When you arrive to the hematology and oncology unit at CHOC Hospital, there’s someone you won’t miss — and if you do, he’ll make sure you notice him.
Three-year-old Austin, a CHOC patient, is a bundle of energy and can often be found running around in a costume, jamming out to his favorite music or yelling out, “Hi!” to everyone who passes his hospital room. He is your typical toddler, except for one thing — he has cancer.
Austin was diagnosed earlier this year with acute myeloid leukemia (AML) with FLT3-ITD and NPM1 mutations. Before his diagnosis, Austin had constant and unexplained fevers, bone pain, loss of appetite and extreme fatigue. His pediatrician,Dr. John Carruth, ordered a blood test that showed an alarmingly high white blood cell count.
Austin’s parents, Kristen and John, were told by Dr. Carruth to bring Austin immediately to CHOC.
“It felt like a surreal nightmare walking onto the fifth floor at CHOC and seeing the words ‘cancer unit,’” says Kristen. “It was the most afraid I’ve ever been in my life.”
Due to Austin’s cancer mutations, his parents were told he may need a bone marrow transplant. This kind of transplant can often be a cure for certain oncology diagnoses, but the process is not easy — especially for a young child. Thankfully, his oncologist Dr. Jamie Frediani is committed to staying up-to-date with the latest research and new studies within pediatric oncology, and she knew that children with similar mutations to Austin’s can do much better without having toundergo a transplant.
“Knowledge is constantly evolving, and with it our treatment strategy—giving patients like Austin an improved prognosis,”says Dr. Frediani.
Austin’s care plan moved forward with five rounds of chemotherapy, but that was just one part of the battle. A few weeks after Austin was admitted, California enacted stay at home orders due to COVID-19 and CHOC’s visitor guidelines were revised in the interest of curbing the spread of the pandemic.
During the past few months, there were moments that were especially hard for Austin – but he was never fighting alone. Although he experienced nausea, an allergic reaction, a fungal infection in his lungs, high fevers, painful mouth sores and overall body pain, Austin and his parents had an entire team fighting alongside them.
“The staff, doctors, nurses, child life specialists, music therapists and all our other cancer-fighting friends on our floor have been so loving and friendly,” says Kristen. “You never want to hear your child has cancer, but if it means you get to meet wonderful and inspiring people along the way, then this entire experience is made a little easier and a lot less painful.”
As much as CHOC’s staff has made an imprint on Austin’s heart, he has done the same for them in return. While attached to his IV pole, Austin sprints through the halls daily introducing his bright personality to those around him, bravely shows off his superhero-fighting moves to all the nurses and has chosen to be happy every day for the 163 days he has been at CHOC.
Under the care of Dr. Frediani and the oncology team, Austin’s chemotherapy treatment has gone well, and he was recently able to return home. Going forward, he’ll have regular follow-up appointments with his care team. Austin and his parents are excited for him to start pre-school, take a karate class, play on a baseball team and continue to lift people up wherever he goes.
“As much as we’re excited to move on with our lives, I hope Austin remembers this experience,” says Kristen. “I hope he remembers the hard things he did, the fears he overcame, the people he met. I hope he remembers just how brave he was and how much braver he will be because of this.”
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.
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 firstname.lastname@example.org.
Being hospitalized can be scary and stressful, no matter the age of the patient. A visitor can have the same emotions, especially if they are new to a hospital setting. What should I say? Is it ok if I cry? Should I bring them a gift? You will see all sorts of circumstances when you walk into a patient room in the hematology/oncology unit, whether you are visiting your own loved one, or meeting a friend that your loved one has made during treatment at CHOC. The child life specialists of The Cherese Mari Laulhere Child Life Department at CHOC offer the following advice to visitors coming to the hematology/oncology unit.
What to say
Ask what shows they are watching, what’s their favorite movie, what they like to do when they’re at CHOC.
If the patient you are visiting is a classmate or friend and you usually see them regularly, it’s ok to tell them that you’ve missed them. Teen patients especially want to hear about what’s going on at school so they feel like they are still part of it. Sometimes it makes them feel sad that they are missing out on things, but ultimately it makes them feel like they haven’t been forgotten.
Ask the family what they need. You may be surprised by what they say, in some cases. Maybe the thing they need most right now is for you to babysit their other children so they can focus on their hospitalized child. Maybe they feel overwhelmed with gifts, but would appreciate if you went to their house and tidied up and did a load of laundry so they have one less thing to worry about.
Send an e-mail or a text message to let them know you are thinking about them. Patients and families often need space immediately following a diagnosis, but they don’t want to feel forgotten about. Offers to help often come mostly in the early days of treatment, and sometimes drop off after a few months. Let them know you haven’t forgotten about them. Families can feel bad saying no to visitors, so give them the option to say, “not right now.” Here are examples:
“I’m here for you and I’m ready to come at any moment. Please know I don’t want to overstep any boundaries, please tell me no if you do not feel up for a visit.”
“I’m open to talking about whatever you feel comfortable talking about. I’m here for you and am willing to just listen and be with you in this.”
It’s ok if you don’t know what to say. You may have never been the loved one of someone with cancer before. You can say something like:
“I don’t know what to say but I’m with you in this.”
“We’re going to do this together.”
“I can handle this with you. You shouldn’t have to carry this alone.”
It’s ok to say, “I’m sorry.” It’s ok to cry.
Cancer is often a long and difficult journey. On some days, your friend may feel positive and strong, and on other days they may feel overwhelmed. On these days, tell them, “It’s ok to not be ok.” Give them permission to feel whatever they are feeling. Validate their feelings by saying, for example, “You have every right to be sad and angry. This isn’t fair, but we’ll get through this together.”
What not to say
Never assume age or gender, just because of a patient’s size or lack of hair. CHOC treats a variety of ages here, from babies all the way up to young adults.
Don’t ask how long they’ve been here or when they get to go home. They might not know the answer, which can be frustrating.
Avoid asking how school is going. This may only remind them they are missing out on time with friends, and isolated in the hospital.
Although some patients enjoy ordering food delivered straight to their rooms, avoid asking questions about food because some patients have restrictive diets. Others might be nauseous from chemotherapy treatment, and some may not be able to eat regular food that day if they are about to have a procedure.
Visitors can be great motivation for patients to get out of bed. However, don’t assume they can get up and walk around. Instead of asking, “Hey, do you want to go walk to the playroom or catch Turtle Talk?” you can say, “We can take a wheelchair, or if you feel like getting up we can try that,” and let the patient be the one to tell you that they can walk.
You care a lot about the person you are visiting in the hospital, so it’s natural to want to ask how they are doing when you walk into their room. Instead, say “Hey, it’s so good to see you!” to avoid sparking any feelings of sadness if they aren’t feeling their best that day.
Look to the patient for conversation cues. Don’t ask a lot of questions about their treatment plan unless they offer up that information. Patients spend a lot of time every day talking to their care team about their treatment plan and how they are feeling, so they may not want to talk about it again with you. It is, however, ok to ask them if they want to talk about how they’re feeling or their treatment plan, and give them the freedom to say no.
Never use the phrase “at least.” You may be trying to bring positivity to a sad and scary situation, but do not say “I know cancer is bad, but at least it’s not (insert any other condition or treatment setback here).”
Do not compare your own experience with cancer to theirs. Every cancer journey is unique, and patients aren’t receptive to hearing “I understand.”
Avoid using blanket statements such as “You’re my hero” or “You’re so strong.” Instead, tell them why they are strong, and what characteristics you see in them.
What to bring
Bring an activity that you can do with your friend or loved one. Art projects, puzzles, crossword of the day, and board games are all great options.
Supplies to decorate their room is always a welcome surprise. This can also include cozy pajamas, slippers, twin sheets and cozy blankets.
Before bringing food, check with the patient’s parents or legal guardians. Some smells may bother them or they might not be eating typical food that day due to an upcoming procedure. They might not want food then but may want snacks to keep in their rooms.
All rooms have DVD players and Xbox consoles. Patients can checkout movies and video games from the Family Resource Center or the child life department, but bringing them a fresh stash of entertainment can be a thoughtful gesture. Mini speakers are another way that you can help patients relax by listening to their favorite music.
The CHOC gift shop, located on the second floor of the Bill Holmes Tower, offers a variety of games, books, arts and crafts, stuffed animals, toys, mylar balloons and more. Loved ones can call 714-509-8668 to place an order over the phone and arrange for it to be delivered straight to a patient’s room.
Don’t forget about the parents! Although care teams and social services at CHOC stress the importance of self-care for parents, having a hospitalized child often means that moms and dads forget about their own needs. Parents also appreciate things for their room to help them feel comfortable: cozy pillows and blankets, books and magazines, nice shampoo and conditioner all go a long way. Some families like aromatherapy as well.
Sometimes, our patients and families are just not up for visitors, but they would still appreciate your thoughtfulness. Be ok with dropping something off in the first-floor lobby and not feeling entitled to a visit. This shows that you are respectful of their space while they’re healing. Gift cards for gas, groceries, and local restaurants around the hospital are always appreciated. If you’re not local (and check with the family first), you can also order meal from a nearby restaurant to be delivered that they can pick it up in the first-floor lobby. CHOC’s Area Resource Guide provides information on nearby restaurants.
What not to bring
Flowers are a beautiful and thoughtful gesture, but due to the bacteria that grows in soil, oncology patients are not permitted to receive flowers.
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 six CHOC patients who have benefited from a bone marrow transplant.
Diego, age 23
I was diagnosed with pre-B Cell acute lymphoblastic leukemia on January 11th, 2009. Thankfully, I landed in a great hospital that quickly gave me hope and strength to fight. Everything was going perfect. I received one year of intense chemo and about two years of remission chemo. Unfortunately, I relapsed one month before finishing my treatment. I hated the fact that I’d have to start from zero with a whole new treatment that included radiation. I relapsed a second time a few months after receiving radiation. I would see and meet other patients who were diagnosed and finished with treatment in only a couple months. When I talked to my doctor about what the next step was, I was happy because I would be receiving the same treatment as the other patients – I would be receiving a bone marrow transplant. Even though it is a quicker treatment, it is also tougher. The first step was finding a matching donor.
I was very lucky that I found a donor in my family; my sister was a 100 percent match! Finding a donor that matches 100 percent means that your risk of side effects is lower. It was just before Christmas that we got news of the match, so on Christmas Day I gave her a card asking for one more gift – if she could be my bone marrow donor. That Christmas, the whole family cried tears of happiness.
Tori, age 21
I have been a patient at CHOC since I was 19, when I was diagnosed with acute myeloid leukemia. After my first round of chemo, my doctors determined that receiving a bone marrow transplant would give me the best chance for remission and lessen the chance for relapse. With three possible matches found on the registry, the first person my doctors called backed out. The second person they called said yes but unfortunately the hospital they went to have tests done at made a mistake on a time-sensitive lab that would have to be redone. My doctor didn’t want me to have to wait any longer to undergo a treatment that could possibly save my life. On April 12, 2016, I received a bone marrow transplant with my dad as my donor. I have been in remission ever since!
Aric, age 25
My bone marrow transplant was on April 14, 2017 as part of leukemia treatment. It was kind of difficult, but I was always positive and kept busy by reading, playing video games, and watching my favorite Netflix show, Stranger Things. My family would come over to play games and bring me fresh clothes. My friends would come over and chill with me, bringing things I needed to make me forget about being in the hospital. They also brought my TV from home so I could play my Xbox better. The first month hit me hard with fevers and vomiting, and it’s weird to say, but I got used to that. Now, I have passed the 100-day mark and I’m so happy and I feel better. I just need to follow my doctors’ orders and I will be okay.
Aileen, age 22
I got diagnosed with sickle cell anemia shortly after birth. For years, I was in and out of the hospital due to my pain crises and other health-related problems. Over time all the complications built up and my bones and organs started getting damaged due to excessive amounts of medications, narcotics and blood transfusions. The doctors told me as I grew older that I would have more complications. When I turned 18, they insisted I get a bone marrow transplant. At first, I didn’t want one because I was afraid of chemo and all the obstacles it would bring. As time went on, my health got worse and my pain crises were more frequent. I would be hospitalized for weeks at a time and then once I got discharged, I’d only be home for maybe a week or two before I had to be admitted again. Once I turned 20, I made the decision to go through the transplant process. I was lucky enough that my brother turned out to be my perfect match. On August 26, 2015, I received my brother’s bone marrow. I am now cured and am happier and healthier than ever. I have not had a pain crisis since! Getting my bone marrow transplant was the best decision I’ve ever made!
Ralph, age 24
I am a two-time cancer survivor and bone marrow transplant recipient. I was diagnosed with testicular cancer at age 14, and relapsed with secondary acute myeloid leukemia at age 19. As soon as my treatment began I was told I was going to need a bone marrow transplant. The bone marrow I received came from the umbilical cord blood of two different European children, not from a single donor’s bone marrow. This experience has taught me that even though the donation pool is great and diverse, there is still more we can be doing to help save lives, not only domestically but also overseas.
Kamron, age 20
My bone marrow donor saved my life! I’ve been in remission ever since I received my donor’s bone marrow. I was diagnosed with non-Hodgkin’s lymphoma at 17 years old and kept relapsing post-treatment. It wasn’t until I was transplanted with a new bone marrow that I’ve been in remission the longest. Please register today and you could help save someone’s life!