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November 21, 2017

I'm not much of a writer and my mind has been all over the map in the past 24 hours. Yesterday was the hardest day of our lives, to date. One cannot be prepared to sit in a doctors office and be told their child has Cancer. Our child? Our sweet spunky 15 month old has cancer? The pit in my stomach is real? Can you start over? I'm suffocating, we're suffocating. Oh please, God. But there's medicine, and chemotherapy, and really intelligent well practiced physicians. And there was a lot more said and only a little retained. Yesterday was a really really hard and long day. Sloane was diagnosed with bilateral retinoblastomas, also known as cancerous tumors in both eyes. She will be having an MRI under anesthesia on Friday morning to rule out a tumor in her brain. She will then have surgery to get a port placed in her chest for 6-8 months of systemic chemotherapy. Surgery will follow the chemo and her eyes will be followed closely. We became a part of the Riley Family ye...

One Year

I remember a few things about the morning we went to Riley. 1) I woke up and curled my hair. 2) I did not want to be a frequent member of the Simon family member parking garage. 3) I remember the way the fellow couldn’t look us in the eye before she left the room to get Dr. Plager. I thought curling my hair would wake me up, slap me out of the nightmare that was the past 12 hours with google at my fingertips. I even tried makeup, only to be cried off in the next few hours. The parking garage led to the waiting room, and I didn’t want any part of it. There were so many kids, playing. And I just kept praying that my kid wouldn’t be one of them. For sake of privacy, we will just call her the fellow. She was kind and she was gentle. She didn’t talk much, she kept doing all these funny things to get Sloane to look certain ways, she kept repeating them and she was doing it to both eyes and that’s when we knew. We didn’t need Dr. Plager to tell us what we already knew. But she brought him i...

Saint Lucy

God is GOOD is an understatement. We spoke with Sloane's oncologist this morning. The MRI showed no brain tumors and no optic nerve involvement. Austin and I took a huge deep breath, that felt good. Unfortunately, her left eye is as advanced as the doctors originally thought. We are awaiting staging for her right eye to determine further treatment. The left eye will need to be removed, it will not be responsive to any type of chemotherapy and the retina is completely detached and basically covered in tumor. The staging of her right eye will determine if she needs systemic chemotherapy or local chemotherapy (chemo injected into her eye). We should know more this afternoon. If the doctors feel that her right eye will need systemic chemo then we will proceed with a port placement hopefully this week. I hope this all makes sense. Looking back and reflecting on this past week almost brings me to my knees. God works in very myster...

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