When you greet your child for the first time, whether through adoption or through childbirth, the love that is created is stricken like a match.
The flame of love that every parent knows well holds hope, visions, and dreams for the future of your child. At that moment is nearly impossible to think of nothing but a hopeful future.
Think about it? Whether enduring the grueling process of adoption or going through the conception process; the idea of bringing a child into your home is an absolute miracle.
You can never conceive that your child is going to be seriously ill, have special needs, or even worse a terminal diagnosis.
It hits you like a lead brick.
Most pediatric cancer diagnosis happen between 3-7 years old.
At that time, non-medical families are focused on teaching their child to walk, run, read, socialize, running to play dates, and birthday parties and putting up with tantrums about who gets what toy and not wanting to go to seep. Life is challenging for any parent and children at that stage.
And then you start to see your child suffer.
Strange unexplainable things begin to happen. Strange changes in sleep patterns and eating patterns. Behaviors that don't make sense. Like napping more often than usual. Complaining of being tired. Avoiding certain foods or drinks. And then more obvious things like weight loss, pain, and changes in balance.
Most parents have an internal siren going off. But they want to ignore it. "Oh, it’s probably just this or its probably just that". Yet the behaviors become more consistent and you can’t ignore it any more.
When Jordan was at his sickest before diagnosis; we had thought maybe he just has constipation. Or maybe his strange complaint of his bladder pain was a urinary tract infection Or maybe his protruding abdomen was some type dairy allergy.
We would bring him into the Doctor and they would have this puzzling look in their face but send us away with words of reassurance. "Lots of kids go through this and it will probably be just a phase." And, "Do you really want a referral? They will put you through a million tests at Children's Hospital and they probably won't be necessary"
But my wife knew all along that something more was going on.
I was at work on the weekend the weekend of July 16, 2011; our second car was in the repair shop so my wife and Jordan came to pick me up at work. He was in the back seat and did not look right. I took one look at him and said to my wife we are taking him to urgent care there is something going on with him. Again, "probably an infection". Thinking the best and avoiding the worst.
We drove to Seattle Children's Urgent Care in Bellevue, Washington. I will never forget the smell of the parking garage, pushing the elevator button, the eerie feeling in my stomach, and that something was going on bigger than myself.
We waited for what seemed like an eternity and looking back I wish I wasn't in such a rush. As, the moments that followed was the end of the life I knew for 40+ years. It has never been the same since.
The Doctor saw us back and Jordan finally showed us what really was going on.
A real precise physical exam was done on his abdomen.
She had the look of horror on her face. She turned to us and said; "this is not good".
I said desperately: ' I said am a doctor too, and I think it’s just constipation or something like a UTI, can’t you just run those tests and give him some antibiotics so we can go home?!'
She looked at us and said;" you need to go immediately to the emergency department at Seattle Children's Hospital I think your child has a mass in his abdomen that is possibly cancer."
The world stopped.
We had to think about our son and how to not appear afraid. He was only 3 1/2 years old and he was seeing this very intense conversation. We had to get in the car at what was now 7:30 pm. and drive ourself to the emergency room.
The drive over the 520 bridge was surreal. Clear water and beautiful sun glistening on Lake Washington. Yet inside our car felt like sheer terror. As parents, you do your best to not let your child feel this. So, we gently explained to him; that we were going to another Doctor to get you some help and that we were going to be by his side.
A million thoughts running through your head.
Then comes the wait. Another 2 hours in E.R. with smiling, healthy physicians coming and acting kind and caring. Yet, all you want is answers and you want to be told that everything is going to be all right and then you will be going home.
We have to get back to work on Monday and he has to get back to preschool. This is really an inconvenience, right?!
They finally start the evaluation and imaging. Taking your child back into an MRI and CT scan for the first time is absolutely devastating. It is the first of many "scanxiety" experiences. The child's fears come first though and the parent has to find a way to cope while calming their child.
And then you wait; for them to tell you your child's future and the state of the life as you know it.
Hours go by, and the doctors finally come back to your room to discuss the scans.
"We believe your son has cancer; we think he has Neuroblastoma and we will need to do a biopsy tomorrow to confirm it".
Pure shock and devastation; while keeping one eye on your child to make sure his mental state is ok. Seeing the look on your loving wife's face, the beautiful mother of this child; is like a dagger to the heart.
Then denial...
'This cant be right; its going to be benign, right' I ask.
"The biopsy will confirm it and there is always a chance its benign, but it doesn't look like it " the Doctor held firmly.
More waiting.
We are moved to the room on the oncology wing.
All around the oncology floor are kids with riding on bikes. These adorable children with no hair on their heads smiling from ear to ear while their parents follow them.
This is our new family. Parents with kids with cancer.
Some have the look of pride of someone "winning the battle".
While others are worn, fearful, and tethered trying to keep the flame alive.
The flame.
Always trying to keep it burning for the child's sake if not for yours.
While we wait; we joke with Jordan and try to create a home of normalcy in the hospital room.
There is a kid across the room; also new to this world. The parents look at us with a knowingly look in their eyes.
More waiting. More turmoil.
We start to tell friends and family and the energy of the responses are overwhelming and distracting us from what we are facing.
The familiar people and relationships that we have nurtured in our lives are ready to stand with us in time of greatest needs.
The morning comes and they bring us to the radiology wing for biopsy of the mass. We wheel Jordan back again and he is given anesthesia for the first time of what must have been hundreds of procedures and sessions where he is put under.
Handing your son over to the hands of a surgeon is tremendously scary yet spiritual at the same time. It is the ultimate letting go and so frightening.
And finally, they come out. The oncologist that tells you the final diagnosis you will never forget their face or name.... Dr. Hawkins. A charming man who had a wonderful bedside manner who had the clarity and empathy to tell us the worst news of our life.
"I am sorry but the cells extracted appear to be Neuroblastoma; your sone has Stage IV high risk neuroblastoma and kids with this type of cancer and prognosis have between 30-50% chance of surviving and living for 5 years. He is recovering for anesthesia and you can go see him in just a moment"
You never forget how devasting that message feels no matter how many years pass.
And at the same time all you want to do is go to your child and hold him and love him and cherish his every breath.
This is the cancer diagnosis.
The aftermath that follows is the onset of the cancer journey that has twists and turns, ups, and downs and can be devasting, inspiring, uplifting, defeating, draining, and life affirming. It is, in the words of Jon Kabat-Zinn.. the “whole catastrophe”.
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Adam Rinde is the president of the non-profit Blankets For Cancer www.blanketsforcancer.org His son , Jordan, passed from Stage IV High risk Neuroblastoma at the age of nearly 6 in 2014. In September of 2016, Adam, his wife Amy and close family members started Blankets For Cancer to address the socioeconomic needs of pediatric cancer patients and their families.