This is the Poopy Place Adventures Team starring Ava and Evie.  This September, Ava and Evie will Be Bold & Go Gold during Childhood Cancer Awareness Month by participating in The Million Mile. Support them with a donation of any amount and help move us closer to finding a cure for all children with cancer! Thank you for your support!

Ava's Story

On July 12th, Grace and Kevin found out their little girl had leukemia.  A few days later, they found out it was Pre B Cell ALL specifically. 

Ava’s fevers began on December 2nd. Since then she has had fevers pretty much every day. She was seen by the 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. 

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.

Evie's Story

Evie is a 4 year old survivor of Retinoblastoma.  On June 16th, 2016, her pediatrian noticed something was wrong with her eye at her 1 year old check up.  She said we would need to see an ophthalmologist soon.  Later that day, the pediatrician called and said, no, I talked with the ophthalmologist you need to go at 8 am tomorrow because it was either a cataract, cancer or nothing.  Talk about the most sleepless night ever.  The next day we brought her in and was seen by an intern, who then found her supervisor, and onwards and upwards until the director of the department walked in and said it was retinoblastoma and we needed to see a specialist within 2 hours.  We spent the next week getting MRIs, going to Philly, Hopkins, and the Retina Group locally to figure out who would treat this rare cancer.  She did 6 rounds of systemic chemo with laser.  We thought she was clear.  

Our world crashed again when her first recurrence was found in August 2017 and then her 2nd, 3rd, 4th, and 5th.  She then went through 2 rounds of intra-arterial chemo.  The 3rd attempt was unsuccessful due to her arteries being occluded.  We then did plaque radiotherapy and were on lock down at the hospital/hotel for 5 days in Philly at the Wills Eye Institute.   As of March 2018, Evie has been clear of tumors and will continue to be intensively monitored for years to come.