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 Hospital. 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!
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.
Every three minutes, someone is diagnosed with a blood cancer, like leukemia or lymphoma. As many as seventy percent of these patients don’t have a compatible match in their family, and must hope to find an unrelated donor. You can help these patients increase their odds by joining the Be The Match Registry®, an international registry of potential matches for those seeking a bone marrow transplant. Today, meet two CHOC patients who have benefited from a bone marrow transplant.
Emma, age 23
In the summer of 2017, I went from being a healthy 21-year-old college athlete to an acute myeloid leukemia patient in less than a week’s time. To say it happened fast is an understatement. The doctors told me I needed a bone marrow transplant as soon as possible. Dozens of my family members got tested to be a donor, but because it needed to happen quickly, we used my dad. I received his stem cells on October 3, 2017. The procedure was difficult, but my medical team and the hospital staff were incredible. The oncology floor was like a huge family made up of patients, caretakers, survivors, supporters, and many others who had been touched by cancer. Thankfully, my husband was there every step of the way. By March 2018, I was able to move back to my hometown and resume college online. I was able to reclaim my life and feel hope for my future. Right now, I’m three weeks away from the one-year mark. I feel good, and I’m so grateful for my bone marrow transplant. It gave me back my life and the best gift of all: time.
Zaiden, age 3
I was diagnosed with B-cell acute lymphoblastic leukemia when I was 2 years old. Thankfully my parents took me to an amazing hospital, CHOC. Everyone is amazing there! I started heavy chemotherapy, and everything was going well. Unfortunately, I relapsed after nine months of treatment. It was after this I had my first bone marrow transplant, with my dad as my donor. Again, I was kind of back to my normal life when I relapsed again at the six-month mark. After this we tried Car T Cell therapy, but I again relapsed after nine months. So, in April 2018 I had my second bone marrow transplant and this time it was my sister who got to be my donor. These treatments were not easy, but I have been living my best life since then.
I am extremely lucky that I was able to be matched not once but twice with people in my family as my donors. A lot of kids are not as lucky and have to wait a long time to find a match. Because of my treatments it inspired my parents to register with Be the Match in hopes they could do the same thing for someone else that saved my life.
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. In this five-part series, she takes readers along on her look back at her journey with cancer.
Being diagnosed with cancer right before I turned 21, I was pretty surprised when we drove up to CHOC for an initial meeting with my oncologist. I asked my parents why we were going to a children’s hospital. In my mind, I figure that once you turned 18 and were legally considered an adult that you would have aged out of pediatrics as well. I remember sitting in the waiting room, surrounded mostly by young children, and feeling completely out of place. There were cartoons playing on the TV, tiny chairs in the waiting room and cartoon characters on the walls in the treatment rooms. I hadn’t been to my pediatrician since I left for college, so it all seemed like a flashback to when I was a child, and not like somewhere that someone my age would be treated.
As unusual as it seemed at first, now that I’m done with treatment I have to admit that I 100 percent would not want to be treated anywhere other than CHOC. The decorations of little cartoon characters in the rooms at the clinic and the Disney movies always playing in the waiting rooms seem so much more bright and welcoming compared to the drab white walls and sterile waiting rooms of the non-pediatric doctors’ offices I’ve visited. During my inpatient stays, there was always something exciting happening in the hospital to encourage me to get out of my bed and take a little walk around. Oncology Prom, festivals in the second-floor lobby, special visitors in Seacrest Studios were all incentives to get out of bed and get moving. The nurses at CHOC would become more than just my caretakers; they became my friends. Since quite a few of them are fairly close to my own age, there was always something that we had in common and something to talk about.
The Adolescent and Young Adult program at CHOC is really such an amazing resource within the child life department. For my first round of chemotherapy, I had to be admitted to the hospital, and that weekend happened to be the same weekend of CHOC Prom, which was such a fun experience. Going to the dress selection and primp events and meeting former patients who are now in remission was so encouraging. Even though I was just beginning my treatment at that time, I could see how they had all gone back to having normal lives and how they’re so positively dealing with the lingering side effects of treatment. It was and still is encouraging to me, knowing that when I return to college, although it will be more challenging than before, I will be able to tackle life the same way that they have.
One of my favorite parts of being treated at a children’s hospital is the other patients- the actual children. Although I am a secondary education major, I’ve always appreciated the genuine optimism and happy demeanor that young children possess. Regardless of the trials that these young oncology patients were facing, it always lifted my spirits to see them because more often than not they were toddling through the halls with the biggest smiles on their faces. In the same way that meeting former AYA patients made me excited for life after cancer, the little kids that I met or simply saw during treatment encouraged me to power through treatment. If a two-year-old or a six-year-old can go through treatment with a smile on their face, what excuse do I have to not try and make the best out of what I’ve been given?
Receiving my treatment for cancer at a children’s hospital has enabled me to be more positive about the whole experience. Having wonderful doctors, nurses, and an incredible AYA support team has made these past six months easier and much more comforting than I ever could’ve imagined at the beginning.
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 Hospital. In this series, she takes readers along on her look back at her journey with cancer.
At my university, I am a member of the Kappa Delta sorority. One of the initiatives that most important to our sorority is the Confidence Coalition, which is exactly what it sounds like- a movement to help build confidence in girls and women. Something that drew me to this group of women during sorority recruitment was this platform of confidence because it is truly alarming the number of women who struggle with self-image, starting at such an early age. I wanted to be part of what the amazing things they were doing at the local and national level, to help women realize their worth and cultivate a healthy and positive self-image. Little did I know how much my own attitude towards confidence would change just a few years later when I was diagnosed with cancer just before my 21st birthday.
My own personal attitude towards confidence certainly changed the minute I was diagnosed with cancer. Everyone has their own personal insecurities, and even before I was diagnosed with cancer there were things I wished I could’ve changed about myself. When I was diagnosed, I immediately felt as if these insecurities were magnified because I knew that I would soon undergo some physical changes, which can be a side-effect of chemotherapy. The thought of losing my hair scared me, even more so than the actual disease that was trying to kill me because my hair was something I could see, and I couldn’t see my cancer. The hardest I ever cried during treatment was the first time I took a shower and clumps of my hair started coming out in my hands.
Cancer treatment can cause many other physical changes besides losing your hair. For me, chemo caused fatigue and completely changed my eating habits, meaning I was less active but also eating less. I’ve lost quite a bit of muscle mass and a fair amount of weight because of this. Different central line placements have left me with a few new scars. A few months after I started to lose my hair, my eyelashes and eyebrows fell out as well. These physical changes have caused me to reevaluate my own idea of confidence and the role beauty standards play in my life. Looking back, I realize that my relationships before I had cancer were based on vanity. Because of this, a fair amount of my own confidence stemmed from validation from others, which became an unhealthy cycle.
Physical changes from chemo have allowed me to flip this script, and I’ve found that my own intrinsic sense of confidence has actually increased. I had no say in getting cancer, and no say in the side effects that come with chemo, but I have the biggest gift in that I get to choose how to respond to it. Once my hair started falling out, I decided to shave it rather than prolong the inevitable. It was one of the toughest things I’ve done, but once it was over, I felt an immediate sense of relief, and I was happy that it happened on my own terms. When I go out in public, I do so with a bald head. People always stare, but as cliché as it sounds, to me it is just a physical representation of my strength. I’ve gone through a lot more than most people will endure in their whole lifetime, and it just so happens that there are some physical reminders that come with it.
Hair will eventually grow back, and scars will fade, but the personal growth I’ve made will stay with me for the rest of my life. I always felt a connection to my sorority’s platform of confidence, but it wasn’t until my own confidence was essentially shattered and rebuilt that I truly understood the importance of confidence and self-image in a woman’s life.
They didn’t know each other. Their only connection was their teenaged children; one fighting a devastating cancer diagnosis.
Then came a letter. And food prepared with love. It was a kind, selfless gesture that inspired a special friendship and, in less than two years, more than 1,600 meals delivered to families at CHOC Hospital.
Jody Masquefa became – in her own words – obsessed with thoughts of and concerns for 19-year-old Dillan Morris. A friend of her daughter, Dillan had been diagnosed with cancer. She had never met Dillan’s family, but found herself thinking of them often, especially his mom Pam. She wanted to help them in some way, but didn’t want to intrude.
Finally, she got the courage to send Pam a letter. “You don’t know who I am, but my daughter is your son’s friend,” she wrote. Jody included her phone number and encouraged Pam to call if the family needed anything. A week later, she received a text message. Brief text exchanges continued until the family accepted Jody’s offer to deliver a meal to them at CHOC.
“I still remember the moment I pulled into the hospital’s five-story parking structure. It hit me how full it was…how many other families had children who were ill or injured,” recalls Jody. That meal led to her first face-to-face encounter with Pam. Additional food deliveries followed. Even though she become more acquainted with the Morris family, Jody knew she was still very much a stranger in their personal journey.
Sept. 21, 2015. The day the Morris family was forever changed. Their beloved son and brother Dillan, who they thought was suffering from a bad cold, was diagnosed with acute myeloid leukemia and acute lymphocytic leukemia. Just five percent of the population get both forms of the cancer. He was immediately admitted to the Hyundai Cancer Institute at CHOC for aggressive treatment.
Dillan’s mom Pam took a leave from work to stay by his side…each of the 105 days he remained in the hospital. She was there for the chemotherapy, the physical therapy sessions and procedures. There when they received news that his cancer wasn’t responding well to treatment. And there to watch her handsome and athletic son endure everything with strength and courage.
“He never complained. Never asked ‘why me.’ He had a great attitude through it all,” remembers Pam.
Naturally, her focus remained on Dillan. She couldn’t even turn her attention away to respond to a message from the mother of one of his friends. Her sister replied to the stranger on her behalf, sent updates and finally accepted an offer of dinner.
Pam met Jody for the first time in CHOC’s fifth floor family room, where Jody had dinner set up for the family. They talked for a long time. Texts and notes of encouragement followed, as did more meals.
Dillan came home from the hospital on Jan. 5, 2016. Ten days later he died. Jody attended his memorial service and was touched to see a full church, including staff from CHOC. Clearly the young man left a lasting impact on so many.
Once again, Jody summoned her courage; this time to approach Kara Noskoff, one of the hospital’s child life specialists who spoke at the service. She had an idea, a way to pay tribute to Dillan and help other families. “Could I bring meals to families at CHOC?” she asked. Kara agreed to help coordinate the effort, knowing how many families could benefit from such a kind gesture. Jody had one more person to ask: Pam. She wanted to know just how involved Dillan’s mom would like to be.
The first “Love Letters Food Box” was delivered to a family at CHOC on Feb. 2, 2016. The box, nondescript with exception of a small logo designed by Dillan’s friend, held a three-course meal, including beverages. It also contained a letter, unsigned. “This meal is a gift to you to let you know that some stranger out there knows you are here,” it starts. The letter continued with the story of the Morris’ encounter with a stranger, who was deeply impacted by their journey and by the realization that so many families at CHOC were on similar journeys. And that “a meal is often a way to show others that we care.”
Since then, Jody and her volunteers, including Pam, have delivered more than 1,600 meals to CHOC. What began as a commitment to deliver one meal a week has grown to deliveries six days of the week. Pam’s delivery includes blankets, something her son treasured receiving from his friends.
“Jody and Pam are two amazing, caring and selfless women,” says Kara. “They are respectful of our families’ privacy, and wish to know only how many people to feed and any dietary restrictions. They are quiet heroes.”
Jody and Pam’s support of CHOC includes participation in the 2016 and 2017 CHOC Walk in the Park. Their team, including their husbands Yves and Bob, most recently raised $14,000. During the walk, a mom recognized the Love Letters Food Box logo and raced to the group to express her appreciation for being a recipient of one of their deliveries. More families have approached Love Letters Food Box volunteers at the hospital, tearfully giving thanks for the generous and selfless gesture. One family was inspired to start delivering meals to a local hospital in their community.
Jody and Pam are humbled by the gratitude and by the opportunity to be there for others. Once strangers, the two are now close friends, making a big difference in the lives of families one letter and one meal at a time.
Jody and her husband own Yves’ Restaurant and Wine Bar in Anaheim Hills. Jody would like to grow the Love Letters Food Box program. Anyone interested in getting involved can email email@example.com.