A few weeks after high school graduation, Frankie started experiencing severe headaches projectile vomiting and was bumping into the walls.  We were down in Denver from Carbondale and I took him to Presbyterian St. Luke’s emergency room (it was near and where he was born) where they thought he was having a potential Covid stroke and got him into a CT scan right away. They discovered a solid mass in his brain and did a series of MRIs.  He was on high dose steroids and pain meds to relieve the pressure and pain.  The next morning he was transferred to Children’s Hospital.

On July, 20 he underwent a craniotomy and they were successful at removing all of the tumor.  He was diagnosed with a rare Anaplastic Ependymoma grade 3.  200 people a year are diagnosed with this from 0 to 90 years old and only about 11 with his specific subtype and location (cranial vs spinal. There is no cure, there are really no consistent standard of care treatments.  He underwent 33 rounds of proton therapy at the mayo clinic in Phoenix which thankfully the insurance covered.

Thank goodness for Covid because he was able to attend his first semester at CU Boulder from Phoenix online and all of his friends were online, so he did not “miss out“ on any college experience due to his illness.  In February 2021 he went into a dorm even though they were still online.  His recovery was a bit slow, he experienced a lot of fatigue but he focused on school and did well the first year. He didn’t really have enough energy to work last summer he was still recovering and spent the summer with family and just resting and trying to enjoy a little bit of the summer he lost the previous year.

He entered his sophomore year and moved in with friends in a house and was thriving and we felt he was almost his “old self” emotionally and physically.   In fact he had gone to France to a conference with his student cohort from CU early this past May and he felt like he was finally “normal.”  Unfortunately, he experienced a recurrence that we found on his monitoring MRI on June 16, 2022.   We decided to take him to Duke University, as it’s one of the leading brain cancer centers for adults and, at 20 years old now, he is more of an adult even although he has a pediatric type of disease.  They offer Neuro LITT surgery there, which is less invasive and a more novel approach for tumor removal.

We were not able to get the LITT surgery as the neurosurgeon specialist was going to be out of town until mid July.  Because his tumor was very small when it was discovered and, we did not know how fast it was growing we decided to do a traditional craniotomy again to remove the tumor.He did well in surgery and he’s recovering well physically but emotionally he’s struggling.  He’s back in Boulder at his house with roommates because that’s where he wants to be—he wants to try to feel “normal.”  He’s very depressed he can’t work.  He does not have the energy or the stamina to work during school, we want him to focus on self-care and, with the full load he has right now, he has little time for more.  He is anxious to graduate college because that’s one of his “bucket list” items.

Thank you to Team Nathaniel for helping for his expenses.