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!
We never saw it coming. Phoebe's cancer was like a freight train, hitting our family head on, when we didn't even know we were on the tracks. For a few weeks in August 2015, she had complained of pain in her left leg. We thought maybe she pulled something and was just favoring it. She was an active five year old, so it was totally possible. She was also bruising here and there with little fingerprint-type bruises on her arms, legs, knees. Again, she was active, so this seemed "normal".
Until the night she stumbled a little and screamed like she had a compound fracture in her leg. The sobbing and crying and screaming in pain... I thought a bone would be poking out of her leg, but how could it be? She only stumbled a bit.
That was the last time she would walk on her own for almost 4 months. That night, we heard her scream for us as she tried to walk on her own to the potty; she swung her legs to the side of the bed and could do nothing more from the pain. She really could not walk; this was not a dramatic 5-year old putting on a show, because there was no one to see it. Little did we know, her bone marrow was 90% full of leukemia.
The next morning, I took her to the Emergency Room and requested x-rays... and labs run on her blood. In my gut, I knew something was off. In my gut, I felt bad news was coming. My best friend had gone through childhood cancer with her little girl and I knew the signs.
"PHOEBE HAS LEUKEMIA."
You can anticipate and worry and fret as much as you want, but NOTHING prepares you for the diagnosis of cancer for your child. It's devastating. It will stun you, then stab you in the heart with a harpoon the size of your car. In less than a second, it will bring you to your knees as it slices its way through memories of your child's past, thoughts of her present, and dreams of her future, and you will feel defeated. Because cancer can mean death for your child and you know this... everyone knows this.
It's the worst feeling, the worst words to hear, and your mind will explode with gut-wrenching sorrow and deep pain and guilt-filled whys and horrible what ifs. You will cry uncontrollably and you will sob more than you ever thought possible, but you will hold it together when your little one looks at you and asks, "Mommy, am I going to be ok?"
Three years ago today, Phoebe was diagnosed with Acute Lymphoblastic Leukemia (or ALL as they say in the real world). The following months after diagnosis were hard, so hard: emotionally, physically, mentally... everything changed and our "normal" life before diagnosis never returned. She was sick, couldn't walk, lost her hair, went through an anguish that would buckle the strongest adult. She experienced things we never thought we'd have to watch our child go through, we learned medical terms we never wanted to know, we became experts at whatever routine Phoebe had to deal with: shots, needles, spinal taps, blood draws, infusions, chemo, hair loss, nausea, fevers...
But as these medical routines became our new normal,
our crying slowed down...
our backs straightened...
our worries turned into determination...
our daughter became a warrior...
and our hearts were strengthened so that we could face every obstacle with her and we did it together, forming the tightest bond you can ever imagine with our little girl.
After two and a half years, Phoebe has completed her cancer treatments and is so proud of her journey. She will tell you how strong she is now because of it and how amazing she did throughout her sickness. Leukemia brought some really amazing strengths of hers to the forefront. One of those traits was finding the positives from negatives and she excelled at that throughout her cancer journey. She doesn't talk about the pain she endured, the fact that she couldn't walk for 4 months, the physical therapy she had to overcome, the 20+ spinal taps she had to have, the blood transfusions she had to sit through, the (what seemed like) hundreds of times her port was accessed, or the many times she had to have clots cleaned out from it. She talks about the beautiful people she met along the way, her "Friends of Phoebe" page and all the supporters she has, the fun activities she was able to do because of cancer, the trips she took during her treatments, the parties she attended in her honor, the money she raised for other kids who are going through cancer. That is what she focuses on and remembers most about her cancer days. We can all learn a lot from this little girl.
Phoebe now only visits clinic once a month to have her blood checked. We hold our breath and cross our fingers every single time, hoping and willing the leukemia cells to stay away forever. That fear will never go away. We never want her to have to go through that again. But there are no guarantees and we know this.
Please follow Phoebe's journey through leukemia and beyond. We started her page on day three of her diagnosis and kept a journal of her entire cancer treatment for the last three years. Yes, she is a childhood cancer girl, but she's also inspiring, creative, and eye-opening for those who know her. Her Facebook page is "Friends of Phoebe". From the beginning, we have hoped to bring awareness for what these children go through... and she has done just that and so much more.
-written by Sarah, Phoebe's mom