How a Bone Marrow Transplant Changed My Life

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 Children’s 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.

bone marrow transplant

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!

bone marrow transplant

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.

bone marrow transplant

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!

bone marrow transplant

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.

bone marrow transplant

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!

Learn more about the Blood and Marrow Transplant Program at CHOC Children's

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Lessons Learned During a Senior Year Spent Fighting Cancer

aya

By Claire Nakaki, CHOC Children’s patient

Hello there! My name is Claire Nakaki. I am a freshman in college, but a little over a year ago, I was a soon-to-be high school senior when I was diagnosed with osteosarcoma, a type of bone cancer. I was a healthy, active volleyball player and I could not understand why this had happened to me. The initial shock was debilitating; cancer had never been something I saw in my future and certainly not my present. I began chemotherapy the month before school started, knowing that I was going to be completing my senior year of high school from a hospital bed. However, after my head and heart had cleared from the turmoil that my diagnosis had brought upon me, I realized that the upcoming year was really just a year. While cancer was something that I knew was going to affect me for the rest of my life, I refused to let it control my life. My surgeon Dr. Nassif asked me before my big surgery (which removed the tumor and replaced the bone with a prosthesis) to set some goals for the upcoming year. Two prominent goals immediately came to mind: I wanted to walk at graduation with my class, on time, without a walker, a wheelchair, or crutches, and I wanted to attend a four-year university after that. These goals did not seem far off, but I unknowingly delved into the hardest year of my life.

I found myself wanting to meet other patients my age almost immediately, begging the Child Life staff to introduce me to any other teens on the floor. I found so much comfort in knowing that there were other teenagers like me experiencing something similar. While no one’s story is identical, discussing the things we do have in common definitely helps soothe an anxious mind. I attended an AYA (Adolescent and Young Adult) support group meeting in my first few months of treatment and then the next following few months, then as often as I could. I had no idea it was even a support group until almost six months in. It felt more like a group of friends who coincidentally have this one big thing in common rather than a solemn meeting to talk about our hardships. Sure, we occasionally brought up things we were going through when someone needed support, but other than that it was just a safe space to be accepted with open arms. This AYA group has become like a second family to me, a fun group of people in all different stages of treatment and survivorship with whom I feel comfortable discussing anything and everything with. I do not know where I would be in my survivorship without this group of people, as well as the entire Child Life staff and AYA facilitators.

I am often asked if the experience was difficult and if I am sad that I missed my senior year of high school. I always have the same answer. Yes, of course it was difficult. I had no idea how difficult it would be. And I am painfully aware that my treatment went much smoother than most. I stayed on the same treatment plan and had very few bumps along the road. I am sure that my classmates enjoyed their senior year at school, but I would not trade this past year for any other situation. I truly mean that. I have learned so much from the genuinely kind and empathetic people that I met at CHOC, both patients and staff members. I reiterate time and time again that I feel so lucky to have had 17 years of life before cancer entered my life and I know that I have many more to come. I met so many younger kids during my stay at CHOC, mainly just a “hello” in the hallway, but there were a small few that I really got to know personally. These kids hold such a special place in my heart. I served as somewhat of a mentor to a few, due to my age and stage in my treatment, what kinds of procedures I had undergone, and what kinds of machines I was attached to. The kids I got to know made such a huge impact on my general attitude towards life and I truly hope that I made a positive impact on them. One piece of advice that I want everyone who goes through cancer to grasp is that no matter how bad you feel or how hard it is to meet your daily goals, your journey is always just one day at a time. It is so important to remind yourself that every day is just 24 hours. All you have to do is just get through the day. Take every step of the way just one day at a time. Soon enough, you will begin to see the light at the end of the tunnel.

aya

As I mentioned in the beginning of the post, I am now a first-year college student, which means that yes, I did meet my goals. I finished the last step of my treatment and was released from the hospital on June 9th and walked at my graduation without a wheelchair, a walker, or crutches one week later. I was accepted to college in the middle of my treatment, and completed all of my required courses in order to attend in the fall. I achieved these goals with a year of incredibly difficult work and with the unconditional support from my family, friends, and CHOC staff. There will always be things I cannot do because of what happened to me and I still go to physical therapy twice a week and have to take extra precautions in almost everything I do, but I am so happy to be back in the real world, living my new normal.

 Learn more about the Hyundai Cancer Institute at CHOC Children’s.

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Oncology Patient Returns to CHOC as Oncology Nurse

In honor of Childhood Cancer Awareness Month, we share a poem written by Kim, a registered nurse in the hematology/oncology unit at CHOC Children’s, at the time she finished her training. Kim is a cancer survivor and former CHOC patient.

Serendipity

I had no idea what this was going to bring up

All these memories and feelings I have folded so neatly in a cup

Tucked away never again to be touched

Walking back into CHOC, oh how I have forgotten so much

You see, I once had cancer too

I came back as a nurse to see what I could do

I once told my own nurses, now peers, I will be back. Something I am sure they heard before

10 years later I walk through CHOC’s door

As a registered nurse I am proud to be

But I never underestimate the patient that is still inside of me

People have told me it takes certain strength to face it again

“Doesn’t it remind you of all your pain?”

My pain?, I think, I am one of the lucky ones.

I get to come to work and I have fun

I am allowed to make funny faces

I make kids laugh and participate in car chases

I am able to share in life’s precious moments daily

Except for the need of possibly doing a Foley

Even when I am running around like a chicken with no head

I will always take time for that scared kiddo sitting in the bed

There are times when I step back and remember

When that was once me waiting for a cure

This hasn’t been easy, seeing the chemo’s and procedures

And sitting through those late effects lectures

Sometimes when the day has been hard I ask myself, “Why did I pick THIS? What else could I have been?”

But I quickly remind myself I didn’t pick this- it picked me way back when.

I am surrounded by hope, a side people do not see

For I am a proud survivor and now registered nurse of pediatric oncology.

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CHOC Opens Wing for Adolescent, Young Adult Cancer Patients

Where would you want to heal?

Nick Meza immediately knew his answer. As a lifelong Californian and committed Eagle Scout, his life was dotted with dips in the pool, canoe adventures along the river, and seaside snorkeling expeditions before being diagnosed with cancer two years ago.

“It is when I am in the water that I find the serenity and courage to stay positive and focus on what is right with the world,” says Nick, 20. “When I am in, around or close to a body of water, I forget about troubles and my life’s struggles and suddenly water becomes my life, my strength and my healing place.”

Now, Nick – and his fellow adolescent and young adult (AYA) patients at the Hyundai Cancer Institute at CHOC Children’s – will get his wish, at least virtually.

infusionarium

A young cinematographer was paired with Nick to create an immersive film capturing life under the sea; other videos explored healing scenarios suggested by other patients. These films will offer Nick and his fellow patients a brief escape from their daily battles while broadcasted on large, vertically oriented television screens inside the lounge of CHOC’s newly opened AYA wing.

The lounge and multimedia system offers patients an experience similar to what’s provided by CHOC’s Infusionarium, which opened in 2014 inside the outpatient infusion center and provides an immersive, healing environment for patients.

It also provides AYA patients with a dedicated place to play video games, watch television and movies, or just hang out with their peers – a luxury Nick longed for when he was newly diagnosed with leukemia and found himself among the oldest CHOC patients.

“It’s nice to walk outside of your room and find a place to hang out,” he says. “You can take your brother and friends there and play video games. It’s a space for the teenagers – not the little kids.”

The AYA wing also includes four specially outfitted patient rooms. Dedicated to this unique patient population, room amenities include vibrant paint colors, customizable wall art, and portable, larger television sets. These mobile units share the library of patient-directed videos, as well as educational “cancer survival” videos and eBooks that feature CHOC experts.

The lounge was developed by Reimagine Well, a company that uses emerging technologies and digital media to create immersive healing environments.

AYA lounge

The AYA wing dovetails with the Cancer Institute’s recognition that teens and young adult patients with cancer have unique needs. In fact, CHOC’s is among the few pediatric cancer programs in the country with dedicated services for this patient population.

“When it comes to treating an adolescent or young adult with cancer, their medical needs are unique – but so are their psychosocial needs,” says Dr. Leonard Sender, medical director of the Hyundai Cancer Institute at CHOC Children’s. “The AYA wing will give these patients a venue to heal on their own terms and a place to call their own.”

How Parents Can Help Teens Manage Their Health Care

When it comes to health care matters, parents of teenagers must strike a delicate balance, especially when the teen is old or mature enough to make his own decisions.

Parents can help teens learn about their illness and decide what’s best for themselves – without overpowering their children, says Dr. Leonard Sender, medical director of the Hyundai Cancer Institute at CHOC Children’s and chairman of SeventyK.org, an adolescent cancer advocacy organization.

“The parent’s role in a teen’s health care should not to be to take over the child, but to encourage the young person to take ownership of this new reality,” Dr. Sender says.

Begin with honest conversations about the teen’s plans to manage his health, he recommends.

“Let the child come up with a solution to their problem,” Dr. Sender says. “It’s about respecting the teen’s emerging autonomy. You don’t want to have a hovering parent make every decision for the child.”

When confronted by a disagreement with a teen over a health care decision, parents should be patient, Dr. Sender advises.

“You have to go back and re-educate them,” he says. “Calm down. Don’t say things you are going to regret. If they disagree, it doesn’t mean they are wrong. Explain things to them again.”

Dr. Sender offered some tips for parents of teens with a serious or chronic medical condition:

  • Actively include the teen in meetings with doctors and health care providers managing his or her care. Make sure everyone addresses the teen directly and doesn’t treat him like a third party.
  • Don’t keep secrets or hide information from your teen, and never lie about their situation.
  • Help the teen act in his best interest and let him know he may fail.
  • Help your teen maintain peer relationships, including through social media.
  • Be prepared to have helpful discussions about sexuality if necessary.

For teens who are hospitalized, CHOC works to create a positive environment for patients and their families. These amenities include a teen room, family lounge, family consultation rooms, a meditation center and the Family Resource Center, which is stocked with educational resources including Internet access, books and pamphlets.

To learn more about the role of teens in their health care, go to choc.org/health.

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