Monroe’s Fight Against Orbital Rhabdomyosarcoma

Sweet Monroe is the youngest of 3 children in the family; Zaydyn (9), Stryker (3) and Monroe is 2. She had a very dramatic entry into this world & we refer to her as our little miracle baby.

After a seemingly normal pregnancy, around 34 weeks, Monroe’s ultrasounds started showing highly abnormal results. We were told Monroe had Situs Ambiguous with “bi-lateral right sidedness.” They said she had a heart defect, and that her organs would be effected; maybe she’d have multiples of some organs, perhaps some wouldn’t even be present. It seemed Monroe’s spleen was missing and it looked like her liver took up her entire stomach. At the 37-38 week appointments, the prognosis worsened with the information that the primary vessel to Monroe’s heart appeared to be absent, and a backup vessel was doing its job. There was no guarantee the vessel would work outside the womb. They told Dylan & Ashleigh to be prepared for the worst - Monroe would likely need open heart surgery as soon as she was born and they didn’t think she’d survive. How we prayed for a miracle….

Ashleigh went into labor and gave birth to a seemingly perfect baby girl. We held our breath with every minute that passed. Monroe was airlifted to Birmingham and they ran EVERY TEST YOU CAN IMAGINE multiple times. Every single result came back perfect! There’s no other explanation; we believe we witnessed a miracle that day. And since then, Monroe has been the smiliest, happiest, most joyous child you’ve ever known. A tiny, unstoppable tank, who doesn’t know what an obstacle is.

Fast forward to a few weeks ago, Monroe’s left eyelid was swollen. Dylan and Ashleigh assumed she had an infection after having recently visited the natural springs. When the swelling wasn’t improving, they went to the pediatrician, who gave them an antibiotic and said it was likely an infection.or a bug bite. Her condition worsened quickly and her whole eye began to swell. Now slightly panicked, Dylan and Ashleigh took her to the E.R., where the doctor there also could not offer a diagnosis and suggested they see an eye specialist. A day later, the eye specialist took one look at it and said it looked “very concerning” and that Monroe should be seen by specialists in Birmingham immediately. It seemed like a slightly dramatic reaction, but Ashleigh packed a bag and away they went to Birmingham. What’s happened since then is a little like the nightmare that happened at the 34 week ultrasound.

Last week Monroe was diagnosed with Orbital Rhabdomyasarcoma (RMS), a rare (particularly rare at this age) and aggressive form of cancer found in soft tissue, or in this case, the muscle of Monroe’s eye. This week she will have a PET scan to determine if the cancer has metastasized to any other areas of her body, and she’ll have a port installed to receive treatment. It’s surreal, all of it.

As you can imagine, the family is stunned and frightened and find themselves fighting for their child’s life for what feels like a SECOND time. They will be required to travel 3 hours and fifteen minutes to Birmingham and back, every week for 24-36 weeks of chemo and radiation. Many of these visits will be overnights. The expenses will be great and will add up quickly. Dylan is the only one working, supporting a family of 5. All funds raised will support medical and travel costs and will support Dylan’s ability to be home when he’s able.

We thank you in advance for your support, love and prayers. We will attempt to keep everyone up to date with updates.