Liam’s Story

Site created on July 21, 2021

Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.

Newest Update

Journal entry by Matthew Baier

From Cerrisa:

 

It's weird to hear the expert on the other end of the phone say they're going to start injecting your husband's cancerous tumors with Modified Herpes Virus, but as if this morning, that's where we're at.

While we're still limping emotionally from the reality of Liam's first line of treatment only being partially successful, learning about his new clinical trial this morning gives us something to focus on and hope for. To start, the study will require 16 visits to the University of Iowa Oncology Center, every two weeks.

What's going to happen:
Is a combination of injecting (reachable) tumors with Modified Herpes Virus (RP1), which could not only begin to destroy cancer cells, but could then have the same impact in tumors too remote to inject (don't ask me how that works, I'm just beginning to deep dive into these magnificent satellite capabilities) alongside a new Immunotherapy drug called Opdivo.  Apparently, the RP1 virus should stay isolated to the tumor cells, so it's not as though Liam is going to actually be infected with the Herpes virus as we know/think of it.

I think the hope is that since Liam did have an initial response to the previous Immunotherapy drug (Keytruda), we may see similar or better results to this one. If there are improvements, injections will stop (or pause), & Opdivo infusions will only need to happen once monthly.

Before the injections and infusions can begin, there'll be inevitable intake gauntlet this week. 

What this looks like:
Is a solid 1-2 days in Iowa City for scans (CT & MRI), an EKG, labs, a biopsy, and a discussion with his former oncologist. Then, if all is a go, we'll meet with the "principal investigator" Dr. Milhem to get the party started and he'll be our lifeline moving forward. God. I hope he smells good and wears incredible shoes.

For this means for our new day-to-day:
Yes, this totally ratchets up the pressure on our "normal".  As it was, Liam was receiving injections/having regular appointments every three weeks in Iowa City in addition to frequent visits to the hospital here in Decorah. That already felt rigorous during a time when life is so full. BUT. We have a shot at this and that's what matters. Liam may begin to experience flu-like responses to the combination of therapies. 

We're going to hold tight, ask for help as we're able, and lean into each other. 

In the meantime, we want to send a big thanks for everyone helping us to engage with joy and keep our sense of humor, not to mention the casseroles, for helping with Flynn, fixing things for us, etc. It really is simultaneously such an anchor & a buoy.

We'll keep you posted.

In the meantime, Liam is fully prepared for your Herpes jokes. Trust me. It won't give him a complex.
____________________________________________________

Primary methods of help to the family: (Cerrisa.Snethen@gmail.com)

  • Airbnb gift cards are still helpful toward medical travel or escapes if/when we can take them.
  • Gift cards toward fresh fruits & vegetables can be applied to Oneota Community Food Co-op account #5618 by calling 563.382.4666.
  • Kwik Trip gas cards are a huge help given that the bulk of Liam's medical appointments are a 2.5 hour drive one-way.
  • Walmart gift cards. Always helpful for diapers, miscellaneous groceries & household needs.
  • Amazon gift cards can be very helpful for supplements, medical supplies, & everything else on earth.

Our new mailing address:

104 Monroe Street

Decorah, IA 52101

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