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Childhood Cancer Awareness and My Story

 at the zoo

September is Childhood Cancer Awareness Month!

Childhood cancer seems to cover a wide range of cancer, but most people think of Leukemia as it's the most common form. This occurs in 34% of all childhood cancers and mostly males between 2 and 4yrs old. This is not the type of cancer my niece had. 

dayofv1yrMy niece instead had anaplastic ependymoma aka a brain tumor. She was 2 at the time of diagnosis. While this happens to a very small percentage of people (about 1% of the population), over 3,000 children will be diagnosed with it this year. The symptoms she presented with were numerous, and many weren't recognized until later when the diagnosis was delivered. 

Her first signs, she was just not feeling well in general and was very sleepy. Then came headaches and she would complain her eyes hurt. She was also a lot more wobbly on her feet. Running with the other kids took a lot out of her and all she wanted was to be held. She would curl up in my mom’s lap and close her eyes. The ependymoma had more than one affect for her and they treated it in a few different ways. 

First they cut out as much as they could. Next they started a radiation treatment every week she was at a hospital for treatment at least 3 days of the week. This lasted for about 2 months. Her brother and sisters each took a turn coming to visit her while she was in San Diego getting treatment. It was really hard on them to be apart and know that she wasn't “ok”. usduringtreatment

Next, they started the chemotherapy. The hair loss started. We got to compare our bald heads a few times along with our little mice (ports). She had to be in the hospital for hours and hours each day. She remained happy overall, and while treatment took a lot out of her, she was resilient. I'm sure she didn't understand everything that was happening, but she handled it like a champ. She was a tiny warrior fighting a battle she was certainly not going to lose. 

While going through treatment, they noticed the fluid wasn't draining from her brain properly, so they added a stint to help things move along the way they needed to. They were hopeful that they would be able to remove this eventually, but when they closed it up a little, the brain began swelling with fluid again. This is something she will have for the rest of her life. Luckily, she has great hair that will cover it up so no one will really notice. 

We carry some of the battle wounds with us. Same scar from our port, in exactly the same spot. I'm hopeful she won't remember so much of the bad, and just remember she survived. Each time I go for a blood test, my heart stops a little, my hands get a little clammy, and I hold my breath until the results come. I'm hoping she doesn't have that experience, that it's more like a bad dream. She has to goes for MRI's every 6 months. They knock her out for this so her tiny little body doesn't get the squirmy wormies in the machine, or have to hear the terrifying noise. 

She's healthy and strong and just like the other kids her age. She has recovered amazingly well. She's happy and healthy, playful and spirited, loving and loved. We're so lucky for the results now 2 years later and looking forward to what the rest of her life will bring for her.