Monday, August 31, 2015

Hope from a Diagnosis

September is Childhood Cancer Awareness Month. For us, September is also diagnosis month. September 30th will make 1 year that we have been living with this diagnosis of a pediatric brain tumor.

Throughout this month, I'd love to give you some facts, statistics, warning signs, and general information about childhood cancer to help raise awareness. To start, though, I'd love to give a little hope from the past year.

Tillery loves to smile! She loves laughing with Luke and they play in a way that only brothers and sisters play. She loves to talk to Nana and Poppo on FaceTime and even likes to turn the camera around so they can see her toys and what she's playing. She babbles a lot and will copy anything you say. She even sings sometimes!

A year ago, Tillery had stopped being the happy child she was as a baby. She cried and fussed a lot and was almost impossible to console. She made a few sounds and could say "mama" and "dada" but wasn't consistent with them. She would not imitate sounds.

Tillery loves to crawl! She is a fast mover and will crawl all over the house. If you are holding her, she's always saying "I wanna down". She plays chase through the house with Luke and they even play their own version of hide-and-seek. At church, I have to get on to her for crawling all over the sanctuary and in-between pews! Sometimes I lose her!

A year ago, she had almost stopped crawling completely. She could barely sit up on her own and had to prop herself up with one arm because she lacked balance and coordination. At school, the teachers would pick her up and move her around the room to be where the other kids were because she didn't have the ability or energy to follow them from one center to the other.

Tillery works very hard to learn new things! Therapy is very hard on her physically and emotionally but she's making huge strides. She will tolerate some weight bearing on her legs, she is able to stand for 30 minutes at a time in her stander, and she will "walk" in her gait trainer to get to something she's interested in (Luke or our dog, Emma).

A year ago, we had stopped trying to get her to learn new skills. She showed no interest and we didn't know why she wasn't progressing. We didn't know if she had physical or mental limitations and we didn't want to push her to do things that would injure her. We were waiting for someone to tell us what she could do.

Tillery is not a typical 2 year old. She has limitations that many 2 year olds don't have, but that isn't want makes her atypical. Tillery is a miracle child! She is living with 90% of her original tumor still in her head! She has endured a surgery that lasted longer than she is normally awake in a day! She has made it through a surgery that started with serious conversations about the unlikely chance of her surviving! She has had to wear a helmet, be fed by a g-tube, take various medications including chemotherapy, use a stander, gait trainer and leg braces, and has faced every challenge with a smile on her face and a side pony tail!

Tillery is a face of childhood cancer but childhood cancer is not her identity.

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