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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Not Fighting Cancer Alone: Sydney’s Story

By Sydney Sigafus, cancer warrior and CHOC Children’s patient

As a teenager and an athlete, my life revolves around sports. As a sophomore at Foothill High School, I’m one of the sports anchors for our school newscast. I’m also a member of the JV girls’ basketball team, which has always been like a second family to me.

childhood cancer
Before fighting cancer, Sydney was a member of her school’s JV girls’ basketball team.

During last year’s summer league season, I started to have pains on the right side of my back. I thought I had simply pulled a muscle, so I told my mom about it. Off we went to the pediatrician, who sent us to get an MRI. We were referred to Dr. Nader Nassif, an orthopedic surgeon who sees patients at CHOC. He saw a spot on my upper femur that was small at the time, but that he wanted to keep an eye on. He said it could be a number of things— one of those being cancer— but he didn’t initially think that that’s what it was because of where the spot was on my bone and what it looked like. He told us to come back in three months for more scans.

By our next appointment, the spot had grown by a few millimeters, so we did a biopsy, which is a test that’s performed to examine tissue or cells from a certain part of the body. That test showed that the spot on my femur was cancerous. Dr. Nassif was surprised, since most teens with Ewing’s sarcoma have it in the knees and it grows very quickly, but mine was near my hip and grew very slowly.

Meeting my care team at CHOC

Dr. Nassif told my family that we were going to be working with Dr. Elyssa Rubin, a pediatric oncologist and director of the bone and soft tissue sarcoma treatment program at CHOC. I learned quickly that Dr. Rubin is not only your doctor but also your friend. She would come into my room and not only ask me how I was feeling, but she wanted to know if I was able to see my friends that weekend, if I had made it to the basketball game at school, or if I had seen the latest movie that just came out. I always felt like she cared about me not just as a patient, but as a person. She laid out the game plan very clearly for me and my parents and answered all the questions we had (and some that we asked over and over again). My treatment plan called for six rounds of chemotherapy before surgery and eight rounds after.

childhood cancer
“I learned quickly that Dr. Rubin is not only your doctor but also your friend,” Sydney says. “I always felt like she cared about me not just as a patient, but as a person.”

I was lucky to have the very best nurses. They were amazing throughout my entire journey. It stinks to have nausea or not be able to do something with my friends because my counts were down, or even be able go to school — but my nurses, especially my nurse practitioners Liz Torok and Jody Pathare, have made something that seems so tough, a lot easier.

Physical therapy has played a big role in my life after surgery. My physical therapist Robin Beauregard is a two-time Olympic medalist, so as an athlete, she helps me connect with my treatment. She’s no-nonsense and very witty like me, and it makes me really look forward to physical therapy sessions.

childhood cancer
Thanks to having an Olympic medal winner on her care team, Sydney was able to look forward to physical therapy sessions.

Another group that has made my journey so great has been the child life team. I can’t say enough good things about them, especially Kara, the child life specialist who works with adolescent and young adult patients. She heard I loved sports, and on day one of treatment, she brought me a huge basket filled with swag from my favorite sports teams and even a basketball hoop for my room. I assumed it was a one-time thing, but she has come to visit me every single time I’ve been at CHOC for treatment. She even came into the operating room with me when I needed an epidural for my surgery because I was scared and my parents couldn’t come into the OR with me. It was hard for my parents to be in the waiting room while I was in the OR, but knowing that I had Kara by my side made them feel so much better. During surgery, my tumor was removed and a prosthesis was put in for my upper femur. After finishing eight more rounds of chemotherapy after surgery, my scans confirmed that I was cancer free!

childhood cancer
During her treatment, Sydney quickly bonded with Kara, the child life specialist who works with adolescent and young adult patients.

Every single person I’ve met at CHOC has been amazing — especially the woman who cleaned my room. She called me princess!

Making the hospital feel like home

Not only has child life supported me on my journey, but they’ve also helped make the hospital feel less like a hospital. This goes beyond bringing an Xbox to your room to take your mind off your treatment. It starts with the way CHOC looks  can you imagine receiving treatment in a place that just had white walls and a white floor? CHOC is the opposite. It’s colorful. It has gardens you can go outside and sit in. There are playrooms everywhere. There’s a lounge that’s just for teens. I’m not musical or artistic, but for the patients that are, they’ll bring you instruments and introduce you to a music therapist, or bring you drawing and painting supplies.

Finding support in unexpected places

When I started this journey, I felt so alone. What are the chances I would know another teenager that is going through this? I soon realized that I did have someone who understood what I was going through, someone that I looked up to even before I was diagnosed with cancer. When I was a freshman, there was a senior at my school who was fighting osteosarcoma (a type of bone cancer) in her knee. Claire was an athlete like me before she was diagnosed with cancer. Our school recognized her as Homecoming Queen during her treatment, and I remember watching her use crutches during the ceremony where she received her crown. At the time, I thought she was so amazing, and I was really moved by her story. Six months later I received my own diagnosis. Claire immediately reached out to me, met me at the hospital and has been offering me nonstop support ever since.

Another pleasant surprise was getting to meet the doctor who delivered me 15 years ago! Dr. Gigi Kroll is a member of the CHOC Children’s Foundation Board of Directors, and I got to meet her at a fundraising event for the Hyundai Cancer Institute at CHOC. My mom had a complicated delivery when I was born, and I’d heard a lot growing up about how wonderful her doctor had been. It was so cool to meet her in person, and nice to know that she’s part of making CHOC the amazing hospital it is today.

Choosing to be positive

I’ve always been a happy and positive person, but I’m also realistic. Of course there’s going to be times on this journey when you’re sad, because who doesn’t get upset about cancer? But I’ve learned that if you’re sad, it’s going to make a bad situation ten times worse.

Even with all the support around you, it’s important to realize that there is only so much other people can do for you. There comes a point where you have to do things for yourself and choose to be positive.

childhood cancer
Red Nose Docs were a welcome distraction and source of positivity during Sydney’s treatment.

I try to be positive all the time. I have a great support system, which includes my family, my friends, my doctors, my nurses and child life.

On the day of my surgery, I set a goal to be able to walk back into school for the start of my junior year. A few weeks ago, I accomplished that goal! I’m starting to think about colleges, and I’m looking to study kinesiology. I want to become a pediatric physical therapist and an athletic trainer.

I’ve learned a lot from this journey. My family and I have been incredibly blessed by my care team and other families who have taken us under their wing, and I want to repay them by doing whatever I can to help motivate other patients who may be struggling to stay positive.

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

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Personalized Spinal Implants: Nikki’s Story

Four. That’s the number of days it took for Nikki Clark to return home following scoliosis surgery at CHOC Children’s Hospital. Dr. Afshin Aminian, an internationally-recognized expert in pediatric orthopaedics and medical director of the CHOC Children’s Orthopaedic Institute, performed the surgery using the latest techniques and technology to minimize pain and yield the best outcome for his teen patient.

A customized approach to care

Nikki was among the first patients at CHOC to benefit from personalized spinal implants. Based on detailed measurements and perioperative planning, customized rods were created to the precise length and shape of Nikki’s spine. The goals of this approach are better alignment and accurate correction of the patient’s spine. Customized implants and patient-specific rods decrease surgical time. In addition, they have the potential to improve recovery time and minimize future problems related to scoliosis.

scoliosis surgery
X-rays of Nikki’s spine, before and after receiving custom spine implants during scoliosis surgery.

“Our specialists have fine-tuned the most innovative, effective treatments for scoliosis, with a focus on maximizing each patient’s ability to function, grow and enjoy quality of life,” says Dr. Aminian. “Most of our patients are active teens, who are eager to return to their sports and activities. We want to do everything we can to help them do that.”

Making the jump

A swimmer and competitive water polo player, Nikki was thrilled to hear Dr. Aminian’s approach to care. Less than a year after being diagnosed, she decided to pursue surgery rather than wait. Her focus:  being ready for the upcoming season.

“I knew my life was going to get busy and really wanted to make sure I could play water polo during my junior and senior years. I wasn’t afraid of the surgery or the pain. I was more worried about not being able to play,” explains Nikki.

The morning of her surgery, Nikki began feeling anxious; not scared, as she pointed out to the child life specialist who came to check on her in pre-op. “I knew I had the best doctor, at the best hospital in California, and was ready to get the surgery over and done,” recalls Nikki.

A few hours after surgery, Nikki was surprised she wasn’t experiencing as much pain as she anticipated. The next day, a physical therapist helped her sit up for the first time. “It felt so good to finally be able to move,” says Nikki, who also enjoyed ordering milk shakes from CHOC’s room service menu. The chocolate banana one was her favorite.

scoliosis surgery
After scoliosis surgery to receive personalized spinal implants, Nikki was surprised she wasn’t experiencing as much pain as she anticipated.

She continued to follow all the guidelines, including getting out of bed to walk. Her physical therapist and nurses were among her biggest cheerleaders, praising her for quickly reaching the milestones required for her to go home. On Nikki’s fourth day at CHOC, Dr. Aminian proudly announced she was going home.

Nikki’s recovery at home continued to progress at a record pace. A month later, she returned to school. Two months later, she was back as a junior life guard in Newport Beach. The determined athlete surprised everyone by finishing the “monster mile,” which includes running a mile and swimming a mile. By the end of summer, she had also completed eight jumps off the pier.

scoliosis surgery
Nikki loves being outdoors, and quickly returned to her active lifestyle after scoliosis surgery.

Back in competitive water polo, Nikki proudly shows off her surgical scar. She’s been approached by other players, who have scoliosis. She encourages them to “make the jump.”  “You’re strong and in great shape. You can handle surgery,” she tells them.

Learn about scoliosis services at CHOC now.

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An Unexpected Case of Appendicitis: Jordan’s Story

Six-year-old Jordan was enjoying a fun break with his family in Big Bear, Calif. when he started complaining of stomach pains one afternoon. He had no chronic conditions or other symptoms, so his family didn’t immediately think it was anything serious. They assumed it might be a stomach virus, and never imagined that he would need to undergo surgery at CHOC Children’s a mere 24 hours later.

stomach pain or appendicits
When Jordan complain of stomach pains while on vacation with his family, they never image he’d undergo surgery a mere 24 hours later.

Late that night Jordan was in tremendous pain, so his parents took him to an emergency room near their resort. Two local physicians ruled out anything serious. They told Jordan’s parents it was likely just constipation or gas, and sent Jordan home.

“We were wary of the diagnosis received and being vigilant, we cut our family vacation short and rushed home so we could be closer to CHOC if his condition worsened,” says Jordan’s mom, Emma.

His pain became unbearable overnight.

“We knew his pain was abnormal and didn’t want to take any more chances at any local hospital. I wanted to know my son was in a place that specializes in kids.”

An accurate and timely diagnosis at CHOC

Testing in the ED immediately revealed that Jordan had a unique case of appendicitis with ileo-colic intussusception (a condition where part of the intestine folds into itself, like a collapsing telescope), and would undergo surgery that same day.

“Appendicitis is the most common reason for abdominal surgery in children. Pediatric surgeons at CHOC saw over 700 cases of appendicitis last year,” says Dr. Peter Yu, a pediatric general and thoracic surgeon at CHOC. “Many of these patients first come through the emergency department, meaning our ED staff is well-versed in both classic and non-traditional symptoms of appendicitis, and very unlikely to miss a diagnosis. Also, when we discover unusual variations associated with common childhood illnesses, such as ileocolic intussusception with acute appendicitis, the pediatric surgeons here are prepared to deal with it.”

Surgery at a Place Designed Just for Kids

Receiving a correct diagnosis faster meant that Jordan was on his way to surgery before his symptoms worsened.

“Jordan’s parents made a good decision in bringing him straight to CHOC,” says Dr. Yu. “If they had gone to an ‘adult’ hospital first, they would likely have been transferred to CHOC for surgery anyway.  This can be costly, delays care, and can be a huge inconvenience for families.”

Learning that your child needs surgery can be scary for parents to hear. But thanks to Jordan’s parents’ decision to bring him to a hospital that only treats kids, Jordan was under the care of pediatric-trained specialists using equipment that’s made just for kids.

CHOC has pediatric surgeons on call 24/7, meaning there is always a pediatric-trained specialist ready to treat your child, no matter what time of day or night your child needs surgery.

“These events are extremely stressful as a parent because while we are still digesting the diagnosis, we need to ensure we make sound decisions in a short amount of time,” says Emma. “Dr. Yu was patient and very thorough, and I knew there was no one else I would rather have care for my son.  He was in excellent hands. We were probably his last surgery of the day but he made us feel like we were his first.

After making the decision to return to CHOC for Jordan’s correct diagnosis and surgery, their son was not only in the hands of a pediatric surgeon, but a pediatric anesthesiologist as well.

“Although, an appendectomy is one of the less invasive surgeries a child can undergo, as a parent you’re still very much concerned of the potential issues that could arise from going under anesthesia,” Emma recalls. “Knowing he was under the care of an anesthesiologist who specializes in children was a great comfort to my husband and me. After we met with his surgery team, we knew he was in the best hands possible.”

stomach pain or appendicitis
Jordan and his pediatric surgeon., Dr. Peter Yu.

Healing faster in an environment just for kids

Jordan sailed through surgery with flying colors. His appendectomy was done via a single incision hidden in his belly button, meaning he will have minimal to no scarring after surgery. His intussusception self-resolved and needed no additional surgical intervention.

After surgery, Jordan only needed to stay at CHOC for one night for observation, but he had so much fun that he would have stayed even longer if he could have, Emma recalls.

“Jordan loved being at the hospital because he felt like he was the boss! Everyone was so attentive to him. Every person that we interacted with, from the nurses that cared for him and spoke in a way he would understand, to the volunteer in the play room that let Jordan teach him how to play chess, helped make CHOC a kid-friendly place. I know any fear of doctors, hospitals and surgery that Jordan had were all lessened because of this environment.”

stomach pain or appendicitis
Jordan only had to spend one night in the hospital after his emergency surgery for appendicitis. In that time, he benefited from the generosity of a volunteer in one of the hospital’s play rooms, who let Jordan teach him how to play chess.

Jordan spent a few days resting at home and was back at school the following week.

“Dr. Yu helped get us through this high-stress situation with our son with the amount of professionalism and care you would ever want in a scary time. He is hands down one of the best. We’ll be forever grateful to Dr. Yu!” says Emma. “Now that I know how wonderful the emergency department and entire staff is at CHOC, I won’t take my kids anywhere else.”

Get answers to parents’ frequently asked questions about surgery

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A Reunion of Heroes: Katie’s Story

After recently being discharged, Katie Flathom stopped by the CHOC Children’s cardiovascular intensive care unit (CVICU) again to make some introductions.

Suddenly, the 16-year-old has a group of heroes in her life: the coach who resuscitated her on school campus and the CHOC team that treated Katie for three weeks and will continue her care as she navigates life with a newly diagnosed heart condition.

During a recent athletic conditioning class in school, Katie collapsed and went into sudden cardiac arrest.

Her trained and quick-thinking conditioning coach snapped into action and resuscitated Katie with CPR until paramedics could arrive and transport her to CHOC.

“It was the longest 10 minutes of my life,” said Greg Vandermade, Katie’s coach at Mater Dei High School who also credits other students for alerting him to Katie’s condition and calling 911, as well as fellow staff who assisted by obtaining an automated external defibrillator (AED) to shock Katie’s heart into a normal rhythm.

At CHOC, Katie continued to have irregular heartbeats that required further defibrillation and cardioversion, procedures that help restore the heart’s natural heart rhythm, said Dr. Anthony McCanta, a CHOC cardiologist.

Katie also went on extracorporeal life support, a treatment that takes over the heart’s pumping function and the lungs’ oxygen exchange until a patient can recover from injury. This allowed the CHOC Children’s Heart Institute team to continue to treat her life-threatening arrhythmias with medication, Dr. McCanta said.

Dr. McCanta performed an electrophysiology study procedure and implanted beneath Katie’s skin a subcutaneous implantable cardioverter defibrillator, a device that helps prevent sudden cardiac arrest in patients.

After Katie’s discharge and further testing, she was diagnosed with Arrhythmogenic Right Ventricular Dysplasia, or ARVD.  A rare type of cardiomyopathy  where the muscle tissue in the heart’s right ventricle is infiltrated and replaced by fatty tissue and scar tissue, ARVD weakens the heart’s ability to pump blood and makes the heart susceptible to life-threatening arrhythmias.

The diagnosis also means Katie, a cross country and track athlete, will need to give up running for good.

“It was hard at first,” she said.

But instead of sitting on the sidelines, Katie’s decided to pick up golf, a sport that’s compatible with ARVD.

Katie has even begun incorporating a golf swing into her physical therapy sessions at CHOC, and she had two clubs in tow as she, her family and coach Greg visited the CVICU recently.

heroes
When Katie came back to visit the CVICU team and reunite her heroes, her CHOC care team presented her with a heart-shaped pillow, which they all signed with well wishes.

There, Dr. McCanta and the CHOC team presented Greg with a plaque recognizing him for his swift response and efforts that surely saved Katie’s life.

“Coach Greg responded to Katie with CPR on the spot and saved her life that day,” Dr. McCanta said. “His heroic actions, and those of Katie’s schoolmates and staff, including obtaining and appropriately using the AED, are the reason that Katie is alive today.”

Katie’s story underscores the importance of being trained in CPR and in the use of AEDs, Dr. McCanta said.

“Having AEDs in schools and training staff and students in CPR with an AED are some of the most important interventions that we have in saving lives of young people experiencing sudden cardiac arrest,” he said.

Getting AEDs installed in schools is among the goals of CHOC’s Life-Threatening Events Associated with Pediatric Sports – or LEAPS – program.

Coincidentally, Katie’s own grandmother, a nurse and health services coordinator in the Irvine Unified School District, has collaborated with LEAPS and helped get AEDs installed on her district’s campuses.

“Never did I think though that this would happen to one of my own family members,” said Marcia, Katie’s grandmother.

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