Our sweet, sweet Emma. Emma has been battling "something" for most of her little life, chest pains, stomach ache, pain from out of the blue. She'd be playing and all of sudden shriek in pain, or cry all the way home from my mom and dad's while in her car seat. We couldn't go over speed bumps, pour water over her head in the bath or pull her in a play wagon without her crying. Finally when she was 3 and after countless appointments, evaluations, therapies, doctor visits and tests, Dr. Bearns at PCH ordered a MRI that gave us the answer. A juvenile pilocytic astrocytoma (tumor = cancer) the length of her back inside her spine. It's a slow growing tumor and since it was so large had been there growing from the start of her symptoms. I still cry to think of the pain she was in and we didn't know.
Her first surgery to remove the tumor was in April 2009, they removed as much as they could leaving tumor where it was too risky for fear she would lose her mobility or worse. No chemo was ordered at that time since this type of tumor has shown to encapsulate iself and not re-grow after surgery. 2 years later, with MRI's every three months, she started having stomach pains and complaining her back hurt. I was living in a place of denial, like we dodged a bullet only to be reminded that she has a chronic condition and the new MRI showed a large fluid filled cyst and tumor re-growth. Second surgery was performed on June 3, 2011. We spent three weeks at Phoenix Children's Hospital where she learned to walk again but this time the surgery has left her without some feeling in parts of her legs, she says "they don't work" or "won't listen to her". Even more, she has weekly chemo treatments that are about 4 hours long. She hates the tape (having to take it off) and gauze they have to place over her port while the medicine is going in. She wasn't supposed to lose her hair but, she did. Her taste buds have been compromised so things taste "weird" if she even eats at all. Her stomach constantly hurts and she wants to lay in front of the TV and rest.
Now here's the good news....she's still bossy as H. E. double hockey sticks, she still likes to draw and make jokes, she loves her new hats and never cried over losing her hair. She goes to school almost every day and has made friends who help her out at every turn. She's proud of the progress she's making while using her walker and wants to show us when she takes two steps by herself from the ottoman to the couch. She wants to go to Disneyland when her chemo is over next year. She's here and not going anywhere. It's just that every now and then, when I see her small frame, or she looks a little grey and really tired, I'm slapped into reality of the fact my kid has cancer and we are fighting for her life. As much as I hate to say it or be reminded or seem dramatic - it is what it is. She has cancer but SHE'S HERE.