Cali’s Story Cali was our 11 yr old little princess that fought hard to overcome three very aggressive fast-growing brain tumors. On June 25, 2007, almost 2 weeks after Cali’s first birthday, we were told the devastating news that Cali had a stage IV, malignant brain tumor known as a Medulloblastoma, that was ¼ the size of her brain and setting directly on top of her cerebellum. After a very successful resection, 7 months of chemotherapy, including one extremely high dose, followed by an autologous stem cell (bone marrow) transplant in Feb 2008, Cali put the cancer in remission. However, the hydrocephalous that was created from that tumor generated numerous physiological ailments. Cali lost the ability to move her eyes up and down, she could no longer cry, and her vision was severely impaired, but she remained “lion strong”. She championed over every hurdle placed before her over the next year and learned to talk, use a walker, eat on her own and had one of the best personalities ever! We prayed fervently that God would heal her and give her the strength she needed to fight this disease each and every day. Never had I seen a more inspirational child and we were blessed to still have our angel with us. When we first arrived at Duke, we were sleeping in the waiting room because we could not afford a hotel room for that long, and there was a long waiting list of people trying to get a room at the Ronald McDonald House of Durham. We finally got in after almost 2 weeks and it has become our home away from home. It was a place to rest, nourish, and just briefly take our minds off what was going on in our life. ​The months passed and before we knew it Christmas was right around the corner. We begged the doctors to let us take Cali home for the holidays because we had been in the hospital for much of that year. They agreed and it was truly the best Christmas gift we could have ever asked for. Cali’s hair had grown back a beautiful blonde color and she was such a happy little girl. On January 8, 2009, we took her back to Duke for a regular scheduled MRI. There were no signs of change with her so Sara and I felt good about the scans being clean. We begged the radiologist to give us the results, and he said that as far as he could tell, the scans looked good, but the doctor would call us later that night to confirm. The entire ride home was filled with smiles as we listened to Chris Daughtry, Cali’s favorite artist, and had the best time singing along with her at the top of our lungs! That night around 7pm the phone rang, and Sara answered. The wait for that phone call seemed like an eternity, and within seconds, I knew that our worst fears had come true. Sara began sobbing uncontrollably, as the phone shivered in her hand, and I too began to cry out with anger. Her cancer had returned, only this time in a different part of her brain. The second craniotomy was excruciating for Cali because in order to reach the tumor, the surgeons had to completely remove the right hemisphere of her skull. When the operation was complete, the doctors returned and told us that they could only remove approximately 90% of the mass because the rest had invaded her brainstem. My heart stopped, it was hard to breathe, and I began to break down. Those words simply translated to this monster returning sooner than later. The pathology report concluded that the tumor was an AT/RT, one of the most deadly and aggressive pediatric brain tumors known to exist. Cali started her first round of chemo on Feb 16, 2009 and was scheduled to have 52 weeks of it. Then on April 1, 2009, after only 2 rounds of treatment, the tumor had returned and was just as big. This tumor, showing its resistance to chemo, was very bloody and swollen. It was at that moment when Sara and I were faced with one of the toughest decisions we would ever have to make (so we thought). We could either do nothing and spend as many quality days with our daughter until her eventual death or have total brain and spine radiation performed on a child that had not even reached her 3rd birthday. The doctor told us that if we chose to have the radiation, the consequences would be “devastating”, but the thought of merely letting Cali die after she had fought so hard to stay with us was unbearable. On April 20, 2009, Cali started radiation, something we prayed would never have to happen on our little girl’s young, developing brain, and had the therapy for 6 weeks straight. During this time, we were able to stay at the RMH of Durham so we could get to our appointments daily, as well as stay close to the hospital in case there was ever an emergency. When it was all said and done the post-radiation MRI showed that Cali’s tumor was completely gone, and everyone rejoiced! Our hearts were filled with joy and we were all celebrating God’s mighty touch, but little did we know that much darker days were ahead of us. ​Cali was cancer free for 8 years but at a devastating cost. Soon after her radiation treatment ended, she lost the ability to talk, her cognitive function was destroyed, she began having massive seizures, she could no longer eat without a feeding tube, she became wheelchair bound, and her personality was gone. She became very immunocompromised over the years, being diagnosed with viral encephalopathy and bacterial meningitis, where she had to have her internal shunt taken out and an external ventricular drain placed, surgically, once a week for 6 weeks until the meningitis resolved. Being the strongest individual I have ever known, Cali rebounded over and over and always with a smile. In 2018, Cali caught the flu, then RSV, and having had all the chemo and radiation that she had, her body was no longer able to fight it off. She had to be intubated 3 times in 3 months and her lungs could not handle it anymore. We then made the difficult decision to take her off life support. Our sweet Cali passed away on May 4, 2018. During this time, we had family come visit from NY, FL, and SC and the Ronald McDonald House was able to give us a private room, free of charge (always!), to accommodate everyone during Cali’s end of life up at Duke.  Thank you for supporting me and the more than 300,000 kids worldwide who will be diagnosed with cancer this year. By sharing the gifts of your time, talent and money with the St. Baldrick's Foundation, you're supporting research to give all kids with cancer a better chance for a cure.