The Beginning – Pre-Diagnosis

Headaches, throwing-up, muscle weakness – No big deal. Just normal teenage, puberty stuff. Brain tumor? No way, not my son.

My name is Regina Luna and my son’s name is Zachary Arguello and this is our story. To fully understand everything we went through and our frustration I must take you back to the beginning. This would be about 2 years prior to the dreadful call we received on March 14, 2019.

Zachary was about 14 when he started to complain pretty regularly about headaches. He was throwing up in the morning, and was always dropping things. Like any mom, I didn’t think anything of it. We all get headaches, he is a growing boy, puberty, not drinking enough water, he’s clumsy, those were all my initial thoughts. These headaches started to get worse and worse so I finally made an appointment with his primary doctor. She suggested giving him a magnesium supplement to see if that would help, but still referred us to the pediatric headache specialist at our local hospital. I would like to say good things about this specialist but honestly she didn’t do much for us at the beginning. She asked Zachary a lot of questions about his habits. He told her that he liked to play video games and play guitar and wasn’t much for physical sports. Instantly she determined that he was getting migraines, which would explain the throwing up and severe head aches. The pain in his head was due to the way he was sitting while playing the guitar and video games, and the weakness in his hands was also due to the guitar and video games. Now I come from a family of guitar players, my dad has played since he was a teenager and I have never seen his hands get this weak. How could my 14 year old boy be having problems with his hands after only a couple of years of playing the guitar? At this point I asked her when would she consider doing imaging on his head? She stated that it was not necessary, besides, those tests are very expensive. I couldn’t understand this reasoning, Zachary was double covered. He is covered under his dad’s military insurance and my insurance. But I gave her the benefit of the doubt and left there with a prescription for migraine medication and relaxing techniques.

For the next few months we tried the migraine medication. We really did not see a huge improvement, and his hand weakness seemed to be getting worse. We then went back for a follow up. We discontinued the migraine medication since it wasn’t doing much. She then determined that physical therapy would help him and that we needed to start him on natural supplements to help him relax. Zachary had a lot of anxiety. I tried explaining to her that his anxiety was mostly because he didn’t feel good. She was still convinced that he was just a young teenage boy that played too many video games and the anxiety was due to issues he was having with his dad’s PTSD. He would get very anxious and upset when he would spend time with his dad. We tried the physical therapy for a couple of months, tried the breathing techniques and natural supplements and once again did not see much improvement. Zachary was getting quite frustrated. He was throwing up almost every morning and it was starting to affect his school life. He would call me up from school, sometimes crying and sometimes yelling because he felt horrible. He would send me pictures of the bile he was throwing up every morning. At this point I took him back to his primary care physician and she referred him to a gastrointestinal specialist. This specialist was at the same local hospital, just down the hall from his headache doctor. I was starting to think that maybe it was his diet. Maybe he needed to be on a gluten free diet, maybe he was lactose intolerant. He would purposely stay away from tomato sauce and orange juice, anything too acidic because it seemed to make him throw up more.

By the time we started to see the gastro specialist about a year had passed. This doctor was very patient, very kind, and very concerned about what was going on with Zachary. He ordered an endoscopy and special blood work to detect bacteria in his gut. We went back and forth for about a year doing tests, trying antacid medication, changing his diet, you name it, we tried it. We went to a local herbalist that said it was a parasite and he needed to be cleansed. We tried benzonite clay, we tried herbal teas, he ate a big bowl of kale every morning, YUK!!! But by this point you can imagine his frustration, our frustration. My now ex-boyfriend and I would sit for hours looking up symptoms and the one thing that kept coming up was, BRAIN TUMOR.

Eventually I got a call from our gastro specialist explaining to me that he couldn’t find anything wrong with his gastro system. He sounded quite frustrated himself. I immediately started to cry, explaining to him that he was getting worse, the pain was more severe and the vomiting was beginning to really affect his life. He did more blood work and a couple of more tests before he finally said I needed to go back to his primary doctor and see what she suggests. So we did just that. She referred us back to the headache Dr we had seen before, but his appointment was still a month away. As time went on, Zachary’s symptoms were getting more severe. He was also developing new symptoms. I would go to work everyday expecting to get a call from him saying he threw up again and he couldn’t stand the pain. It was a daily thing for us. I would tell him to sit and rest because it would always go away by the afternoon.

About 2 to 3 weeks before his appointment with the headache specialist he came home one night from running some errands for us and he was not acting right at all. He walked in the house staggering, his speech was slurred, and he was not making much sense. It really scared me to see him this way. I was convinced that he was on drugs. I asked him over and over again if he had taken something and his answer was no. Zachary has always been a great kid. I’ve never had to worry about drugs or alcohol because he just wasn’t interested. But the way he was acting, made me question that. He went to sleep and woke up the next morning screaming in pain. At this time he was able to point to a specific spot in the back of his head where the pain was coming from. Him and I loaded up in my jeep and drove 30 minutes to our local hospital. We went straight to the ER where I was sure we would finally get some answers. By the time we got there the pain was gone and he was feeling fine. I explained to them his history, the staggering, the slurring, the confusion. They did blood work which also included a drug test. The results were all negative. Not a trace of drugs in his system and everything else was perfect. No scans, no imaging, no nothing. They said he just needed to rest, drink water and keep his appointment with the headache specialist. I wanted to scream. I wanted to cry. Something was going on with my son and nobody could give us any answers. Somebody please fix him. Somebody please make this pain go away.

Finally, we go back to the headache specialist, this time she wondered if she missed something. She finally decided to order imaging after I told her that I believed it was very necessary. We needed to find out why he is in so much pain. She agreed but still made sure to tell me that she didn’t think anything serious was wrong but she would order an MRI just to “check that box”. I was furious with her lackadaisical attitude but relieved that we were finally getting something done. Of course MRI’s don’t happen immediately, especially if the doctor doesn’t rush it, so we still had to wait a couple of weeks. Meanwhile I researched more and more and all signs kept pointing towards a brain tumor. I didn’t want to believe this but it was the only explanation for everything that was happening. I forgot to mention, he was also having vision problems. His vision would get very blurry and he would always complain that he just couldn’t see right. He couldn’t see right and he couldn’t grab things right. My heart broke for him everyday. My son was suffering and I couldn’t fix him.

The physical pain he felt and the emotional pain I felt was unbearable at times. There were times we would fight and argue. I would tell him he was exaggerating. I would immediately feel bad after telling him that because I could see the pain in his eyes. At this time my now ex-boyfriend and him were also arguing a lot. They clashed. Zachary has always been a very loving, emotional, kind boy and the man that was in my life at the time did not show emotion or know how to deal with older children, much less someone that wasn’t feeling good. This made Zachary even more upset. I started to notice that something was very wrong and that feeling in my gut was very strong at this time. I knew something huge was going to happen, something that would change our lives forever. I grew closer to Zachary and my youngest daughter Genesis at this time. They needed me more than anyone else and I needed to do everything I could to make sure we figured all this out. My oldest daughter April, and my granddaughter Serenity were living in Utah at the time and she was dealing with a few medical issues of her own. Zachary grew close to his big sister and would call her to tell her how much he loved her and just to talk about what he was going through and help her with her fears and anxieties. I think he also sensed something big was going to happen soon. He was concerned with everyone around him. He worried constantly about his family and friends. He grew closer to God and his faith was stronger than ever before. He was on his 2nd year of Confirmation class at the Catholic Church we attended and really enjoyed learning more about our religion and about God. I’m not just saying this because he is my son and it’s what I want to believe. Something just clicked in Zachary. He went from not wanting to go to church on Sundays to looking forward to it. We would often discuss the Priests homily and what he felt it meant.

As the MRI date slowly approached, our “normal” life was about to be over. We would suddenly be thrown into a dark scary world. We did not prepare for the worst. Being an ex military wife we were trained to “prepare (expect) for the worst but hope for the best”, but this time I let my guard down. We went into this very optimistic. Hoping they would maybe find a pinched nerve that was causing this pain, or something simple. We pushed away thoughts of anything serious and hoped for the best. Nothing would ever prepare us for what lied ahead.