Penn's DiagnosisIn December 2019, Penn was in Los Angeles filming his first SAG TV Pilot with an amazing cast and crew. He had the best time on set in Venice and was on cloud nine. It was a big job for a little kid and he did seem extra tired, but I chalked it up to that. Penn has always been SO happy and so easy-going. He literally never cried as a baby and smiled constantly. So, it just wasn't that obvious that something was wrong. We returned back home to Austin on December 16th. That night, I began to piece together some things I had noticed but didn't put together that they were related because they had been developing so slowly over time. I plugged all the symptoms into WebMD: stomach pain, jaundice, bruising, cold intolerance, extremity cold, lips turning blue, recurring fever, rash (which I later learned wasn't a rash, but was petechiae). Oddly, none of the things WebMD suggested based on those symptoms were leukemia or any kind of cancer. The next morning I called the pediatrician to schedule an appointment thinking maybe mono or a virus. Story continued in the post below that I wrote that week: (Written December 19, 2019) On Tuesday afternoon (12/17/19), I took Penn to the pediatrician because while we were in LA he was having a hard time walking more than a few steps without doubling over but he insisted that nothing hurt even though I could tell something was up. His appt was at 3pm Tuesday - the doctor was very concerned based on lots of other things I mentioned and said his spleen was extremely enlarged - he ordered a multitude of blood tests and an ultrasound. He had his blood drawn and by 4:30pm we had a call from the doctor saying that it was leukemia and the ER at Dell Children’s hospital had already been contacted and was waiting for us. His diagnosis was officially confirmed later that night and we found out it is ALL type. He is on day 2 of blood and platelet transfusions and they haven’t been able to get his numbers to where they want, so they are delaying port surgery a bit and just inserted a PICC line until then. While he was under, they also gave him his first dose of chemo into his spinal column and drew bone marrow for additional testing. He’ll start his first chemo drip tonight and will continue treatments for the next 2 years or so. We’re hoping to be out of the hospital next week, but unfortunately he is still in the ICU until his numbers are better and they can move him to the oncology floor. He also won’t be allowed to return to preschool which is going to be so hard for the kid who wakes up every day excitedly asking me if today is a school day - he is going to miss seeing his Riverbend friends every day so so much. Thanks to everyone for your prayers and kind gestures. I apologize if we don’t get back to you right away. The little gifts and treats in between pokes and constant medications have helped Penn tremendously. He will seem great one moment and really bad the next but they said that’s normal and he’s being a trooper. And for something to make you smile, swipe to the last video to watch a 5-year-old who thinks that he is controlling the image from his heart ultrasound by moving his mouth. |
Penn's Story
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