LeviStrong

Our world was rocked at the end of September 2017. Levi began having what seemed like focal seizures (not your typical shaking seizure, he almost looked like he was falling asleep, which would last a few seconds and then he was back to normal). Well, over the course of the next 2 days, we would take 2 more trips to the ER as he was rapidly having more episodes- up to 20 in a cluster. The ER doctor ordered a CT scan at the second visit. He also said he would consult Children’s again. A while later we were told that they would be transferring Levi by ambulance down to Children’s. We got down to Children’s at about 2am. They hooked Levi up to an EEG and we all tried to get sleep. Later that morning we met the neurologist on call. He started the conversation with “as you know the CT scan showed a possible cyst.” Over the next few days a battery of tests were performed. We were told that if this was a brain tumor it was likely low grade. Again they still weren’t sure. We were discharged home after 5 days with the goal of getting his seizures under control and deciding from there what the next step was, to figure out what was in his brain. Two weeks later we were told that they wanted to biopsy the area. We were told that an open brain biopsy would be the best option, but of course there were risks including infection, bleeding, left sided weakness and death. We scrambled to come to terms with the idea that our child’s brain needed to be cut into and he may not come out the same way he went in. Thankfully, by Gods grace Levi came out of surgery the same little boy that he went in as. His recovery was tedious for us- making sure to keep his stitches clean, that he didn’t bang his head with his bone being stitched back in,etc. On November 15th, we got the news we were dreading. The neurosurgeon confirmed it was a Brain Tumor. The official name is a diffuse Astrocytoma grade 2. It has little tentacles that infiltrate normal brain tissue and along with the size and area of the brain, it is inoperable. We met with the neuro-oncologist, who recommended wait and watch, which means an MRI every 3 months. As long as it stays stable, we would not have to start Chemo and that chemo does not usually work well for this type of tumor, and because Levi is only 2, he is not a candidate for radiation therapy. Our goal would still be to try and control his seizures.

Around the holidays, Levi’s seizures seemed to be worsening. He went from one cluster a day to 4-6 clusters a day. Each cluster could have 10-20 seizures. He was falling while playing and couldn’t be left to play on his own, in fear of him hurting himself. After another hospitalization they told us that it may be time to start looking at epilepsy surgery (the part of the brain is removed with the most seizure activity to try and control seizures). This would require “mapping”- imaging to try and pinpoint where the area of most seizure activity was. After 2 more recent hospitalizations and adding a fourth medication to our daily routine, miraculously Levi was seizure free for about 6 weeks, but then seizures came back. Levi was having about 10 seizures a day. At that point, testing began for epilepsy surgery. He had a depth EEG, which surgically placed probes into his brain to try to capture seizure activity and where it is coming from. Levi’s testing went well and after only 5 days, the probes were able to be removed and he was able to be discharged. Levi had a resection on May 30, 2019 to get rid of some of the tumor that was causing seizures. We also found out that Levi’s tumor is actually a DNET- Dysembryoplastic neuroepithelial tumor. He was seizure free for 18 months and 1 day. Since then seizures had gradually begun happening more frequently. After having increasing seizures for 15 months and exhausting what options we thought we have at our home hospital, we began seeking second opinions. We tried another round of different medications to see if they can control the seizures and that did not yield any help.

We then reached out to multiple other hospitals, including Boston Children’s Hospital, Mayo Clinic and the neurosurgeons at St Jude. Dr Klimo and Dr. Shimony at St Jude Childrens Research Hospital seemed to have the best plan and so in December of 2022, we traveled down to Memphis, TN to have a resection done. During the pre-op testing it was determined that Levi’s seizures were expanding to the left side of the brain, known as generalizing. If the left side of Levi’s brain began to seize, he would no longer be a surgical candidate. It was recommended that Levi also have a Corpus Callosotomy, a surgery that cuts the brain in half, separating the left side from the right side, to help prevent seizures from generalizing. Levi had a surgery to debulk the tumor and stop seizures on December 8th, 2022. The neurosurgeons were able to remove roughly a tennis ball size amount of tumor and abnormal brain tissue. He was discharged December 12/12/2022 and we drove home to Wisconsin. Unfortunately, Levi’s swelling increased and it was recommended that he be readmitted because they were worried that his incision might rupture. We then drove right back down to Tennessee and Levi was admitted. The doctor performed a lumbar puncture to try and drain some of the excess fluid. After 6 days in the hospital we were able to be discharged and enjoy Christmas all together, before traveling down to Tennessee on 12/26/2022 for a post-op check. Levi began having seizures in January 2023 and we again traveled down to Tennessee for another surgery. Levi had a Corpus Callosotomy on 2/2/23 and has been seizure free since. Levi was officially accepted as a St Jude patient and had his first visit to St Jude in May 2023. We had 3 month scans and check ups.

On 1/26/2024 we learned that Levi’s tumor had progressed and he needed to begin treatment. Because of the type of tumor that he has, it does not respond well to traditional chemotherapy and after consulting neurosurgery, surgery was not an option without causing permanent left sided paralysis. Levi’s Neuro-Oncologist recommended a clinical trial treatment. On 2/7/2024 our family traveled down to Memphis for Levi to have all of the eligibility testing done. Levi was officially accepted to the clinical trial on 2/13/2024 and received his first dose on 2/14/2024. This clinical trial requires Levi to remain in Memphis for the first month, and then return to Memphis monthly. Levi will be on this treatment for at least the next two years as long as there are not toxicities.