Posted by: The Sumaira Foundation in NMO, Proche-aidant.e, Voices of NMO
We had just finished a great weekend moving my oldest daughter, Estrella, into her dorm for her first year of college, and school had just begun for my son, Elijah, who was a freshman in high school and Bella who was in 4th grade. I remember taking the day off of work to run errands and get a few things done while my kids were in school. I woke Bella up to get ready as I did each morning, but shortly after she woke up she said that she was not feeling well. At first, I thought she was only saying she was sick because she wanted to spend the day with me, but I quickly learned Bella was indeed sick.
Bella’s first attack began with occasional vomiting, so I thought she may have caught a stomach flu. The first day Bella was sick, I had her lay down, and worked on keeping her hydrated. The second day, she appeared more fatigued and her vomiting increased a bit. Again, my first thought was that she just had a stomach flu, so I hoped her symptoms would begin to resolve soon. On the third day, I began to worry because she was still vomiting, and it was increasing even though she couldn’t eat or drink anything. Bella had also developed a fever that we could not get down. I was worried she was becoming dehydrated because she was so tired and couldn’t keep anything down. We took Bella to be examined by her doctor and we were told she probably had the stomach flu and would be okay in a few days.
The next day, Bella was feeling even worse than the day before, and vomiting every few minutes. She was also very lethargic and slept much of the day. I took Bella to a nearby hospital because I knew she was dehydrated from vomiting so much, and I hoped she could find relief by receiving a bag of IV fluid. After a few hours of observation and one bag of IV fluid, we were released from the hospital and told again that Bella probably had the flu. We returned home and were only there for about an hour before I decided to take Bella to a nearby Children’s Hospital Urgent Care. By the time we arrived at the hospital, Bella was vomiting, had a high fever, and could no longer walk so I carried her in.
The nurses at Children’s Hospital Urgent Care immediately started an IV on Bella and began testing her to see what was making her so sick. After a couple of hours, the nurses informed me that Bella had a case of pancreatitis (which is an inflammation of the pancreas and very rare for a child to have). I was told that she needed to be admitted to the hospital, but since she was in an urgent care location and so sick, she was taken by ambulance to Children’s Hospital of Colorado’s main campus where they were able to keep an eye on her and manage her symptoms easier. We arrived at the hospital a little after midnight on my 34th birthday. I was absolutely terrified and so worried about my poor little Bella.
Bella’s condition continued to deteriorate over the next few days and her symptoms included an increase in vomiting, fever, high heart rate, blurred vision, fatigue, and weakness on her left side. The doctors no longer thought she had pancreatitis, but they still could not figure out what she had. We all knew we needed answers and needed them fast. At this point, we were surrounded by family and friends and people wanting to help in any way they could. The next few days were the most terrifying days I have experienced as a parent. My youngest daughter, my baby girl, was so sick laying in her hospital bed as I reassured her, sang to her, tried to make her comfortable, prayed, and told her a million times to fight and that as her mom I would fight right along with her as well as her dad, brother, and sister. I kept telling her that in this family we win together, lose together, love and fight together. Bella was vomiting every 30 seconds, had high fever, high heart rate, blurry vision, fatigue, weakness on her left side, and developed a bad case of hiccups that would cause her to choke when she was trying to vomit.
On September 5th, Bella was moved to the ICU after she collapsed in my arms and stopped breathing. My husband, Eli, joined me in staying with Bella and we both took a leave of absence from work. The doctors began to think that maybe Bella had spinal meningitis, so they recommended doing a spinal tap. They initially told me that I was not going to be able to stay with Bella, but she was so afraid of me leaving that the doctors decided I could stay. I will never forget the scream Bella let out as the needle was inserted into her spine and I begged her to stay still and hold my hand. I’ll never forget the look on the nurse’s face as I was told by the doctor that he could not get any spinal fluid and that he would have to try again. The doctor was still unable to get spinal fluid after the second attempt, so he decided to have her put to sleep while she was given a third spinal tap to avoid any additional discomfort. On September 6th, we made the difficult decision to have Bella intubated and placed in a medical coma in order to stop her from choking and vomiting.
Her condition got worse each day, but the doctors at Children’s Hospital continued to run tests and never gave up on my Bella. They even teamed up with doctors from the University of Colorado Hospital and sent her blood tests to the Mayo Clinic for further evaluation. I was so thankful for all of the nurses, doctors, CNA’s, and all of the staff at Children’s Hospital for being there for us through this scary time. At one point, Bella was taken from her room in the ICU and coded on the table, so she was quickly returned and we were told she would no longer be able to move from her room until we could figure out what was going on. We also found out that she had several lesions on areas of her brain and spine that control her ability to swallow, hiccup, vomit, and experience the symptoms she had. I don’t remember what day this was, but I do remember looking the doctor in the eye asking if Bella would survive, and they looked back at me with the same look of fear, sadness, and concern and said, “I don’t know”.
The doctors recommended that Bella receive plasmapheresis treatments while we waited for the blood tests to come back from the Mayo Clinic. While she was intubated, we tried keeping things quiet in her room so that she could rest, but one day her brother, sister, grandmas, grandpa, and auntie Katrina came to visit her in the hospital. As we all sat there with Bella unconscious, Estrella said it was too quiet and asked that we put music on for Bella to listen to. After all, Bella LOVES music and would often be seen with her aunt on the way to school, in the house, and in the car, jamming to her favorite song at the time, “Uptown Funk” by Bruno Mars. It was only fitting that we put that song on for her first. None of us expected what happened next! Despite being in a medically induced coma, she began dancing to the beat of the song! All we could do for the first time in weeks was smile and watch in awe. Even the doctors and nurses were blown away! In that instant, amongst all of the worry and sadness, I knew that Bella was going to be okay.
A few days and plasma treatments later, Bella was brought out of her coma and began her road to recovery, but we still didn’t have any answers yet. On September 19th, as my husband and I got ready to meet our family in the lobby of the hospital, Bella’s team of doctors came in and told us they received her test results from the Mayo Clinic and they wanted to discuss them with us. As I sat down to hear the news, I watched as the doctor spelled N-E-U-R-O-M-Y-E-L-I-T-I-S O-P-T-I-C-A with a red dry erase marker on Bella’s hallway window. I remember asking the doctors to repeat the name of Bella’s diagnosis a few times and what it meant, to which the doctors said that neuromyelitis optica (NMO for short) was so rare that I would need to Google what the disease is. I was also told that not only was the disease rare, but it is extremely rare in pediatric patients.
For the next few days, while Bella continued her plasma treatments, I Googled NMO and tried to join as many support groups as possible so I could learn all I could about how it affects the body and how we as a family could help Bella fight together. In my research, I learned that there is no cure for NMO and that most patients only live for 5 years with the disease. I was mortified, but quickly learned by talking to other patients and caregivers that although there is no cure, patients can live a lot longer than 5 years and lead healthy, happy, and full lives. I was thankful for the diagnosis, but also scared of everything I was reading. The next few weeks were quite a roller coaster of emotions. Bella spent nearly 3 weeks in the ICU at Children’s Hospital, and we stood by her side and played music, danced, and brought tons of visitors from family and friends to Rocky, the Denver Nuggets’ mascot! She was a star in the ICU and with doctors. She even had a whole team of doctors and specialists coming to teach medical students about her case.
After beginning a regimen of Rituximab, and undergoing physical therapy to regain her ability to walk and swallow, Bella was moved to a room outside of the ICU. For the next few weeks, Bella received rehab therapy, steroids, and Rituximab, and on October 6th, we were finally able to take her home! We were told by Bella’s doctors that she would need to receive Rituximab for the rest of her life and that another attack could come at any time. We were also told that as long as we continue to monitor Bella and her symptoms, she should be ok and be able to live her life. I promised Bella that no matter what, we would all be there to support her and make sure she is healthy and well cared for.
While Bella was hospitalized, she received encouraging messages from many people around the country and around the world. One of her favorite gifts was a string of paper cranes from a friend of her auntie, Katrina. After Bella was released from the hospital, she received a private lesson from Katrina’s friend Ken on how to make paper cranes. Bella instantly became hooked! She even shared cranes with the patients she got to meet in 2018 at Patient Day, an event that helps bring awareness to NMO. To this day, Bella continues to make paper cranes and share them with others.
A year after her diagnosis, Bella received a new puppy that we promised her while she was in the hospital, and she named her Roxy. Bella and Roxy have an unbreakable bond and Roxy’s job is to keep Bella active and provide endless cuddles and kisses! In addition to playing with Roxy and our two other dogs Nova and Bronco, Bella loves to paint, make jewelry with beads, sew, crochet, do art on her iPad, play games online with her friends, and watch anime. She has always been so artistic, and it’s a blessing to witness her passion for creating!
In the last three and a half years Bella has had NMO, she has learned so much and has made friends with NMO locally, nationally, and globally. Bella loves telling her story of bravery and perseverance, and she has learned to advocate for her needs and the needs of others. Bella is always looking to bring awareness to NMO, and I have also kept my promise to support her.
In 2020, I became the Colorado Ambassador for The Sumaira Foundation for NMO! I NEVER want anyone to ever be told to Google what NMO is, and I NEVER want any parent or patient to experience the anguish and worry that I did when Bella had her first attack. Our family and friends have been there to support us in any way they can, especially when we have the opportunity to sing and dance with Bella. We love meeting new patients and caregivers as well as being a source of support to them as well.
The past year has been difficult for Bella and our family with COVID, quarantine, remote learning, and just life in general, but we continue to push forward because in this family we fight together! Bella recently celebrated her 13th birthday surrounded by family and lots of love! We are so grateful she has learned how to communicate her needs so we can help keep her healthy and happy. While we don’t know what the future holds, we have learned to enjoy each and every moment of every day. Life is so short and can change in an instant, so we have to live each day with purpose, love, and kindness. We are thankful and feel so blessed that Bella has continued to remain healthy and happy. Of course, there are tough days, and Bella still occasionally is admitted to the hospital when she is sick, but she has not had a relapse at all and she knows that she always has a shoulder to lean on and someone to catch her when she falls.
We would like to thank all of our family, friends, and all of the people who have sent Bella cards, words of encouragement, love, and support. Bella’s journey would not be the same without you all! Your lives have all had a huge impact on Bella and the person she is today. I would also like to thank The Sumaira Foundation for illuminating the darkness of NMO and always looking for ways to help the NMO/MOG community. This foundation makes NMO a little less scary, and the doctors and researchers are our heroes! Thank you for all you do and thank you to all that played a part in saving Bella. I know there is nothing but greatness in her future –– not even the sky’s the limit to what she will accomplish in this life!
