Losing the diagnosis of terminal - what a major mindshift and how it changes you for the next kid!!

Those who know us, know that our family dynamic is a little complicated and that our eldest used to be my younger foster brother. He came to me when I was pregnant with our daughter and said he was done being the little brother and wanted to be the big brother. Okay bud, that's what we'll do. We confuse everyone and he talks about his many moms (biological mom, my mom and me) and it works for us.

Adam was born with astrocytoma, a brain tumour, that was entwined in his optic nerve. He had half of the tumour removed at a few months of age, causing significant neurological impairment, had chemo and survived. We were told at the time that the other half of the tumour would remain inactive until such time as it started to regrow and we would have only a short time until we would have to say goodbye forever.

Fastforward 19 years and shortly after his birthday he and I went to a doctor's appointment at McMaster. Due to the long time that had past since his last appointment we weren't sure what would be said. We knew he hadn't had major headaches in a long time and had been pretty healthy for many years. The doctor came in with his many residents, went over Adam's background and then said "as far as I'm concerned the cancer will never reappear again. Take care" and walked out.

Adam and I sat there for a moment and then he turned to me - "what did he say?" I ran out to grab one of the team following the doc.

"Sorry, could you explain something to us?"

"I'll try"

"When he said 'as far as I'm concerned the cancer will never reappear again' - forgive me but what does that mean"

"He doesn't need to worry about the cancer anymore"

"okay, what?" (I may have not been even putting sentences together at this point - but we will pretend I was coherent)

"the cancer shouldn't come back"

"but...but what about the half of the tumour that's still there?"

"there is no tumour left"

"okay - WHAT?!" (I know I was sitting at this point and Adam was also trying to piece things together.

"The tumour is completely gone. No explanation. We can see where it was, we can see the trauma and all the damage that was caused, but it is gone and should never be back."

The softest I have ever heard his voice piped up "but what about my cancer?"

"Adam, you are cancer free!"

"cancer free?!"

"yeah"

He turned to me "are those happy tears or sad tears"

Happy babe, pure happy.

45 minute drive home with us calling family and friends on speaker cheering that he was cancer free and I was crying the whole time. I was overjoyed but it was also like the whole world had just shifted on its axis and I was now on the other side of the planet. For 19 years we had been living in the moment and focussing on here and now. The announcement of cancer free changed everything. All of a sudden he could grow up and grow old, he could outlive me. My own fallibility hit me like a wave you have no strength to fight against. How do you plan for a future now that there is a future to plan. It is a wonderful and amazing and incredibly stressful predicament to be in. I wouldn't want it any other way.

This knowledge also means I treat everything with my youngest slightly differently than I would have otherwise. I am a realist. William will never be magically "healed" and right now he is considered medically fragile and terminal - meaning his life expectancy is severely affected due to his medical conditions, but I also know now thanks to our eldest - there is no set rule or guidelines that goes along with that. So what do I do? I plan for both scenarios as much as possible, and recognize that probably something completely different than I could imagine either way will happen. We order a new bed for William and I make sure it is going to be long enough to fit his predicted over 6 feet of height, while also willingly signing the papers that when he dies it will be returned to the builder to be given to another needy child.

If he doesn't get to grow old enough for us to see him in this bed in his full height, that's okay. We have accepted that a long time ago, but I still hang on to that hope and tell the builder once again - I'm serious, you have to build it longer - he was over 3 feet on his 2nd birthday - trust me on this. Accept what is and leave the windows and doors open for what still may be.