Beating brain cancer and giving back: Brodie’s story

Brodie’s cancer survivor party was a chance to celebrate the completion of his cancer treatment by gathering his family and friends for an epic Nerf battle. Wanting to give back to other CHOC Children’s patients, the twelve-year-old boy turned his celebration into a fundraiser. Brodie used the proceeds to buy Legos, journals, games—all his favorite things while in treatment—to brighten the days of other children battling cancer.

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Brodie and his brother shopping for gifts to donate to CHOC patients.

“He wanted to buy more of the things that helped break up his time while he was at CHOC,” says mom Megan. “If you ask Brodie what he wants to be when he grows up, he says ‘I just want to make people happy.’”

Brodie’s journey to a diagnosis

Brodie’s path from initial symptoms to a diagnosis was long. While practicing karate at home, his dad Marcus noticed that his left side didn’t have any “oomph.” Over the next few days, he and Megan realized Brodie was losing coordination in his left hand and left foot.

The first few doctors who saw Brodie ruled out a tumor but couldn’t identify what was causing his loss of coordination. An MRI revealed something on Brodie’s basal ganglia—a collection of nerve cells deep within the brain that help control movement. They were eventually told that Brodie had likely suffered a stroke. Later, another specialist thought it might be iron accumulation on the brain.

“Something looked wrong, but nobody could tell us exactly what it was,” said Marcus.

The family spent 18 months crisscrossing the country, seeking out various pediatric specialists on their quest for answers.

During this time, Brodie had another issue—every five months or so, he would go blind in his left eye for a few days. There was no discernible reason for this loss of vision.

Their quest eventually led them to Dr. Raymond Wang, a pediatric metabolic disorder specialist at CHOC Children’s. He was able to rule out a genetic reason for Brodie’s symptoms, and encouraged the family to seek out the care of the CHOC neurology team. The next time Brodie lost vision in his eye, the family headed for the Julia and George Argyros Emergency Department at CHOC Children’s Hospital. Brodie underwent another MRI, but this time from a different angle due to his eye condition.

They found a tumor.

Another starting line

“The news that Brodie had a brain tumor was not the finish line of the 18-month journey we had been on,” Marcus says. “That was actually the beginning of yet another journey, this one at CHOC.”  

The family was introduced to Dr. Ashley Plant, a pediatric oncologist at CHOC Children’s.

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Dr. Ashley Plant, a pediatric oncologist at CHOC Children’s

“Not only was she professional and a top-quality doctor, but she was also very warm and empathetic in that first meeting,” Marcus says. “She even gave my wife a hug, which made a lasting positive impression.”

Dr. Plant explained that Brodie needed to undergo a biopsy to determine whether the tumor was cancerous or not. Dr. Joffrey Olaya, a pediatric neurosurgeon at CHOC, performed the biopsy.

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Dr. Joffre Olaya, pediatric neurosurgeon at CHOC Children’s

“I was scared to death when he went in for the biopsy. But I knew we were in very good hands with Dr. Plant and Dr. Olaya,” Marcus says.

The biopsy confirmed the mass in Brodie’s brain was a cancerous tumor known as a germinoma. Germ cells are the reproductive cells in an unborn baby. Germ cells that grow in an unusual way can become a tumor. Often, those tumors form in the ovaries or testes. Sometimes during an embryo’s development, these cells can migrate to the brain and result in intracranial (within the skull) germ cell tumors.

A doctor unlike the rest

Throughout their lengthy journey to find a diagnosis, Megan and Marcus had met many different specialists. They consider Dr. Plant a guide on their son’s treatment journey.

“We were, and continue to be, super impressed with Dr. Plant because not all doctors are like her, and we’ve seen a lot of doctors,” Marcus says. “That doesn’t mean they’re not good, but they don’t all have the same bedside manner as she does.”

Throughout the course of Brodie’s treatment, Megan and Marcus had a lot of decisions to make. In those difficult moments, Dr. Plant was right beside them.

“She provided us with all the information we needed to make responsible decisions, but didn’t make decisions for us,” Marcus recalls. “She helped us make the ultimate decisions as his parents.”

Brodie’s treatment plan included six months of chemotherapy at CHOC, followed by seven weeks of proton radiation in San Diego.

Post-treatment, Brodie has returned to CHOC every few months for an MRI of his brain and a check-up with Dr. Olaya.

“We were so grateful to have Dr. Olaya in our corner because he’s always on the ball. He’s very sharp and conscientious, but also very caring,” Megan says. “It might tell you something that when Dr. Olaya comes in the room, Brodie jumps up and gives him a bear hug.”

Finding a familiar face at CHOC

While Brodie was admitted to CHOC Children’s Hospital for chemotherapy, he was visited by a child life specialist from The Cherese Mari Laulhere Child Life Department, a group who strives to normalize the hospital environment for children and their families.

Child life specialists can engage patients in medical play to help them understand procedures and make tests less scary, bring their favorite toys and movies to their rooms, and show them amenities around the hospital like Turtle Talk and Seacrest Studios.

Shayli, the first child life specialist to visit Brodie’s room, turned out to be an old family friend.

“She looked familiar, but as soon as she said her name, a lightbulb went off—we knew her!” Marcus said. “Megan and I have been friends with Shayli’s parents for years, and they’re great people. But we hadn’t seen Shayli since she was a baby—and now here she is, taking care of our son.”

Shayli knew that Brodie loved Star Wars, so whenever characters would make special visits to the hospital, she made sure they didn’t leave before making a special stop in Brodie’s room.

Although Brodie spent a lot of time in his room resting during chemotherapy treatments, he made many visits to the child life playroom as well.

“For a while, it felt like we lived at CHOC, and it was great to have the ability to take Brodie to the play room for air hockey, or watch a movie or play a video game,” Marcus recalls. “There’s nothing you wouldn’t do to take your child’s mind off chemotherapy treatment.”

Brodie today

Despite countless doctor’s appointments and treatments over the last few years, Brodie has no fear of hospitals.

“He’s never met a stranger. Everyone he meets becomes an instant friend,” Megan says. “Brodie gets so excited to see Dr. Plant and the rest of his team. If I tell him that he has an MRI coming up, he’ll say, ‘Sweet!’”

With cancer behind him, Brodie is feeling more like himself. He loves Lego sets, playing X-box with his younger brother Finn, and swimming.

Learn more about the Hyundai Cancer Institute at CHOC Children's

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CHOC recognized as one of nation’s best children’s hospitals

CHOC Children’s is one of only 50 pediatric facilities in the nation to earn recognition as a best children’s hospital by U.S. News & World Report. The following CHOC specialties are honored in the 2019-20 Best Children’s Hospitals rankings: diabetes/endocrinology, cancer, neonatology, neurology/neurosurgery, pulmonology and urology. Cancer ranked in the “top 20.”

“The national recognition for CHOC’s cancer program is well-deserved. There’s nowhere else I’d rather have gone through treatment than CHOC,” says 17-year-old Sydney Sigafus, CHOC patient and cancer survivor. “Everyone who works at CHOC cares about you as a person, not just a patient. I was included in every decision and conversation about my care.”

The Best Children’s Hospitals rankings were introduced by U.S. News in 2007 to help families of children with rare or life-threatening diseases find the best medical care available. Only the nation’s top 50 pediatric facilities are distinguished in 10 pediatric specialties, based on survival rates, nurse staffing, procedure and patient volumes, reputation and additional outcomes data. The availability of clinical resources, infection rates and compliance with best practices are also factored into the rankings.

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“We understand how scary it can be for parents whose children are dealing with life-threatening illnesses or injuries. That’s why we are committed to the highest standards of care, safety and service,” says Dr. James Cappon, CHOC’s chief quality officer. “While we are proud of our accolades, including being named a best children’s hospital, we remain focused on preserving the magic of childhood for all kids, whether they are seriously ill or healthy, or somewhere in between.”

Learn more about the Best Children’s Hospitals rankings.

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Finding Someone Who “Gets It”

Brianna Miller is a 22-year-old from Southern California who was diagnosed with Stage 2 Hodgkin’s lymphoma shortly before her 21st birthday. She is a patient at CHOC Children’s. In this five-part series, she takes readers along on her look back at her journey with cancer.

The hardest part about having cancer as a young adult is finding someone who “gets it.” Someone who knows intimately what you are going through, someone who can relate to your struggles from their own personal experience. As much as I appreciate that my family and friends are there for me, and as much as they empathize with me, their level of support is limited to being on the sidelines, but not entirely knowing what I’m going through. Kara, one of CHOC’s child life specialists in the adolescent and young adult (AYA) treatment program, has been so uplifting every time she’s visited and talked to me too, reassuring me that this is all temporary and offering me all of the resources I might need. Even though I had a great team of family and friends, plus everyone at CHOC who cheered me on, it was important for me to find someone who had been through the same diagnosis at the same time in their life.

When I was first diagnosed, my best friend’s mom put me in touch with a family friend of theirs, who is also college-aged and had Stage 2 Hodgkin’s. She was almost finished with her last round of chemo just as I was starting my chemo.  I cannot even express in words how helpful it has been having her there to answer questions for me and calm my fears about certain procedures or just the whole experience in general. One moment where I appreciated her support was right before one of my surgeries. I already had a PICC line (a peripherally inserted central catheter, used for long-term medications and for blood draws), but my doctors wanted to remove it and add a port. A port is a device they would insert under my skin and attach to a vein that allows medications, blood products, and nutrients to be given intravenously. I had some anxiety about the surgery and having to get poked often with the port, rather than just attaching an IV to my PICC. She reassured me that the port was more convenient and worth the extra procedure and that definitely helped me feel more comfortable going into surgery.

Although she lives across the country on the east coast, she was always only a text away for me. She was the first person I texted when I shaved my head―I needed to know how long it took to get used to the new look! And, like me, she was also treated in a pediatric hospital, so we shared a lot of the same experiences as a young adult being treated at a children’s hospital. Even now, when I’m close to being done with my own treatment and she’s a few months out from hers, seeing her back at school, healthy and back to normal, makes me so much more excited for when I get to return to school next semester.

The most important thing for me was to find people to connect with, and that’s something that I would suggest to any cancer patient. With social media being so prevalent nowadays, it is so easy to find other people out there who are going through the exact same thing you are. I joined a Facebook group of other people who have fought or are fighting Hodgkin’s, and it has been immensely helpful. Being able to unload concerns, fears, and frustrations onto a large community and have people respond with intimate understanding of your situation is very cathartic. There is a growing number of resources for young adult cancer patients that can be found online, such as Stupid Cancer, and being a part of these communities has given me a sense of belonging when I felt like I had no else to talk to.

Something that I’ve learned over the past six months is that attitude is equal to effort, and it has certainly made me feel better to make an effort to connect with others and find resources to help me through my treatment.

Learn more about AYA at CHOC

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The Five Stages of Dealing with a Cancer Diagnosis

Brianna Miller is a 22-year-old from Southern California who was diagnosed with Stage 2 Hodgkin lymphoma shortly before her 21st birthday. She is a patient at CHOC Children’s. In this five-part series, she takes Kids Health readers along on her look back at her journey with cancer.

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Bri Miller, a 22-year-old CHOC Children’s patient, takes readers through the five stages of a cancer diagnosis.

Hi, my name is Brianna Miller, known to my friends and family as Bri! I am a 22-year old patient at the Hyundai Cancer Institute at CHOC Children’s, being treated for Hodgkin’s Lymphoma. A month before my 21st birthday, and just before my senior year of college, I was diagnosed with cancer. To say that learning I had cancer was a shock is an understatement. Throughout the last few months of treatment I’ve had a lot of time for contemplation and for trying to make sense of my emotions concerning my journey with cancer.

You’ve probably heard about the five stages of grief, which are typically applied to people experiencing the loss of a loved one, but I found these stages to be therapeutic in learning about and coping with my diagnosis. When you are diagnosed with cancer as a young adult, you are most likely experiencing one of the biggest losses of your life to date.

State 1: Denial

As a full-time college student working two jobs and being involved in a sorority, I was very busy and frankly not worried about much other than my grades, my friends and showing up to work on time. I had no symptoms other than swollen lymph nodes in my neck, and honestly, you don’t often hear about the young adult side of cancer all that much. It took four months of testing and multiple biopsies to assign a diagnosis, but I don’t think I ever really took seriously the possibility of cancer. Seeing as how I had no painful or otherwise debilitating symptoms, finding out what was wrong with my body was pushed to the back of my mind in favor of more present issues, such as my classes, work and social life. When I was finally diagnosed, my reaction was subdued because it almost felt as if I’d known in the back of my mind for a while and had been denying the reality because I didn’t want this disruption in my life.

Stage 2: Anger

Once the reality of my diagnosis set in, a sense of anger also set in. The hardest part about being diagnosed with cancer is that there is really no one to be angry at. The cause of Hodgkin’s is still unknown, so I couldn’t be mad at myself or at anything for causing it. I carried a lot of anger with me for quite a few weeks, and this anger hasn’t quite subsided. It rises to the surface occasionally when I am having a particularly bad day, when I receive bad news about scans, or sometimes just randomly when I am lying in bed trying to fall asleep. Quite often, this anger stems from the question of “why me?” Sometimes I think this anger could be relieved if there was a definitive cause of this cancer, so that it could take away the sense of unfairness that I feel.

Stage 3: Bargaining

The bargaining stage is associated with “If only…” statements and imagining how different things might be if only you personally had done something differently. I have reflected quite a few times on my lengthy process to diagnosis. Five months passed from when my enlarged lymph nodes first popped up to the beginning of my treatment, at which point the tumor in my chest had grown to 9.3 cm. At my halfway scans, there was unexpectedly still active cancer cells in my chest, resulting in more cycles of chemo being added to my treatment plan. I sometimes wonder if things would be different if I had been diagnosed earlier. If my tumor had been smaller at the beginning of treatment, would I have responded better to my chemo? If I had been diagnosed earlier, would I have been able to start treatment earlier and been able to return to school on time, rather than having to withdraw for a semester? Of course, there’s no point in lingering on these thoughts, but these are some unanswerable questions that I can’t help but think about occasionally, and I’m sure apply to many other cancer patients.

Stage 4: Sadness and depression

When addressing this stage, it is important to distinguish between sadness and depression. Depression is pervasive and interferes with everyday activities, and recovery can require professional help. Personally, I felt a deep, deep sadness but it never crossed the threshold into depression. It’s normal to be deeply sad about a cancer diagnosis, especially as a young adult. If I start to count the number of things that I will be missing out on during my six months of treatment, I’ll definitely run out of fingers and be broken down in tears by the end of it. For me, the hardest thing to cope with is that I had to move home to California for treatment, leaving my college time that was filled with a lot of family members, most all of my friends, and my sense of home. It’s hard not to be sad when your life and everything you know is 1,500 miles away, and just like that you’ve lost all sense of normalcy. Going through treatment for cancer doesn’t help either, as it’s hard to be cheerful while being nauseous, fatigued, and in pain from any number of side effects. The most that I can do is look for something positive in everything, and know that at the end of these six months this will all be a memory. Something that has really helped me during this time and while experiencing these feelings is keeping in touch with all of my friends, even while so far away. Knowing that they are all just a quick call or Facetime away has been so reassuring. Kara, one of CHOC’s child life specialists, has been so uplifting every time she’s visited and talked to me too, reassuring me that this is all temporary and offering me all of the resources I might need.

Stage 5: Acceptance

Acceptance by no means is defined by letting go of or losing any of the normal emotions that come with a cancer diagnosis. Acceptance, for me, simply means that you have made peace with your diagnosis and are ready to put all your energy towards fighting the disease. There came a point where I realized that constantly being angry and sad was doing nothing but making me more upset. I realized that in order to beat cancer I was going to need to be strong and accept this as my new (temporary) normal. This doesn’t mean I no longer experience those feelings of sadness, anger, and confusion, but they have become temporary moments rather than a persistent mood.

Everyone’s journey with cancer is different. Even if you are diagnosed with the same type of cancer as someone you know, your emotions, questions and concerns may be completely different, and that’s ok. Having cancer is a deeply personal experience, but that doesn’t mean you have to fight it alone. Talk to your parents, siblings, friends, doctors and nurses― they are all there to help and support you in any way they can. No matter what emotions a cancer diagnosis brings you, don’t feel alone.

Learn more about the Hyundai Cancer Institute at CHOC Children's

Read more from Bri:

  • Finding Someone Who “Gets It”
    Bri is a 22-year-old who was diagnosed with Stage 2 Hodgkin lymphoma shortly before her 21st birthday. In this five-part series, she takes readers along on her look back at ...
  • Finding Humor in Cancer
    Bri is a 22-year-old who was diagnosed with Stage 2 Hodgkin lymphoma shortly before her 21st birthday. In this five-part series, she takes readers along on her look back at ...
  • What it’s Like to be Treated at a Children’s Hospital as a Young Adult
    Brianna Miller is a 22-year-old from Southern California who was diagnosed with Stage 2 Hodgkin’s lymphoma shortly before her 21st birthday. She is a patient at CHOC Children’s. In this ...

 

Finding Humor in Cancer

Brianna Miller is a 22-year-old from Southern California who was diagnosed with Stage 2 Hodgkin’s lymphoma shortly before her 21st birthday. She is a patient at CHOC Children’s. In this five-part series, she takes readers along on her look back at her journey with cancer.

If there’s one thing I’ve come to know more intimately over the last year than I did before, is that cancer makes people uncomfortable. I completely understand. It can be hard to know the right things to say, the best way to react to bad news, and how best be supportive. Along with all the bad things that accompany cancer, however, there are a lot of things that happen and you can’t help but laugh. I want people to know that it’s completely okay to find humor in cancer!

When I was first coming to grips with the impending side effects of chemo, I found that an effective way to ease my anxiety was making jokes to help make light of my situation. I’ve always been easygoing, and this developed into a sense of humor during treatment. If we’re being honest, going from having long hair to being completely bald is shocking but also can be funny! I kept hair ties on my wrist even after I had no hair and would reach for the brush just out of habit. I would often make jokes about being bald, and my friends would always redirect and reassure me that my hair would grow back. Of course, I knew that my hair would grow back, but that didn’t mean that I couldn’t have a little joke at my own expense in the meantime! Now that my hair has started to grow back, it looks kind of funky- I like to call it my “baby Orangutan” look. I know it looks funny, so someone reassuring me that it doesn’t really just makes me internally cringe. I understand the impulse to make someone feel better, but if I’m lucky, I’ll only have to do this whole cancer thing once in my life- might as well make it interesting while I do!

Of course, it’s never okay to make fun of a cancer patient’s trials or downplay their experience, but to consistently only talk to a patient about their experience in a serious tone can be quite frankly boring and frustrating. I’ve found so many great, sarcastic memes and apparel from other members in a Hodgkin lymphoma support group on Facebook and through other groups like Stupid Cancer, and they never fail to bring a smile to my face. My personal favorite was my Halloween costume last year, Charlie Brown. I figured I might as well take advantage of the baldness while I had it!

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I think it’s important for people to realize that if a cancer patient is making light of their situation or making jokes, it’s perfectly okay for them to join in too! Sometimes long hospital stays or hard chemo days can be bleak and tiring, and bringing humor into the situation can help immensely. You have to do what is best for you.

Learn more about the Hyundai Cancer Institute at CHOC Children's

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