In 2020, Liam began showing signs of extreme thirst. The thirst became so loud in his head that he ate less than he should. Most of that year we watched his BMI drop while his thirst and urination increased. We went to doctor appointments and were told it was all in his head or that he was just a picky eater.

After several visits and feeling pretty hopeless, my sister-in-law — a nurse practitioner — told me to go into the doctor’s office and demand referrals to GI and endocrinology. I had never dealt with endocrinology and didn’t even know who to see, but I truly believe her suggestion saved his life. He was wasting away and was close to a coma because his medical issue wasn’t being treated.

In September, we went to the endocrinologist and by February 2021 he was diagnosed with diabetes insipidus. Diabetes insipidus is a rare disorder—unrelated to blood sugar—where the body cannot balance fluid levels, causing extreme thirst and the production of massive amounts of very dilute urine. It happens because the brain doesn't produce enough of a specific water-balancing hormone (vasopressin). Issue #1 with the pituitary gland.

This was a pretty simple fix with the medication called Desmopressin that he takes morning and evening.

The remainder of 2021-mid 2023 went pretty smoothly. Midway through 2023, Steven and I started to notice that Liam was not growing. At all. We mentioned it to his endocrinologist who kept an eye on it for a while and then in April 2024 he was diagnosed with Growth Deceleration. Issue #2 with the pituitary gland. This issue could be helped with growth hormone therapy.

2024-2025 was spent tweaking growth hormone injection dosage along with his endocrinologist retiring. He saw an interim endocrinologist and a new-to-Erlanger Endocrinologist during that time.

Mid-2025, we noticed some weight gain although diet and lifestyle had not changed. Weight gain was followed by fatigue and eventually headaches. During a routine follow up from results of bloodwork, he was diagnosed with deficiency of adrenal hormone- hypothyroidism. Pituitary gland issue #3.

At the same appointment, his cortisol level was a little wonky, so the endocrinologist requested an ATCH stimulation test to check his cortisol.

After this appointment, I just had an extreme feeling in my gut, which was the Lord, to seek a second opinion. Too many things were going on with this pituitary gland to not look into it a little bit more. Maybe there was nothing more to find out, and maybe we were doing all we could, but I wanted to make certain.

After discussing this with Steven and him being in full agreement, I reached out to Vanderbilt and East Tennessee Children’s Hospital. ETCH could not schedule us for approximately nine months. (Again, the Lord, because we were most definitely supposed to be at Vanderbilt). I called and left a message with Vanderbilt, who then returned my call promptly and had a scheduled within a week or so.

Our very first appointment with Vanderbilt endocrinology, the doctor spent at least an hour in the room with us, reviewing his medical journey from the very beginning to date. She said she couldn’t explain why an MRI had not been completed again since his initial one in 2021, but she felt as though it was time for another one (praise the Lord she did). We went back a couple weeks later, where they accommodated us and scheduled both the brain MRI with and without contrast and the ACTH simulation test on the same day.

Again, the Lord, providing ahead of time, Steven went with us to this appointment.

We were about 45 minutes into our three hour trip home that day when we received a call from the endocrinologist to let us know that there was a visible mass on his MRI. This was on Friday, April 17th.