For April we would like to introduce you to Bennie. At only one year old, he was diagnosed with SHH Medulloblastoma. His story, like many others, is one of parents knowing something is wrong with their child, but struggling to get answers. Cancer is usually the last thing we think of, but when you are told, everything changes. His mother, Brooklyn, tells us his story.

Bennie was the happiest, smiliest baby ever! Then one day he started acting very “off” (super irritable). I knew this was not my baby, so off to the pediatrician we went. The ped agreed that bennie did not seem himself, but we couldn’t find a source (checked ears, ran swabs for all viruses). A few days went by and Bennie was becoming more irritable and was beginning to not eat and sleep. Off to the ER we went. We were told at the ER that bloodwork was too invasive and that babies show signs in their skin or eyes if something requires bloodwork. They dismissed us by saying bennie was just constipated and teething. I let another 48 hours go by and I went back to the ER and demanded answers! At this point it has been an entire week and my baby wasn’t sleeping or eating. All he would do was cry. Once they agreed to take bloodwork it came back with near kidney failure levels due to dehydration. We were admitted to the pediatric unit but still had no answers. After demanding any and every test be done to figure out what was wrong with my baby, I asked for a CT scan. The CT was done at midnight, and by 2:30am I had an entire team of doctors coming into our room. I knew it was bad.

The moment that changed our lives forever. They told me my baby had a huge mass on his brain and they had already put in orders to have us life flighted to a more equipped hospital. Unfortunately there was a hurricane coming straight for Tallahassee that we would have to wait out. Luckily, by the grace of God the hurricane did not hit like it was predicted, and we were able to get life flighted to Shands in Gainesville, FL.

After our arrival we were admitted into the PICU, and they immediately placed a drain in Bennies head to release the pressure that was building up due to the tumor. Bennie underwent a 9 hour brain surgery the very next day. Unfortunately, the followup MRI showed another tumor almost just as large as the first, so he needed another craniotomy. The very next week Bennie underwent a 9 1/2 hour brain surgery. Unfortunately, the followup MRI showed a residual tumor (a 7mm piece, about the size of a pea). The good news was that regardless of whether there was residual tumor the treatment plan remained the same. Bennie would have to undergo four to six rounds of chemo with a bone marrow transplant.

Fast forward to now. Bennie has done wonderfully. After the first three rounds of chemo, he had a followup MRI, which showed NO EVIDENCE OF TUMOR!! so we moved on to the very last round of chemo. Which is where we are now. This has been the most intense and toxic round, as these drugs had to kill off every cell in his body, good and bad and would have to rescue him with his own stem cells that we retrieved after his first round of chemo.

To say my world has been in complete disarray since August is an understatement. Bennie’s been through more in these past few months than anyone I know. Not to mention, the surgery team messed up his line placement, not once, but twice so he underwent surgery for his line a total of 3 times!! We have a long road ahead of us, but we are hopeful and we are beyond blessed to have a clean MRI. We are still inpatient and have been for a month now, but we’re hoping we can get out soon and start to live our new “norm.”

Bennie has since finished his chemo in March. His latest MRI from May, continues to be clear. Since returning home, Bennie has continued his therapies and has started walking. If you want to follow Bennie’s journey, his parents have created a private group on Facebook. We can easily say he is one of the most photogenic kids we have seen. His personality shows through in almost every photo. We hope Bennie continues progressing in his journey and his scans remain clear.