On November 1 2021 I took Carson to the doctor due to having mild daily headaches for about 2 1/2 weeks. The nurse practitioner did an exam and ordered labs to be done. She said if they all came back negative she would order a ct scan of his head and refer him to nationwide children’s neurology. I knew that his bloodwork would be normal and it was. We were then told that if the headaches hadn’t resolved in 3 weeks we would then do a CT scan and do the referral. I knew in my heart that something wasn’t right and was unwilling to wait any longer for further testing. On November 4 Carson had a CT scan of his head done at pike hospital. I received a phone call from the nurse practitioner shortly after dropping off Carson at school. I was told that Carson had a mass on his brain located near the brain stem. We were instructed to immediately take him to nationwide children’s emergency room. We were told that the scan would be sent to children’s and that they would be notified that Carson was on his way. I will never forget that phone call. When we arrived to the er where they reviewed Carson’s scans. We spent around 6 hours in the er. We saw the attending physician and the neurologist while in the er. They informed us that Carson’s mass was approximately 8cm! We were in complete shock. I still cannot believe Carson had a tumor on his brain that size and had such minimal symptoms. Prior to going to the er he was playing on an all star soccer team playing 2-3 games/day Saturdays & Sundays, playing flag football at the same time and doing very well in school. Even on his physician exam he didn’t show any deficits. We were admitted to children’s and he had an mri of his head done late that night. The results of that confirmed the 8cm mass located near the 4th ventricle near the brain stem but did not show any other lesions on the brain. The next day he had an mri of his spine which was also clear of any other lesions. We met with Dr. Leonard (chief of neurosurgery at children’s). He told us he had narrowed down the type of tumor to 3 different types based on his age and the location of the tumor. Carson started to show symptoms such as nausea and trouble with his balance and coordination on Sunday (just a couple of days after finding the tumor). Carson underwent a total resection of the tumor on 11/9/21. The surgery took around 6 hours and Dr. Leonard was able to remove the entire tumor (which is a huge first step for treatment)! Carson was then admitted to the picu at children’s but spend less than 24 hours there before being sent back to his regular floor. The first night after surgery was pretty tough. Carson was in a good bit of pain and quite nauseated even with the meds he was given. We stayed at children’s until being discharged on 11/17/21. It took several days of decreasing the pressure on Carson’s drain to get him to where he could tolerate a normal amount of pressure behind his eyes and on his brain. Due to the tumor blocking the normal flow of fluid, he also developed hydrocephalus and edema. Carson did so well while in the hospital. He was up and walking the halls, kicking around a soccer ball and football. He played card games with us and read books. He was absolutely amazing. His team of doctors said that he surpassed all expectations they had for recovery for him.
The tumor was sent off for multiple tests. He also had to have a spinal tap done to test for any cancerous cells in his spinal fluid. This test was also negative for any signs of metastasis. We were informed that Carson’s mass was a medulloblastoma, which is a type of brain cancer. After the genetics of the tumor came back we then found out the subtype of the tumor and other genetic information.
In early December Carson started radiation for his entire brain and spine in Cincinnati. He went 5 days a week for 6 weeks. He did absolutely amazing with this part of treatment, only having minimal symptoms of mild nausea and loss of appetite. He also started to lose his hair after a couple weeks of treatment. Still, all of his providers were impressed with how well he tolerated all of it. They said many kids experience nausea/vomiting, loss of appetite and issues with balance and coordination. Carson was running the halls and stairs and playing with friends at recess and gym. Honestly, if it wasn’t for him losing his hair, you really wouldn’t have known there was anything wrong. The day after Carson’s 8th birthday he was admitted to children’s to have an aport placed so that he could start chemotherapy the next day (2/22). He will be doing 9 cycles of chemotherapy which will take approximately 12 months if there are no delays in his treatment. Carson made it through the first treatment like it was no big deal. All of his lab work has stayed exactly where we want it to be. He just started his second cycle of chemo and should be done with cycle 2. By the end of April.
Carson continues to amaze me every single day of this journey. He has handled all of this so well. I cannot imagine going through this as an adult, especially not as a child. He has a good understanding of his diagnosis and treatment plan. He rarely complains of anything at all. He continues to go to school and is currently playing baseball. He has continued to be the same sweet, silly, thoughtful boy that he has always been. He has talked to me multiple times about how it must be really hard for the girls to go through what he’s going through because it is probably harder for them to lose their hair than it is for him. He always notices the babies and younger children when we are at the hospital and expresses empathy for them. Even while going through something so difficult, he continues to think of others.
After all of the reading I’ve done in support groups, it seems to be very common that these types of tumors are overlooked and not diagnosed for a very long time. I thank God everyday that we found Carson’s as soon as we did. I hope that by sharing Carson’s story it help raise awareness. Another mother I know had shared her story of her daughter’s brain tumor diagnosis and that is what prompted me to be so adamant about pushing for further testing.
Words Written by: Amanda Holbert (Carson's Mom)