“My son just wanted to be a kid again.” A mother’s quest to find an answer to her son’s pineal cyst.

By Jessica Large, mother of Brayden Large

As a mother, I know things about my children that no one else on earth knows. I felt them move in my body before anyone else. I know them each by smell, a primal instinct God imbedded in my DNA. As babies, I could pick out their cry from a roomful of crying infants. Now that they’re older, I can tell which one is walking down the hallway by the sound of their footsteps.

Because they were a part of me before they were ever a part of the world, I know their needs better than anyone else. That’s why, last year, when we got the news that my oldest child Brayden had a pineal cyst in his brain, I knew I couldn’t stop looking for help for him until I found the right answer.

“My worst fears”

I still remember the phone call from the nurse telling me that Brayden’s MRI results had come back and warning me not to freak out. She didn’t need to warn me. For two years, I had known something was wrong. Brayden, then 10, had long suffered from headaches and nausea, but his symptoms had gotten worse. His headaches became severe and he vomited every day. He complained about dizziness. He lost his balance. The muscles in his arms twitched uncontrollably. Although he had been in vision therapy for a year, he had made zero progress.

The MRI confirmed my worst fears. Brayden had something in his brain called a pineal cyst, a small fluid-filled sack literally in the center of his brain a bit above his spinal cord. It’s not precisely clear what the pineal gland does in our brains, but it is believed that it produces some of our melatonin we need for a healthy sleep cycle. At first, we were told that pineal cysts did not cause the symptoms that Brayden was experiencing, but I refused to accept that explanation. The words “cyst” and “brain” did not belong in the same sentence as my child’s name. I resolved to fight to find him help.

During the many hours I spent researching Brayden’s diagnosis online, I stumbled upon a Facebook group for people who suffer from this condition. It was there that I learned about a neurosurgeon in Houston named Dr. Dong Kim who helped people like Brayden. I watched Dr. Kim’s webinar. I spoke with other parents who were seeking treatment from him. After another physician in Seattle told us there was nothing he could do for my son, I immediately leaned over to my husband and said, “We are going to Houston.”

“Never without pain”

By this point, Brayden had become very sick. He could no longer play ice hockey with his team. Most days, he only had enough energy to lay in bed and watch movies. His attitude had taken a worrying turn, so I asked our pastor to speak to Brayden and see if he would open up. Our pastor took Brayden out for a special afternoon of hot cocoa and guy time.

It was there that Brayden revealed the truth: that he was never without pain, that it was his constant companion, but that he didn’t tell me how bad he felt because he didn’t want me to worry. He also revealed that he was concerned that having brain surgery would erase all of his good memories and he wouldn’t be able to remember the things he cherished. This broke my heart. My baby was in pain and I couldn’t fix it. I couldn’t make him better and I couldn’t stop what was hurting him. But I could do whatever was in my power to find someone who could.

The day we got the call from Dr. Kim’s office that he had agreed to see Brayden for a consultation visit was one of the happiest days of my life and the most terrifying as well. The staff at Memorial Hermann Mischer Neuroscience Institute was so kind and loving, I honestly cried when I got off the phone because I felt like they actually cared about us. We weren’t just another number to them.

My amazing sister-in-law paid for our flight to Houston and we packed our bags to meet the man who is known as the ‘best of the best’ when it comes to treating pineal cysts. But an hour before Brayden’s appointment, I was sitting in our hotel room having a panic attack. I was so scared that we would be told there was nothing that could be done. “What if we came all this way for nothing?” I cried to my mother.

The minute Dr. Kim walked into the room, we knew we were in the right place. He was amazingly kind and reassured me that he would take care of my baby boy. Words can’t describe the relief that I felt leaving his office knowing that in six weeks, we would return for surgery. Yet, the anxiety I was feeling before the consultation had been magnified by one million. I had just elected for my child to undergo brain surgery!

“The right decision”

The people in our little town of Blaine, Washington came out in swarms to support our family, hosting fundraisers to help us cover the cost of surgery and travel expenses. My new friends from the Facebook support group gave me invaluable advice to help me prepare for the surgery. But as the big day neared, emotions were running high and our family was in turmoil.

Easter is typically one of my favorite holidays, but this year, it was full of tears. We were slated to depart the following morning for the surgery which was scheduled later that week. As I sat in church during worship that morning, I held on tightly to my daughters, Meghan, 9, and Ella, 7, who were crying because they were worried about their big brother. Our friends had graciously offered to watch the girls while we were in Houston, but we had never been away from our children for such a long time. Then, that night before bed after we dropped the girls off at their friends’ house, I went to our kitchen and found Brayden curled in a ball on the floor sobbing so hard I couldn’t understand what he was saying. His father and I hugged him tight and assured him that he would be fine, but we were just as scared as Brayden, if not more so.

The night before his surgery, I packed a bag for the hospital just like I did the day Brayden was born. I made sure to bring Brayden’s favorite stuffed animal and earplugs for him in case the recovery room was loud. Brayden was very quiet on the way to the surgery check-in. We all were. I knew Brayden was getting the best care imaginable. I knew Dr. Kim and his staff knew what they were doing. But a little piece of me still questioned whether I was making the right decision for him. A little piece of me still wanted to scoop him up and take him home. But as that thought streaked across my brain, I looked at my terrified child and saw that once again his pupils were two different sizes, a common side effect of his pineal cyst and a sign that another headache was on the horizon. I knew then that we were doing the right thing.

I had bottled up my emotions for months to stay strong for my son, but as Brayden was wheeled back to the operating room, I let go of all of my worries and fears and cried into my husband’s chest. We found a private corner with a few chairs and a couch outside and waited for the updates. I busied myself with other things – taking several walks, updating Brayden’s grandparents – and before I knew it, I looked up to see Dr. Kim with a beaming smile. He sat down next to me, gave me a hug and told me it was all over.

I loved this about Dr. Kim. He was always very compassionate with me as Brayden’s mother. He understood that this wasn’t easy. I was putting the life of my child into his hands and praying that it would be okay. He completely understood that, as a parent, this was the most nerve-racking thing that we would ever go through!

About half an hour later, Dr. Kim came back and asked if we were ready to see Brayden. I was nervous. I didn’t know what exactly to expect. For the past few weeks, I had been trying to memorize the back of Brayden’s head, knowing that it would never look the same. As a mother, it bothered me to know that my child would be altered in an irreversible way.  Dr. Kim, being the amazing comfort that he is, placed his arm around my shoulders as he walked me back to my boy. It was only a short distance but it felt like we walked for days. At the end of the room, there was my little boy laying there, not quite asleep, but not quite awake either. Dr. Kim warned us that he would be nauseous and probably not have an appetite for the next three days. He gave me another hug and left us to be alone with our son.

“His childhood back”

We spent two nights at Memorial Hermann Mischer Neuroscience Institute at the Texas Medical Center and at no point did Brayden feel nauseous or get sick. In fact, the minute he got into his room about an hour after surgery, he ordered a hamburger and french fries! He spent a total of two nights in the hospital before he was released to go to our condo nearby where we hunkered down for the next week. Brayden was very sensitive to light and sounds, so he spent most of the time in a dark bedroom sleeping while Jeff and I tried to stay as quiet as possible.

Five days after surgery, we were able to remove the bandages from Brayden’s head. I was too nervous to do it, so I made my husband remove them while I snapped pictures for Brayden and tried to maintain my composure. I fought back tears as Jeff revealed the 21 stitches in the back of Brayden’s head. I knew the wound was only temporary and that his hair would eventually grow in and cover the scar. But that moment was one of my hardest as a mom.

Brayden healed so quickly that we were able to take him on a mini sightseeing tour across Texas, visiting the Alamo and Space Center Houston, Brayden’s favorite. Finally, he got his stitches out and we bid Dr. Kim goodbye before we flew home. In some respects, our three weeks in Houston felt as if they had flown by, but in other ways, it felt as if a lifetime had passed. My heart ached for my two little girls and Brayden dearly missed his sisters as well. The minute we arrived home, Brayden ran straight into his sister, Meghan’s, room and woke her up. Ella had fallen asleep in the hallway trying desperately to stay awake until we got home. I scooped her up and snuggled her tightly until she woke up, looked at me, and then jumped out of my arms to run over to hug her brother. It never felt so good to be home and to have our family whole again.

It has been nearly three months since Brayden’s surgery and we continue to be amazed by the drastic changes we are seeing in him. Before, we always begged him to go outside and play with the neighborhood kids. Now we can’t get him to come inside. The constant pain and headaches are gone and so are the muscle twitches in his arms and the double vision. He has energy and he just wants to be a kid again, something his cyst robbed him of for the past several years. I have to constantly remind him that he just had brain surgery. Even though he feels better than he has in years, his brain still needs to rest. I have to practically force him to take a nap when he needs it.

That’s not to say that Brayden’s challenges are over. Dr. Kim and his team are keeping a close eye on Brayden for the next year and possibly longer. His vision has improved tremendously but he still needs treatment, and he will soon restart vision therapy.

Still, Brayden’s recovery has blown everyone away.

I had hoped I was making the right decision for my son. I knew he needed help even when it seemed as if I was the only one in the world who felt that way. But to see my child get his childhood back, and in ways that I never could have imagined, there are no words to describe how good that feels. Brayden has a very bright future ahead of him, free from the terrible splitting head pain, nausea, and dizziness that plagued him for years. That is all thanks to one doctor who listened when this mother called.

Read more about Brayden’s journey back to health. Learn more about how pineal cysts are treated and diagnosed, with a special video presentation by Dr. Dong Kim, the director of Memorial Hermann Mischer Neuroscience Institute at the Texas Medical Center and professor and chair of the Vivian L. Smith Department of Neurosurgery at McGovern Medical School at UTHealth.

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