thetravelingwithers.com

Hey everyone, Thank you so much for following Ross’ Journey. We’re so grateful for all the support and love.

I wanted to give you an update on Ross and where we are in this whirlwind. So, the plan we originally had for Ross’ treatment may be changing, and it’s been a bit overwhelming. We just found out that because of the size of his tumor, and it’s rapid growth, he’s going to need two plaques instead of one. What does that mean? Well, it’s not just double the radiation. We’re now looking at four separate rounds of general anesthesia, two times quarantined away from everyone, and twice needing to pack up our lives so family can step in and care for the kids while we head out of state. And that’s just for the surgery – not for the appointments to measure the tumor and be fitted for the plaque. It feels like a lot. It is a lot.

But there are a few bright sides in all of this. Through this incredible connection we’ve found through a melanoma group on Facebook, we’ve received so much support and insight into this diagnosis. There are people who we are talking with who are 12 year survivors and more! Additionally, we’ve come across some really exciting new options, and we’re feeling more hopeful than we’ve been in a while. There’s a drug called Darovasertib that’s being tested in a clinical trial out of Philadelphia, and the goal is to shrink the tumor through a simple twice-a-day pill. If it works, it could potentially reduce the amount of radiation Ross would need and make this process a whole lot easier on everyone.

“Well, why don’t you just take his eye out?” We have thought about it. There is another option called enucleation, which is the process of removing Ross’ eye. We’re not there yet. Ross wants to try to keep his eye. His body, his choice! In theory, this pill will reduce the size of Ross’ tumor, good ole Lenny, and, if we need to use radiation to treat it, we will need to use less radiation and experience less side effects.

Today, we have a phone consultation with someone from the clinical trial, and I’ll be honest—we’re pretty hopeful. If we can get Ross in to the office on Monday, we can have some more information before going to have his tumor remeasured in a few weeks to be fitted for the first plaque – again. Having more options makes us feel like we’re not just reacting but actually moving forward with a plan that could make a huge difference.

As always, we can’t thank you enough for the love, support, and prayers. You all mean so much to us. I’ll keep you posted as we learn more, but for now, please continue sending those positive vibes our way. We’re feeling them!

With love and a hopeful heart,
Megann