September is Pediatric Cancer Awareness Month. At PCFLV, we are committed to spreading the GOLD all year long. However, in September, we truly make it our mission. 30 Days, 30 Stories celebrates the children we know and love and the brave battles they fight and have fought, with their families by their sides. In celebrating these beautiful children and their stories, we hope to inspire you to join us in our mission to SPREAD THE GOLD in September and all year long!
2016 was a big year. Abby celebrated being a FIVE-year survivor of ALL (acute lymphoblastic leukemia) this year! She was diagnosed on January 2, 2009 and was in treatment until March 13, 2011 - which totals up to 800 days. 800 days filled with doctor's appointments, pills, IV's, injections, lumbar punctures, bone marrow biopsies, anesthesia, etc. That's a lot of poking and prodding for a 2 year-old.
And Abby probably is not, nor do I really think her dad and the other kids are reminded every day, like I am, of her fight. I literally see the scars every single day. She sees them but because she was so young I'm not sure how much she remembers. And I don't think her dad sees them the way I see them. I don't think the other kids see them the way I see them. I see the tiny bone marrow biopsy scars on her right hip. I see the scar where her port was placed and then removed. I see them every single day when we get her dressed or when she gets out of the bath and I dry her off. I see them as her mom, the person who was supposed to protect her and they make me feel like I didn't do a very good job some days. Most moms I know would probably feel the same way. I gave her life. It's my job as her mom to protect her, nurture her, love her and keep her out of harm's way. And somehow that sneaky cancer got in there right under my nose. I felt like there was something I could have done to stop it, but rationally I know there wasn't anything I could do.
Abby in all her beauty, I think, is blissfully unaware of all she has endured. Yes, she sees the scar from her port (which she does try to play the sympathy card with it still to this day...ha-ha). She may carry the physical scars - but the psychological scars are there for me, her dad and the kids. It's apparent any time Abby has a major illness. It was very apparent last December right before her birthday when Abby had been admitted for dehydration and should have only been overnight. She ended up with aspiration pneumonia and intubated (on her birthday) for 10 days. She came home Christmas day and spent another month recovering. The day we thought we were going to get Abby from the hospital after a night of hydration I could see the panic on her sisters' faces at the thought of Abby being seriously ill again. I had to explain what was going to happen and why. I hurt for the two of them so much because of the fear they felt from years before because of Abby's cancer. I had to assure them it wasn't cancer again. I had to assure them she would be alright when I struggled to keep myself composed and try to keep Abby's dad composed.
My heart breaks every time the older girls question me about Abby's health. Yes, she is a five-year survivor and chances of relapse are slimmer than before. And yet, even after five years, there is this nagging little voice that creeps in some times when Abby gets sick, or when her blood counts are funky. The voice is not nearly as prevalent as it had been during treatment or when she first got off treatment. It has dissipated somewhat but somewhere in the recesses of my mind it lingers...what if it comes back? I know it lingers for the older girls.
Most people, unless you've lived in this world or a similar one due other longterm illness, do not understand how this dark cloud looms over you. Yes, most days, it's covered by sunshine and rainbows. But it's there behind the scenes waiting for you to be vulnerable. Truly it's a shame that families like ours have to live with this cloud in the background. And hopefully some day we can get to a place where we don't feel that presence or hear that voice and wonder what if. Until then we educate, advocate and search for a cure so that other parents and siblings do not have live with that dark cloud.
My hope is that one day soon no other child will have to endure what Abby endured. That no other sibling will have to endure what Abby's siblings endured. That no other dad will endure what Abby's dad endured. And that no other mom will have to endure what I endured.
- written by Abby's mom, Sherri