In honor of Brain Tumor Awareness Month, I thought it would be a good time to give an update about our warrior.
When my husband and I decided that we wanted to have another, the life we envisioned for our then-future-child was nothing like it turned out to be today. We had our boy name picked out since I was pregnant with our oldest. Fast forward 7 years, and this was still the case.
Ian.
We always fought over the girl name. We didn’t decide on Gabriella, Gabby for short, until a mere couple weeks before she was born. Deciding on a name for the second was no different, but we did decide on one before we found out the gender- Evelyn, Evie for short.
We already had our little girl, so naturally, I think we both wanted a boy this time. We knew we only wanted 2 kids, so one of each was ideal for us. We imagined our little boy rough housing and playing sports. I personally imagined a mama’s boy. But at the end of the day, we ultimately wanted one thing for our child, boy or girl……. to be healthy.
As you probably know by now, we got our boy. And unfortunately, he wouldn’t be the perfect picture of health. The visions we had for him of playing sports turned into looking at four walls of a hospital on a regular basis.
When Ian was born, everything seemed perfect. He was, and still is, perfect, with all 10 fingers and toes. He had a perfect round head and a cute little button nose. He completed our family.
3 months later, when Ian is starting to keep his eyes open longer, I noticed one day that his left pupil looked enlarged. I started comparing both of eyes, seeing an obvious difference in size. I started shining a flashlight in his eye, I guess hoping I would be able to just… fix it. That it was some kind of illusion, and my mama brain was just freaking out. But it didn’t move. I couldn’t even see his left pupil reacting to the light at all. Within a couple days, I had him at his PCP, who sent us to a pediatric ophthalmologist. We would later find out that it actually wasn’t Ian’s pupil that was the problem- he is actually missing part of his iris. The doctor said this would give Ian light sensitivity and his left eye was not as strong as the right. We were told it was a birth defect, everything looks good otherwise, Ian got glasses, and we went home with instructions to follow up every 6 months.
That I could handle.
Fast forward: Ian has his first birthday, and we begin to notice he isn’t quite where his sister was at that age. But we know you can’t compare kids, and we were told that boys develop slower than girls, so we weren’t overly worried at that point. As we rang in 2019, we began to notice that Ian seemed more fatigued than usual. He was falling asleep at times that weren’t his usual bed or nap time, and then still sleeping fine during bed and nap time. This got to the point where Ian began falling asleep in usual spots at unusual times. It started with the couch, which isn’t necessarily abnormal, but since day 1, we were always adamite about Ian sleeping in his own bed so the couch wasn’t normal for him. Then he began falling asleep on the floor in the middle of play time. And the day he tried to go to sleep in the middle of a sprinkler park after he had just taken a 2 or 3 hour nap, I knew something was more was going on. We went to the pcp office, but you can imagine how I sounded going in- “yeah, our one and half year old keeps falling asleep” This is most parents DREAM to have their kids sleep! Because Ian hadn’t hit his head super hard or had any other symptoms, they ruled it as a growth spurt and told us to keep an eye on it.
Well, I did. Because any mama can tell you: YOU know your child best and YOU know when something is wrong. I watched as Ian would randomly begin to sway. I watched him lose his balance in the midst of walking. All things I still didn’t feel were enough to be taken seriously because he’s 1 and still learning how to walk and balance himself. And then one day, I put Ian in his highchair to give him some peaches to eat. I watched him pick up one, and then another, and then on the third one… Ian just stops being Ian. I watched the peach fall out of his hand, I watched a strange look come across his face, and I watched his head drop to the side. I began calling his name, panic sinking the more he didn’t respond to me. I grabbed Ian out of his highchair…his body feeling…lifeless. He wasn’t, he was breathing, but Ian wasn’t there. My Ian always wrapped his legs around me when I picked him up. He always grabbed my hair or my shirt with his little hand. And he always smiled and babbled at me. There was none of that. By the time I thought to get Mike’s attention and get him in here, Ian came to. Mike told me maybe he was just tired… but I knew there was something more. I tried to go about our regular routine, trying to piece together what I just saw and what it could be, only to have Ian fall over in the bathtub hours later with the same look on his face. Again, Mike didn’t see, or I think he would’ve been as scared as I was. I think all along he was… you just never think it’s going to be your kid.
I scheduled an appointment with Ian’s PCP, demanding to see his specific doctor this time. I explained everything to him about what I saw, and he sent us for a consultation with a pediatric neurologist. Ian’s doctor explained to me that he felt this sounded like staring spells, which could be an indication of seizures. We were able to be seen by the neurologist 2 days later, but in those 2 days, I prepared myself to be told that Ian could have epilepsy or some other kind of seizure disorder.
Okay, definitely scary, but I think we can handle this.
July 3, 2019. As I’m explaining to the neurologist the events over the last few months and the things I’ve been seeing, I happened to look over at Ian to check on him…. and there was that look again on his face. I immediately said out loud “That’s the look” …. and next thing I know, my baby is on the floor. One arm and one leg convulsing slightly. The neurologist and my sister-in-law scooped him up, looked him over, and that’s when I was told my son, my baby was having an active seizure and we needed to go over to the ER. I was somewhere between a fast walk and a run, but I don’t remember moving my legs. I was crying hysterically and just trying to breathe. The neurologist helped us bypass registration at the ER desk to get tests going on Ian. Within a matter of minutes, we were in a room, I called Mike and told him he needed to leave work right now and get down to Children’s. Ian’s seizure appeared to stop during the more routine testing (heartrate, blood-pressure, etc.) As the staff prepared to get a team together to get leads on Ian’s head for an EEG, I made a couple more phone calls: my mom, my mother-in-law, and my boss. While getting the leads on Ian’s head, he got himself extremely worked up, which set off another seizure. But this was able to confirm these were in fact seizures. We were immediately admitted.
Next steps involved trying to figure out why Ian was having seizures. They did a routine MRI. And found the tumors. 6 confirmed. Some…too many to count…
Brain tumors. This… this I can’t handle.
Time has felt like a blur since that day. That day, those moments, still feel real and vivid.
We have to see multiple specialists regularly: an oncologist for the tumors, a neurologist for the seizures, an ophthalmologist for the eye defect that’s now believed to be a result of the tumors since one of them is behind the optic nerve. We’ve also recently had to add a new specialist to our mix: a dermatologist. Ian’s chemo from this past year caused him to have a melloscum rash on his side that has yet to go away. One day recently, he randomly broke out in a different rash, which turned out to be viral, but now he’s getting treated for both of these.
On top of the medications for his rashes, Ian also currently takes 2 different seizure meds twice a day, a small dose of an ADHD medication to help focus, and multi-vitamins to help him stay as healthy as possible.
Ian isn’t, and probably won’t be, a professional sports player like we pictured, but he sure is a professional medicine taker!
Things don’t always go the way we want them to. I never imagined my 3-going-on-4-year-old would have been on chemotherapy. You never think happen to you.
We don’t know what our future holds. What Ian’s future holds. But we pray it’s as bright and resilient as he has continued to prove to be. Next month we will probably be on a new chemo journey. Until then, I can’t believe I’m trying to get this kid ready to go to kindergarten! A day I was once terrified we wouldn’t get to see.
I’m thankful for the blessings we have had on his journey. We’ve had many. But the path is a hard one to walk. Please continue to pray for us. Thank you for following our story.
#GoGrayInMay #BrainTumorAwarenessMonth
