‘I called my husband. ‘Get on a plane NOW and get here!’ Things we loved about her were suddenly ‘something.’: Daughter battles neurofibromatsis, ‘She’s taught me about compassion at age 5’

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“It has been almost two years since we started our Neurofibromatosis journey.

It all started the week before Thanksgiving. Anneliese was on her third antibiotic for an ear infection. We are dairy farmers and live in a rural community in New Mexico and travel over 100 miles into Texas for our medical care. For two nights in a row, we ended up in the ER two hours away in the ‘big city hospital’ with doctors wondering why three different types of antibiotics hadn’t cleared her ear infections and why her fever still wouldn’t break. On the second night, the ER doctor decided to do a CT scan to see if we were missing something.

Courtesy of Tara

As my mom and I were waiting (impatiently) for the results at 2 a.m., two doctors we had never met before walked in. Let me tell you now… when two doctors that you don’t know walk into your children’s room — it’s usually not a good thing. They started asking all sorts of questions and looking her over from top to bottom. I remember them saying, ‘tell us everything that is different about Anneliese.’

Having doctors dissect and analyze your child is awful. ‘Well, she has birthmarks.’ They jumped on that: ‘How many?! How big?’ I said, ‘well, there were lots of them,’ which the doctors started looking at and measuring. ‘Anything else?’ They said. I remember my mom helping me. There were a few things… hooded eyes which no one in our family had. One toe that crossed over another. Super tiny things that we absolutely loved about Anneliese and that we found so uniquely her, were suddenly, ‘something.’

Courtesy of Tara

Almost immediately upon finding the birthmarks, they decided to admit her into the hospital for further testing. That night they told us that Anneliese had enlarged ventricles (natural spaces in the brain) which could possibly mean Hydrocephalus. I had no idea what this meant. But here we were, admitted into the hospital.

The next morning was a whirlwind. We were at a University hospital, which meant that it was a teaching hospital. That morning during rounds, several doctors, residents, and interns — I know I am probably not using the right terms here, but bear with me — came into our room. We were told that they had discussed Anneliese’s case that morning and they had all the questions. I don’t really remember much from that if I am being honest. I was in a fog. They had mentioned several genetic disorders: Russell Silver Syndrome, Hydrocephalus, and others. But one medical student said something that has stuck with me: Neurofibromatosis. He said to me: ‘The doctors don’t want to mention this yet because it can be one of the more morbid diagnoses, but that’s what it could be.’ Clearly, he hadn’t been taught much about bedside manner. This moment was the moment I knew our lives would be different forever.

Courtesy of Tara

Later that day, one of my sisters-in-law, who is a nurse, also mentioned Neurofibromatosis. Knowing about Anneliese’s birthmarks, she wanted me to ask about them. But no one at the hospital seemed all that worried about actually diagnosing the root cause, they were only worried about the enlarged ventricles. By that time, my mom had gone home and Daniel had come to Lubbock, but by the afternoon, I thought it best to send Daniel home to be with Gwenevere. ‘WHAT WAS I THINKING?!’ Well, I will tell you what I was thinking. My dad was two months out from a massive accident that almost took his life. An accident that he was still battling every day to try and save his arm. I knew my mom needed to be home with him. And Daniel needed to be home with Gwenevere. In the words of Pretty Woman… Huge Mistake.

That afternoon the neurosurgeon looked at Anneliese’s CT scan and decided she needed to be taken in for a sedated MRI. Having your 20-month-old sedated sucks. It was so scary and stressful. Well, the MRI pretty much confirmed what we already knew: enlarged ventricles, but we didn’t know anything else.

The next month or two were a whirlwind. They discharged us while we waited on genetic testing results. Genetic testing, as I learned, is kind of like finding a needle in a haystack. You need to know what you are looking for and where to look. They tested her for a couple of different genetic disorders, but not for Neurofibromatosis. In the meantime, she had surgery to place tubes in her ears to stop the ear infections. We also ended up with Anneliese in the hospital again the day after Christmas.

The week leading up to Christmas, and especially Christmas night, Anneliese had unexplained vomiting and headaches, which can be a sign of Hydrocephalus. Once again, we were admitted to the hospital. They wanted to do brain surgery to place a sensor to monitor her intracranial pressure. Thank goodness (I say this now in hindsight), but she had a cough which prevented us from doing the surgery. While we were in the hospital, my dad was also undergoing his 100th (slight exaggeration) surgery on his arm. So we got to visit him and my mom before his operation. I am telling y’all, our lives were in complete chaos.

So once again we were discharged with no answers and no explanation… but the plan to do brain surgery (what?!?!?!) on our 21-month-old at the end of January.

The entire month of December leading up to that hospital stay, I fanatical, was absolutely consumed! Researching and studying every single possible thing, every doctor, every hospital… everything. All while continuing to work full time and making sure to be there for my family. I rarely slept. But I knew I had to learn more. No one was asking why or what was causing all of her symptoms and unique characteristics. They just wanted to treat her. But I needed the why. And I trusted my mom’s gut 100% of the way.

I had so many people tell me I was obsessed. That I should trust the doctors in Lubbock. We were already traveling 100 miles to go to the bigger hospital, but I wanted more answers.

I reached out to every connection I knew which ended up being way more than I expected. By the middle of December, I had calls and meetings with pediatric neurosurgeons at John Hopkins, Denver Children’s and Texas Children’s in Houston, the National Institute of Health, and a virtual meeting with the head of pediatric neurosurgery at Stanford.

Courtesy of Tara

Little did I know, my boss’s brother, Dr. Lazarus, was a pediatrician in San Francisco, who had a personal relationship with the pediatric neurosurgeon at Stanford. I will never forget what Dr. Lazarus did for us. I sit here crying as I write this. He literally held my (virtual) hand through this whole process. I shared with him that I felt like I wasn’t being listened to and that we didn’t want to jump into surgery before knowing more. Something was going on with my daughter, and I wanted to know what. We ended up overnighting the MRIs, CTs, and everything we had on Anneliese to the neurosurgeon at Stanford.

That doctor emailed us with his professional opinions and his recommendations for the best doctor — the closest to us. With his help, we had an appointment within the week with one of the leading pediatric neurosurgeons in the USA at Dallas Children’s Health. Our appointment with this doctor in Dallas was on January 11th. Her intracranial pressure monitor surgery was scheduled for January 26th in Lubbock. But we knew we needed a second opinion before that surgery.

At our appointment on the 11th, this doctor disagreed with the previous doctors. She didn’t have Hydrocephalus. But she might have had Neurofibromatosis, which would explain everything. Originally we were told it would take three months to get into the geneticist, but with the help of this doctor, we had an appointment the next week with not only the geneticist but also with the Neurofibromatosis clinic.

We immediately canceled all of our appointments in Lubbock and planned to head to Dallas once again.

So the next week, Anneliese and I flew out to Dallas… alone. Again, I don’t know what I was thinking of going alone to this appointment. But I felt Daniel and Gwenevere should stay home. Well, after two long days and hours of long appointments, all the doctors and specialists agreed: while Anneliese’s case was unique, she had Neurofibromatosis Type 1. I remember calling Daniel from the rental car, begging him to get in a car or plane and come to Dallas, which is 7 hours away. I was bawling and devastated. I couldn’t handle this diagnosis alone. But Daniel talked me through it. He told me no one was more qualified to make decisions for our daughter than me. And he believed I could do it. I pulled it together and finished out the week of appointments. It was the hardest week of my life.

Courtesy of Tara

Following those appointments, we ended up back in Dallas twice more to see more specialists. We made four trips to Dallas in two months, all while I continued with life as normal back home keeping up with my job and other responsibilities. Just as we were getting used to our new normal — sedated MRIs and doctor’s appointments in Dallas every few weeks — we had our next big shock in August. Anneliese had two brain tumors called Optic Gliomas: tumors on her optic nerves, the most common type of tumors for children with Neurofibromatosis (NF). Tumors that could be nothing or could mean everything. This news set me down a whole new whirlwind of researching, worrying, crying… all the things.

We had appointments scheduled with new specialists leading up to Christmas and the following Christmas. That Christmas was the darkest, hardest time of my life. I could not sleep, think, or do anything without thinking about what those two tumors meant for the future of my daughter. Would she be starting chemo? Would we be traveling to Dallas even more? Would Anneliese lose her vision? When the appointments finally came, we got the news every parent hopes for: her tumors were stable, and they weren’t affecting her vision, and our plan of care was to monitor. At that moment in February of 2020, a weight was lifted off my shoulders. Lifted off all of us. Stable tumors are the absolute best you can hope for with NF. And at the same time, after 18 months, we finally got a confirmed genetic diagnosis of NF Type 1.

Courtesy of Tara

Since then, we have had another positive appointment and MRI, confirming her tumors are stable. I have since felt like I am finally starting to find my new normal. Yes, Anneliese has NF. Yes, that means she could have two tumors or thousands. There is no way to know what will come or what the future holds. Most days now, I can go through the day without thinking too deeply or worrying too much about NF. But then other days, it still hits me like a ton of bricks: I literally stop in my tracks and cannot breathe without worrying about the future and what it holds.

I am told that that is one of the hardest things about NF: the unknown. And it is so hard. It is so hard to not know what our next appointment will hold or what will happen. But I am trying to let go and know that right now, at this moment, Anneliese is a completely normal kid who just happens to have a genetic disorder and two brain tumors. Sometimes, I am angry. Being completely honest, angry at God, at the world for letting this happen to my child, and for every other child that suffers. You can give me all your lectures on why God lets things happen, but I still battle it every day not understanding why children around the world suffer and God doesn’t stop it. But I am learning to trust Him and pray about it.

In these last two years, I have learned a lot. It can be really hard to deal with how everyone else feels about Anneliese’s diagnosis. Family and friends and even Gwenevere get upset, and I feel like I have to be there for them. But sometimes it’s hard to handle their feelings along with my own. I have found out who my true friends and family are. I have had the people who have been there for me. The friends and family who loved me through it all. And my daughters, Anneliese, who at two years old taught me about strength, courage, and bravery, and Gwenevere, who at five years old taught me about compassion and caring for others.

Courtesy of Tara

I know our situation is far from the worst — I actually consider what we have been through to be mild compared to other cases and disorders I have seen. Let me tell you, if you ever feel sorry for yourself, go to a Children’s Hospital. You will instantly realize how good you have it. And for a while, I felt guilty about my feelings, but I have realized I could feel sad, scared, and afraid of what is happening with my child and her diagnosis, and still know it could be so much worse.

In the end, I know that our path had many ups and downs, but I believe I fought for my child, and we got the answers we needed to give her the best possible care. I can look back on the last two years and know I did the best I could in those moments. Thank you for reading and listening.

Utterly fighting NF,

New Mexico Milkmaid”

Courtesy of Tara
Courtesy of Tara

This story was submitted to Love What Matters by Tara of New Mexico. You can follow her journey on Instagram, Facebook and her website. If you would like more information on NF, please visit the Children’s Tumor Foundation. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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