And when CHOC nurse Erika Crawford heard Christine playing a familiar song on a piano while receiving chemotherapy treatment one day, she spoke up.
“I told her I knew that song on the ukulele, and that we should play together,” Erika recalls.
Since then, the pair has regularly jammed together while Christine, 17, is in CHOC’s Outpatient Infusion Center. Inspired by Erika, Christine started learning the ukulele and the pair will tinker on songs together.
They even gave their duo a name: E.C. Teal, which incorporates their initials and the color they both happened to wear one day.
Because infusions can take hours, music helps Christine pass the time and take her mind off her condition.
“I’ve always loved music,” she says. “Going through cancer made me realized just how much I loved music.”
Erika began playing the ukulele only a year ago. She was previously learning the guitar and thought its smaller cousin might help her learn faster. And now, it serves as another way for her to connect with patients like Christine.
“It’s fantastic,” she says. “It’s the best part of the job.”
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.
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.
Seventeen-year-old Carson comes from a close-knit family of athletes and had been playing baseball for a decade when consistent, unexplained pain left his family stumped and looking for answers. Countless physical therapy and orthopedic appointments, plus endless X-rays, filled the next 18 months. When an MRI of his spine lead the radiologist reading his images to assume they were from a middle-aged person who’d played a lifetime of contact sports, rather than a 15-year-old boy, finally the family had a clue that Carson’s pain was not just an overuse injury.
At the time, pre-diagnosis, he was traveling a couple hours roundtrip every few days for orthopedic appointments related to wrist, elbow and shoulder pain.
He was ultimately referred to Dr. Andrew Shulman, a CHOC Children’s pediatric rheumatologist, and finally Carson’s family had the answers they’d been seeking for years. Carson was diagnosed with Juvenile Ankylosing Spondylitis, a form of arthritis that affects the spine and sites where muscles, tendons and ligaments attach to bones in the body. He was also diagnosed with Pain Amplification Syndrome, a condition in which patients develop abnormal pain sensitivity. The nervous system processes normal sensations from movement and environmental experience as pain signals. Carson’s family had never heard of Pain Amplification Syndrome before he was diagnosed.
“Dr. Shulman is such a powerful presence in my life,” says Carson. “The way that he explains things, he makes everything so much easier to understand. He relates directly to me.”
Looking back as far as eighth grade, a lot of Carson’s issues were tied to this condition. He had tried everything from water therapy to hypnosis, but nothing was working. Then Dr. Shulman recommended acupuncture and Carson’s mom Andrea says Ruth McCarty, director of Chinese medicine and acupuncture at CHOC, was ‘unbelievable in getting Carson to a good place.’
Carson’s care team also includes physical therapist Robin Beauregard and pediatric gastroenterologist Dr. Mitchell Katz.
Carson’s family is also a key component of his care team.
“Dealing with these diagnoses is a team effort,” says Carson. “My dad carries me up the stairs when my Pain Amplification Syndrome flares up and I can’t walk, and I squeeze his hand during Humira injections. My mom helps me mentally, and she’s made this so much easier to manage. Dr. Shulman has given us a path forward.”
Despite still making his school’s baseball team while fighting a dual diagnosis, Carson could no longer cope with the week or two of pain that came with playing a single inning. Now he works out daily in a gym whether he’s experiencing a flare up or not, which helps with both diagnoses. To fill the void that competitive baseball left, he often plays catch with his friends and former teammates.
“Carson’s journey with arthritis is a powerful one. It speaks to the importance of diagnosing arthritis, and the outcomes we can achieve with therapy,” says Dr. Shulman. “His experience shows that multi-disciplinary care has been transformative.”
Eight-year-old Jordin has sickle cell disease, a disorder that means her red blood cells are misshapen, which can lead to reduced blood flow to many parts of her body, and frequent hospital stays at CHOC Children’s for pain management. But for her, it’s also been an opportunity to fundraise and raise awareness of sickle cell disease.
CHOC is proud to be part of the Children’s Miracle Network Hospitals family, a national network of corporate partners and programs whose fundraising allows CHOC to help kids like Jordin, and offer exceptional care and state-of-the-art treatments and technology for patients and families with the most complex needs in pediatric medicine.
Recently named a Children’s Miracle Network Hospitals Champion, Jordin will spend the next year traveling the country and raising awareness of the needs of children’s hospitals throughout the nation, including those of CHOC. Each year, one child from every state is honored with this ambassador position.
Jordin’s ambassador tour kicked off with a trip to Washington, D.C. where Champions shared their inspiring stories to encourage charitable support for children’s hospitals, including attending Senate meetings on Capitol Hill. The end of her year as ambassador will conclude with a trip to Orlando, Fla. as the ambassadors reunite to thank and further inspire those who support the children’s hospitals the Champions depend on.
Jordin’s history with CHOC runs deep. When she was 3 years old, Jordin was admitted to CHOC for complications of sickle cell disease. Her care team suspected acute chest syndrome, one of the most common causes of death in sickle cell patients. Due to technology constraints at the time, tests were sent offsite for evaluation and getting results could take up to a week.
As they awaited the results, Jordin’s family made a commitment to help other kids fighting sickle cell disease.
“During that week, we realized that we needed to step up and do something for CHOC, so no other families had to wait this long,” said Jordin’s mom, Karen.
Karen recruited family and friends with event planning, social media and fundraising experience to form Jordin’s Journey, a group of people dedicated to fighting sickle cell disease, and helping Jordin. They raised $32,000 to secure a Sebia Electrophoresis machine, which helps monitor and treat blood disorders efficiently at CHOC.
When she grows up Jordin wants to be a doctor so she can help other children the way she’s been helped.
During a routine check for scoliosis during physical education class in seventh grade, a teacher noticed a slight curve in Jessica’s spine. A trip to her pediatrician soon followed. X-rays showed a thirty degree curve and since that was considered slight, follow-up imaging was recommended for a year later. By that time Jessica’s curve worsened by 15 degrees, and she was referred to Dr. Afshin Aminian, pediatric orthopaedic surgeon and director of the CHOC Children’s Orthopaedic Institute.
Bracing was initially recommended to try to prevent Jessica’s curve from getting worse.
“People my age don’t know that much about scoliosis even though it’s so common,” says Jessica. “I only had to wear my brace at night while I was sleeping, so no one ever really saw it or had the opportunity to tease me because of it, but they still asked questions, like was it comfortable or not.”
Although Jessica was vigilant about wearing her brace as instructed, her curve worsened by another twenty degrees, to nearly 70, and surgery was recommended. As a lifelong dancer, and a member of her high school’s competitive dance team, Jessica was initially worried that having surgery to correct this significant curve would affect her flexibility.
“It’s very common for children or adolescent patients to be hesitant or even fearful when they first hear they need surgery,” says Dr. Aminian. “We encourage all of our patients to ask a lot of questions so they really feel like they are involved in their care team. We remind them that the team of orthopaedic surgeons at CHOC uses the very latest methods in a setting that’s specially designed for kids and teens, so they are in the best hands possible.”
Jessica’s surgery was ultimately set for winter break during her sophomore year of high school.
“All of my nurses were so impressed that I was up and walking the next day, but after I went home it was harder than I thought to move around” she said.
At a check-up with Dr. Aminian a few weeks later, Jessica was healing so well that she was able to return to school three weeks after surgery, as opposed to the three month break she had expected. Thanks to her flexibility as a dancer prior to surgery, she could even touch her toes at her follow up appointment, to the surprise of her care team.
Getting back into the groove of a full school day did not come without challenges. To protect her spine as it continued to heal, Jessica had to adjust to sitting for longer periods of time, something she slowly worked up to before returning to school. She also brought a small pillow to school to make her desk more comfortable, and made arrangements with teachers to keep textbooks in class so she didn’t have to carry them around.
“For an active person like me, not being able to bend, twist or lift anything for three months was hard, but in the end it made me thankful because my recovery was temporary, and overall I am really healthy,” she says.
Jessica knew she wanted to document her recovery phase, so she asked her mom to film some footage while she was in the hospital. That eventually morphed into a series of YouTube videos educating others on scoliosis, recovery tips, and sharing her own journey with the condition. When she was diagnosed, she knew others who had scoliosis, but no one’s curve was as severe as her own, so some peer-to-peer questions were left unanswered.
“I want other scoliosis patients to know that it’s going to be hard, and you will have times when you can’t do something, but I promise it will get easier if you just go at your own pace and follow your doctor’s guidelines,” she says. “I love getting messages from people that watch my videos, thanking me for helping to calm their nerves before surgery.”
Filming these videos and helping other patients has helped to fill the void that dancing left. After losing one year of practice time due to surgery and recovery, Jessica decided not to go back to dancing.
“I’m busy in different ways now,” says Jessica. “Dancing provided great memories for me, but I’m on to a new chapter now.”
Penelope Grand had normal hearing from the day she was born. She loved to dance to music and she was easily woken by noises. Her parents, Luci and Paul, anxiously awaited her first word. Then, when she was about 10 months old, something changed.
“We really knew there was something wrong when I went to get her out of her crib after her nap one day,” mom Luci says. “She was calling out and fussing, she wanted out of there, and I came into the room but she wasn’t facing the door. I stood right in front of her crib and I called out her name, I clapped, but I got no response from her.”
Genetics are the cause of roughly half the cases of prelingual deafness, even when symptoms don’t appear at birth, as in Penelope’s case. Hearing tests and an auditory brainstem response (ABR) test revealed that Penelope had developed profound hearing loss in both ears. She had become essentially deaf.
“We were devastated,” Luci says. “I was preparing to hear ‘mild to moderate,’ not ‘profound.’ The air sucked out of my lungs. I wondered why. She is so sweet and loving, why did she have to lose her hearing?”
Penelope’s audiologist prescribed hearing aids, but she had no benefit from them. That made her an ideal candidate for a cochlear implant, a new treatment offered at CHOC Children’s in close partnership with Providence Speech and Hearing Center. A cochlear implant is a small electronic device that is surgically implanted under the skin behind the ear, and has an electrode that extends into the cochlea in the inner ear. The implant’s electrode directly stimulates the cochlear nerves that perceive sound.
Dr. Nguyen Pham, CHOC pediatric otolaryngologist and head and neck surgeon, performed two outpatient surgeries on Penelope to place a cochlear implant on each of her ears.
“A cochlear implant can be life-changing for a child,” Dr. Pham says. “Children who would have been in the deaf community are now joining the hearing community because of cochlear implants. It is essentially restoring nearly normal hearing in these children.”
A Sense of Sound Restored
Oct. 13, 2015, was a memorable day for the Grands. That’s the day Penelope’s cochlear implant was activated, amidst her family and a crowd of supporters from CHOC and Providence.
Penelope begins to hear at 0:06.
“The first moment we knew she could hear was, well, it’s hard to describe what that felt like: joy, pride, happiness, excitement,” Luci says. “The look on her face was beautiful. We must have rewatched that video a hundred times.”
A cochlear implant does not translate sound perfectly. Those who wear an implant hear sounds with a robotic, mechanical quality. Following the implant’s activation, Penelope’s team of audiologists at Providence fine-tuned the frequencies of the electrodes—a process called mapping—until they produced the optimal sounds for her ears.
Now, she is undergoing comprehensive speech and language therapy, a crucial step in helping her interpret the sounds she hears and learn to communicate. She also uses American Sign Language.
“We are in awe of her, how much she’s already progressed,” Luci says. “She responds to her name now when we call out to her. She finally said her first word, bye bye, and she can now say mom. She has begun to dance again. She also has started singing in the car with me along to the music. We realized that she is so smart and so very happy, and her potential is endless. We are happy and grateful every day that she had this opportunity.”
Nick Carebetta is an active 31 year old. When he’s not busy managing a restaurant, he’s surfing, running or hiking. The athlete has completed numerous half marathons and three Spartan races. To friends and family, he’s the picture of perfect health. In fact, people may be surprised to know Nick has hemophilia A.
A disease that prevents blood from clotting properly, hemophilia A is caused by a deficiency of a clotting protein called factor VIII. Nick’s case is considered severe. Patients like Nick bleed longer after an injury, and may have frequent spontaneous internal bleeding episodes in their joints and muscles.
Diagnosed with the disease when he was 3 months old, Nick experienced several bleeding episodes in his left ankle. The pain and inflammation impacted his mobility, which left him dependent on crutches for much of his childhood.
When he was 13, he underwent a procedure called radioactive synovectomy. A small amount of Yttrium, a radioactive material, was injected into Nick’s ankle to reduce the number of cells in the joint lining. This reduction leads to decreased inflammation, and hopefully less pain and more movement. Yttrium is used due to its low radioactive energy levels and its ability to leave the body quickly. Nick had the procedure performed twice. About four months after the second injection, Nick’s bleeds stopped; his pain dissipated; and his mobility returned.
Today, Nick manages his disease with help from CHOC Children’s hematology team. During his annual check-ups, he meets with a physician, physical therapist, psychologist and nurse coordinator.
“I am so impressed with the compassionate and comprehensive care I receive at CHOC. From the physicians, who are highly regarded in their field, to the psychologists, who care about my mental well-being, the entire team is dedicated to making sure their patients live happy, healthy and fulfilling lives, despite their disease,” says Nick.
There is currently no cure for hemophilia. Treatment includes clotting factor replacement therapy. Nick gives himself shots of a clotting factor, called factor VIII, three times a week. Depending on his level of activity, he may adjust his dose. He also follows instructions from his CHOC care team to preserve his joint mobility and core muscle strength. He doesn’t let his treatment or his disease interfere with his life.
“Nick is setting an example for all of our patients that hemophilia does not define who he is. He chooses to be more,” says Dr. Amit Soni, CHOC hematologist. “In addition to his active lifestyle, he is passionate about theater and the arts, and is leading the restoration effort of a historic theater. He’s also incredibly altruistic in his efforts to give back to the community, whether through participating in clinical trials to advance hemophilia care for the next generation to raising money by joining in the CHOC Walk.”
Zac McNeese laced up his first pair of hockey skates before his third birthday. By the time he turned 7, his competitive team was traveling all over the country and being coached by former professional players. A series of concussions prematurely ended his time as a nationally ranked hockey player at the age of 14 and kept him out of school for months. Thanks to holistic care treatments through CHOC Children’s integrative health services, working in partnership with CHOC’s concussion program, Zac is back in school and getting the chance to be a normal teenager again.
Three Concussions in Two Years
Zac’s first concussion occurred during a hockey tournament in Canada. A hit to the head with a hockey stick rendered him unconscious for a short time, followed by short-term memory loss. He was taken to the nearest emergency room for evaluation. After a six-week stint out of school and sitting out of hockey for another few months, he returned to the sport he loved.
But three games into his return he suffered a whiplash-style concussion. Although this one was milder than the first, its proximity to the last injury concerned Zac’s doctors. His family was familiar with the medical benefits of acupuncture, so his parents convinced him to give it a try in hopes of relieving chronic headaches and back pain that was lingering from his second concussion.
“It took some time for me to warm up to the idea of acupuncture, but my older brother had these treatments done when he was a patient at CHOC, and I knew how much they had helped him, so I finally decided to try it for myself,” says Zac. “Over time I saw results and could feel it helping my neck and back problems.”
He began acupuncture treatments with Ruth McCarty, director of Chinese medicine and acupuncture at CHOC.
“The goal of acupuncture treatments is to improve the quality of life for our pediatric patients with diverse medical problems by providing benefits that complement their other medical treatments. Acupuncture isn’t invasive or scary, and it helps you relax.” explains Ruth. “If you can’t relax, it’s impossible to start healing your other ailments.”
The National Institutes of Health have critically evaluated clinical studies and concluded that acupuncture is effective for a variety of medical problems including management of pain and headaches, added Ruth.
Other treatment methods Zac benefitted from include massage, aromatherapy, herbal supplements, yoga and meditation helped improve Zac’s headaches and depression, says Zac’s mom Dana.
A year later Zac suffered another, more serious concussion. During a hockey game, he got hit from behind and was knocked unconscious while mid-air, then fell and hit his head. He was paralyzed from the waist down for 36 hours and doctors ran numerous tests to scan for permanent damage. After a few days of observation, he was sent home to rest in a neck brace, but wouldn’t return to school for several more weeks.
A New Normal
Zac’s care team said he could not play hockey again, for risk of future injury. The news was devastating to the young man who had given up countless social activities over the years to dedicate himself to hockey.
“When my doctors said I couldn’t play hockey ever again, at first it just felt like a break, like my season had ended and I would be back on the ice soon with my teammates,” says Zac. “But after six months of not playing, it finally hit me that I was never going back to the sport I loved and had played for almost my entire life.”
Zac struggled with chronic anxiety and bouts of depression while he dealt with this news. He also struggled with acclimating to high school. He’d been a straight-A student for years, but he now had trouble concentrating. He also experienced hyperreflexia, meaning his reflexes were overactive and his legs often twitched and bounced.
He decided to try home-schooling as he continued working on his recovery, which included more frequent sessions with Ruth and ongoing monitoring by neurologists in CHOC’s concussion program.
That break from school turned out to be as beneficial for his health as it was for his mind.
“Now I want to help other kids going through this. When I got my concussions, I didn’t know anyone else who had gone through it,” Zac says. “But I want to encourage other kids to be open minded about talking to someone about how you’re feeling, and don’t be stubborn about alternative treatments.”
To fill the void, Zac has taken up lower-impact sports like tennis and golf. He now has time to explore his new interests, like playing guitar and piano. He remains under the care of a CHOC neurologist and continues weekly treatments with Ruth.
“He’s a very resilient kid, but he wouldn’t be where he is today and be back in school without being open to alternative medicine and being able to talk to someone about his sense of loss, and how he was going to move forward,” says Dana.
Athletes and other adolescents with mild to severe concussions who experience symptoms such as dizziness, feeling unbalanced on their feet, blurred vision or trouble focusing on objects, may be good ...
CHOC Children’s multidisciplinary team of concussion experts can help prevent and treat concussions, as well as help patients ease back in to school and sports. Careful supervision is essential for ...
Even through intense water polo training and games, Ashley Klein had never experienced as much as a flutter inside her chest. And suddenly, emergency department staff were using words like heart failure, bypass, transplant and pacemaker.
A routine sports physical showed Ashley had an elevated heart rate, and CHOC Children’s cardiologist Dr. Anthony McCanta ultimately diagnosed her with ventricular tachycardia, a condition wherein her heart beat too fast and pumped blood in a dyssynchronous, or disorganized, way. This caused her heart muscle to weaken and enlarge, a second diagnosis called tachycardia-induced cardiomyopathy.
Though she felt perfectly fine, unbeknownst to Ashley, she’d had a ticking time bomb inside her chest.
“When you read about those poor kids who die suddenly at sports practice, this is that,” Ashley’s mother, Lisa, said. “It was really frightening.”
Ashley’s heart was only pumping out about 13 percent of the blood in its left ventricle. This measurement is called ejection fraction, and a normal heart should pump at least 55 percent. Ashley was at great risk for heart failure, and Dr. McCanta needed to work quickly.
After trying anti-arrhythmic medications, Dr. McCanta opted to correct the problem through radiofrequency ablation. By inserting catheters through Ashley’s leg and up into the heart, he would destroy cells in Ashley’s heart that were misfiring and causing the problem.
But in Ashley’s case, this procedure was especially complicated because of the location of the problem inside her heart.
Dr. McCanta and his team used catheters to create detailed 3-D maps of the inside of Ashley’s heart. The maps revealed the abnormality that was causing the rapid heartbeat was in the ventricle, but near the atrioventricular (AV) node, which sends electrical signals between the upper and lower portions of the heart.
Harming the AV node during the ablation would have resulted in Ashley needing a pacemaker. However, not correcting the ventricular tachycardia would almost certainly increase her risk of severe heart failure and lead to the possibility of needing a heart transplant, Dr. McCanta said.
“This was a risky procedure with very high stakes. Precision was even more important than it usually is,” he said. “During the procedure, I discussed the risks of potential AV node injury versus worsening heart failure with Ashley’s family, and they decided it was more important to take care of it. So, we fixed the problem in a safe way.”
To ensure total accuracy, Dr. McCanta relied on the detailed 3-D heart mapping and a precise radiofrequency burn to ablate the problematic cells. The technology is used in CHOC’s state-of-the-art cardiac catheterization lab.
Within days of her procedure, Ashley’s heart function was almost completely restored and her ejection fraction had increased to about 48 percent.
“Her recovery has been remarkable,” Dr. McCanta said.
After taking the summer off from sports to recover, Ashley, 16, re-joined her water polo team this past fall.
“We are so grateful Ashley was at CHOC,” Lisa said. “Throughout the whole ordeal, we had complete faith in her doctor and knew that, regardless of the outcome, she was being given the best care by the best doctors and nurses. We would not have wanted to be anywhere else.”
Lisa added, “We want to stress the importance of sports physical, which we used to consider tedious. It literally saved our daughter’s life.”
Before Mackenzie James-Wong was born, prenatal ultrasounds and testing diagnosed her with TAR syndrome, a rare genetic disorder that meant she was missing a bone in each forearm and had a dramatically low platelet count. Doctors also detected a heart defect that would require surgery immediately after she was born. Her mom Lindsay changed her birth plan so she could deliver at St. Joseph Hospital, and Mackenzie could immediately be under the care of nearby CHOC Children’s.
Her family’s relationship with CHOC’s Blood & Donor Services Center started when Mackenzie was in the Neonatal Intensive Care Unit (NICU). They quickly learned how many transfusions lay ahead of them.
A healthy baby’s platelet count at birth is 50,000. Mackenzie’s was just 13,000. She needed transfusions right away. Mackenzie spent the first six weeks of her life at CHOC, and received dozens of platelet transfusions during that time. Over the next three years, she received nearly 200 blood and platelet donations.
“Sometimes she needed two transfusions in the same day. Eventually it slowed to every other day, and then once every 10 days, but then we regressed back to every four or five days,” said Lindsay. “The team from Blood & Donor Services visited us in the NICU, and educated us about the importance of finding regular donors who were a match for Mackenzie and who could provide a reliable and steady stream of platelet donations to fulfill her needs.”
The Blood & Donor Services Center identified two donors who were each a perfect blood and platelet match for Mackenzie. With her family’s permission, the donors heard Mackenzie’s story and how they could help. They opted into the Designated Donor Program, which allows a donor’s blood and platelets to be directed to a specific CHOC patient in need. Mackenzie has since met her donors, who have become part of her family, Lindsay says. Every year in December, one donor dons a Santa Claus suit, grows out his beard, and brings Christmas gifts to his donation appointment for Mackenzie and her older sister. The pair of donors come to Mackenzie’s birthday party every year, and have been known to rush home from vacation to make special platelet donations if Mackenzie is in need.
Every time Mackenzie has an appointment at CHOC, she stops by the Blood & Donor Services Center with her mom to personally thank donors for helping kids just like her.
“I tell these donors every time I see them that they are literally saving my daughter’s life with every donation,” says Lindsay. “She would not be here without platelet donations. When they donate blood and platelets at CHOC, it stays at CHOC to help patients like my daughter.”
In 2015, CHOC donors supplied 45 percent of the blood and platelets needed by CHOC patients requiring a transfusion. CHOC had to purchase the remaining needed blood products from outside sources.
“Having blood and platelets come directly from our blood donor center allows us to have the freshest blood available to meet the critical needs of our patients, and support our recently opened Trauma Center,” said Colleen Casacchia, RN, manager, CHOC’s Blood & Donor Services Center. “CHOC relies on blood donors in our surrounding communities to help meet our patients’ transfusion needs. One blood donation can save two lives and only takes about one hour of time every two months.”
Donating blood and platelets at CHOC has become a family affair for Mackenzie’s relatives. Her dad, grandparents and aunts all donate blood and platelets at CHOC in honor of Mackenzie.
For Lindsay, donating blood began at a young age. She celebrated her 17th birthday by making her first blood donation. Although she isn’t a match for her daughter, she regularly donates blood at CHOC to help other patients in need.
“I can’t always give financially, but blood is something I have plenty of, and it really doesn’t take that much time out of my day,” she says. “It was always something I was passionate about, but once it hit my family, I realized how life-saving it truly was. I want other persons to realize how important it is to donate blood and platelets, before someone in their family has a need for it.”