your child’s body, and there will be no known reason for why it happened.

We have so many questions about his body, and probably as many as the questions of our friends. Why did his heart start going bad? Why is his brain developing incorrectly? Why is his motor processing causing him delays in all areas? How could one child have so many secondary diagnosis but no primary diagnosis? Why was it that he was able to do something for a period and then the skill was lost? It’s hard to know any of it. Truthfully, I can’t answer any of the questions because I don’t even know. I don’t know if he will be able to swallow, chew, use his tongue correctly, if he will ever burp on his own, if his heart valves will get worse, if his brain will stop growing incorrectly, if his ventricles will eventually start leaking, and I definitely don’t know if his life expectancy is normal.

Life expectancy is probably the hardest for people to wrap their heads around. It is hard for my husband and I to comprehend as well. The answer is – We don’t know. The prognosis is unknown. That means he could live a long time or his life could be cut short. We know he has a heart that needs multiple surgeries and two other life threatening conditions. Any of the three illnesses could prevent him from going to adulthood. Doctors have told us they don’t even know. We all just have HOPE. We hope that he will beat the odds. We hope that treatment will improve to manage the diseases he has, he hope he continues to respond to treatment, we hope that there are cures for some of the diseases, we hope the treatments given do not do damage to his body, we hope that treatment doesn’t diminish his quality life, we hope the choices we make to treat him are the right choices, and we pray that one day doctors will know a prognosis for our son.

What does it mean for us to live in a world where there is no prognosis? It means we live day to day. Planning for college isn’t a factor in our home. It’s not even on the radar. We use our resources and energy to improve every single day for our child. We work diligently with doctors, nurses and therapists to ensure that he gets all the resources he needs to thrive. It means I wake up every day fighting a battle that I hate fighting, but I will never give up. The beauty is that I get to see life in a way many parents don’t see it. I don’t take for granted birthdays, holidays, or passing seasons. Every single year that passes and he is still here – we have won. Every day I love him like crazy, tell him I love him a million times, and I spend my hours making him smile and laugh. He gets to do amazingly fun things that many well children don’t get to experience. We have non-profits that are dedicated to brightening his day. He gets gifts from all over the world from people that have been touched by his story. In many ways – even though his prognosis is unknown – life is beautiful.

Our unknown prognosis has given us a platform to teach others about the conditions he faces. We are able to meet people from all over the world, have amazing specialists treat him, and are interviewed by publications and research organizations. It’s not a life we envisioned, but we make the best of it. The best thing I can tell anyone that is in this world is to take it a day at a time. Don’t get caught up in what tomorrow will bring. Don’t get swallowed by the fear of the unknown. Nothing in life is known. Any of us can leave the planet at any time. Embrace the “prognosis unknown” and live life to the fullest. If you are a friend of family member of someone dealing with this prognosis, be gentle and kind. Try not to bombard the families with questions. Most questions will go unanswered. Try to just love and accept it for what it is – PROGNOSIS UNKNOWN.

 

 

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3 thoughts on “When Your Child’s Prognosis is Unknown

  1. bethanyk says:

    wow this helped me so so much. I’m just going to start saying that when people ask about my daughter…we don’t know…it is easier than trying, being questioned, having them then question more. It is exhausting and I am exhausted enough. I don’t know what is wrong. I don’t know when she will get better. And if people just loved and loved and loved some more it would be so much easier than “How’s riley” . so thank you

    Liked by 1 person

  2. ModerateMuse says:

    We are going through exactly the same thing. We don’t know. It’s frustrating, complicated, and overwhelming. People don’t like hearing “I don’t know.”

    Liked by 1 person

  3. Margie Bullock says:

    My daughter is 27 years old and still to this day she remains prognosis unknown. We have had her to several different specialists, now she is followed by John Hopkins and Kennedy Kreiger in Baltimore. We have learned a long time ago we may never know and have just focused on her medical needs and care.

    Liked by 1 person

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