thetravelingwithers.com

Thanks for sticking with us. Sometimes we want to talk about this, sometimes we don’t. Sometimes we just want to hug each other, sometimes we go to bed early and cry ourselves to sleep. This is the reality of the situation we find ourselves in. I pray that each of you doesn’t have to navigate a cancer diagnosis. This is some hard stuff, y’all. Nothing in our lives so far as been more life or death than this. Your support means more than you know. It is so comforting to receive your texts, calls, messages, cards, thoughts, and prayers. We are not alone. And we get confirmation of that every day. Love you guys.

Here’s a picture of the three older kids bombarding Ross with love. We love their love. And we love his love.

Here’s the next update on where we’re at with Ross’ treatment, and this time, it’s a bit of a mixed bag. After so much effort and back-and-forth, we managed to get Ross into the clinical trial in Pennsylvania. But, as you probably guessed, the roadblocks didn’t stop there. The doctor working with the trial doesn’t accept Ross’ insurance—Blue Cross Blue Shield of Louisiana. His insurance is only good for the state of Louisiana in-network. And since there’s no care for his condition in our home state, everything out of state is considered out-of-network. The insurance only works for providers in Louisiana, so we’re stuck asking for a GAP exception.

If you’re not familiar, a GAP exception would allow Ross to be billed at in-network rates for out-of-network care, but that process takes time. And the doctor has to file it. Our existing doctor in Houston has been absolutely amazing and has filed the GAP exception for us and we are so grateful. The problem with getting us into this trial? The doctor’s billing office in Philly flat out told us, “We don’t file GAP exceptions because it takes too long to get paid.” You can imagine how crushing that was to hear. Oof. And I get it. They’re a business. They have rules and processes that they need to follow. It’s just tough. Gut-wrenching. Heart-dropping. Oof.

We reached out to a friend who connected us to someone funding the study! Woah, what a small world. The funder has taken an interest in Ross’ case. He even helped us contact the head of the billing department at the doctor’s office, but we hit a wall. The trial coordinator, the doctor’s liaison—everyone we talked to—had their hands tied. The only option left on the table was for us to pay $3,000 upfront just to see the doctor, then try to negotiate with insurance afterward. But from our experience, that usually ends in heartbreak and a lot of stress. It very rarely results in a reimbursement for services already rendered.

After all this, Ross and I talked about what he wants to do, and he’s made the decision to stick with the original plan. We’ll keep the appointment for plaque brachy therapy, using two plaques if we can’t get into the trial. I fully support him—his body, his choice. But we’re still holding out hope for something better.

Here’s why we’re working so hard to get Ross into the trial: If Ross can get into this clinical trial and the medication works, it could shrink the tumor and potentially reduce the need for two plaques. Less radiation means less damage to his retina, which might even give him a chance to retain more sight in his eye—something that feels like a miracle at this point. That’s the light we’re chasing.

We’ve been part of a Facebook support group for Uveal Melanoma and Ocular Cancer, and the results we’ve seen from others in the trial are nothing short of amazing. One participant’s tumor shrank by 2mm in just four weeks! The possibility of avoiding two plaques, saving his retina, and reducing the radiation damage—it’s all keeping us hopeful. Science and God really do work wonders.

For now, we’re preparing for both paths, and we’ll continue to push for what’s best for Ross. Thank you all for walking alongside us through this crazy, emotional rollercoaster. Your prayers, support, and love lift us up more than you know.

With faith and gratitude. Love you guys,
Megann