Our Story: Trust your mom gut!

Learn More About Brain Tumors in Children

By Lauren Hanson April 19, 2019

As a parent you would do pretty much anything to help your children feel better.  Although, you might wait a couple of days before taking them to see a doctor in fear of getting the embarrassing "it's just a virus" diagnosis.  I am writing this article to reinforce that parents should follow their gut instincts when it comes to their children's health, even if it means that embarrassment. 

On March 3rd, I was worried about my youngest child.  He had been throwing up over the course of a week. He'd eat, no fevers, but seemed gaggy and would throw up after napping. I could tell it wasn't a stomach virus from that information and his temperament. After having it for a few days I was worried about dehydration. So off I took him on the third to our local Urgent Care where I was informed that Junior was only constipated and should take some pediatric laxatives.  On the 6th, Junior was scheduled for his 18 month checkup (a month late due to scheduling difficulties).  I told this secondary pediatrician (primary was overbooked) about his symptoms, medicine, and how he still wasn't any better.  The two of us deduced that it could've been acid reflux due to the gagging after laying flat and Junior received some reflux and nausea meds.

By the weekend Junior was so off balance, he gave up on walking and then even crawling.  He was also tired, cuddly, whiny, and was having some spacing out episodes which were all out of character.  My mom gut was still telling me something more was going on so I went against a few family members and took him to the doctors for the third time, second time to Urgent Care.  I had my niece ride with me in case he started throwing up or anything on the ride.  It was a good thing too because he did have an episode and while taking a quick glance in the mirror I seen his eyes space out, flicker, and roll - seizure.  He came out of it with a whine and I kept on going.  

When I arrived at the Emergency Room (they labelled us for the ER instead of Urgent), Junior was so lethargic he let the doctor do anything he wanted to without whining or moving.  This concerned the doctor the most and started him on IV treatment.  The only blood work that came back with anything said that he was very dehydrated so we had to stay overnight.  This was a Sunday night and Junior still wasn't back to his normal self by Wednesday thus they scheduled him for a MRI of his head and spine.  Almost right away we were called into the consult office and Junior was still in the scanner.  His doctor had brought another doctor, a nurse, and a counselor into the room where myself, my husband, and my mom were.  They brought up his MRI scans on a computer.  Slowly a big open area in his head appeared. This we were told was a large build up of brain fluid but that wasn't the main cause of Junior's illness.  Further into the head we went until a mass appeared sitting between the brain stem and the cerebellum, squishing them.

We heard the dreaded word: TUMOR.

Next thing we knew, I was grabbing my coat and phone and being rushed to meet up with my son to go to the American Family Children's Hospital in Madison, WI.  When we got there Junior's vitals were still steady so they didn't need to rush him into surgery.  Instead he went in the next day at noon to get a fluid drain and pressure monitor put in and then his tumor removed.  He got out of surgery by ten that night.  At two in the morning they took him in for a follow up MRI which showed the doctor had miraculously gotten the whole tumor removed!  Yes, we were in the all clear right? Nope, still had to wait for the tumor lab results...

Another dreaded term: Cancerous (grade three, aggressive). Specifically an ependymoma. 

My son during our two week stay in Madison was also going through physical and occupational therapies to try to get him moving again, better motor skills, and correcting his eye movements. While going through this our son still did not want to eat much and seemed to gag or cough after certain foods.  They did a swallow study and found that his swallowing was not going so well. This caused him to be put on a soft mechanical diet and needing a GI tube for night feedings.  They were able to take out his fluid drains and pressure monitor in the same time-frame as putting in the GI tube.  Then before we could leave Madison and start radiation in La Crosse, they had to install a Hickman catheter and show us how to take care of that, his meds, and his feedings.  Currently we are on week two of 6.5 weeks of radiation.

The point of this article?  It's a reminder to trust yourselves if you think something is wrong.  It is also to bring awareness to brain tumors and brain cancer as they are often misdiagnosed several times before finding them, especially in children too young to tell you what is all wrong.

According to some common signs are: 

  • vomiting
  • seizures
  • weakness of the face, trunk, arms, or legs
  • slurred speech
  • difficulty standing or walking
  • poor coordination
  • headache
  • in babies and young toddlers, a rapidly enlarging head

Now in looking back we can figure Junior had this tumor before he was even a year old.  He started walking at a year, but was never steady. He wouldn't say too many words, couldn't use feeding utensils, had a hard time adjusting to sippies, and seemed to rub his face and head often.  Those were signs but we only thought he had a slight delay, inner ear balance issue, or was just ready for a nap.  As a parent you feel guilty now having to look back at the missed signs, thinking of how your child must have suffered. Even if you didn't know and it isn't your fault, there is still guilt.  At least we discovered the tumor before it was too late, which according to a doctor in Madison we got close...

I do want to give a huge shout out to Gundersen Lutheran La Crosse for finding the tumor, American Family Children's Hospital for their wonderful staff, Children's Miracle Network for the gas card, and the Ronald McDonald House for helping us with lodging while staying in Madison.  You never really understand the importance of donating to these causes until you yourself need to use them.  Also, a big thank you goes to our wonderful friends and family for their support as well.  We are not at the end of this long journey yet, but we will get there.

**Did you know that a huge part of keeping the Ronald McDonald House going is not just money but pop tabs?  If you already drink anything out of a can, please save the tops and donate them to your local RMH! You never know if your family could be affected and need them...