September is National Childhood Cancer Awareness Month. Join us today, September 23, 2014 as CURE Childhood Cancer honors CURE Kid Shayla Miller. Join our fight as CURE’s Kids Conquer Cancer One Day at a Time! Donate to Shayla’s fundraising page.
People say that children are “sensitive” to angels and spirits around them. Several weeks prior to Shayla being diagnosed with cancer, she was a normal three-year-old girl.
One day now stands out to me: we were riding in the car and she was talking to herself aloud. I asked, “Baby who are you talking to?” She replied, “The girls in my head momma.”
Several days later she was talking to herself aloud and I asked the same question. She replied again with, “the girls in my head momma.”
At the time I was working at a mental state hospital in Gainesville and was concerned that there was a problem. Can children “hear voices?” So one day I asked her, “Shayla where are these girls you are talking to?” She replied so sweetly and innocently, “They are talking to me in my head.”
Becoming more concerned I asked, “Are they on your head?” “No, silly momma they are inside my head talking!” she said, surprisingly, with a slight bit of anger. Later that week she was by herself in the dark hallway, talking. I confronted her with a slight bit of sternness in my voice and she replied, “I am taking to MY Jesus!” “What are you talking about, sweetheart?” “You just wouldn’t understand momma.”
August 18, 2010, Shayla was not feeling well so I took her to see her pediatrician. She was given an antibiotic for strep throat. On August 25th I took her back to her pediatrician for her recheck and she was given a clean bill of health. She had an amazing weekend, but then started vomiting more and more. I took her to the emergency room at our local hospital and on August 30th they diagnosed Shayla with pneumonia. She was given an antibiotic and we were sent home.
On my way to work on September 2, 2014, my mother called and said that Shayla was not doing well. She would not stop vomiting or screaming in pain. I rushed home and called her pediatrician who said, “Give her a popsicle, it’s just a virus, it will work itself out.” I screamed at her doctor, “Can’t you hear her screaming in pain? Something is wrong!”
I decided to take Shayla back to the ER. We sat there for hours and several people gave up their spots for my daughter to go ahead of them, seeing her pain. The ER doctor listened to her chest and said she does not have pneumonia. Why was I told two days ago that she did have pneumonia? They couldn’t answer my question and she was admitted for unexplained vomiting and dehydration. That evening her father and I sat with her in the hospital room. We were both so concerned and confused as to what was going on with our little girl.
That evening as I was lying with her in the bed she said something to me that I couldn’t understand. I looked at her and she looked right past me; almost like she was looking through me. Her father went and got a nurse and they rushed us out of the room and started working on her. They called the flight team to come and airlift her out; she was unresponsive. I remember one of the flight team members making me promise that I would not follow them. “Wait 20 minutes and then you can leave. Do not follow us for your safety and for Shayla’s.” I promised him that I would not follow and I would wait.
As soon as we arrived at Shands Hopsital a team of doctors took us into a conference room and explained that Shayla was postured out really bad when she arrived. That is a sign of pressure on the brain and she was already having scans completed. While they were explaining what the cause might be, they received a call. The CT scan showed a mass on her brain; she was already in emergency surgery to remove the mass.
The mass was malignant; cancer. When these words were spoken, my heart dropped and my world stopped! Her neurosurgeon was the best of the best. When her surgery was complete, he came to tell us the good and bad news. The good news: the mass was removed with amazing margins. The bad news: it was malignant and she would need to go through chemotherapy to kill the cancer cells. I was in shock. I just remember him saying, “We do great saving children but we can’t save them all.”
The next couple of months were rough but Shayla was doing great! Her chemotherapy treatments appeared to be working! She was having her stem cells harvested very successfully. When her ANC counts needed to be up they were great! Because the placement of the mass – the base of the skull – it is common for the “basic” humanly functions to be disturbed. These include eating, talking, and walking. Shayla had lost her ability to talk, but she was finally talking again! She was doing great in physical therapy. All her nurses and doctors spoke on several occasions that Shayla was going to be one of their success stories. Then November 10, 2010 hit us like a storm.
As I was sitting in her hospital room, after she had an amazing day of play and adventure, she was extremely tired. She was facing away from me, rolled over and mumbled something. I couldn’t understand so I got up and went to her. That’s when I noticed that she was having a seizure. I pushed the “code red” nurses button and waited. Nothing. No one came. I left my fiancé with her and I ran down the hall, screaming “She’s having a seizure, she’s having a seizure!” I ran to the nurses’ station and there was ONE nurse. We ran to our room and I had to “bag” my own daughter. The nurse told my fiancé to yell down the hall for help. He did and still nothing. At this time Shayla was foaming out of her mouth and the nurse was trying to keep me calm as I held the oxygen to Shayla’s mouth and nose. Finally after several minutes a flood of nurses and doctors came into her room to help.
I called Shayla’s father to come to the hospital and we were in for a long, restless, worried-filled night. She had small seizures all night, so to save her brain they scheduled a medically-induced coma. An MRI had been done, she was still being monitored by the EEG and one doctor pointed out to us that the seizures were still happening even in the coma. The results from the MRI were now in and it was not good. Her brain was being affected by what is called “sugarcoating.” This is where small tiny tumors are on the brain and they “burst,” irritating the brain, causing seizures. She has several million tiny tumors on her brain which means the chemotherapy had not been working like planned. Just the previous day we thought it was working. Her oncology doctor was so impressed at her improvements and made a comment, “I didn’t think Shayla would be playing like this when we first met.” The doctors said we had a tough decision ahead of us. We can try and wake her up, but the likeliness that she would wake up was not in our favor. Or, we could let her go peacefully and in no pain. They told us that she had lost most of her brain activity and was continuously having active seizures, despite the medicines to stop the seizures and the medical coma. IF she woke up she would not be Shayla.
We did not like seeing our precious girl suffering or in pain. Her father and I asked several times over and over, “What are the chances she could over come this?” We asked so many times, hoping to receive a different answer. We never did. They explained to us she would never wake up from the coma and that her body functions were already becoming weak and not functioning properly. Shayla was already passing to Heaven. The question was how were we, as her parents, going to make her passage peaceful? So on November 13, 2010, we made the tough decision. Family and friends filled into her hospital room to say our last goodbyes to our precious little girl, who never got to celebrate her 4th birthday. I held her one last time in my arms while she slept so peacefully. I held her hand as the doctor turned off all the machines; she turned blue within seconds. I looked at him in panic and he whispered, “It’s ok, it is normal.”
It happened all so fast. Within a matter of seconds my baby was gone. My precious baby whose birth lasted for many hours – over 15 hours of labor to bring this beautiful girl into the world – and it took just seconds for her to be gone forever. It is just not right. After all the tubes and everything were removed, the nurses asked if I would like to give her her final bath. She, with many female family and friends, bathed my precious girl one last time. We combed the tiny bit of hair that she had left, due to the chemo, and we washed her.