Ringing in the new year cancer-free

Skinnier arms and legs and exhaustion to the point of taking naps. These were the initial signs that left Jamie wondering if there was something wrong with her 5-year-old son, Jacob. Weeks later, the most alarming sign appeared: blood clots in his urine. 

 Jacob was taken to his local pediatrician and it was there a large lump on his lower left abdomen was discovered. Knowing it was something much more serious, Jacob’s pediatrician immediately sent Jacob and his family to CHOC at Mission Hospital. 

 “Our world was changed” 

When Jacob arrived, an X-Ray and a CT scan were ordered to further observe the lump on his abdomen. The results showed a tumor on his left kidney and over 30 small tumors growing on his lungs. DrKenneth Kwon, an emergency medicine specialist, delivered the news that Jacob has Wilms tumor  type of kidney cancer commonly found in young children. Jacob’s cancer was stage 4 and had spread to his lungs. 

“We were devastated,”  Jamie recalls“In just a few hours, our world was changed. 

Jacob was transported via ambulance to the Hyundai Cancer Institute at CHOC Hospital in Orange. Instead of feeling scared or worried, Jacob enjoyed watching Toy Story during the journey alongside his newly acquired rocket ship balloon and stuffed monkey. These small comforts during an anxious situation are one thing that helps differentiate a pediatric hospital. 

 The plan 

“The first time coming to CHOC was extremely difficult,”  Jamie says. “But the nurses and staff could tell we were struggling with the news and they did everything they could to make us feel comfortable. They also explained everything that was happening to Jacob in a way that we could understand.” 

CHOC patient Jacob and his family
Jacob and his family

Dr. Josephine HaDuonga CHOC pediatric oncologist, recommended chemotherapy for six weeks and then re-evaluating the growth of the tumor. Jacob came to CHOC’s Dhont Family Foundation Outpatient Infusion Center once a week to receive his initial chemotherapy. Though the process was hard and challenging, especially during a pandemic, Jacob put on a brave face every time he came in. He eventually created bonds with his child life specialist, nurses in the clinic and Dr. Agnes Horvath, a pediatric oncologist/hematologist at CHOC. 

After the initial six weeks, chemotherapy had shrunk the tumor on his kidney by almost 50%The rest of the tumor could be removed by surgery. 

CHOC patient Jacob during cancer treatment
Jacob flashes a smile behind his mask, as he plays on a tablet in CHOC’s outpatient infusion center.

“The day of surgery was extremely tough on my husband and I,” Jamie says. “Having to experience your young child go through something like this is already hard, but to add a pandemic on top was even harder. However, seeing Jacob’s resilience was what got us all through it.” 

 In the spring, Dr. Peter Yua CHOC pediatric general and thoracic surgeon, successfully removed the rest of the tumor on Jacob’s kidney. However, Jacob was not in the clear just yet; there were still the small tumors on his lungs that needed to be tackled. 

CHOC patient Jacob and Dr. Yu
Jacob and Dr. Peter Yu give a thumbs up on surgery day

For the next 31 weeks, Jacob underwent stronger chemotherapy five days a week as well as radiation that targeted the tumors on his lungs. During that time, there were many trips to the hospital for scans, labs, appointments and a few inpatient staysThere were hard and tough days, but Jacob remembers the simple moments of receiving toys from the Cherese Mari Laulhere Child Life Department and getting his favorite snacks.  

“In those months, we leaned heavily on our family, friends, faith and the expertise of our oncology team,” Jamie says. “They are the ones who helped us see the light.” 

 Bright, ringing moment 

Towards the end of summer, Jacob received one of his last CT scans. The only items that showed were two small spots on his lungs that doctors deemed to be scar tissue. 

Jacob was declared cancer-free. 

A few short days later, Jacob was able to participate in a special tradition to help celebrate the news: ringing the bell. 

CHOC patient Jacob and Dr. Josephine HaDuong
Jacob and Dr. Josephine HaDuong on bell-ringing day

Each patient who completes their last chemotherapy treatment at CHOC is cheered on by nurses, doctors and staff, and has an opportunity to ring a bell to signify the end of a long journey. The plaque on the bell reads: 

 Ring this bell, three times well. 

Its toll to clearly say, my treatment is done, this course is done, and I’m on my way! 

“It was an emotional moment for the whole family,” Jamie says. “We have all been waiting for this day! Jacob could not stop smiling.” 

Since that moment, Jacob has now celebrated his 6th birthday. He’s excited to play sports again and hopefully start school in January. 

“Even though it was an extremely tough journey, there is good that came out of it,” Jamie says. “Jacob knows he’s strong and brave, and we couldn’t be prouder of him.” 

CHOC patient fulfills a final wish, shaves favorite CHOC staffer’s head

Daya Tamayo grabbed the electric clippers and prepared to go to town.

“Could you remove the white hair too?” joked Jaime Serna, a CHOC staff member.

Daya beamed as she began to give a buzz cut to Jaime, her close confidant and a patient engagement coach and educator in nursing administration at CHOC.

Jaime was making good on a promise he made to Daya over a year ago, when Daya was diagnosed with stage-four rhabdomyosarcoma, a rare type of cancer that forms in soft tissue.

“Daya, when you get bald, I’m going to get bald with you,” Jaime told her at the time.

Jaime, a longtime CHOC employee, is beloved by many CHOC patients thanks to his years as a phlebotomist who could make blood draws less painful and scary.

Not wanting to wait to lose her hair, Daya cut her own long black hair before starting chemotherapy treatment. After she completed her first round, Daya danced on her bed.

“I’m a warrior!” she shouted.

A brief trip home

After rounds of chemotherapy and radiation following her initial diagnosis, Daya and her mother, Deisy Saldana, her brother Alan, and other relatives who for months had rotated visiting her at CHOC and staying at the Ronald McDonald House returned to their home in Catalina.

Daya, an athletic seventh grader with a love for swimming, basketball and baseball, felt well enough to enjoy ziplining and other outdoor and ocean activities.

Then, her conditioned worsened. Her cancer spread throughout her body, including to her brain.

Daya returned to CHOC.

Making good on a promise

As Daya approached the end of her life, she never forgot the promise Jaime made to her, and she made fulfilling it one of her last wishes.

Jaime recently let Daya, 12, shave his head inside her hospital room.

Daya’s support system

A few days after his haircut, Jaime, sporting a salt-and-pepper buzz cut, visited Daya.

Daya briefly opened her eyes and gave Jaime a thumbs up before closing her eyes again.

Then into the room walked Clare Loper, a child life specialist in CHOC’s Cherese Mari Laulhere Child Life Department, a group that works to normalize the hospitalize environment for children and families. Child life specialists can also offer new diagnosis education and support, and ever since Clare provided diagnosis education to Daya when she was first admitted to CHOC, she has supported Daya’s family.

CHOC patient and child life specialist
Daya poses with Clare, a child life specialist, in a photo taken before the
COVID-19 pandemic.

Soon, three other CHOC associates came to visit Daya: Theresa Coronado, oncology care manager assistant; Racquel Rearos, case coordinator; and Noemi Beas, case coordinator assistant.

They shared fun stories about Daya as they viewed dozens of photos plastered throughout the room, including ones of her quinceanera celebration that was held earlier this fall. The ceremony traditionally marks a girl’s coming of age, which in happy times comes when a girl turns 15.

Daya’s 13th birthday is Feb. 18, 2021.

Daya had plans to make YouTube videos about beating cancer to encourage other young patients. She loved to deliver food to them on the oncology floor.

A diehard Dodgers fan, word about Daya’s cancer battle reached the team’s dugout during the recent World Series. Dodger player Cody Bellinger texted Daya a special video greeting.

“Hi Daya, it’s Cody,” the star player said. “Everyone in the Dodgers clubhouse is rooting for you. We’re going to do everything we can to win this World Series for you, so stay strong, and we’re all rooting for you.”

The Dodgers made good on their promise to Daya, too.

Last wishes

Deisy said she and Daya talked about her last wishes. One of them was not returning home.

“I want to stay with my family at CHOC,” Daya had declared.

Another was cutting Jaime’s hair.

Another was Daya’s desire to be cremated.

“She wanted me to take her in a locket everywhere I go,” Deisy says.

After a long and heroic battle with cancer, Daya passed away in November.

“I knew it was going to happen,” Deisy said of losing Daya. “But I just don’t want to accept it. I don’t ever want to accept it.”

Theresa said Daya has made a big difference in her life. As a last message to Daya, she added:

“You are a warrior, a true definition of a fighter. You are the strongest and toughest girl I know. I love you to pieces.”

Jaime said Daya had the power to instantly lighten the mood in her hospital room.

“She never gave up,” he said. “No matter what happened to her, she didn’t show pain. She taught us all to be strong and not to be afraid.”

Cutting-edge device approved for compassionate use saves leg, life of young girl

When 7-year-old Naomi Adrian took a spill on the school playground earlier this year and a schoolmate fell on top of her left leg, she got up with a slight limp.

After what appeared to be a bruise kept growing, and as Naomi continued to walk awkwardly, her mother, Maria Nino, took her to the doctor.

A subsequent visit to a specialist revealed a tumor – an osteosarcoma, a type of bone cancer — on Naomi’s left distal femur, the area of the leg just above the knee joint.

When a doctor who was supposed to remove the tumor at a hospital near their home was unable to see Naomi on the day of the planned surgery, Maria rushed her to CHOC.

This began a medical journey for Naomi that, among other lessons, would give her and Maria a firsthand look at CHOC’s commitment to outside-the-box thinking when it comes to patient care, including investigational therapies, diagnostics and cutting-edge devices — as well as the benefits of CHOC’s partnership with UC Irvine.

Naomi’s lead physician at CHOC, Dr. Amir Misaghi, an orthopaedic surgeon with specialties in pediatric orthopaedics and musculoskeletal oncology, was able to secure a cutting-edge device — that doesn’t have U.S. Food & Drug Administration approval yet for use in pediatric patients — to help him successfully remove the tumor and reconstruct Naomi’s leg. He had used the cutting-edge device, Onkos Surgical cutting guides, before, but this would be the first time using it on a pediatric patient. These guides help surgeons make extremely precise cuts to remove tumors and surrounding bone.

Naomi with her mom and her CHOC doctoer
Naomi with her mom and Dr. Misaghi

When creating a personalized treatment plan for Naomi, Dr. Misaghi ruled out several surgical options that he deemed less promising and more burdensome on Naomi’s growing body. These included a rotationplasty, which would have resulted in the loss of her knee joint and a large portion of her leg, and required a prosthesis. He also ruled out another technique that likewise would have meant the loss of Naomi’s knee joint and a prosthesis that would have required several more surgeries as Naomi grew.

Dr. Misaghi then applied for a one-time compassionate use trial request with the FDA, which was approved.

In the surgery, Dr. Misaghi, assisted by CHOC orthopaedic surgeon Dr. Carl Weinert, used the Onkos 3D resection guides which had been customized to Naomi’s leg and the growing tumor on it, and removed the baseball-sized tumor and surrounding bone. This allowed them to spare Naomi’s knee joint and the part of her bone that grows through adolescence.

Dr. Raj Vyas, chair of plastic surgery at CHOC and vice chair of plastic surgery at UCI School of Medicine, then began to reconstruct Naomi’s femur. To do this, he dissected free a segment of Naomi’s fibula bone – which runs from the knee to the outside of the ankle, parallel to the tibia or shin bone — along with the artery and vein that supply blood to that segment of bone.

The fibula bone can be mostly removed without affecting someone’s ability to bear weight.

Drs. Misaghi and Vyas then worked together to hollow out a humerus bone – which runs from the shoulder to the elbow — and insert Naomi’s fibula bone into its core. The humerus bone was custom selected from a cadaver to match the size of Naomi’s femur and provide structural support to her leg. Dr. Vyas then connected the artery and vein supplying the fibula bone to a nearby artery and vein in Naomi’s leg using microsurgical techniques. This allowed the vascularized fibula to “bring back to life” the cadaver’s humerus bone so that it can continue to grow with Naomi.

“This was pushing the envelope as far as reconstructive surgeries go for this type of thing,” Dr. Misaghi says.

Dr. Vyas spent 10 hours working on Naomi’s leg.

“In kids, it’s especially an advantage to use their own tissue if possible. If we didn’t have the ability to do this miscrosurgery, then we would have just done an inferior operation,” Dr. Vyas says. “Being able to work together and plan to do this at a children’s hospital with Dr. Misaghi’s expertise and our expertise at UCI Health, we were able to provide Naomi with a state-of-the-art reconstruction.”

He added, “A while ago, maybe at some hospitals they would have just performed an amputation. Because we have Dr. Misaghi, who can do a limb salvage using a cadaver graft, we were able to really perform the best operation possible.”

A very active child, Naomi loved to participate in ballet and gymnastics before her diagnosis.

“Hopefully we can get Naomi back dancing,” Dr. Misaghi says. “That would be the goal.”

Trips to the park

These days, as Naomi continues to undergo chemotherapy, the now-8-year-old enjoys trips to the park where her older sister, Itzel, pushes her in her wheelchair.

Naomi, whose family has since relocated to the Fresno area, also loves arts and crafts, her dolls, and playing with her twin sister, Natalie.

twin sisters
Naomi with her twin sister Natalie, during a pre-pandemic trip to Disneyland

“I felt sad, but I knew that someone was always with me,” Naomi says of her cancer diagnosis and journey. “Thanks to Dr. Misaghi, they saved my leg and I’m feeling happier now.”

So far, Naomi is progressing very well, Dr. Misaghi says, who keeps in regular contact with her. A year out from surgery, Naomi will be back at CHOC for a second surgery to remove screws that were placed near her growth plate.

“It remains to be seen how her growth plate responds,” Dr. Misaghi says. “But the survival part of her prognosis is very good, since she had clear margins and she’s resumed chemotherapy, and so the function of her leg prognosis is very good. She has a normal knee joint. And hopefully when everything heals, she’ll have some metal plates remaining but be able to grow normally with her own growth plate.”

Naomi says her leg feels “good” but that she can’t walk yet – maybe in a year, though.

Itzel says Naomi has been a champ through the entire process.

“She never complained about pain even after the surgery,” Itzel says.

Itzel and her mother are grateful for the excellent care Naomi received at CHOC.

“We knew that it would be very hard for Naomi to accept losing her leg,” Itzel says. “She’s so young and she’s such a girly girl; she’s always worrying about how she looks and everything. We were happy that there was a way that that could save not only her life, but her leg.”

Mom Maria echoes that feeling of gratitude.

“We are extremely grateful to God for listening to our prayers and for the amazing doctors, nurses and staff at CHOC. I want to especially thank Dr. Misaghi and Dr. Vyas as they made sure Naomi got the care she needed. They are a great team,” she says.

Naomi already knows what she wants to be when she grows up.

“I want to be a surgeon so I can save other people’s hands and legs,” she says.

For inspiring cancer survivor, it’s 1st and goal

Every morning, 17-year-old Israel begins his day by lifting weights and, on alternate days, adding in a two-mile run.

Then, it’s time for a hearty breakfast fit for any teen bulking up for football season – four or five eggs, bacon and two slices of toast.

Israel Escobedo, a high school senior, then flips open his laptop for virtual classes.

In the afternoon, he again pumps iron to add muscle to his 6-foot-1 frame.

Israel, a middle linebacker, is preparing himself for a 10-game season that may or may not start in December, depending on COVID-19 guidelines.

That he’s in such great shape – just 15 pounds short of his usual weight of 200 – is something to behold, considering that earlier this year Israel underwent a bone marrow transplant (BMT) after being diagnosed with high-risk B-cell acute lymphoblastic leukemia (ALL).

Israel’s journey has been one of baby steps, hurdles and at times, low points.

But through it all, his clinicians at the Hyundai Cancer Institute at CHOC say Israel has exhibited grace, kindness and a positive attitude, despite the fear and pain that comes with any cancer diagnosis.

Israel saw his grandfather Jose battle prostate cancer for eight years before he passed away several years ago. So, when Israel found out last year that he had leukemia, he was floored.

“Honestly, I was just scared,” Israel says. “I’ve always had big goals and plans. I was always outgoing and healthy. I didn’t know what to expect.”

But how Israel handled his diagnosis and subsequent BMT – a process that can bring with it a grueling recovery process, with a brand-new and vulnerable immune system, especially for the first 100 days – has inspired his team at CHOC.

“My goodness,” says Miranda Wichelns, a social worker who helped care for Israel. “We’re all kind of in awe of him.”

A shining example

Israel was not able to attend the first day of in-person varsity football practice this season, but his pediatric oncologist Dr. Rishikesh Chavan hopes that Israel may be able to practice with his teammates soon.

For Dr. Chavan, who also serves as director of CHOC’s Blood and Marrow Transplant Program, Israel’s excellent recovery from his BMT is a shining example of how most BMT patients eventually resume normal lives.

“A lot of people think of a transplant as a big, bad thing,” Dr. Chavan says.

With the proper medical care, it’s not.

“When you look at Israel today,” Dr. Chavan says, “you would not be able to tell that he had a bone marrow transplant just eight months ago.”

A perfect match in the family

Back in August 2019, Israel wasn’t feeling his usual healthy self. He found it difficult keeping down food.

His dermatologist, who had been checking Israel’s blood monthly because of the acne medication he had been prescribed, noticed an alarmingly low number of white blood cells.

Israel’s primary care physician was also very concerned and referred him to CHOC.

On Israel’s first night at CHOC, his child life specialist Carly helped ease his jitters.

The next day, pediatric oncologist Dr. Carol Lin diagnosed Israel with ALL.

Israel underwent several rounds of chemotherapy before Dr. Chavan and Dr. Lin, along with the leukemia team, determined he needed a BMT.

Israel receiving treatment at CHOC
Israel receiving treatment at CHOC

The actual day of BMT is relatively simple, akin to receiving a blood transfusion – but a lot goes on before and after the procedure.

Israel needed a donor and his sister Genesis turned out to be a perfect match.

“I just didn’t want to sit around and see him suffer,” says Genesis, who was 14 at the time of the transplant. “It was good to know I could actually help him.”

Israel is forever grateful for his sister.

“I love her,” he says, adding with a laugh, “but there are days I can’t stand her.”

Undergoing a bone marrow transplant

 The process of donating her blood-forming cells – or blood stem cells – for transplantation wasn’t too painful, Genesis says.

After a BMT, a recipient’s immune system becomes like that of a newborn baby. The immune system needs to develop and be cared for to keep toxicities from wreaking havoc on the body.

Dr. Chavan uses the metaphor of gardening to describe a BMT.

“It’s like taking a seed from a plant and then replanting it somewhere else,” he says. “Think about the cancer cells as weeds in your garden. Before the transplant, through a combination of chemotherapy and radiation, you are not only able to get rid of the weeds, but you are also preparing the soil. Then you plant the new seed.”

Keeping a positive attitude throughout treatment

 A common complication following a BMT is Graft-versus-host-disease (GVHD), in which the recipient’s new immune system, which is actually the donor’s immune system, may attack the recipient’s body. Symptoms include rash, mouth ulcers, abdominal pain, vomiting and diarrhea. Steroids and other immunosuppressive medications are used to treat the condition while preventing infections.

Israel had a moderate case of GVHD but bounced right back.

His lowest point, he said, happened when he returned home from CHOC just before the COVID-19 pandemic took hold in mid-March. The emotional toll of his journey finally sunk in, and it took time to adjust to a new normal.

“But I got through it and I feel amazing now,” he says. “I put myself to God, and He got me through it.”

Israel near the ocean

Israel credits his close family — Genesis, his father Juan, his mother Marcia and older brother Joshua — and his team at CHOC for helping him get through his medical crisis.

“They have some of the most amazing people there,” Israel said of CHOC. “They made me feel like I was at home. They’re great people.”

CHOC staffers noted how polite Israel was throughout his treatment and BMT recovery.

Monika Benson, a registered nurse, was Israel’s post-transplant case coordinator.

“He’s an incredible young man,” Benson says. “His outlook during this has been amazing. He’s one of the sweetest kids I’ve met. A lot of bone marrow transplant patients get beat down. He had his down moments, but he remained positive through it all.”

Benson noted that BMT patients go through a lot of social isolation. Most can’t even leave their hospital room for 10 to 20 days post-transplant while their new immune system is at its most vulnerable level.

“Going into the procedure positive and coming out of the transplant positive can make a big difference,” Benson says.

Israel says with his positive attitude, he was simply demonstrating lessons he’s been taught since day one.

“My whole life, I’ve always been taught manners and to respect my elders. I must respect others so I can be respected,” Israel says. “And I’m a very positive and energetic person. I’m always moving with a smile on my face every day.”

Israel with a CHOC nurse
Israel with one of his CHOC nurses Alex, in a photo taken before the COVID-19 pandemic

The importance of wearing a mask

 Living through a pandemic – while recovering from cancer treatment and a BMT – has its challenges, but one thing Israel was already used to doing even before COVID-19 hit was wearing a mask.

He recalls one day earlier this year, when he was watching his teammates practice amid his chemotherapy treatment leading up to his transplant. He didn’t wear a face covering that day and got so sick he had to be hospitalized.

“I believe masks are a big help,” he says.

Masks have always been a common recommendation and practice for post-BMT patients at least in initial days post-transplant.

Looking ahead

Before he was diagnosed, Israel was looking forward to playing football in college or possibly joining the military.

Now, he wants to become a nurse.

“A lot of nurses helped me get through this,” he says. “I want to return the favor and help kids that are going through the same thing that I went through.”

Superhero Austin fights cancer

When you arrive to the hematology and oncology unit at CHOC Hospital, theres someone you wont miss  and if you do, hell 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 at CHOC Children's
Austin at CHOC

 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. 

Austins 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 KristenIt was the most afraid Ive ever been in my life.” 

Due to Austins 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 to undergo a transplant. 

Knowledge is constantly evolving, and with it our treatment strategy  giving patients like Austin an improved prognosis, says Dr. Frediani. 

Austins 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 CHOCs 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.” 

Austin at CHOC Children’s
Austin at CHOC

As much as CHOCs staff has made an imprint on Austins 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, Austins chemotherapy treatment has gone well, and he was recently able to return homeGoing forward, hell 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 were 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.