Back to Baltimore

I can really connect with Encanto, thank the Lord, because we watch it often. Like right now. For the umpteenth time. 

Every advocate needs to educate themselves on the standard of care. Then research what people seek when that fails them. 

 At this point most people know that Albany  ran out of options for Matt. The standard of care failed him. His cancer is resistant to treatment. It’s terminal. People ask what that means. It means that treatment is not slowing the progression of the cancer. 

We’ve started planning for the future which won’t have Matt in it as long as we’d hoped. But, it’s hard not to search for a different answer. We circled back everywhere, and got the same prognosis. 

The search and my incessant phone calls finally brought us back to Baltimore. The Johns Hopkins genius. He called me at 9:00pm on a Tuesday.  The last two weeks since that call— have been full of paperwork and bloodwork. Consents, appointments and telemedicine calls. 

We successfully transferred Matt’s care to Johns Hopkins. They had a clinical trial that offers antibodies that could offer Matt some benefit. Even if it can’t extend his life. 

I’ll attend every appointment I can, whether in person or virtually. We’ll be traveling, but the goal is to keep the girls’ lives as routine as possible. We’ll keep working. We’ve agreed to give everything we have until there’s nothing left. 

My heart hurts to think of the possibility and probable reality that this doesn’t offer any benefit. He’s been off treatment so long now. The cancer is progressing, we know because no treatment yet has held it at bay. We are enjoying every day. We put the kids to bed and binge watch our favorite shows. We’re trying to throw together a few trips that Matt has on his bucket list. We love fiercely and make sure the girls know how much we love them every day. Because we don’t know how many we have left. I try to encourage him to be strong, but also to be realistic. He doesn’t have to pretend to feel good. I know it’s hard. I multiply my own pain times a billion and it possibly equates to his. 

It’s why I connect so well with Encanto. Mostly with Mirabel. We’re both waiting on a miracle; hell she sings a song about it. The unspeakable pain, she calls it out. Neither of us can move the mountains. But, here we are. 

Matt is heading to Maryland and I’ll manage his care from here and hold down the fort. These next few days will be the start to this new arrangement. Let me point out, it’s not that he can’t manage himself, but he shouldn’t have to. He’s doing enough by trying. Trying to give us another day. Another week. Another vacation. He’s not waiting on a miracle like me and Mirabel. He’s making his own miracle. He is moving the mountain. He’s outlived the statistics. And he’ll keep at it. He’s dedicating his last acts to trying to find treatment that will work for the next person in his shoes. For his girls, which will have to start screening and testing in high school to evade this terrible disease. Matt is determined to fight to find a cure, even though it won’t benefit him. He’s truly an inspiration. 

Instead of the usual thoughts and prayers, I encourage everyone to do me one better. Perform an act of kindness this week. Give someone else a small inkling of hope. You don’t know how many people around you are waiting on a miracle.