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Welcome to Natalie's CaringBridge website. We've created it to keep friends and family updated on Natalie's status as medical staff work to remove a brain tumor. Get started by reading the introduction to our website, My Story.
Visit often to read the latest journal entries, visit the photo gallery, and write us a note in our guestbook.
(UPDATED ON APRIL 14, 2016) RECURRENCE OF BRAIN TUMOR written by Kent On April 13th, Natalie and I drove to Mayo Clinic to attend Natalie's 6 month routine check-up which was comprised of an MRIs scheduled at 8:55am and a visit with her Medical Oncologist, Dr. Jan Buckner, at 1PM. Everything seemed to start off well, as our friend Kelly came to our home at 7am to assist with getting Bella ready for school and getting on the bus. Upon arrival to the Mayo Clinic, I dropped Natalie off at the door to the Charlton Building, so she could check in for her scheduled MRI. Everything seemed to go as usual, as the nurses spent quite a bit of time trying to insert the IV into a vein in Natalie's arm to inject the contrast dye. After approximately 1.5 hours Natalie had shown up to the Gonda Building (where I was sitting listening to someone play piano) with athletic wrap around her arm in multiple places from being stuck multiple times with an IV needle by the nurses in the Diagnostic Imaging area.
At 1PM, Natalie and I sat down on the bench seat in one of Dr. Buckner's patient rooms. Upon entering the room, he was his normal friendly self. But Natalie & I immediately noticed something different in his approach. He normally would start off by saying, "Well Natalie, your scans look great". Instead he sat down and asked us how things were going for Natalie, and then he proceeded to review Natalie's medication list with her. Once he had updated this list, he had Natalie sit down on the patient table, and he proceeded to have her run through the manual muscle tests followed by a battery of motor tests. He didn't seem to pay as close attention to her performance as usual.
Dr. Buckner asked Natalie to sit down. By his hesitancy, we both knew what was coming. He said, "We have the scans, but the Radiologist has not yet reported on them". He then proceeded to tell us that an unusual mass is showing up on the scan, and that it is not supposed to be there. I then asked him if it was a tumor, and he responded with, "I can reasonably assure you that it is". He then pointed to the area of the MRI scan with the tumor. It was on the posterior edge of the location where her previous tumor had been removed. It was the location where her previous neuro-surgeon had left some residual tumor due to fear of damaging Natalie's motor strip on her brain. We had thought that the radiation & chemotherapy had eradicated it, or that was at least what it was supposed to do. He then said it was moderate in size, but could not give us an exact measurement. He then said he is very sorry to have had to deliver this news.
After a brief moment of dealing with emotions that come with being told you or the person you love has cancer again, he proceeded to tell us that he has some options on the table still available. He said that he could utilize Temozolomide or Lomustine, which are chemotherapy agents used to treat these types of brain tumors. He said he would check with the radio-oncologist to see if Natalie can receive any more radiation to the brain after previously receiving the 6 weeks of radiation she had received in March 2013. He also said he would contact the Neuro-Surgeon to see if surgery was an option based on the location of the tumor.
After consulting with the neuro-surgeon, he said that he would not advise surgery to attempt to remove all or part of the tumor, as it will cause significant weakness on one side of Natalie's body. He said the weakness could be significant enough to require Natalie to need a wheelchair for mobility. The radio-oncologist also advised against further radiation to the brain. He said that further radiation to the brain will most likely cause significant memory loss and permanent confusion. He said that a chemotherapy agent called Lomustine could be potentially used, but he would need to have Natalie get some lab work completed. He explained that the chemotherapy drug, Lomustine, is well known for causing a significant decrease in the number of white blood cells and platelets which can lead to serious infection. Natalie had taken this drug as part of a 3 drug chemotherapy regime called PCV which was cycled every 42 days during her previous treatment for this disease. Natalie had to discontinue this drug due to hematologic toxicity (low blood cell/platelet counts).
Dr. Buckner then provided his personal recommendation which was to have Natalie go through the allergy desensitization program immediately followed by starting a chemotherapy regime utilizing the drug Temozolomide. Dr. Buckner believes that having Natalie take a very low dose of this medication daily will hopefully shrink the tumor and prevent it from growing for some period of time. He also believes that having Natalie go through the allergy desensitization program will prevent Natalie from suffering from the same allergic reactions (Difficulty breathing & hives from head-to-toe) she had experienced while taking this drug from July-December 2012. This was the first drug Natalie had been given post surgery in 2012 to with the intent of trying to eradicate the remaining residual tumor cells left behind by the neuro-surgeon.
Natalie and I will return to Mayo Clinic to see theneuro-surgeon and Dr. Buckner on April 21st to further discuss the risksassociated with attempting surgical removal of the tumor. We will also make our decision on this day on how we will proceed with treating this recurrent brain tumor.
Thank you again for taking the time to follow Natalie's story. She will provide all future updates on this site, as we move forward with treatment.
(UPDATED ON JUNE 1, 2012) INITIAL DIAGNOSIS OF BRAIN TUMOR written by Kent At approximately 6:30pm on May 29th, Natalie departed for Walmart to return some previously purchased items. Before departing, she asked Kent to give Bella a bath while promising Bella that she would be home to put her to bed. Bella fussed a bit while insisting that she go with Natalie to the store. After some convincing, Bella stopped fussing, and Natalie departed her home enroute to Walmart. Upon arrival to Walmart, Natalie reached for a shopping cart. While reaching for the cart, Natalie collapsed onto the floor due to a seizure. At approximately 8:30pm, Natalie's husband, Kent, received a phone call from Natalie's cell phone. The voice on the other end of the phone introduced himself as a doctor from the Emergency Room Department at St. Francis Medical Center. The doctor explained that Natalie had been transported via ambulance from Walmart to St. Francis Medical Center. He stated that Natalie is doing fine and that she was there as a result of having a seizure at Walmart. He explained that Natalie was awake and that she was even able to unlock her phone to have him call Kent. He said that she had already had a CT Scan and they noticed some sort of calcification with some swelling on the top-left portion of her brain and that he was going to have her transported to Hennepin County Medical Center (HCMC) to have her seen by the on-call neurologist. Upon arriving to HCMC, Natalie was immediately admitted to the hospital and had underwent another CT Scan. She was met by her sister Angela and her husband, Kent. Her step-father, John, arrived soon after Angela and Kent. The following morning on May 30th, Natalie underwent an MRI and an EEG, so the medical team could determine what was on the top-left portion of her brain. During the afternoon, a neuro-surgeon and a resident neuro-surgeon came to explain the results of the MRI. They stated that there appears to be a tumor on the top-left portion of her brain. They said that they believed it was something called a oligodendroglioma. They said they believe this tumor is benign (Does not spread to other parts of the body). The doctors then gave Natalie 3 options. Option 1 was to perform surgery at the soonest available date to remove the majority of the tumor without getting too close to the brain tissue and follow up with chemotherapy to eradicate the rest of the tumor. Chemotherapy would not be started until the pathology results would come back positive indicating the tumor is an oligodendroglioma. The pathology results were not expected to arrive until 5-7 days after surgery. This was the doctors preferred treatment choice. Option 2 involved doing a combination of radiation and chemotherapy. Option 3 was to just take seizure medications and not specifically address removal of the tumor and just see what happens. Natalie immediately chose to have the surgery at the soonest available date.Natalie underwent surgery at approximately 9:30am on May 31st. The surgery lasted until 4pm.