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Madison’s life changed in 2016 as a two year old when her mom noticed her left eye would constantly twitch. Madison got croup. While at the doctors the doctor tested her for croup, and then referred her to an ophthalmologist. The ophthalmologist didn’t know what it was, and sent her in for an MRI. The MRI found a tumor on her optic nerve. From there she was referred to oncology, who took on her case. Oncology stepped in and told them that she had a low-grade glioma tumor. They wanted to hold off on a biopsy, and that they didn’t want to do radiation on her because of her age. They sent out a plan for two different chemo treatments that she would do once a month, for a year. Every three months was an MRI to follow up.
Her first round of treatment was rough. She couldn’t keep any food down. They had to feed her protein shakes. It got to the point where she had to be connected to a fluid bag. She had to do blood transfusions and platelet transfusions. The only thing she didn’t lose was her hair-it only thinned out. She did that treatment for a year, and then went into remission. The tumor was stable, her eye sight was stable, everything was good. She was in remission for 11 months.
In January 2018 she went in for a check-up and got bad news. She was losing sight in her left eye. Madison was seeing black spots, and was constantly having headaches. If they made her close her right eye and look out of her left eye, she would say that she couldn’t see you, only the peripheral. That is when her ophthalmologist told her that her tumour was stable, but thought she should go back into treatment, because of the sight loss. They met with oncology, and oncology put her back into treatment. They started a new treatment plan, and said that it should have less side effects than her first round. They said that this treatment would be 18 months.
The side effects were a little less. She still would throw up. They adjusted the dosage. After that she was able to keep things down. She did the year of treatment. She had blood and platelet transfusions. Everything was going well. She had labs drawn every Monday, and clinics every Wednesday. Madison was brave and had no problems with people taking blood. She became really good friends with the nursing staff at Primary’s. The tumour shrank and stabilized. Her eyesight stabilized. She finished one of her treatments. She had three months left of her last treatment.
In January 2019 she had her follow-up appointment for her MRI. The doctor came in and told her parents that the treatment was no longer working and that the tumor grew. They stopped the current treatment, and wanted to do a different treatment. Since that treatment failed, they also wanted to do a biopsy. They did the biopsy in February 2019. She did pretty good on her biopsy. They shaved a patch of her head on the right side and made an incision diagonally down to the left eye to get a piece of the tumor. She stayed in the hospital for 2 days to see if there were side effects. They had to wait to see what cells were in her tumor, and what plan they were going to take. They got their call back and met with the oncologist for their treatment. They recommended a trial treatment, where other kids were having good results. They put her on the trial treatment where she did her treatment via pills, versus the port. This medication would cause arrhythmia of the heart, joint pain, sensitivity to light. She was to take three of those pills a day. The pills caused pain in her hands, where they needed to lower the dose. After that she was doing well with the medication.
They did her follow up three-month MRI and found out the tumor had shrunk 70% with the medication. That medication was to be taken for two years. She needed to start doing echoes and EKGs every month to make sure that there were no side effects in the heart. She was doing pretty good with the medication. Not much with the nausea. She started to be more like herself. Her tumor stabilized. Everything was good. The doctor said that everything was good and wanted to give her a break in 2021. She still got headaches and had muscle/joint pain. She said the pain was like someone was squeezing her muscles. Her legs and arms hurt. She was doing well.
Madison was to follow up every month with them. Everything was going well with them. Her doctors were hoping she would go into remission. In December of 2020 she got a bad rash, and they stopped all of her medication a month early, because they couldn’t tell if the rash was caused by her medication. Mom was told in January if the MRI was good, she would be really in remission.
In January 2021 they got her scans and found out that there was growth of the tumor. They didn’t know if the tumor grew since her last scan in August, or if it started to grow after stopping her treatment in December. The oncologist team didn’t feel comfortable putting her into remission and stopping her treatment. They didn’t know which treatment to give her. The team came back and met with mom. They said that they wanted to start another trial treatment chemo medication-two different oral chemo treatments. She started that treatment right away. It was supposed to be two pills in the morning, and 4 at night. The night pills gave her bad migraines. She was on that medication for two weeks. Madison was sent to the ER twice because of that. The oncologist had her stop the night treatments.
Madison is currently taking one of her chemo treatments. She is seen every 4 weeks. She is doing very well now. She does an echo and EKG at least once a month. She still gets joint pain and headaches. Her last MRI in April of 2021 showed the growth was down 66%.
