Zander

2020 EMBRACING BRAVE Denver Spring Recipient

Zander was born having focal seizures that made him turn blue. These episodes continued to increase in frequency, so Zander was transferred to a new hospital. Upon arriving there, a doctor on his team remembered an obscure case in one of his medical books from school, and figured out his diagnosis - Linear Nevus Sebaceous Syndrome (LNSS) - a genetic disorder that is not hereditary. A very terrifying diagnosis without many answers. Zander’s parents - during this first terrifying week in the NICU - decided to rest in the fact that because they did not know the answers, it left room for God & miracles. They were able to bring him home on an anti-epileptic med, but he continued to have break through seizures every couple of weeks. One day when he was close to three months old he had three seizures in one day. It left Zander’s mom, Hanni desperate, so she started to frantically look online for another mom who could relate to her. She found a video on YouTube of a boy who has Zander’\s rare disorder, and cried when she watched their video. They had caught one of the seizures that looked exactly like Zander’s on video. She reached out and Alexis immediately emailed her back. Her son was about five years older than Zander, and had had a right TPO reduction (so about a third of his brain removed) at the Cleveland Clinic and had been seizure free sense. She kept in contact with Alexis, and she kept subtly hinting that if they ever needed a second opinion that they should go to Cleveland. At around 3.5 months old Zander developed a rare form of epilepsy, called infantile spasms. He was having seizures 100% of the time while he was sleeping and 70-80% of the time that he was awake. They tried all of the absolutely terrible medicines to try to stop the seizures, but they were resistant. Their local team told them that his scans looked normal, so he was not a candidate for the TPO reduction surgery. They left the appointment being told there was essentially no hope. They would watch their smart vibrant baby disappear before their eyes. But, because of Alexis, they knew they had to go to Cleveland. Through several miracles, they were told that they saw a small malformation on a scan and that Zander was a candidate for surgery. At 6 months old he also had a right TPO reduction and shared the same seizure freedom day as Alexis’s little boy! God have given them a true miracle.

Over the next year, they held their breath and continually prayed that the seizures would not return. Zander healed and continued to work hard to make developmental progress. They celebrated his one year birthday, and was still seizure free! Then at the end of July 2019, he got a cold, and from the cold, an ear infection. The ear infection would not go away with meds. So, they ended up in the Emergency Room where doctors decided to do a shunt series MRI that revealed hydrocephalus (excess fluid on the brain). They told Zander’s family that he would need a surgery for shunt placement, but that he also had elevated white blood cells, possibly from the infection. Over the next few days his white blood cell counts did not improve, despite intense antibiotics. The fluid surrounding his brain continued to get worse. So, they decided to place an EVD (external drain) to buy time for his body to fight whatever infection was happening. When they did the surgery, they learned that Zander’s cerebrialspinal fluid in the space where he had had his resection was very thick like jelly - normally it’s the consistency of water. After nearly two weeks in children’s hospital, 2 brain surgeries, 4 sedations, daily labs, and so much more, Zander was diagnosed with brain cancer. Zander began chemotherapy here in Colorado and suffered through many battles with fever, neutropenia (a low immune system), and infections. He and his family have spent countless days and nights at the hospital in an effort to keep Zander healthy and infection free throughout his chemo treatments. In the middle of October, while undergoing treatments, Zander required an emergency shunt removal, then replacement of a new shunt only a few days later to control the fluid surrounding his brain. Then, in mid-November, Zander had follow-up scans to track how the tumors were responding to chemo so far. These new scans showed a new growth on one of the tumors located on the frontal lobe of his brain, along with significant growth in his midbrain and the top of his spinal column. Doctors had the discussion with Zander’s parents that if these new spots were found to be cancerous, they felt that Zander would have a very low chance of survival. The only option for treatment for the tumor on the frontal lobe would be the removal of his right frontal lobe. With Zander’s previous TPO surgery, this would mean that his entire right half of his brain will be removed and the results of that for Zander were not certain. Following the biopsy surgery, Zander’s family received the devastating news that his new growth was deemed cancerous by the pathologist during surgery. But God truly answered the family’s prayers a few days later when they were told that after a closer look at the biopsy samples, none of these new spots were cancer!! What a miracle!! The option of surgery was taken off of the table, and Zander continued on with chemo and eventually radiation treatments. Zander’s parents made the decision to move to Arizona in January in order for Zander to receive a different type of radiation treatment that is not offered here in Colorado. They will be there for almost 2 months, but at this point Zander is halfway through his radiation treatments and just celebrated his second birthday on January 24th , 2020! All funds raised by Just for J will help Zander’s family with the medical costs of his ongoing treatments and any other costs that have resulted from their temporary move and ongoing time at the hospital.- 2020