Feature Mama of the Month

“Beating Joe Bully”

Nikki Pierson and her husband Steve had the perfect life. A beautiful home in a northern suburb of Minneapolis, full-time jobs, three healthy children, and according to Nikki, she and Steve were just “doing life and fulfilling all of the dreams we have for our families.” Their kids, Grace (6), Gavin (5), and Gage (2) were growing and looking forward to their bright futures ahead.

Nikki began her story by sharing, “We always worry about accidents or something happening to our child, but I was really not prepared to think that my kid could have cancer.” Her son Gavin, 5 years old at the time, was healthy and training to be on theIMG_6108 gymnastics team. He had really good balance, could do headstands and flips, and climb a 40-foot rope. But one spring night Nikki and Steve noticed that he was acting very strange with his eyes. Instead of using his eyes to look up he was pulling his whole head back. Since he hadn’t complained of headaches or nausea, Nikki figured it wasn’t something she needed to worry about. Additionally, she noticed Gavin’s eyes were a little watery. She brushed it off to seasonal allergies. She shared, “At that moment I thought, We’ll fix it, it’s fine.”

Her aunt, who is a pediatric doctor, arrived at their home to celebrate Grace’s birthday. She took one look at Gavin’s eyes and ordered Nikki to take him to Children’s hospital immediately. She remembers feeling, “sick… I need to listen to her and go to the hospital. But she had to tell me numerous times, ‘Nikki, you need to go now.'” Her aunt knew at the time that there was something causing his eyes to do that–possibly meningitis or worse, a tumor.

Upon arrival the scans showed exactly that: a golf ball sized tumor in Gavin’s brain. Nikki and Steve were devastated. She remembers walking out of the room and everything was blurry. It was so bright and she could not stop her tears. She cried and cried in the hallway of the hospital and recalled a nurse who approached her and said, “If it’s the type of tumor I think it is, it’s a good tumor to have.” Nikki held on to these words and began the fight of her life for her son.
 “I can say that at that moment it changed who I was as a person. As a mom, I realized that my kids were no longer invincible and it didn’t matter about any of the decisions I made. We think we’re doing it right and our kids will be ok. I remember thinking, What did I know. There was nothing I could do about it, and I could no longer protect him the way I thought I could. This loss of control is like no other. Now I need to help my kid fight.”

Gavin had a few brain surgeries the first day. They made a pathway for fluid to drain by draining his ventricles. Gavin was then diagnosed with a germ cell tumor (Teratoma) in the pineal region of his brain and it was partly cancerous. This unique type of tumor had been growing since birth. When babies are growing, from the moment of conception, reproductive cells travel to the reproductive organs; however, some of Gavin’s cells traveled in the wrong direction and ended up in his brain. Some well-meaning people, likely out of fear, suggested that there should have been symptoms. There had to have been something that caused this. But there was not. It had been out of Nikki’s hands since Gavin was born.

The next day was Easter 2012. Gavin wore an eye patch to help with this eyes post-surgery. They met with an oncologist and an ophthalmologist. Gavin’s surgeon, Dr. IMG_6106Petronio, at Children’s Hospital in St. Paul Minnesota, was not comfortable performing surgery yet. This wasn’t the type of tumor you can just take out. Because of its location, it was a very delicate approach. His cancer markers had shown elevation, so perhaps they could shrink the tumor and operate at a later time. Their goal was 6 months. Nikki felt a sigh of relief and thought, “We have a plan.” 

They had an outpouring of support. Friends, families, co-workers, and their village, helped them navigate this tumultuous time. One of the ways Nikki coped with the stress of the journey was her  Caring Bridge Site. When asked if she considered counseling IMG_6109during this time, Nikki replied, “I had family within arm’s reach at all times. And these are the type of family you need–the ones you can say anything to–anything that’s on your mind and they are there for you. If I hadn’t had that, counseling would have been on the table. I wrote on my Caring Bridge Site site to relieve the stress through those times.”

Gavin started chemotherapy and was given a g-tube for nutrition. Chemo went as expected. The first cycle went well, but sadly, the second cycle made him very sick. He was vomiting, dizzy, and lost his hair really quickly. She shared through some tears, “I remember thinking that it was such a heartbreak to comb his hair and how sad it was to see him like this. Everything you do to nourish your child, that was a sign of it all going backward. We had to be so careful of germs, and I remember thinking that it would be so nice to worry about the things I used to worry about. And I don’t know how I could have done this if Gavin wasn’t the kid he was. He was so in tune with everyone else’s feelings and I thought, If I can prepare my kid in this way, to go through this with this strength, I have done my job.”

Aside from Gavin’s strength, she also felt so proud to watch the caring sides of Gavin’s siblings, Grace and Gage. Despite also having to deal with grown up feelings and the thought of losing their brother, they were able to demonstrate incredible compassion through this journey. Their friends and family also continued to uphold them through this time. “Our village helped mother my children with me. It’s hard to balance that when you’re taking care of a sick child. There were so many people who helped do things that I could not. And I wasn’t prepared for the next wave of news. The time had passed and we learned that Gavin’s tumor had grown and was now the size of a peach.”

They were defeated and out of options. They moved forward with 3 craniotomies in 7 weeks. They spent their entire summer in the hospital. Things continued to decline. Between surgeries, they would remove some of the tumor but the tumor would continue to grow. They were not going to be able to keep up with its growth, and these surgeries were really just a way to keep him alive. Nikki went into full-on research mode. Any spare moment she had she was scouring the Internet looking for hours on end.

She discovered a trial that had only been used on adults. After contacting the drug company and initially being shut down, she exhausted all options. Media attention, news stories, social media petitions, she did it all. She knew that if they did not approve this, that Gavin would die. They saw that he was slowly declining and losing different abilities and functions. It was a matter of time before he would no longer be able to fight against Joe Bully, the name they gave to the tumor growing in his brain. After months of trying to gain attention, and promising that if they didn’t approve it, Nikki remembers saying that she would march to their office with Gavin and beg for his life. But Pfizer, the pharmaceutical company with the drug Gavin needed, gave him the approval he needed under their Compassionate Use treatment plan. This medication would allow the proteins in the tumor to stop and “check” before reproducing. People questioned Nikki and Steve’s fight: “Why would you push him through this?” and, “Maybe it’s just his time to go…” were just a few of the things they heard. Except that what those people didn’t know, was that Gavin was pushing them. He was pushing his family to help fight for him and promising them that he was going to get through this. And amidst all of his grown-up experiences, Gavin began using the drug Palbociclib (Ibrance) and started to improve. The tumor had stopped growing!

They spent the summer in a semi-normal fashion and among appointments and therapy they were able to live life and not live in the hospital. Shortly after, their surgeon, Dr. Petronio, had some groundbreaking news for them. He had found a laser. And although it had never been used on a pediatric patient, he would be able to ablate (destroy) the tumor. Gavin was the first child to do that. He continued to stay on the drug and the surgeon used this laser every 3 months to kill Joe Bully. This process was successful, and it killed the tumor from all angles. Gavin fought his Bully and won.

Two years of no treatments and post-surgery, Gavin was back on his feet. Between school, karate (he has amazing core balance because he needs to constantly adjust from imbalance), and being a kid, he was able to live life and not think about what had happened to him. Nikki shared, “I used to think that anything that happened, I would just fix it and move on. But you can’t always do that. I’ve learned to find joy in today, right now in this life because I can’t fix it and plan. No matter what I do, it’s not my fault. It’s hard not to have that feeling as a Mama. He shouldn’t be 12 right now. He made it when a lot of kids don’t. We try to remember that when times are frustrating. Now, as a 12-year-old, he’s getting older and reflecting on what happened and he used to be so positive. Now he’s looking at himself wondering why he’s different. People will ask things like, ‘Is he normal now?’ to which I think, He’s the same kid and he’s gone through hell. Yeah, he’s pretty normal. My son is growing and had to do all this learning about life and he’s thriving and he’s smart. They don’t realize that it’s amazing that he can do what he’s doing. He could be so many other things. But he re-trained his brain and worked his a** off as a child.”

IMG_5757Nikki, in all her amazing Mama glory, closed our story off with this. “I am a strong person but sometimes things come up and I’m done. I’m bawling. I’m sobbing. I’m right back to a moment where something changed for us. The fear and the worry, it never goes away. My heart will always be broken. People don’t always see that–that we Mamas have these pieces in our hearts that require us to always be so strong for our kids.”

Watching this beautiful Mama share her story inspired and dazzled me. I have watched her from afar and saw her grace, her dedication, and her knowledge help save her son’s life. Her son Gavin is now in 7th grade at the middle school where she teaches and she can’t wait to “build relationships with the people that surround Gavin at school and in our community. I want people to know that we’re a regular family and I want to show them that they can have people in their life who treat them equally.”

Nikki has been sharing her story worldwide now with pharmaceutical companies at conferences. She is able to bring their story to life. These companies, who in their little labs, created a medication that ultimately helped save her son’s life. She brings these people to tears by telling her story. If you’d like to read more about Gavin’s journey, please feel free to purchase her book, Be Strong and Brave.

And with that, another Courageous and Amazing Mama is here telling her story.  We never know what Mamas are experiencing. But we can always remember to approach each other with grace, love, and kindness to help ease whatever it is that’s going on in her life. As always, the more we do this, the wider [and deeper] our Band continues to grow.

XO,

Linds

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