It was 2 years ago today that we took our 2 year old daughter Ava to the hospital for a bone marrow aspiration. It was 2 years ago today that a doctor we never seen before asked my husband and I to go to a room to talk. It was 2 years ago today that the doctor told us ‘your daughter has Acute Lymphoblastic Leukemia, a type of childhood cancer’. It was 2 years ago today that our hearts broke in pieces, our faith was shattered and our world turned upside down. It was 2 years ago today that Ava became a statistic for Childhood Cancer, that she was one of the 7 children children diagnosed that day with Cancer.
Over the past 2 years Ava has received more chemotherapy in her little life than an Adult on chemotherapy. Ava has had a large needle poked in her little chest numerous times. She has taken too many pills to count, she has received too many spinal taps with chemotherapy injected into her spine and brain to count, we have spent the past 2 years at doctors offices rather then Ava seeing her friends, Ava attending playdates, Ava attending classes and playground visits, Ava has missed 2 years of her friends birthdays, Ava has missed traveling to go see her grandparents and great grandma, and so much more.
Over the past 2 years we have gained our faith back, our heart is slowing healing, and our ‘new normal’ has become our new way of life. We have gained many new friendships with other parents that their children have a type of cancer as well. We have welcomed doctors and nurses and all of the amazing staff at Ava’s clinic into our family. We have traveled outside of our comfort zone and went on numerous vacations and also went on Ava’s Make-A-Wish trip to Disney World. We now cherish each day, each minute of our lives because we know it can change in an instant. We have watched our 2 year old little girl grow and strive into a 4 year old little girl.
Over the past 2 years, Ava has fought to keep this horrible cancer out of her body, she has endured more than any child should ever have to endure. Her hair fell out, but if grew back and now she can wear pigtails. She has her good and bad days. She started preschool but cannot attend much because her counts are low and flu season is here. She does lover her preschool! She plays like a normal 4 year old would play, and she is very smart. You would not know Ava has gone through what she is has went through and still is going through just by looking at her.
How am I doing? Over the past 2 years I have had to learn how to balance not only being a mother to my child but also a caregiver to a cancer patient. I have days where I feel robbed because I don’t know whats it like to have a normal child since Ava is our only child. I have had shed many tears and asked God ‘Why’ a lot. I have had to learn how to become a pseudo pharmacist to my child since she takes pills every day, I have to chart my child’s chemotherapy schedule and meds. I have had to be secluded from my friends because I can’t risk Ava catching something. But through all of this I have become stronger than I have ever become in my entire life, not because I wanted to but because I HAD TO for my child so she can survive and beat this disease. I have become a Childhood Cancer advocate and I have raised over $19000 in the past 2 years for LLS, CureSearch and Alex’s Lemonade Stand. I have educated myself on childhood cancer. I have met amazing women at the clinic because their child is also fighting. I have met amazing women online through a group of moms from across the world that all of our children have or had cancer. I have learned the value of true friendship as so many of our friends have supported us through this crazy journey and continue to support us. I have learned that my husband is my rock, without him I would be lost, and love him very much.
So today just happened to be Day 1 of Ava’s last complete Cycle (cycle 7) in Long Term Maintenance. And with Day 1, it meant a visit to the clinic to get accessed for Vincristine chemo and receive pentamadine. Her ANC last week was only 550, today it is 680. So it is high enough to start Cycle 7 but not enough (needs to be 750) to restart her nightly chemo medicine. So today she received Vincristine and Pentamadine and a spinal tap with Methotrexate. And tonight she will start her 5 days of steroids. I am really hoping that the steroids will push her ANC up over 750, as if her ANC isn’t up over 750 by the next visit they may schedule her for a bone marrow aspiration to make sure nothing is happening in the marrow that is causing her ANC not to rise, as it will be 25 days next week that she has been on a chemo hold. So we go back to the doctor on Monday again for a count check. The good news is that her ANC has been on the rise since Nov 22:
- Nov 22 -200
- Nov 27 – 400
- Dec 3 – 550
- Dec 9- 680
Today was a hard day mentally, as they placed us in the same room that she was diagnosed in and PTSD set in. I still can’t believe what Ava has endured these past 2 years. She is the strongest and most amazing person. So as I sit and watch her play with her barbies after an exhausting day of chemo, doctors and hospitals, I thank the Lord that Ava is still with us today and Love her so much.
Thank you for the continued prayers and support. 102 days of treatment left, and 1 spinal tap left!