by Lori Jeffs, Mason’s Mom
Salt Lake City, Utah

Mason is an intelligent, funny, and independent child. He participates in karate and swimming. I always call him our little engineer because of the things he creates and builds. He loves anything space related and wants to be an astronaut when he grows up.

I’m writing this during week 8 of our stay at Primary Children’s. Originally we were supposed to be here for 10 days. No one, including our surgeons, could foresee the complications that Mason’s tumor resection surgery would cause. But, I need to start at the beginning.

Mason started having headaches in June of 2011. We monitored his symptoms for a few months, but they became unbearable. His pediatrician sent us to Primary Children’s to have an MRI on December 20^th.

Mason was diagnosed with a Craniopharyngioma, which is a benign tumor that develops near the pituitary gland. This tumor most commonly affects children 5-10 years old. Mason being 7 ½ fell right in the middle of this statistic.

This was the day our world turned upside down and nothing - I mean nothing - else mattered but getting our child better. As a parent, you’re never prepared for this type of news. I can’t even explain the devastation and helplessness I felt.

When we told Mason about his brain tumor and that he would need surgery on his head, he said, “Aw, I wish it was before Halloween so that I could be Frankenstein.” And so begins the story of our brave little man’s courage and strength for all the weeks that followed.

Mason’s tumor resection surgery was on December 28th. We were told the surgery could take anywhere from 5-10 hours. I thought, are you trying to drive a parent insane making them wait that long? But, when our neurosurgeon came out after only 4 hours, we were concerned. Mason had a vessel which had grown through his tumor - this cannot be seen on a MRI. Our renowned neurosurgeon said he hadn’t seen anything like this.

He felt it was just too risky to go any further at that point. However, they were able to remove about 3/4 of the tumor. This pesky vessel caused severe bleeding during the surgery, which caused a stroke on the left side of Mason’s brain. If you’re not familiar with strokes, the opposite side of the body is affected. This stroke caused Mason’s dominant (right) side to be weakened. I know without a shadow of a doubt that our highly skilled neurosurgeons saved Mason’s life that day and in the days to come.

After surgery, we finally got to see Mason in the Pediatric Intensive Care Unit (PICU). We walked into his room, and he looked a lot better than we imagined. He had many IV’s and tubes coming out of him. There were also a lot of stitches going across his head along with a bolt (yes, it is called a bolt) which measures internal brain pressure. He still looked like our little man, but just a bit like a bionic boy. And of course, Mason would have been pleased that he kind of looked like Frankenstein – geez!

About 5 days after surgery, we found out that the pooling of blood on the brain caused the blood vessels to constrict (called vasospasms). We’re told this normally only happens in young adults or adults - not seven-year-olds. I’m thinking you’ve got to be kidding me! Can one more thing go wrong, give this poor kid a break.

Around the second week of January, he was medically stable enough to move over to the Neuroscience Trauma Unit (NTU) to continue his healing and start therapy. At this point, Mason had only spoken a few words, couldn’t move his right side, hadn’t walked, and could not eat. We found ourselves wondering if we would ever see the boy we once knew.

Today, I’m happy to report that Mason no longer has a feeding tube (and he is happy about that.) He has immensely improved in just weeks. He’s walking with a brace on his right leg and talking up a storm. To our surprise, he reads as well as he did before. Our main struggle now, is short-term memory loss caused by his stroke. Some days he cannot remember the month, what he ate for lunch or even what he did 5 minutes ago. And due to the language deficit from a left side stroke, he may know what a frog is but cannot speak the word he knows is in his brain. It’s frustrating for him, but he doesn’t give up.

As parents, we noticed changes in Mason’s condition, often before the staff. You need to be aware of what is going on with your child, and you need to BE YOUR CHILD’S VOICE and SPEAK UP. The staff at Primary Children’s told us several times that they wish more parents would speak up and advocate for their children. As parents, we know our children better than anyone else. Don’t be afraid to say how you feel or if you notice something seems off or wrong - SAY SOMETHING!

Mason is scheduled to be discharged from Primary Children’s the first week of March. He will continue outpatient, physical therapy, occupational therapy and speech therapy. This is going to be a long year for all of us. We’ve grieved the partial loss of our son and what our “normal” life was. But, we are ready to embrace the “new normal.” We were given a second chance to all be together, and that really is all that matters.

If I could pass on one piece of advice. Be present, be patient, be loving and just be there for your children. I know this is difficult in our fast-paced world, but has anyone ever regretted getting an extra hug? You never know when your life can change in a moment - ours did.

We always knew we had a special child, but WOW what an extraordinary boy! We’ve been told he’s an excellent patient and the staff actually fights over who gets to take care of him - which is pretty cool. Daddy calls him “his hero” which he truly is. He has survived some of the worse complications of a brain tumor. He’s astounded neurosurgeons, and the PICU and NTU staff. We’ve said all along, “Don’t underestimate this child.” Who knows maybe he’ll be the first astronaut that had brain surgery and is still capable of traveling through space.

We’d like to thank the amazing neurosurgeon team as well as the numerous physicians, nurses and techs at Primary Children’s. We’d also like to thank the radiology team for all their kindness and support during the numerous tests Mason had. Without our nurses, I don’t know what we would have done. I don’t think any of us would have survived the long haul (there are just too many names to mention, but you know who you are). We’ll miss your smiling faces, but we won’t miss the four walls of our hospital room!

Story Lines is a feature on Play Ground telling personal stories and experiences about the hospital – written by the individual. If you would like to share your experience on the blog, please contact us.