Madilyn or Maddie was diagnosed 5 days after her first birthday. We had her party 3 days after her actual birthday, and the next day discovered she had a “mass.” We weren’t told officially it was cancer until the 5th day after we noticed the mass. She stopped crawling, stopped using her hands to feed herself, leaned to one side, stopped supporting her head, was whining and sleeping all day/night.
Maddie had an external shunt placed in her head to remove excess CSF fluid buildup that was causing pressure in her brain. Then, she had a tumor removal surgery. Followed by a permanent shunt surgery. Her next major surgery was to place a sub q port in her chest to administer chemo. Her most recent surgery was to remove that port due to infection. This coming week she will undergo surgery again for a new sub q port.
She’s had multiple MRIs, CT scans, a lumbar puncture and probably close to 100 needle pricks. Maddie has received chemo at this time.
We are from Michigan but moved to Tennesse for treatment. My other daughter will be 3 in January but is in Michigan with my mother. The girls only FaceTime when we have the chance throughout the week. Because I’m a single mother, I’ve also had to move back in with my mother (once we return home).
Maddie cannot speak like other children her age and cannot walk. Others her age are walking or beginning to take their first steps. They can also say a handful of words. She is a little off-balance, and when active requires a helmet to protect her head if a fall occurs.
Maddie is strong! Her strength gives me strength.
Hope session by Swoon to Swaddle Photography | Facebook | Instagram