Henry’s 5th Birthday

Shared by Henry’s mother…

Henry turned five on May 26th, a birthday we weren’t sure we’d get to celebrate when he was initially diagnosed. In July 2018, Henry was diagnosed with a brain “mass” in the ER at Dayton Children’s Hospital. We had brought him in after a fall for what appeared to be a concussion. Upon exam and a CT scan, they found an apple-sized mass in his right frontal lobe along with bleeding and enlarged ventricles. Henry went downhill very fast that evening and ended up being directly admitted to the ICU. He lost consciousness and was placed on a ventilator. He had multiple medications running to help decrease the swelling in his brain and to keep his blood pressure and heart rate stable.

The very next morning he got extremely sick and was rushed to surgery after coding. That is a moment we will never, ever forget. We watched as they worked to stabilize him enough to get him out of the room and into the surgeon’s hands. Henry was in surgery and away from us for nearly 12 hours. Henry spent nearly a month in the ICU that summer. He went back to the OR three more times during that ICU stay, once for an external subdural fluid drain, then for a ventricular peritoneal shunt, and then for a permanent feeding tube/broviac central line placement.

During the tumor resection surgery (which, Praise the Lord, and for the amazing hands of his surgeon- they were able to fully remove the tumor) Henry suffered from some permanent right-sided weakness. He re-learned how to sit up, crawl, walk, go from laying to sitting, talk, swallow, etc. He continues to have right sided hemiplegia but is doing amazingly well. He’s walking, running, jumping, attending Pre-k, goes to weekly therapies, and eats ALL DAY LONG! We recently removed his feeding tube and let the hole seal up!

Once he was stable enough to be discharged from the ICU in August 2018, we were transferred to Hematology/Oncology with the pathology report/diagnosis of a HIGH-GRADE GLIOMA. The pathology report was full of unknowns, as his tumor was very atypical and was something that wasn’t easy to classify. We were presented with the treatment plan, including 18 months of chemotherapy (inpatient/IV) due to the high-grade nature of his tumor. They had prepared us with the extremely high probability of it growing back even with chemotherapy. Before starting chemo, his neurosurgery team, along with his oncology team wanted him to heal/recover more. He was still so weak from his surgeries and wasn’t strong enough to withstand being knocked back down. We made the decision to be transferred to Nationwide Children's inpatient rehab. We were then transferred back to Dayton Children’s a few weeks later after an MRI showed a few areas of concern that we wanted his neurosurgery team at DCH to evaluate. Once they cleared him, he started the chemotherapy protocol and continued to fight!

Throughout the chemotherapy Henry had MRI’s every few weeks until his fluid collections stabled out, then the MRI’s were every 2-3 months. Henry fought hard and there has never been any growth of new tumor.

He finished chemo in February 2020- and is still TUMOR FREE! He has another MRI next month and the anxiety is setting in (for us, not him. He always tells us “I’ve got this”!!)

We learned about the BioBank and Dr Lober’s research [underwritten by Gala of Hope Foundation] shortly after they had the pathology report in the summer of 2018. At the time we were still so in shock. So confused. Why Henry, why our baby? He had just turned two and now was facing the fight of his life. We never had any doubt about participating in the research. If there was anything we could do, anyway we could help another child. Another family. We definitely could. We were ALL IN. We wish we could do more. Brain tumors take so much away from children, even if they are in the most perfect spot, and are able to be completely resected. There are still major side effects, major issues that the child faces. Chemotherapy, radiation, weakness, paralysis, and so much more. Henry will always be different than kids his age, but he takes it all in with a huge smile on his face and we hope he always does.

We are so happy to be a part of Dr. Lober’s research and biobank. His work is amazing, both inside his lab and when he lays his hands on his patients. He has saved our sweet boy, and for that we will be FOREVER grateful.

About Gala of Hope Foundation

Gala of Hope Foundation is a non-profit 501 (c) (3) organization founded in 2014 to serve the Dayton region as a financial resource for cancer patients, cancer treatment, and local cancer research.  At its core, Gala of Hope Foundation was created and is sustained by gifts from generous people committed to changing the face of cancer in the Dayton region. The Foundation serves as a grant maker and a voice for Dayton region cancer patients and its cancer care community.

For more information, contact Jeff Brock, Executive Director at 937-239-5482 or visit www.galaofhope.net