Amaya's Story: Parent's Letter Project Brain tumor- Amaya’s parents

On June 26, 2010, at approximately 9:00 am, my daughter Amaya walked into my room with a disturbing look on her face. She looked as if she didn’t know where she was. She said good morning and got in the bed with me. She told me that her stomach was hurting and that she felt like she needed to vomit. She went into the bathroom in my room and then to the bathroom in the hall. She called for me to come to the bathroom as she rested on the floor over the toilet. She was unable to vomit. I told her to come back in the room and lie down on the bed. She came into the room and just started looking around at the walls.

At first, I thought she was playing. I asked her why she was looking at the walls. She said that she wasn't. I told her that I was going to take her to the hospital and she said no she didn't need to go. Things got really strange. She was looking at the wall to the left and it seemed as though she couldn't turn her head to the right. I asked her to turn her head and when she tried it just kept getting stuck like a broken toy. I started to panic and started praying. 

I remember begging her to turn her head and calling my other daughter Kayla. I called my sister to ask her what she ate the night before because the kids went over there for a little while. She said Amaya had eaten a chicken sandwich. I walked her into her room and sat her on the edge of her bed. I called my husband who was out getting an oil change and told him that something was wrong with Amaya. He told me to call 911. I told him to come home now! 

I called 911 only to get a recording. I hung up and tried again and got another recording. Finally, Kayla called 911 while I was talking to her father on the phone. A dispatcher called me back as I was holding Amaya close to my stomach. I explained that my daughter could not turn her head to the right and to please send help. As I talked to the dispatcher, Amaya started to jerk her left arm and saliva started coming out of her mouth. I told the dispatcher to hurry because she was having a seizure. I couldn’t believe it! I was worried my child would become unconscious. The seizure didn't last very long as I held her close to me. Afterwards, she started to lift her leg on the bed as the dispatcher explained that she would be very tired after the seizure and that it was ok for her to lie down.

Shortly after, the medics arrived, and I saw a familiar face. My nephew's father came into the room along with three other medics. I cried and explained that this had never happened before. Amaya was awake and fighting. She did not want to go with them. As they put her in the ambulance my husband arrived. I got in the ambulance with her while my husband and Kayla drove to Children's National.

As we arrived at the hospital, Amaya was still crying and saying that she was ok and didn't need to be there. We were admitted to the Emergency Department (ED). Amaya was attended to by the ED nurse and started feeling sick to her stomach. She vomited, which made her feel better. After seeing the ED doctor, they decided to do a CT scan. Afterwards, we were moved to an individual room in the ED where the doctor came in to inform us that there was something on her brain that could be a tumor or an infection. I was standing beside her bed and started to slowly sit in the chair. Finally, I could not hold back the tears. My husband, Brian, took me out to the waiting room where my mother, sisters, Kayla, and in-laws were waiting. "This is not happening," I thought to myself. I cried and cried and cried. Of course, they admitted her into the Intensive Care Unit (ICU) to have a MRI done. We spent the night in the ICU and the next day she had the MRI.

She had to be sedated to have the MRI. They put a breathing tube down her throat and heavily sedated her. It hurt me so much to see my baby lying there. After the MRI was performed, the staff said they were going to wait to take the tube out until she was awake and responsive. Why did they do that? My baby had to wake up to a tube in her throat. Can you imagine what she was feeling? She was choking as they suctioned her saliva. She responded to everything we asked her to do and they took the tube out. My baby wanted something to drink. She had many visitors that day. Family members started coming into her room while she was still medicated. She amused everyone with her sense of humor. Of course, she thought she could go home after she took a picture of her head.

The doctors confirmed that there was a tumor on the right side of her brain and that it was very small, the size of an olive. I was still in awe. They proceeded to tell us that she would need surgery to remove the tumor, and the location of the tumor was in a good position to be removed easily. Amaya was later moved to the 5th floor and out of ICU because the doctors felt that she was not an ICU patient.

Amaya had her surgery on June 29, 2010. The surgery went well. They were able to remove the entire tumor. She had stitches in the back of her head, which was well hidden by her hair. She did not have to get her hair shaved or cut. What a blessing! Amaya recovered very well. She spent the night in ICU after surgery and the next day went back to the 5th floor. At this point, Amaya was ready to go home. During the day, she was being strong for her visitors, but at night she was crying and saying that she just wanted to go home. 

It was so hard for us as parents to see what our baby was going through. I just laid beside her and cried. It didn't matter who came to see her or what gifts they brought. She was getting depressed and wanted to go home. She was able to walk and use the bathroom as normal. We were told that recovery in the hospital would be three to five days. Two days later on July 1, 2010, my baby came home. She literally walked out of the hospital. The doctors felt that she was ready to go home and would recover better. 

Throughout this experience, my husband has been very strong for Amaya and the entire family. Amaya was so glad to be home and so were we. Did I mention that I am five months pregnant? I am trying so hard to stay strong for Amaya as well as the baby inside of me. 

This was not the end of our journey unfortunately. Every night I would check on her as she lay beside me in the bed. Every move she made I was up watching. Despite the surgery, she was doing excellent- no complaints, no pains. She was taking a steroid medication that made her so hungry that she woke up eating and went to bed eating. Her stomach got so big, and her cheeks looked like chipmunks; of course, this was a side effect of the medication.

On July 21, 2010, we met with Roger Packer, MD, who is head of Neurology. He explained to us that her tumor was a little complicated and could not be identified. They sent the tumor to a specialist at a Maryland hospital who is supposed to be one of the top pathologists in the world. Based on the results, most of the tumor was benign. However, there were some areas that seemed to be a little aggressive, which resulted in a category 3 tumor. This was not the news we were expecting to hear! 

Tumors are rated 1 through 4 where 1 is benign and 4 is more serious like that of Ted Kennedy. Radiation treatment has been recommended. The treatments are at NIH for six weeks Monday through Friday for 15 minutes a day. She had to go through more testing, have an MRI of her spine, head, and a spinal tap done prior to the treatments. What a summer vacation. I went home and cried for two days. My husband has been great. He continued to remind me that God had this under control and that Amaya will be fine. I didn't know if that was good enough for me. I wanted this nightmare to end. I wanted my baby to have her life back! Amaya said to me that she wanted to hurry up and get this radiation treatment over. I totally understood how she felt.

I received a call from someone at NIH on July 23, 2010. She wanted us to come in for a consultation on July 27th at NIH. This process has been draining me! I’ve prayed to God to heal my baby and allow her to get through this radiation treatment with no problems or side effects that would cause short or long term problems.

Amaya began radiation treatment on August 17, 2010. She was very strong and in good spirits. The doctors were amazed at her maturity throughout this entire process. Two weeks into the treatment, I noticed that her hair started to come out. We were informed that there would be thinning in the areas of treatment. However, I was shocked to see the amount of hair that came out. She ended up with no hair in the back of her head. Despite this, Amaya started school as normal. The radiation went well with little to no side effects. She completed radiation on September 27, 2010. Six months later, Amaya is doing great. She has had two MRIs since (every three months) and all is well. She will begin track season healthy and strong!

In conclusion, we would like say thank you to the doctors and nurses at Children's National. They were great! They really made her stay there comfortable. We would also like to thank Ms. Chris for providing fun activities for Amaya and giving her the bear to take with her into surgery. Well done!

Sincerely,
Amaya’s parents, Brian and Melissa

Treatment Team

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