10/06/2026
Childhood Cancer Awareness
Alright y'all I have been sooo busy, like I can't get my stuff together since working full time and personal stuff nonstop going on! Some of you are like ya Ive been waiting on a reply. Im so sorry Im just getting too old to do it all like I used to lol. BUT if you know me you know Ive always loved kids, my soft spot is kids and wanting them all to have the best! I loved my awareness sessions I used to do years ago and I am so glad to be doing them again!! Even though it's not September anymore I said I don't care bring that sweet boy over because childhood cancer isn't just one month and it's over! He is just too sweet and so cute!! I will always help you all share your stories and bring awareness!!! Here is this handsome mans story!!! Sending him and his family so many prayers!!
After months of trying to figure out why Harper had no energy and was sleeping up to 18 hours a day he was diagnosed with a craniopharyngioma on February 13, 2025. A craniopharyngioma is a rare type of brain tumor derived from pituitary gland embryonic tissue that occurs most commonly in children. It is not a malignant type of tumor but destroys the endocrine system and surrounding areas if left untreated. This tumor, even with surgeries and radiation, has an extremely high recurrence rate. By the time his tumor was found it was 2.8 x 2.1 x 2.1 cm. It had taken over his entire pituitary gland and displaced his optic chiasm and optic tracts. Harper was placed on thyroid and cortisol medications since he no longer produced enough to sustain him and her doctors decided to just monitor the tumor.
After 6 months of monitoring at a local hospital, we sought a second opinion at Children’s Hospital of Philadelphia. After meeting Harper’s medical team that is made up of a neurosurgeon, neuro-oncologist, neuro-opthamologist, and an endocrinologist the decision was made that Harper would be admitted for emergency surgery. At this point his tumor was 3.7 x 2.4 x 2.5 cm and Harper could barely stay awake after small amounts of excretion. An endoscopic endonasal surgery was performed on September 5, 2025 to remove the fluid from inside the tumor. Removing the entire tumor at that time was not an option.
Harper spent the next three weeks in the hospital learning to safely walk, eat, and perform daily activities. His team had to also start medication for diabetes insipidus because now his body could no longer concentrate urine. Harper needs access to water at all times due to this new condition and can drink up to five liters daily.
Harper wears an emergency alert bracelet now due to his adrenal insufficiency. His entire endocrine system has to be replaced synthetically and the common flu or stomach bug can place him in the hospital. Harper has come a long way over the last year. He has finished up all his outpatient therapies and is adjusting well to his new “normal”.
Harper is seen at Children's Hospital of Philadelphia every 3 months for an MRI and to see his neuro-oncologist. At his last MRI, growth was seen with his tumor. He has another MRI in October to determine if another surgery and radiation will be his next adventure.
Craniopharyngiomas are extremely rare and information and treatment options are limited until more research is done. Hopefully in Harper’s lifetime better treatment options will become available and all children with this tumor will be able to live a more normal life with less medications and surgeries.
