My name is Brittany, and I am Leo’s mom. On Tuesday, January 14th, 2025, Leo received a diagnosis that will forever change our lives. He has a rare brain cancer called a craniopharyngioma. Leo’s tumor is large, pressing against multiple vital structures, and surrounded by critical blood vessels. This type of tumor can be cured, but it is very difficult to remove and has a high recurrence rate.

In Leo’s short 6 years, it has seemed he’s always had to work so much harder than most kids to do “normal” things. There’s always been something sending us searching for how to help him navigate his world or feel more comfortable. Each step of the way, we’d find something that made sense for his symptoms, we would do what was recommended, and we saw some improvements. We felt like we finally had it all figured out and we were on the up and up until this past year. He struggled with finding words to tell us what was wrong when he woke crying every night. He would cry often and wasn’t able to tell us what it was that made him uncomfortable or where the hurt was. Headaches became a daily misery. I noticed my kiddo who loves to go on hikes and ride his bike was struggling with getting in and out of the van and struggled to grip his pencil. He had less and less energy, more frequent headaches, and generally just didn’t feel well enough to be Leo. I got him in to his doctor, was told that he seemed fine, but she would do the list of labs I requested, and sent a referral to endocrinology when his thyroid labs came back abnormal. Some of the labs came back incomplete and we had to reorder them and resend the referral. For whatever reason, that referral didn’t include the newest labs and we continued to be declined for our referral. I found him a pediatrician determined to cover all the bases and keep moving. We saw her in December, she sent in the referral, again they didn’t see the new labs and declined to see us. We scheduled another lab draw and planned to attend the multiple specialist appointments we had lined up trying to find someone with an answer. I had big hopes that these headaches were somehow because he had adenoid hypertrophy and maybe I was crazy for thinking that there was something bigger going on. His ENT appointment felt like years to wait for, but I knew we’d get head imaging and hoped we’d hear it was something we could fix and I could get my baby back. Leo could feel like Leo again. The X-ray on 1/8 found enlargement of the pituitary region consistent with a mass lesion. We received our referral to endocrinology and neurology and an MRI with and without contrast was ordered.

On 1/13, we saw endocrinology and had all the pituitary labs ordered, attempted an MRI without sedation. Unfortunately, we were unable to proceed because even tiny wiggles can affect the images and the radiology team knew we needed quality images.

On 1/14, Leo developed a mild asthma cough related to RSV. Thankfully, his lungs were clear, afebrile, and feeling about as good as he ever feels this last year, so anesthesia agreed to proceed with an MRI under anesthesia. By that evening we had the results we feared. Mass lesion found- consistent with a craniopharyngioma.

We know he will need a brain surgery, possibly more than one, and he may also need proton radiation. This will likely be a long road ahead.

Our family will be uprooted to another state for an unknown length of time and I will be unable to work during this time.

While I want to make it clear that we don’t expect anything, we know some folks may want to lend a hand in this way and any support you have to give is wholeheartedly appreciated.

Thank you for reading and holding Leo in your heart as we navigate this, it means everything to us.