thetravelingwithers.com

When we last shared our story, we were feeling a little defeated after hitting a wall with the Darovasertib trial in Philadelphia. Sometimes you need to sit in that defeat, let yourself feel all the emotions, and then decide it’s time to fight again.

That’s exactly what we did.

On the morning of September 28th, something shifted. I woke up with a mission: I was going to get Ross into that clinical trial. No more waiting. No more “maybes.” I was ready to do whatever it took.

Before the sun was even up, I sat down at my computer, armed with hope and a hefty dose of determination and caffeine , and emailed every single contact (all 43 of them!) I could find related to the Darovasertib trial. I basically poured my heart out:

“Hello All! 

My husband, Ross Wither, is currently under the care of Dr. Amy Schefler in Houston for uveal melanoma. His tumor is localized to my right eye measuring 18.5mm x 6.1mm. He has no other health conditions. He has not had any other areas of spread so far. This has been confirmed with an MRI and CT scan. Dr. Schefler has been wonderful and we are very grateful for her.

We recently discovered the clinical trial for Darovasertib, and we think it would be the best treatment option for his situation. We are encouraged by the research and have been in touch with the clinical trial organizer at Jefferson. He thought my husband would be an excellent candidate for the study and put us in touch with the medical team. Unfortunately, we were unable to make it work with our insurance (Blue Cross Blue Shield of Louisiana). We would like to request a transfer of care to participate in the study for Darovasertib. I have attached the scans of Ross’ eye. He has had 1 mm of growth (17.5 mm to 18.5 mm) in 4 weeks.

Unfortunately, there are no options locally in Louisiana for care, so we have to go out of state for care. We would need to work with a team willing to submit a Gap-in-Network Exception with Blue Cross Blue Shield Louisiana. Is this a possibility with your associated practices?

He is currently scheduled for a plaque measurement appointment with Dr. Schefler on 10/8 and the first of two plaques goes in on 10/22, having been rescheduled from the original date of 9/17. We went from one plaque initially to now two because of the size of the tumor. Shrinking it seems like a real possibility with Darovasertib. We would very much like Ross to try Darovasertib and see if it works to reduce the size of his tumor. Is there any way that we might be able to get in to see someone at the doctor’s office and the trial in the next week? We are flexible and can schedule appointments as early as Monday 9/30.

Thank you so much for your help!

Megann Wither“

After sending that email, I sat there in the quiet, just waiting and praying. And I’ll be honest—I was ready to start calling people one by one on my lunch break if no one replied by noon. I wasn’t going to stop until someone listened.

But then, like a little miracle, replies started rolling in. Arizona. New York. California, Minnesota. All across the country, doctors and clinical trial teams responded with kindness, some even offering advice and directing us toward the right places. Turns out I had emailed contacts for the wrong clinical trial. The one associated with metastatic disease. And let me tell you, the responses were so gracious—wishing us luck and hoping we’d stay out of their “mets” trial. That made me smile. They cared.

After several polite “nos” (insurance is a beast), we finally got a YES from a place I hadn’t even dared to dream about: The Mayo Clinic. They’ve scheduled Ross for a consultation and screening next week. We are beyond hopeful and grateful. The Mayo Clinic is world-renowned for a reason, and now we’re part of that journey. It’s a mix of relief, excitement, and gratitude that I can barely put into words.

This whole experience reminds me of that James 2:26: “Faith without works is dead.” I’ve always believed that while we can pray and trust in God’s plan, we also have to do the work. We can’t sit back and hope for things to fall into place—we have to get up, push forward, and fight for what we need. That’s what I did for Ross, and now we’ve got a real plan in motion with one of the best medical teams in the country.

This is a picture from when the family went to a very good friend’s birthday party. That was a fun night and one for the record books!

We’ll be meeting Dr. Lauren Dalvin at Mayo next week. She trained at Willis Eye Center in Pennsylvania, which is one of the best places for eye care, and knowing Ross is in her hands is such a comfort. I feel like we can finally breathe a little easier.

So, once again, the Traveling Withers are packing up and hitting the dusty trail. It’s not exactly a trip we dreamed of, but we are so grateful for the love and support you all have shown us through this journey. Your prayers, your messages, and your kindness have meant the world to us.

And if you’d like to help us as we continue down this path, you can support us through our GoFundMe page. Thank you for walking with us through every twist and turn.

We’ll keep you posted on what comes next. Stay tuned. And keep those prayers coming—they’re working. Love you all.