Cancer creates a path of least resistance because it comes from seemingly nowhere, knocks us down and then bets we won’t get up. The getting up is hard, it might take a few tries but we rise, albeit on unsteady feet, and we turn to face our adversary. The problem is that when our enemies surprise us, in their sneaky and evil ways, it’s hard to feel like we really are in control, we are just trying to stay upright and meet cancer blow by blow in hopes that we will eventually be victorious. But there is a real uncertainty there, we are fighting wild eyed and desperate. And it’s hard, real hard, to ever gain the upper hand. So our best bet is to follow the “plan”…..
The halls of Children’s Hospital are filled with teams of incredible doctors and their fellows, residents, nurses and other specialists. They all consult in the morning, amongst themselves first, and then they all disperse with their rolling computers to do “rounds” on each patient…if the parent wants to join to get all the latest updates, labs etc. on their kid they are welcome and then a handful of the team enter the room to do the daily exam. The long and short of it is the team has a “plan” and us parents are welcome to ask questions and contribute thoughts but mostly we just nod and go along with the “plan” because we’re still trying to figure out how in the hell we got attacked in the first place. We figure the “plan” is the best option in this fight – in many ways it’s the path of least resistance.
On Monday, Will and I came back to our familiar digs on the 7th floor to start his next round of chemotherapy which was part of the ‘plan”. He had been able to come home for a few days prior but unfortunately spent his time with us feeling pretty bad, a residual effect of the medicine he took for the RSV that had landed him in the PICU. He was depleted, exhausted and emotionally worn out.
He got settled back in and we had a “mini” round to talk about the “plan” which sounded rough by any standard (they wanted to start a feeding tube as he’s down to 100 lbs) and then start the hard-core IV chemo again that afternoon. I knew he was feeling low and drained and as I sat with him I noticed tears rolling from the corners of his eyes. As I leaned in to comfort him, he whispered he just didn’t know if he could go through another round….my heart dropped but truly he was just speaking out loud what I had been thinking . He knew damn well that to even get through another round of this aggressive chemo he needed to be ALL IN and, at that point, he just wasn’t.
So, we have pressed pause and are working to nourish our boy and make him comfortable. We are not making any big decisions but just holding space for him because we know that whatever he decides to do needs to come from the right place. We know that taking a step away from the “plan” and being in the moment is the best thing to do. We are having raw and painful conversations. Will is asking questions that a child should never ever have to ask and hearing the answers that are given with compassion but gut wrenching honesty because our team at Children’s respects and loves Will for the incredibly brave, mature and thoughtful person he is. We have shed tears upon tears upon tears and we have come together as a family in a way that is beautiful and precious beyond measure.
And while we allow our mighty Will time to rest, God is working. Will is being made stronger, he is taking in more food and water and allowing his body to heal from his last round of chemo. We are being sent the absolute best specialist to help us wade through these very deep waters. God is sending the nurses who know how to hold Will’s hand and let him speak his truth without shying away. God is giving us the strength to step OFF the path of least resistance and to listen to and honor our son who is his own person, on his own journey and who deserves to make the final decision on what he wants to do next.
Please continue to pray that Will is able to receive and feel every ounce of love that is pouring toward him. Please pray for guidance and peace. Please pray for Stathi and Jack who are the most amazing brothers in the world and two of the people Will treasures most. Please know that this is still just a pause for now but that our warrior is showing us what courage really looks like in every moment he is here no matter what he decides. Hold your people tight. Tell them you love them. Be in the moment, it IS the only way to truly live and remind yourself that being at rest is a gift and to take it when it comes. Much love to you all xoxo