Cancer messed with the wrong girl
Welcome to the Poopy Place. We hope you’ll join Ava’s Squad and keep our girl in your thoughts and prayers as she fights leukemia.
It’s be a long 7 months, like the LONGEST. Most of you have been reading my Facebook post for the last seven month so I’ll try not to rehash too much.
Ava’s fevers began on December 2nd. Since then she has had fevers pretty much every day. She was seen by our pediatrician, urgent care doctors, and the infectious disease doctors and hematology doctors and Children’s.
On January 11th the hematologist told us he was sorry we were scared and thought she may have cancer, but she definitely did not. He said she had multiple viruses and her immune system suppressed because of it. He assured us there was no cause for concern. It was definitely one of the happiest days of my life. Little did I know 6th months to the day we would be asked to repeat labs only find out she did indeed have Pre B Cell ALL. I could say I was surprised or shocked, but I wasn’t.
Since leaving the hematology appointment we visited many more doctors who all kept telling us it wasn’t cancer, but my gut has always told me it was. We finally found a wonderful rheumatologist who agreed that something was definitely wrong and set us on the path. He first diagnosed her with rheumatic fever. When that treatment didn’t work he asked us to visit a GI to rule out Crohn’s. We thought this may be the final step to getting a diagnosis of Lupus. On our final meeting with him on June 24th he said something that struck me. He said I’m “definitely concerned about her hemoglobin levels, but since she’s been seen and cleared by hem, right?”, he kept going about why it may be IBD, but in my head I heard a small alarm saying— Was she though? That Children’s doctor didn’t take us seriously, he never even called us back. She fucking has cancer! BUT everyone tells you not to think like that. After 6 months of voicing that to different doctors I had learned to keep those thoughts to myself.
Back in April my aunt and a very sweet coworker had recommended we bring her Johns Hopkins. They suggested this after her 106 fever and I promised if we need to see another new doctor it would be from Hopkins. So I scheduled her GI appointment with a doctor at Hopkins. Her scopes were scheduled for this coming Tuesday. Thankfully the doctor who was going to do the procedure looked at her labs from June 24th and said somethings not right lets run them again.
When the doctor called on Friday asking us to admit her to the ER because her hemoglobin was so low, that little voice telling me it was cancer got even louder. When we walked in and the guy at check looked up at us and said Ava? The voice started screaming IT’S CANCER, THIS IS IT, brace yourself. When the ED doctor took me into that horrible parents room she looked at me and said I’m sorry to tell you that Ava has leukemia, but based on the questions you asked in the room when Ava was admitted and the look on your face I think you already know this don’t you? Yes, yes sadly I did. Now we could finally name this monster that had taken my beautiful teenager daughter’s energy and active lifestyle away. Finally we could begin to fight the real culprit. Finally we could get rid of the pit that had been sitting in my stomach and on my heart for the last 7 months. Who knew that the word cancer would bring relief and yet an even bigger boulder to rest in my heart.
So this blog will be a way to keep my thoughts in order, keep people posted, and hopefully also give Ava an outlet. You see she is a great writer and maybe if I can get her writing here she can stop trying to take care of us.