Baylee’s Princess Power

We welcome Baylee’s mom as a guest blogger today to share her story.

Baylee was born perfectly healthy on May 15, 2012, but around 1 I noticed a problem with her pupils. I was told she had Anisocoria and it wasn’t a big deal. Fast forward to 2015… I knew it wasn’t just Anisocoria so I pushed for a federal which I finally received. An Ophthalmologist diagnosed her with Congenital Horner’s Syndrome.

A few months later she was having fevers and transient pain. I took her to the Pediatrician several times and was assured it was a virus that attacked her joints and growing pains. She then got severely constipated so we went to the ER 3 different times. I was told, “Oh, she’s just constipated.” This child had never been constipated in her life! I begged the doctor and asked if her Horner’s could be the cause. He said it wasn’t related.

Finally, when the pain got so bad she wasn’t walking we got a referral to an Orthopedic Surgeon. This doctor was a Godsend! He didn’t know what was going on since her pain was everywhere and he didn’t work with toddlers. He called our local children’s hospital for advice on how to treat Baylee. He did a bone scan and 2 special blood tests. The results came back as an infection in her L1 and inflammation.

We were told to go home, pack bags, and drive to Fort Worth about 2.5 hrs away. After an MRI revealed a lot more, we were told it looked like cancer. A bone marrow aspiration and MIGB revealed it was Stage 4 Neuroblastoma! Our baby had a horrible cancer that is notoriously hard to treat and considered incurable. She was diagnosed on Jan 15, 2016 which is also the 4 year anniversary of our son Brayden passing away at the age of 6 from a heart defect.

Baylee had 40-60% bone marrow disease and 4 bone lesions. After 5 rounds of chemo she had 1 bone lesion remaining and less than 1% bone marrow. On May 26th she will go in for the first of two stem-cell transplants in hopes of becoming NED (no evidence of disease). After the SCT she will receive proton radiation followed by 6 months of antibody immunotherapy. Baylee is doing good as of today May 23rd!

Baylee’s cake was provided by Sugar Angel Yvette Becerra with Girlfriends Sugar Shack in Arlington, Texas. Baylee’s mom expresses receiving her cake from Icing Smiles was, “Such a blessing!”

To read more of Baylee’s story, follow her page on Facebook.