WHY WAS BEAUS BOX STARTED?
In December of 2013, our 10 month old son was diagnosed with a large rare brain tumor. We were at Ochsner's hospital for two weeks. We were away from home and family and staying in the Brenthouse. It wasn't how we had planned on spending our Christmas. We had a very sick child and a well three year old whose little life had also been turned upside down. The hospital's child life department had several activities to help raise the spirits of the children over the weeks we were there. Activities were not only for the patients but also for the siblings. Though it may sound simple, watching Beau's face light up over a toy at the hospital was immeasurable. It was something that no amount of medicine could achieve and it was the same for the other children. For just a moment, they forgot that they were indeed, in a hospital for Christmas.
Most people would be surprised to know that on Christmas day, Ochsner Children's Hospital's ICU was full. There was a child in every bed and like my son, the children were very sick. On Christmas morning, the children and their siblings woke up to presents that the hospital Santa had "delivered" overnight. The infants woke to see mobiles hanging over their beds and the children woke up to toys wrapped from Santa. There was a little bit of magic in the air.
On another hand, there is an added financial burden on the families who are in the hospital for the holidays. Many families are away from home. On top of mounting hospital bills, the hotel rooms, food and gas all take a toll on the family's income. Shopping for Christmas presents isn't something that you have the time, money or energy to do when your child is sick in the hospital.
On December 2, 2013, Our world changed. I brought our 9 1/2 month old son to Dr. Gary Birdsall's clinic to receive the second half of his first Flu shot. Dr. Birdsall's nurse asked if she could do a wellness screening on Beau and since I wasn't in a rush, I agreed. The nurse examined Beau, noting that he had not yet begun crawling and his head circumference was over the 100 percentile. She administered the Flu shot and we were able to leave. Shortly after, I received a phone call from the nurse stating that Dr. Birdsall had reviewed Beau's nurse visit and wanted to do an ultrasound of his fontanels (a baby's soft spots) at Children's hospital in New Orleans to check for possible fluid in his head. We were scheduled two days later. December the 4th, we did the ultrasound. After the tech was finished, the radiologist came into the room and looked at the screen. I thought it was a little unusual, but I had never been to a child's hospital before and thought that maybe it was their protocol. The radiologist said that there was area in the center of his brain that didn't have blood flow. He said that there was "something there that wasn't supposed to be" and had us go to the ER so that they could do an MRI. I remember sitting in the surgery waiting room thinking that we were wasting our time because there could be nothing wrong with Beau. He was absolutely perfect. He was a very happy baby, always smiling and he was never sick but I was wrong. I was very wrong.
Beau's diagnosis was Hydrocephalus (accumulation of fluid on the brain) and a large brain tumor in his third ventricle. Beau's brain tumor was in the center of his brain and was almost 3 inches around. They believed that it would be a very rare choroid plexus tumor which could be cancerous or benign. He required brain surgery and it would need to be done as soon as possible. He was scheduled for a total resection five days later. I can't begin to explain the sorrow that instantly consumed us. We were worried that he would not survive the surgery, though I never said it out loud because that would make it too real. We were worried that if he made it through the surgery, what quality of life would he have? We were also worried about what effect would this surgery have on our 3 year old child Jack's well being? Due to its rarity, the neurosurgeon at Children's had never operated on a Choroid plexus tumor. We felt that it was in Beau's best interest to get a second opinion and find a doctor who had experience dealing with that type of tumor, so we cancelled the surgery at Children's Hospital and met with two other doctors the next week. It was the hardest decision of our lives, but we picked Dr. Cuong Bui, Pediatric Neurosurgeon at Ochsner for Children's Hospital. He had experience with choroid plexus tumors and he felt that he could do the surgery without the added invasive procedure of an angiogram. The surgery was scheduled for December 20th.
On December 20th we arrived at the hospital and at 730am, we handed our precious baby over to the anesthesiologist. It was as if someone had ripped my heart out. It hurt so deep inside. We spent the next eleven hours trying not to think about what they were doing to our baby, wondering what was going on and praying that everything was going well. It was a long day. At 630pm Dr. Bui came out to talk to us. The surgery was finished and successful. They cut across Beau"s scalp in a zig-zag pattern from ear to ear. They removed a portion of his skull and cut between the spheres of his brain, having to cut only a little of his left brain matter to reach the tumor. It was removed in its entirety and appeared to be benign. The portion of his skull was replaced and held together with dissolvable plates and screws. There was no metal in his head. It was the best possible outcome for which they had hoped.
Beau spent the night of his surgery in ICU on the vent which they removed in the morning. As soon as they pulled the tube out of his mouth he cried, "mama". I was so happy to hear it because I had been so scared that I was never going to hear him say it again. Beau quickly began recovering. December 22nd he was moved to a regular room. He was sitting up and even smiling. Beau was scheduled to be discharged on Christmas eve. Unfortunately, his recovery was short lived for the next day Beau stopped tolerating his feedings. He started throwing everything up, violently, each time he ate. By Christmas eve he was throwing up without eating. Beau's health was noticeably declining. Around 530pm I noticed that Beau seemed to be stuck in a stare. I though he was possibly having a seizure but then I was able to catch his attention. A few minutes later, he threw up again but it was different. It was all bubbles. I called the nurse to come in and proceeded to remove his gown. When I tried to sit him up, I couldn't. His body was stiff. I called the nurse yet again. As soon as she came into the room he started seizing. After the seizure was over the nurse said that I could pick him up and she was going to call the doctor. I picked him up and was standing in the room holding him and crying. I glanced over my shoulder and his eyes looked glassy and dark. I remember thinking, "Beau, let mama look at you". I cradled him down to my arms and saw that his lips were blue. He wasn't breathing and I never knew it. He had gone into respiratory failure. At 6pm on Christmas eve, Beau was coded. I watched as a room full of doctors and nurses pumped air and medicine into his little body in disbelief. I will never get that image out of my head. They transported him back to PICU and he was put on a vent. Beau spent his first Christmas fighting for his life. I remember standing next to his bed crying and singing to him "Have yourself a merry little Christmas...Next year all our troubles will be miles away". I never prayed more in my life.
God has a way of showing you who God is and that he is with you. Beau's nurse in PICU was a young woman. I asked her if she had Children since she was working on Christmas eve. She told me that she was Jewish and did not celebrate Christmas and she would work on Christmas so that her coworkers could be home with their children. Despite her personal beliefs, around 3 am she walked into Beau's room and hung the tiniest stocking from his IV pole. She did it for him. She did it for us. As much as I was hurting, I couldn't help but smile. I knew at that moment that everything was going to be alright. About an hour later she came into the room with about a dozen wrapped presents for Beau and Jack. Before Jack woke up, I sneaked down into our room at the Brent House with his gifts. He couldn't believe that Santa had found him all the way in New Orleans! Christmas afternoon, Beau started breathing on his own and was taken off of the vent. He was started on an anti-seizure medication.The PICU doctor told us had we gone home like we were supposed to, the ambulance would not have been fast enough. It was our Christmas miracle.
In the days following, Beau began recovering quickly again. He stayed in ICU for a few more days and was transferred to the regular floor. He started tolerating his bottles and baby food. He had no other seizures. Late New years eve, we were finally able to bring our baby home. Just before leaving we received his pathology results....Choroid Plexus Papilloma. The tumor was benign!
After discharge, Beau's journey was remarkable. With help from home OT and PT, Beau began crawling two days before his first birthday and started walking a few months later. For a year, we attached Beau to a monitor at night that would go off in case he stopped breathing from a seizure. I couldn't sleep without it. A year after his surgery, Beau was weaned off of his seizure medication. He hasn't had another seizure since we left the hospital. Beau has had MRI's periodically since his discharge and has remained tumor free. His neurosurgeon says the chances of the tumor coming back at this point are low, but he will continue checking it yearly until he is 5. Beau is scheduled for his next MRI in the summer of 2017. Beau is 3 years old now and he is doing great. He is progressing with no delays. Thanks to a thorough physician, Dr. Gary Birdsall and an experienced neurosurgeon, Dr. Cuong Bui, Beau has a bright future ahead of him. Our greatest thanks is to God for sending them to us along with everyone else who cared for and prayed for Beau.