Someone mentioned to me that their grandchild had been diagnosed with osteo sacoma. They were obviously upset and the depth of their confusion and pain and fear were very apparent. It is a very scary thing. Hearing those words sticks with you for the rest of your life. It is a "Where were you when Kennedy was Shot" question. (Yes, I am that old.) The child will be in treatment for 9 months. The family has arranged to be home for a year because they are teachers and their fellow teachers have given them sick time from a pool. There is a sister.
The grandmother is trying to figure out what to do. How could this happen? Does it matter if the child is 8? This is so rare how can they cure it? Do the doctors know what they are doing?
As I sit here this morning watching the birds gather sustenance from the bird feeder buffet, I just sigh. Katie Elliot will be buried in a week. I met her family when they were starting treatment. Three years later, treatment is over. She too had Osteo. She did not make it out alive.
When you first hear those words, the thing that gives you comfort is the "plan" or the "road map". There it is, the PLAN. Yes this is a lousy diagnosis but we have a PLAN. Something to look at, something to put on a calendar. An end point is sitting there for all to see. You can plan your live around the PLAN.
I still have some of the calendars and all the Road Maps. I look a them when I am sorting through things. I still look and wonder at the amount of hope and optimism contained on those pages. The PLAN.
What you soon realize is that the PLAN is kind of a guide. You know where you want to go and you head West. Sort of like being on the top of the Continental Divide and heading to the ocean. There are million ways to get there and the ocean is a vast. But with enough effort and enough perseverance and some luck, you do arrive.
The journey is not easy. The path is not straight. There are losses of untold magnitude. Some are secret losses you don't discover for many many years. It is a journey some have to make more than once. But it is doable.
As the family begins on their journey, my first words of advice would be to hang on to all the hope they can. They will need it as they make their journey and have to face the reality of the bumps on they way. Second bit, be ready for a wild ride. Third, remember you are not alone.
Yesterday someone shared a notice of a newly diagnosed family. First grader, at Children's, Family well Supported. What to do.... Child had a long chronic cold, will be a Seattle Children's for a while. The family has a meal service set up, they are adjusting.....
Oh, my it brings it all back all so so fast.
For a few moments the original diagnosis passes by. Confusion, upset, concern, panic, fear, despair, and then more confusion. How did I handle it? What was I needing in those early months? How did we survive? What would have made it better?
I know it took me a long time to figure out how to receive from other's without guilt. It took a long time to put into words what I needed other's to do. Everyone wants to help. Everyone wants to something. No one wants to do something wrong. Do we call? Do we visit? If we visit do we stay an hour? Do we take food? Should we send balloon, cookies, flowers, a new puppy?
The fact is they have just had some of the worst news of their life, are in total shock and are just trying to get from one set of rounds to another. They are learning about counts, are ecstatic that their child is not throwing up and that the hair is still their. They are grasping on to any little bit of hope available. They are telling their friends "it is the good kind of childhood cancer".
I can remember when we would go for a walk on the floor or go to clinic and Mary-Elizabeth would say, "They are new". I would agree and we would continue. We each would enter that corner of our brains that those first memories reside.
9-11 is seared into the memory of many. Some of us still remember when John Kennedy died. Some when John Lennon was shot. Some when they got a call from a friend staying at their house, asking that a call be returned to Children's.
We all have these dates and times. Some universal, some personal.
Hoping for memories of good things.
