Natalie’s Story (As Written By Her Mother)
Natalie is a 12-year-old little girl whose world got turned upside down in April of 2019. Natalie was having some issues with her vision so we took her to the eye doctor, thinking she may just need glasses. The eye doctor sent her to a specialist who then sent her to the ER where she was diagnosed with an Optic Pathway Glioma. They found a tumor in Natalie’s brain that was causing damage to her optic nerves and damaging her eyesight and her pituitary gland. The oncologist told us that Natalie had to go through a year of chemotherapy treatments and that the tumor was inoperable. After the second chemo treatment, Natalie had an MRI and miraculously the tumor had disappeared. She still continued treatment. Natalie underwent 10 months of treatment until her body said enough was enough. Natalie never complained throughout the whole process. The day before what was supposed her 11th treatment, she said, “Mom, I don’t think I can do this anymore.” The medicine was starting to do damage to her hearing and she just wasn’t bouncing back. Her blood counts were low and she had to have blood and platelet transfusions often. Finally, the doctors decided to stop the treatment and just follow up with MRI’s every three months.
Natalie’s scans were clear but in June 2020, they saw an “area of concern.” Meanwhile, we started to notice Natalie was babying her right arm. We thought she injured it at the lake. I took her in to urgent care to make sure she was okay. All tests came back fine, which made me worry that it was something neurological. I called the neurosurgeon right away. They scheduled another MRI and with those results decided that it would be best to have a biopsy done. The “area of concern” was growing pretty rapidly. On September 10, 2020, Natalie went into surgery for a craniotomy so they could collect a sample of the tissue for a biopsy.
We had to wait over a month for results from the biopsy. Things with Natalie got pretty scary from a mom’s point of view. She was physically losing abilities on her right side. She was finding it hard to comprehend things. She was losing memory and even her speech was difficult. We met with the doctor and we didn’t get very good news. They diagnosed Natalie with anaplastic astrocytoma, which is a very aggressive, grade 3 tumor. Right away I started doing research and reaching out to other families that have gone through the same diagnosis. I wanted to be prepared with knowledge when we met with the doctor for treatment options. We met with the doctor and he recommended Natalie go through radiation and chemo, this time oral chemo not infusions. I asked him about a different type of radiation that I knew wasn’t offered in New Mexico. He was on board 100%. I contacted MD Anderson Cancer Center in Houston Texas and got everything set up for Natalie. We had consultations with all kinds of doctors and they agreed that Natalie was a perfect candidate for this type of treatment. We were so blessed with love and support through that journey. We had to be away from home for 9 weeks for Natalie’s treatment. She underwent 30 rounds of radiation and 42 rounds of oral chemotherapy. Her poor little body fought hard. Again, she had a tough time bouncing back. She had to have many blood and platelet transfusions and lots of hospital stays. She never had an appetite, didn’t eat, and she was always tired. She lost her hair on one side. This tumor left her with right side weakness. She is unable to use her right arm/hand for anything and she has drop foot in her right leg. She is going to physical therapy and occupational therapy each once a week. She is determined to get them working again.
Now that treatment was complete and her body had recovered. She is physically getting back on track; it was time to get her back in school. It was a huge step for Natalie. When she got diagnosed she was in the 4th grade. Most of her treatments were through most of the 5th grade so she missed a lot. Covid and her second diagnosis hit during 6th grade, along with her treatment in Houston. Starting school again in person was now going to be 7th grade at the middle school. It was a much larger school where they now have to switch classes and have more responsibility. Natalie worked through the summer with a diagnostician doing testing to see where she was cognitively and academically so they would be ready for her when school started. The principal helped by giving her a modified schedule. Natalie went to school for a month where they would just roll her in her wheelchair to class and let her figure things out for herself. She would get overwhelmed and tell the teacher that she needed to go to the nurse. She would spend most of her days in the nurse’s office because that was a safe place. Meanwhile, she was being marked absent in all of the rest of her classes. I reached out to the principal and special services to try and get help for Natalie but nothing changed. I was at my wit’s end. I was sad and frustrated for Natalie. This wasn’t fair to her. She deserved better. I thought about homeschool but didn’t think that was fair either. She had already lost so much time and spent every day for the past few years with me during her treatments. I wanted her to be around other kids. I reached out to Children’s Cancer Fund hoping they could help me find resources for homeschooling for Natalie. They ended up doing so much more. They informed me about a small school called Mimbres Academy. It is an accredited school and offers education for kids who are currently in treatment or have gone through treatment. This school has been such a blessing for Natalie. She is doing so well. The teachers are awesome and compassionate towards these kids. She is regaining her confidence. Her personality is blossoming again. She is willing to try things she didn’t think she could do. She is a fighter and continues to amaze us.
Natalie continues to get MRI’S of her brain every 3 months to monitor everything. Since the completion of her treatment in January 2021, all of Natalie’s MRI’S have shown no significant change, no sign of cancer or progression.