So last night was rough.
After a two-hour meeting with our oncologist, Dr. Wood — Woody (talk about a sign: Dr. Wood and my husband, Woody :)) — and I were completely overwhelmed and had no idea where to turn. We were basically given two options for Ronan’s treatment and had only heard the opinion of our oncologist here (who is amazing) and his team.
Around 9:30 p.m., we called in our own special team to consult.
My twins’ godmother, Karen Kotalik (whom I would trust with my life), her brilliant husband E.J., my dearest friend and Ronan’s godmother, Trish, her amazing boyfriend Max, and last but not least, my other BFF, Lauren — via telephone — who has been researching morning, noon, and night for me.
We sat in the cafeteria for hours and hashed out numbers, results, treatments, side effects, doctors, hospitals, resources… everything.
I felt lost, scared, and exhausted. It may have also had a little something to do with the fact that I’ve had about five hours of sleep in the past few days.
Our doctor basically wanted an answer within 24 hours.
I freaked.
Twenty-four hours to decide the fate of my precious little guy. How in the world did they expect us to make such a huge decision so quickly? It felt unfair. Cruel.
But unfortunately, time is not on our side. Decisions have to be made sooner rather than later.
We compiled a list of the people we needed to contact the next day — the best of the best in neuroblastoma, hospitals, families who have been through this. We spent all of today making phone calls and getting Ronan’s information to all the right people.
I was amazed at the positive responses we received from doctors all over who were willing to take time to speak with us.
After a morning of researching, I went home and met up with Woody, and we were both in agreement about what to do. The way the pieces fell together felt almost like a little bit of magic — art, science, and love.
I’m not going to go into details about which road we are taking. That would take too long, and the specifics are very difficult to explain as a mom.
But I can tell you this: after meeting with Dr. Wood again tonight, he agreed that we have chosen the right path.
Last night, Woody straight-up asked him, “If this were your son, is this the treatment you would choose?”
He wouldn’t give us an answer.
Tonight, with the different direction we’ve chosen, Woody asked him the same question.
His response was, “Absolutely.”
I know in my mind, body, and soul that this is the right path for us. This is our best shot.
Dr. Wood also said something tonight that I will never forget. Out of all the patients he has seen over the years, he has never seen anyone with Ronan’s disease act the way Ronan is acting. Basically, Ronan should be acting very, very sick.
This child is doing the complete opposite.
If it weren’t for his black eye, the incision across his head, and the Broviac catheter in his chest, you would never know he is fighting for his life.
That just proves what I’ve known all along about my beautiful little boy.
He is a fighter.
He is strong.
He is unlike anyone on this earth.
Lauren told me tonight that as soon as she walked into our hospital room, she physically felt something protecting us.
I couldn’t agree more.
It’s almost like Ronan has his own private force field surrounding him at all times.
It is a beautiful thing to see and feel.
There is more to this than just this awful disease.
Something bigger is out there.
And there is a reason this is happening to us.
Leave a Reply to DanielleCancel reply