I had a reporter contact me about doing a story on Bella and asked for her diagnosis and treatment story. As I was typing it, tears were flooding my face because I try not to go back there often. I try not to think of how close we came to almost losing our Bella-boo. She is so strong and God is so amazing!!!! Im going to attach the story I sent to the reporter below for those of you whod like to read it: On October 1, 2013, Bella complained of stomach pain that had her doubled over. I thought she needed to have her appendix removed or something. I took her to the urgent care near our house. They told me she had a kidney infection due to a UTI and sent us home with antibiotics. That night, Bella hardly got any sleep. She was in so much pain. I called the Childrens Healthcare of Atlanta nurses hotline in the middle of the night and they said to call her pediatrician first thing that morning and have her seen. I brought her in at 8:30 the next morning to her pediatrician who couldnt find a reason for her pain. They sent us to Kennestone Hospital for imaging. They did a CT and an ultrasound of back and front abdomen. Both showed that she had an enlarged spleen but because she was feverish, they werent too concerned (bc apparently your spleen can become enlarged when you have a fever). They sent us home and told us to wait for the pediatrician to call us with results. About 2 hours later, the pediatrician called and said to head straight to the emergency room at Scottish Rite Childrens Hospital in Atlanta. I was terrified. I didnt even know where the hospital was so I was driving like a maniac down the highway while using Siri on my iPhone to get me there. Her pediatrician had called ahead so they were anticipating us so we didnt wait long before getting a curtained off room in the emergency area. They ran lots of blood tests and at this point, Bellas fever was high, she was slurring words and making sentences that didnt make any sense, she was exhausted, she was becoming a hard stick from all the pokes previously that day, and we were all nervous about the results. Finally a doctor walked into the room and said, Im sorry to tell you this, but it looks like your daughter has Leukemia. My heart sank. All of this from a seemingly innocent stomach ache the day before? What made matters worse: my older sister had a son who had Leukemia and lost his battle just after his 2nd birthday. Leukemia was not a stranger to me-I knew a little about it, but never thought it would strike my own. The doctor took me into another room where my mother and the kids papa (their dads dad who is still really close with us) were waiting. He told them and all I really remember is papa literally screaming noooo and crying loudly. I asked the doctor how her prognosis was and he said they seemed to have caught it early and that she would be admitted to the Aflac cancer unit that night. All of the people there were so incredibly helpful and understanding. The first day there (October 3, 2014) Bella mostly rested as they tested her for type of leukemia (pre-B cell Acute Lymphoblastic Leukemia) and blood counts. The following morning, October 4, 2014, Bella was taken for her first surgery-to install a port in her chest to make getting chemo and having labs drawn much easier on her little body. That afternoon, she received her first bag of chemotherapy medicine and so the journey began. Bella had been doing great with her treatments (besides losing her hair and the usual grumpiness that is associated with steroid pulses) but on March 10, 2014-I took her to the clinic because she got a fever. They sent her over to the hospital and after 10 days in the Aflac unit she kept progressively getting worse. She began vomiting blood and needed oxygen most of the day. They sent her to PICU (Pediatric Intensive Care Unit). Two days into our PICU stay, Bella began needing more and more oxygen, she couldnt breathe on her own. They had to intubate her on an emergent basis. She was put on a ventilator. She was still dropping her O2 stats. They moved her to an oscillator. This is a machine that vibrates your lungs and keeps them from closing. There were days when I thought I was going to lose her. They sent chaplains and social workers in regularly to talk and pray with me. She developed 2 pneumothoraxses (holes in her lungs where air leaks into the tissue) and had to have 2 chest tubes inserted. She had an art line in her left wrist, a picc line In her left upper arm, a central line in her left thigh, a urine catheter, and numerous NG and EG tubes; not to mention her breathing tube). She also had the worst sub-q (under skin) air of anyone the doctors and nurses had seen. Her skin was so stretched and inflated, it literally ripped in a few places. After weeks on the machine with little to no improvement, Bella slowly began to improve. Finally, after 5 weeks in PICU, she was able to leave the floor and we were sent to in-patient rehab. Bella excelled at relearning to walk and talk and write. During the first week of her stay, she had a seizure (the first one ever) that lasted appx 23 mins. They still dont know what caused the seizure but her brain scan afterwards showed some brain death. They said it wouldnt be too concerning and that in most patients with similar brain death, the side effects they see are limited attention span and difficulty learning or taking on new activities. Despite reports, Bella is an incredibly smart, artistic, person. Shes always smiling and never lets cancer get the best of her. We were discharged from the hospital after 71 days (of which I was with her the entire time and away from my son. He would come on weekends to visit but didnt get to see Bella until she got to the rehab floor which was incredibly hard on all of us). She then attended outpatient rehab for several weeks and graduated from the program. Her walking still needs improvement but is getting better daily. Im just glad shes on the move! :)
Posted on: Mon, 04 Aug 2014 05:49:16 +0000
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