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.
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, "am I going to be ok?" Yes.
Your next few months are going to be hard, so hard: emotionally, physically, mentally... everything is going to change and your "normal" life before diagnosis will never return. You are going to experience things you never thought you'd have to watch your child go through, you will learn terms you never wanted to know, you will become an expert at whatever routine it is that your child needs...
then your crying will slow down...
and your back will straighten...
and your heart will strengthen so that you can face every obstacle that your child has to face and you will do it together, forming the tightest bond you can ever imagine with your baby.
If this ever happens to you or someone you know, just take it one day at a time. The first few months are the worst. Check off each day and be happy it is done. Know that even in the middle of your worst days, your child is still in there, behind that chemo-daze, inside that sick, fatigued little body, the sparkle is still there. It is not lost, it is just hiding from the chemo that is coursing through that little body, finding and killing every cancer cell it can find. When you make it through those first 8 or 9 months, and you finally hit maintenance, that sparkle will start to emerge and then BAM! There is your child: bald, beautiful and laughing uncontrollably.
And you will be there watching and appreciating more from life than you ever could have imagined possible. Every detail about your days, family, or life that you may have missed before diagnosis is huge and purposeful and everything. There is a light at the end of those hardcore chemos and it is beautiful.
We are not done with Phoebe's cancer. We still have a long way to go with more chemo, more spinal taps, more careful watching of her blood. But for now, we are cherishing every moment she has, thankful for where she is in her treatment and grateful that her leukemia has disappeared... for now. Because there are no guarantees and we know this.
Please follow Phoebe's journey through leukemia and beyond. 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.