September 2013
The following story is courtesy of Ava’s family:
Ava has always been a healthy little girl & then during Christmas break of Pre-K she started having some pain in her right ankle, then the next week it was her left wrist, we took her to St David’s ER and they called it “growing pains” and advised us to follow up with her pediatrician. The following day we saw the pediatrician and she referred us to an Infectious Disease doctor because she believed she may have “Juvenile Rheumatoid Arthritis” based on the migrating joint pain she’d been experiencing. We followed up with the Infectious Disease doctor the next day & she ordered labs, x-rays of Ava’s wrists and TB testing. I received a call from her a few days later stating she wanted a MRI of Ava’s right wrist because she saw a possible defect in the bone; the MRI was scheduled for the following week, in the meantime Ava started using her hand again & was running around as normal, then that Sunday, January 13, 2013 she woke up screaming & crying in pain, she was unable to stand or walk, and her knees were swelling. I was scared and in a panic so we made the trip to the Dell Children’s ER; she endured many exams/test during this week (labs, x-rays, MRIs, fluid extraction, bone marrow biopsy & aspiration). Ava was diagnosed with ALL (Acute Lymphoblastic Leukemia) January 18, 2013 & the doctors moved quickly the next morning, January 19, 2013 she was taken into surgery to place her PORT, perform a spinal tap to determine if the leukemic cells had made it to her Central Nervous System (they were negative), perform another bone marrow aspiration and she received her 1st round of intrathecal (spinal) chemo. The following week Tuesday, January 22, 2013 she received her 2nd round of chemo in the form of a 2hr infusion. Ava was discharged from Dell Children’s Hospital on Friday, January 25, 2013 and scheduled to return for chemotherapy at her Pediatric Oncologist office according to her treatment plan.
Ava’s treatment plan has consisted of weekly intrathecal (spinal) chemo, IV infusions, multiple chemotherapy drugs being pushed through her PORT and taking 6 oral medications 2 times a day at home.
She started her 6th cycle of chemotherapy (Interim Maintenance 2) on July 22nd, which has consisted of intrathecal (spinal) chemo on day 1 & 30 and Methotrexate & Vincristine pushes in her PORT every 10 days for the past month. According to her treatment plan Ava should complete weekly chemo visits by mid-September and has been encouraged to return to school for Kindergarten! She will begin Maintenance which consists of office visits every 2 weeks, Vincristine push 1x month, Oral Methotrexate 1x week, 6MP pill everyday, Intrathecal (spinal) chemo every 3 months & Bone Marrow Aspirations every other month until she has reached her treatment completion date of March 2015 (treatment for a female child with ALL is a total of 2 years & 2 months)!! REMISSION!!!
The emotion that came over us when Ava was diagnosed was a mixture of shock, fright, devastation, and excruciating pain; I believe this is one of the worst things a parent could ever hear. We were of course grateful that they kept digging and found a diagnosis, just not the one we wanted to hear. Ava’s father & I sat in the hospital room and cried our hearts out for hours & then built up the strength to call my parents & sisters to come to the hospital and bring Ava’s older sister, Arianna. Then the medical team explained everything to them & began going over Ava’s plan for treatment, things were happening fast and seemed like a blur, but we ran with the motions and it has become our new normal. This has definitely been a life altering situation, our family has been put through the ringer in the last 7months, we’ve overcome major obstacles, and continue to push through each day hoping for the best. I had to quit my job upon Ava’s diagnosis in January to become her full time caregiver. At the time she had insurance through her father’s employer, but things became hard rather quickly as we’ve been living solely off of child support, we’ve had to downsize our home and Ava’s father lost his job in May, which meant Ava lost her insurance and we became Self Pay.
The 1st 2 months were definitely the worst as Ava was very weak, losing weight, unable to walk and just wasn’t herself. As her mom it was extremely hard watching her go through this & I would lay there at night and cry and just pray for my baby to get her strength back & just run around and act herself. We spent many nights in the hospital, it became our 2nd home, luckily that streak ended around March and Ava started walking, eating and acting like a typical 5yr old, it has been the greatest joy!