Help Corey and Addie with Medical Expenses

First, Corey and I want to say thank you to everyone who has reached out, prayed for us, and has offered help in countless other ways. We are truly blessed with an amazing community of people to walk alongside us during these past few weeks.

Second, we decided to create a CaringBridge to keep you all up to date as Corey continues through his treatment. I know many of you have reached out to Corey or myself for updates, but we figured this would be easier and also allow for Corey to rest during his treatment and not feel overwhelmed with responding to messages :)

For those who might have missed all the recent events regarding Corey's health here is a little timeline to catch you up.

In Spring 2023 Corey began to experience what doctors said was severe Acid Reflux. He was put on medication and told to monitor his diet to manage the symptoms. From Spring until Fall of 2023 symptoms became worse, and these "episodes" as we called them became more intense. In December 2023 we requested a referral from his Primary Care Doctor for a consult with Neurology. in St. Louis. Before that referral was sent, they completed an EEG and MRI on Corey.

On Monday December 18th we received results from his MRI showing there was a mass on his left frontal lobe. Which confirmed our suspicion that these "episodes" he had been having since Spring were silent seizures. We were told a referral would be sent to St. Louis to get an appointment with neurology. After discussing the results from MRI with a close family friend who works in the medical field we were advised to head to St. Louis on our own, and walk through the ER at Barnes Jewish Hosptial requesting neurology evaluation for Corey.

On Tuesday Morning December 19th we walked into the ER explaining the results we received and needing to see neurology. They completed additional MRI, CT, and other tests on Corey to confirm the mass and its location. Corey also had one of his silent seizures while Neurology consult was in the room, and he confirmed that Corey was in fact having seizures. They quickly got him on anti-seizure medication and told us the next step was meeting with neurosurgery to discuss surgery to remove the tumor. For the first time since early Spring 2023 Corey finally was not having multiple seizures a day (which was a new and strange feeling for him). When neurosurgery arrived, they reviewed the MRI with us and discussed how the tests were showing it was a high-grade glioma that originated in the brain. They then discussed next steps and told Corey they wanted to admit him into the hospital with hopes they could get him in for surgery within the week.

Wednesday December 20th, was a day of waiting and getting more information on the potential route for surgery they would take. When we were in the ER we were informed who our neurosurgeon would be but that he was going to be consulting with the whole neurosurgery department on best route to take because of location of Corey's tumor. We were told that the tumor sits on a major artery of the left side of the brain that if not removed properly would lead to loss of functions that the left side of the brain is responsible for. Once admitted to the hospital we were told that our neurosurgeon was changing to a neurosurgeon who specializes in tricky location of brain tumors. Wednesday evening we met with the doctor who would be performing the surgery and he walked us through the process he would be taking to remove a portion of a tumor. He said they would perform an image guided needle biopsy. Once a piece of the tumor is removed, they would send it off to pathology for a biopsy. Then, they would do Laser Therapy to burn off the remaining tissue but will not be able to treat / remove all of it in one sitting due to the location. They hoped to remove about 50% to 66% of the remaining tumor with Laser Therapy. They repeated that if they treated/removed all at once it would lead to potential permeant movement and language loss for Corey. The doctor said he was pushing for Corey to get surgery done on Thursday or Friday but there was a small chance we would have to wait a week to get into the surgery schedule.

Thursday December 21st, we were told in the morning it was looking like surgery would not happen until Friday or next week. After lunch time we had someone come in and say "we are going to prep you for surgery within the hour". We knew this was a God thing getting Corey in for surgery that quickly. They prepped him for surgery and he was taken down at 1PM with the surgery starting around 3PM that day. He was in surgery for about 4 hours, and then was in recovery for an hour before anyone was able to go and visit him. The surgeon spoke with me, and said the surgery went better than expected. They have the biopsy and sent it off to pathology, at this point they had suspicions of what the biopsy would show but could not 100% say until biopsy results were back. He said with the Laser Therapy he was actually able to remove 85% of the remaining sections of the tumor. He said he would follow up with us in two weeks with the biopsy results and next steps plan.

Corey spent Friday 22nd and Saturday morning 23rd in the hospital recovering before being discharged to go home. The following few weeks he rested and took the time needed to recover before his follow up appointment with neurosurgery.

January 3rd, 2024 he had his follow up with the neurosurgeon where he went over the pathology report and stated it was a grade three glioma that is cancerous. He said "this is the best kind of tumor under the grade 3 category and treatable". He said that the next steps will be doing a combination treatment of radiation and chemotherapy. He reassured Corey that his prognosis is good!

January 9th, 2024 we met with radiation doctor and discussed his plan for treating Corey. He said the tumor he has responds better to treatment than some and is less aggressive. He also discussed with Corey and I a clinical trial that is using Proton Therapy vs Photon Therapy in the form of radiation and felt Corey would be a great candidate for it. He said the biggest impact of doing Proton therapy is studies showing a decreased impact on cognitive functioning long term. They said next steps would be CT, MRI, and mask fitting for radiation before they would start treatment. They said start date would depend upon if we decided to move forward with normal radiation or the Proton Therapy trial radiation. They said radiation would be 6.5 to 7 weeks with five days a week of treatment.

January 10th we had two appointments, one with Neurology and the other with Oncology. In Corey's Neurology appointment they communicated their plan for keeping him on the anti-seizure medication long term and would reevaluate in 2-3 years. In Corey's oncology appointment the doctor reiterated this was the best of the grade three tumors to have and is like the "runt of grade three". He discussed with us that he would let radiation do their treatment first and then let Corey have a month off for recovery before starting oral chemotherapy treatment. He would take the chemotherapy medication five days straight once a month for a year. He said they would do MRI every three months until they got consistent good MRI results and would move it to every four months.

Corey and I decided we wanted him to do the clinical trial because of the all the long term benefits it would provide. The following weeks after his appointments in January we waited to hear from insurance on approving coverage for Proton Therapy Radiation Trial. We were denied by insurance, then the doctors appealed, then denied by their level two process, then doctors appealed again, and the level three process entailed having a panel of third-party physicians review the request and decide. Finally at the end of January / Beginning of February we got word that we won the appeal and Corey would be receiving Proton Radiation Treatment. He had previously been fitted for his radiation mask in mid-January, so the next step was starting treatment.

Corey official started Proton Therapy radiation treatment on Monday February 5th, and is currently in the middle of week three of treatment. He has completed 13 of 33. Treatment has been going well with the side effects he has been experiencing being fatigue, body aches, headaches, and occasional brain fog. All normal side effects for the treatment he has been receiving.

We plan to update this page with things as Corey goes through radiation, Chemotherapy and long term in general.

Again, thank you all for all the prayers!

Sincerely,

The Sudhoffs