I am dedicating this post to something that is very near and dear to my heart. Though the story had been told over and over by now, in some ways it never gets easier.
May is Brain Tumor Awareness Month. My son, now 21 months old, is a survivor.
Since there is so much that we don’t know about brain tumors, the word needs to be spread about their existence and severity as well as possible solutions. I hope that our story is one that will aid in that endeavor.
Almost a year ago exactly, May 17th, we found out that my son had a brain tumor. Through a complete freak accident. That morning, my son had fallen off his changing table. Maybe we should have known that using one was no longer a good idea due to his size and strength, but now we’re glad we still did. My husband was the one changing him that morning while I got ready for work. The sound from him falling had me rushing from my bath to see what had happened.
By that time, he was already holding him, all seemed well. He said our son had fallen on his side and knocked himself on the head a little. Since he seemed to be alright, I went ahead and drove to work, both of us with the understanding that if need be, I would come home.
A little bit later, maybe two hours in to my work, my husband said our son started to act a little differently. More tired than his normally hyper self. He’d wake from one nap and want to take another. Without hesitation, I went home and we decided to take him to the ER. It was better to look like the crazy overprotective parents, than not take any action when it could be needed.
We couldn’t have been luckier with our choice of hospitals. St. Alexius Medical Center had a wonderful emergency room for kids that we had been at before, and went there that day. The doctors and nurses were all amazing, letting us know that this happens so many times, and even if we are the first case of the day, we will definitely not be the last.
The doctor was not worried at all after doing an external exam, but decided to move forward with a head CT. We are not sure what made her take that step further (we couldn’t be happier that she did). Some would call it divine intervention, some would call it luck. This far down the road, I don’t care what you call it, I’m just beyond thankful that something made her do that.
It was that same doctor who had to come in, one nurse in tow, and break the news that they had found something. Through all the rush of emotions in that moment, I couldn’t help, but feel bad for that doctor. She was the one that had to break such terrible news to the parents of such a young child. He was ten months old, and she had to tell us that we would be staying at the hospital.
We didn’t get to go home that day like we thought we would. I even planned on going to Target, getting all the random things that were missing around the house. Instead, we had to make the worst phone calls of our lives. We had a priest called to calm me down.
The next test, an MRI, showed us exactly what we were looking at. It was huge. Unbelievably so. How in the world did that fit in his head? But we were in good hands.
By then, the hospital called in the best neurosurgeon they had. That man is truly brilliant. He is a godsend. And so is the technology that he ended up using.
This is where my little rant heads towards that wonderful piece of technology. Nico Corporation had developed a technology called Brian Path. We found out that this is a piece of technology not widely used even though it makes surgery so much easier and so much more effective.
Later, we were made aware that had this technology not been available, or our doctor not been able to use it, there was such a high chance of recurrence or side effects. When it comes to brain surgery you are so worried that this little person, or any person, will not be the same again. Brain Path completely eliminated that fear. We went home two days after! How amazing is that!
I am hoping that, during this month of Brain Tumor Awareness, more people, more doctors, push for this to be used on a larger scale. It has such broad application possibilities it is hard to understand why all doctors do not want to move forward with learning about it.
I am hoping that anyone who reads it who is currently going through something similar themselves, or know someone who is, can take something from this. There is always hope, there is light at the end of the tunnel. There are also other options besides the traditional way of doing surgery and every individual has the right to push for it.
I am hoping that any parent who reads this and may be going through this, knows that there are others who understand. It is the worst time of any parents life to find out that your child is moments away from a tumor change their entire life.
I am hoping that parents who doubt themselves, worry about going to the doctor, worry about looking crazy, trust their instincts. Like I had thought to myself then, it is better to look crazy than not take any action.
In the end, I want to thank all of those that had been with us through this entire process. Thank those who worried with us and prayed with us as we watched our son hooked up to various machines, IV’s, go through MRI’s, go through surgery, and come out completely perfect on the other end.