In hindsight, there were a few symptoms that stuck out from July. A stumble here or there, an eyelid that looked a little off, some occasional tummy aches. But on August 6 when her grandmother noticed her walking a bit sideways, we decided it was time to see the pediatrician. She was admitted to East Tennessee Children’s Hospital the following day and was diagnosed with DIPG. Our world was shattered, and today we are struggling to pick up the pieces.
Once we could swallow the news, we had our decisions to make… biopsy or not, radiation or not. We were told her tumor looked a little different — cleaner around the edges, perhaps not as diffused as some others. After four days on heavy doses of steroids, we went home to think about our next step. We left on Wednesday and met with a radiation oncologist on Thursday, but by that night things had simply gotten out of hand. We realized that the steroids were taking a heavy toll on Lydia. We spent weeks chasing a psychotic child around our house. She was trying to throw herself out of the window and bash her head into walls, all the while scratching, punching, and hitting anyone that came into eyesight. The worst part was that she was hearing voices, and they were telling her terrible things. The steroids also made her dizzy, so sleeping while laying down was impossible. And she was having extreme stomach pains. The steroids gave her an insatiable appetite that seemed to really hit its peak in the middle of the night.
This sweet, laidback, and overly compliant child of ours was being turned into a monster. We were simply helpless. Our oncologist told us that she saw these types of side effects from dexamethasone once every 5 years or so. We decided to wean her off steroids and spent the next 12-14 days doing so. Once off steroids, our child was back, and we were able to comfort and hold her again. After this experience, we knew we would have to prioritize her quality of life over quantity. Our physicians had previously told us that, since this was terminal, there really were no wrong decisions, but that didn’t make it easier. We sought counsel through reading the stories found on the ChadTough Defeat DIPG website, as well as speaking to other parents with DIPG-diagnosed children, and from many other sources.
Although it was one of the hardest decisions we ever had to make in our lives, it became clear that we would not treat with steroids or radiation nor seek out any clinical trials. We would spend every quality moment with our child until this disease would so violently rob her from us. We had about 4 1/2 good weeks after that. Her symptoms did get progressively worse but never to a point where she was completely immobile or unable to speak. We are grateful that our child was never “locked-in” and was able to converse with us until the day she died. Was the time short? Yes. But in talking to many of the parents whose precious children had already passed, the consensus was the same… it’s never enough time. Our precious and lovely Lydia now sits with our Heavenly Father and is no doubt playing alongside all the other beautiful children taken too soon by this horrible disease.
We donated her tumor and that was an easy decision for us. We hope something can be gleaned from it to help fight DIPG.
You can read about some of the amazing, courageous children who have been impacted by pediatric brain cancer, especially DIPG. These brave children are the reason we must continue to fight for a cure.