from there to here:

In late December 2024, Ben noticed a tightness in his chest, which he chalked it up to a pulled muscle from swinging the girls around over their winter break. Over the course of a few weeks the chest tightness evolved into a constant heaviness and was accompanied by a cough and exertional dyspnea. Given the progression of his symptoms, we sent him in to be seen by his primary care doctor who performed a basic physical evaluation, a lab workup, and a chest x-ray to look for possible infectious etiologies. The physical examination was negative for any observable symptoms, the CBC and metabolic panels came back within normal limits, and the x-ray showed fibronodular changes of the lung apices, which the doctor speculated was residual from a recent upper respiratory infection. With no obvious direction gleaned from the results, we proceeded with watchful waiting.  

Roughly 10 days after his initial visit, he returned to see his primary care doctor with worsening chest tightness, a refractory cough that had not responded to any first-line treatments, and an enlarged and fixed supraclavicular lymph node. The lymph node, in conjunction with the fibronodular changes from his prior x-ray, prompted his PCP to order an ultrasound (US) and head/neck CT (which our insurance immediately denied). With the prior authorization for the ultrasound only, we proceeded and subsequent results showed concerning characteristics consistent with malignant neoplastic or lympo-proliferative disorder. This prompted his PCP to re-order a head and neck CT which was, again, denied by our insurance. 

After several weeks of back and forth with Aetna and their third party prior authorization company EviCore, we found ourselves on the receiving end of denial after denial for medically necessary and warranted care. During all of this, Ben's symptoms continued to progress quickly and per the recommendation of his PCP and Aetna representatives, he went to the local ER in Western North Carolina, on 24 FEB 2025, where they immediately ordered lab work as well as a head and neck CT. 

Results of the CT scans showed a pulmonary mass and diffuse lymphadenopathy across several lymph regions concerning for neoplastic process. At this point, it was clear we needed to get to a place where Ben could receive quality cancer care and we could be in close proximity to family and friends for support. Queue an immediate referral to Huntsman Cancer Institute (HCI) in Salt Lake City. In the midst of preparing for a sudden relocation across country, his care team ordered to PET scan to expedite his onboarding process once we arrived at HCI. Result of the pet scan were positive for active uptake in both the primary pulmonary mass as well as in many nodes across multiple node regions, confirming the suspicion of a metastatic neoplastic process. 

Fast forward a few weeks (late March 2025) and a handful of very productive and informative appointments with HCI and Ben received an official diagnosis of stage IV non-small cell adenocarcinoma of the lungs. Since then, things have progressed fairly quickly and it's been a whirlwind of testing, procedures, hospitalizations, and infusions; all of which, is entirely too extensive to give a thorough update. Suffice to say, things have not gone as anticipated and Ben has been thrown a fair share of curveballs and has navigated each with an optimism and hope that is unmatched. 

My hope moving forward, is to use this blog as a platform through which I can share updates with friends and family as well as an open journal of our experiences as we traverse this new territory. If you're reading this, I'm so glad you're here and I'm genuinely sorry to share this news. There are so many friends and extended family members with whom we, so desperately, wanted to relay this news face-to-face. Please know you're are incredibly important to us and we love you more than we can say. 

All our love, 

Meg + Ben