Today's Hero

PORT FLUSHING UPDATE!! Thank you for praying everyone. I got great news yesterday. Dr Merchant said we need to remove the port. She's had it long enough. She doesn't need it anymore. We will go to Memphis once school is out, and Ivee will have surgery to remove it. And since we won't be keeping it, Ivee did not have to have it flushed yesterday, or ever again! Thank you for praying!!!

Today's Brain Tumor Hero

In Memory of
Brandon Moseley 

Ivee and Brandon in May of 2011. His end of treatment, going home to FL party. They were blowing bubbles, and having so much fun! 

 I sat in kitchen A of the RMH and was waiting for my coffee to finish brewing. Ivee and I had just moved back to Memphis after her second tumor resection.  I had been there for about 4 days and hadn't met anyone yet. It takes me a few days to take in all the people (people watch) and get up the nerve to make an acquaintance. Many people have already been there a while, and you have to see who's new, in the middle of treatment or about to leave. That, and not all people are approachable. It is not a frat house, it is a house full of children fighting cancer, and everyone deals with that differently. I had done this before. Lived this road, and I was okay just taking my time getting into our life for the next month and half at the RMH. As my coffee brewed, a beautiful, sweet, and petite South American lady approached me and began a conversation. Millie, I discovered, had only been there for a week with her baby, Brandon, and were our next door neighbors on the first floor of building B. 

Brandon, only a few months older than Ivee was battling a diagnosis of Diffused Intrinsic Pontine Glioma (DIPG). I watched for 6 weeks as Brandon and Ivee's relationship flourished. He would laugh and laugh at her. He thought she was so funny! He would let her use his remote controlled cars, but she had to always give them back. (He wasn't too happy when his mom gave one of his cars to Ivee as they were moving back home. He would still bring it up sometimes, Millie told me.) We would eat many suppers/meals together at the RMH. We would visit with one another in our rooms, and Millie and I would share our fears and frustrations. 

I watched Brandon, who was on an extremely high dose of steroid, starve as he couldn't eat until almost 2:00 p.m. everyday. St. Jude does radiation by age when it comes to sedations, and Brandon was among the oldest children for sedation. Everyday, Millie would wake up to a hungry child who wasn't allowed to eat, take him to the cafeteria and let him pick out anything and everything he wanted to eat once sedation/radiation was over. And once he was awake, he ate non-stop thanks to the hunger that the high does steroids gave him. 

Millie's light during this time was amazing, and Brandon was a huge fighter! We said good bye to our friends in May of 2011 and Millie and Brandon returned home to Florida. Millie and I texted, Facebooked and she would update her Caringbridge site. Brandon did well. Then by the end of September 2011, Brandon began to show symptoms of progression.  He had another MRI which indicated their worst fears. The tumor had began to grow again. They tried  3 different types of chemotherapies and given that they did not think it was working, they began re-irradiation at the end of December of 2011. 

Brandon lost his battle to DIPG at 6:24 am on March 31, 2012. A year from his diagnosis. 

My mind still thinks of Nini, as his family so affectionately called him. My heart breaks when I think of the laughter and life that was lost here on this earth, and the emptiness that Millie and Joe and their two other boys go through. But, when I think of Brandon, I see him in heaven making Jesus laugh, and sometimes I wonder if he still tells Jesus he wants his car back? Love to the Moseley family!!!! 

*Diffused Intrinsic Pontine Glioma (DIPG), is a rare malignant and aggressive type of brainstem cancer.  This cancer usually attacks children between the ages of 5 and 10.  The tumor cannot be removed given the location and the way it grows within the tissue.  There is no cure and treatment is limited to radiation.