“Do you know the boy with the crooked smile?”
“Who lives on Cancer lane? “
“Yes I know the boy with the crooked smile”
“He now lives on Recovery Road”
Recovery Road is endless for some. There are types of cancer where you finish your treatment and you can close the door and move on with life.
There are types of cancer where you will have to review every 6 months….12 months….5 years ….no matter how far apart those reviews are the door is never completely shut. You can move on but you won’t avoid the reminder that it could come back.
Having a child who has been through cancer treatment for a rare occurrence in the head known as “Juvenile Xanthogranuloma Not Otherwise Specified” has been completely life changing. For better and for worse.
What does “Not Otherwise Specified” mean? Well you can get medical and correct me but in our case it means “We don’t know what the heck this is but its damn close to a JXG and its killing him so we need to diagnose and treat before he dies”
This “thing” (that’s what we like to call it) was rapidly growing around my sons head pre-birth and was discovered at 3 months old. Chemotherapy and Surgery kept it under control until he grew and his immune system has helped battled it down to a manageable size while it sits now a “non active” 2.5 x 2.1cm lump inside his head.
This “thing” will probably always be there. The good thing is despite doctors making it clear in the beginning his chances were slim he somehow baffled us all. He is a bit of a legend isn’t he?
Recovery Road for us has not been about healing wounds or mending body parts. It’s been almost 7 years since the last round of Chemo was administered and even longer since an overnight stay in the ward for cancer related illness.
Ryan is now 9 and the last 7 years has been spent being my sons Advocate for all things health and school related. You see when you “get better” your sent on your way to move on with life. There is no diagnosis label for the affects of Chemotherapy. Despite all of the research and scientific data available here in Australia we seem to be well behind on support systems for post cancer related cognitive, memory and other functions that are damaged.
We have been riding it out on an Autism diagnosis for years because virtually the symptoms and struggles are very close in comparison. However recently I have grown this fire inside me that wanted to fight for my son to be correctly documented. To be acknowledged for what he went through, You would be amazed at how difficult that is but were slowly making progress. My son officially has an Acquired Brain Injury.
Recovery Road is now the journey towards teen years with the aim to have the right support systems and surrounding ourselves with people who understand Ryan. During cancer children still experience their darkest hours. Children still feel death creeping up to their door. Children have to process thoughts like “What is happening to me”. As adults we can understand and try to reason with our cancer.
The psychological effects alone without any brain trauma or infantile treatment are devastating and some will recover sooner than others.
There is something unique about the children I meet that have or have been through cancer. Almost like they have been on this earth before. I have heard my son referred to before as “The Boy With The Crooked Smile” when people don’t know his name. The permanent crooked smile is Facial Palsy from the Monster inside of his head along with a lightening bolt on the side of his head – these are battle scars.
Sounds like the title of some 1920’s literature doesn’t it.
The boy with the crooked smile
Life gave him an inch and he took a mile
They said you’ll be dead but death he defied
So lives the tale of the boy with the crooked Smile
I try to find the blessings in Ryan’s story. It has given me a different perspective about life which you can read about in my writings. I would say its changed me as a person. I am not thankful for Juvenile Xanthogranuloma itself but I have to try and find reason. Maybe Ryan’s future destiny would not be fulfilled without cancer treatment.
I beg you to share this in the hopes that it finds the right people. The people who may be going through the same thing. All cancer is important but some cancers are so rare and we need to reach out because although life goes on its still a tough road for some.
Yours Truly ,