it’s worth a try.

Four walls, two chairs and a couch… “please have a seat wherever you’re comfortable.” We aren’t comfortable. The first time we sat across from someone with an MD at the end of their name to just “have a family meeting”. First time parents, mid twenties, with three 25 week babies down the hall. We want to be upfront with you… we don’t think he will make it through the night… we have one more thing to offer.. a drug, a medicine, a steroid, whatever you want to call it – a chance. This drug has side effects- this is what it can help with and these are the possible side effects. Your choice is this, give Max this drug or “make Max comfortable.” We gave him the drug…. “It’s worth a try”.

Four walls, a conference table, 8 chairs…. “please sit wherever you’d like.” We don’t want to sit here. The second time we sat across from another MD to “have a family meeting.” We were called in to stay the night because, “we don’t know if Max will make it.” We can do a second round of the drug, he responded well before, but remember.. there are side effects. Give him it again, or wait and see to make him comfortable. Let’s try again.. “It’s worth a try.”

Four walls, 3 chairs. “Max has a rare heart condition, the mortality rate is 83%.” A new MD, telling us the statistics. We’ve seen this 3 times here. The outlook isn’t good, but we will do whatever we can. A cath procedure is an option, we don’t know what we’ll find, we don’t know what will help and he will need to be put on a medication to help prevent the disease from coming back. It’s a chemotherapy drug, it has its side effects. It’s the only thing that can help at this point… would you like to do it? Please…. “It’s worth a try.”

Four walls, a room full of babies, MD’s and nurses everywhere. “He’s rapidly declining, we can’t get his sats up and there is no where else for us to go.” ECMO. It’s a hail mary and a temporary option, something to give us time to figure out what we can do to help him. It comes with a TON of risks, side effects, medications. The alternative – a 5% chance at life. The choice is yours, we don’t know if there will be anything we can do beyond this, but if we choose to do it we have time to look at see. “It’s worth a try, do it.”

Two wings, small cabin, two pilots. A flight 1000 miles away. A new hospital, a new team of MD’s, one world renowned surgeon. Max can go into a heart surgery to repair the diseased veins in his heart. It’s not a fix all, it doesn’t end his battle, but it gives him a fresh start. He will come out with more things to go through and a number of medications to take going forward. As always, they all can have their side effects, but they can buy him his life until the disease stops. We can do this. “It’s worth a try.”

When we started our journey, a NP said to us the first time we ever questioned the decision we made, “It’s worth a try” and for some reason it stuck. Every moment, every decision, every action, every choice. It was worth the try. Max’s life was worth it. We find ourselves living by this motto now and if they would have called the day he passed and said, this is what is happening and this is what we can do I would have said “yes, it’s worth a try.” Even here, with Max’s foundation, we will ask ourselves, should we do this? Should we commit to $100,000? Should we be a resource or advocate for other PVS kids? It’s definitely worth the try.

Today I got a text from Hayes’ physical therapist asking if we can do something different and so instinctively, without even questioning her thought, I responded “sounds good, its worth a try!” I think back to these situations and don’t find any regret in making the choice to give the, sometimes risky, option a try. Sometimes those moments or decisions are the ones that open doors to things and people that will change you for the long run. So the next time you come to a crossroads and you don’t know whether your decision should be to stick with what you know, or give the alternative a try. I hope you can think of Max and think of all of the good, better, or new things could come out of your decision to just give whatever it is, a try.