Rhoenan Tep DIPG Journey

First post: Aug 25, 2021 Latest post: Sep 8, 2022
Welcome to Rho’s CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.

Rhoenan is a loving, smart, goofy, talkative and energetic 6 year old. He loves life and enjoys going to school (even though he was stuck doing distance learning for kindergarten). He is the type of person that will brighten up a room everywhere he goes and will be sure to put a smile on everyone’s face!

On Tuesday August 17, 2021 that’s when Rhoenan’s life changed forever. He was diagnosed with DIPG (Diffuse Intrinsic Pontine Glioma) which is an aggressive form of childhood brain cancer, approximately 300 children gets diagnosed each year in the US. Tumors form at the brain stem, which is an integral part of the body that controls vision, motor skills, breathing, and more. The tumors grow quickly, amplifying the extremely painful symptoms in young children.

According to the St. Jude’s website, here are the most common symptoms of DIPG:

- Problems with balance and walking
- Problems with the eyes (including double vision, drooping eyelids, uncontrolled eye movements, blurred vision)
- Problems with chewing and swallowing
- Nausea and vomiting
- Morning headache or headache that gets better after the child vomits
- Facial weakness or drooping (usually one side)

Since the location of this tumor is on the brain stem, surgery is not an option. He will begin the treatment starting with 6 weeks of radiation (5 days a week for 15-20 mins each time) and go from there. Due to the side affects after radiation he will not be able to attend the beginning of this school year to start 1st grade until the doctors can see how his body will react to the treatments. This is the beginning of a long battle for my nephew and his family.

At this time please be respectful as we’re navigating through this time but all thoughts, love and support are greatly appreciated. Thank you for your understanding.

** We are extremely grateful to have a platform like Caring Bridge to share our story and Rhoenan’s journey however, any donations that are made through Caring Bridge does not come to us.

A Go Fund Me page has been setup to help my sister and brother-in-law out with their expenses which charges them a fee. There are other cash apps available that does not charge them any fees.