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Childhood Cancer

Anderson’s Change of Plans

At the age of ten, Anderson had already chosen his career path. After a brief stint in the minor leagues, he planned on playing major league baseball – preferably for the Braves. He was working hard toward his goal, but after a batting session in 2013, Anderson complained of chest pain. As the pain persisted, his parents took him to the emergency room, where they thought it was likely a pulled muscle.

A few days later, he began to feel sick to his stomach. So they went to the emergency room, where a blood test revealed that Anderson had leukemia. He immediately started the standard treatment, which was scheduled to last three years.

“Anderson always took longer than average to rebound from the chemo,” said his mother, Sally. “In fact, early in his treatment, his count stayed very low, and he got a severe infection called typhlitis.”

Typhlitis is an infection of the intestine, and in Anderson’s case, it caused him all kinds of trouble. He needed emergency surgery, and his body struggled to fight off sepsis in the area. After they got that situation under control, Anderson wasn’t able to walk because the infection had moved to his upper leg.

“He was such an avid baseball player that it was awful thinking that he might never be able to play again,” Sally recalled. “It took six months for him to be able to walk on his own, and he still has a little hitch in his gait.”

While he was learning to walk again, a music therapist put a guitar in his hands. That moment changed the trajectory of his life. Anderson loved playing that guitar, and he developed a love for music that became a guiding force in his life. But his battle with cancer wasn’t over. His medical team ended his treatment early because of his dangerous sensitivity to chemotherapy.

Unfortunately, Anderson relapsed 15 months later. His doctors decided on a 2-year treatment that was slightly less toxic. He tolerated it well, but ten months after completing it, he relapsed again.

“We were shocked when they said it was back,” Sally said. “Anderson had no symptoms. He was just getting routine labs.”

In 2020, Anderson began treatment for the third time just as the pandemic swept across the world. When he reached remission, his doctors decided to start (CAR) T-cell therapy. This new form of treatment uses the patient’s own immune cells to fight cancer by changing them in the lab so they can find and destroy cancer cells. It worked perfectly for Anderson. He has been in remission since.

“We are very blessed that the T-cell therapy was available for Anderson this time,” Sally shared. “Our children deserve the very best treatments, and the only way we will get there is by funding research.”

That was a year ago. Since that time, Anderson has taken up golf, graduated high school, and focused on his love of music. In fact, he will begin his studies at Belmont University this fall, where he will study to be an audio engineer. No longer focused on baseball, Anderson plans to work in the music business – all because of a guitar handed to him during treatment.

Part of our Family

Hotel Equities is a hospitality management firm that manages several hotels in Georgia. The company is a faith-based organization whose core values center around twelve statements espousing kindness, integrity, and professional conduct. Hotel Equities believes in supporting local charitable organizations and years ago became a sponsor of Lauren’s Run and CURE Childhood Cancer Annual Picnic.

This relationship grew as CURE realized the need to start a lodging program that could provide hotel stays for families who must travel long distances for treatment. Hotel Equities quickly agreed to support this endeavor and introduced CURE to the management of the Residence Inn, which is situated near Children’s Healthcare of Atlanta. This program became increasingly important during the pandemic as long-term stay facilities were forced to close.

Susan Zuppardo, Calvin Easter, and Rosa Ventura

“Because of our location, we are typically full,” said Susan Zuppardo, Regional Director of Sales for Hotel Equities. “But we always make room for a CURE family. And when a cancer patient stays for an extended period, the staff gets excited about the opportunity to give them a safe haven during a difficult time!”

While the hotel staff is committed to treating every guest like family, two little girls stand out. Raegan and Charli both suffered from the same rare brain cancer, and their families traveled to Atlanta for long-term treatment.

“These two girls and their families were amazing,” Susan said. “Even though their children were very sick, they always smiled and talked to everyone. Charli liked to have her car decorated, so we went and got special markers so we could draw on her windows.”

Raegan

Raegan and her family stayed at the Residence Inn for 12 weeks while she endured very difficult treatment. The entire staff worked hard to make the hotel a home away from home for them. Calvin, the hotel’s Chief Engineer, took ownership of being their personal shuttle service to and from treatment. There were days when he worked late, staying until he got the call to pick them up. Rosa, the property’s Executive Housekeeper, understood the anxiety of a cancer patient during COVID-19. So she always made sure everything was extra clean in their rooms. The love and care the family received at the hotel spread out even further.

“I followed their story on Facebook and talked about them to my family all the time,” Susan said. “When my sister in Connecticut heard Raegan loved unicorns, she ordered a special book for her. My mother came to visit and was heartbroken because Raegan wasn’t able to bring very many toys from home. So she went out and bought a kitchen playset for her to play with during her three-month stay.”

Both girls eventually succumbed to their disease, but the friendships built during their stays have endured.

“I’ve kept the pictures they drew me and get choked up sometimes when I look at them,”

said Susan. “They became a part of our family.” The sentiment goes both ways. Raegan’s parents, Marc and Andrea, said, “Susan and crew made the Residence Inn feel like home. What stood out was that they were genuine – no fake smiles or forced ‘How is Raegan doing?’ questions. They were genuinely concerned. They went above and beyond for us because that’s the kind of people they are. We are better people for knowing them.”

We are honored to be partners in philanthropy with such a generous company. Hotel Equities has become a very important part of how we ease the burdens of families fighting cancer.

Lily’s Long Weekend

A long weekend usually involves rest and celebration. But last Labor Day was the longest of long weekends for Lily Suddeth and her family. Lily had just started preschool weeks before, and her teachers noticed that she was quiet and didn’t like to be put down – especially after nap time. Her parents thought she simply might be adjusting to her new routine and surroundings. But when she started waking up during the night, they decided to take her to the doctor.

“At first, our pediatrician suggested she might be teething,” recalled Lily’s mother, Allison. “But her coloring was off and a blood draw showed she was severely anemic. So they sent us to the hospital for further testing.”

Because of her doctor’s sense of urgency, Lily’s parents suspected she might have COVID. But as the long weekend progressed and more tests were ordered, it became apparent that they were dealing with something else entirely. On Tuesday, Lily was diagnosed with acute lymphoblastic leukemia (ALL) and began her treatment.

“The situation was difficult because only one parent was able to be with the child in the hospital,” said Allison. “Since it was the height of the pandemic, we certainly understood the need for such rules. But my husband and I process information very differently, and it would have been helpful if both of us could have been there to support each other and ask questions.”

While they certainly had questions, this was not the first time the Suddeth family had dealt with cancer. Allison’s older brother, Daniel, was diagnosed with the same form of leukemia when he was two years old. She also has a cousin whose son recently finished his leukemia treatment and is a healthy seven-year-old. Both her mother and her cousin became invaluable resources for her in the early phase of treatment.

“I wasn’t born when Daniel was diagnosed, so I didn’t know all that went into his fight with cancer,” Allison said. “The treatment for ALL has changed since then. So it was great to have a cousin who had just been through it. Knowing both of them had survived gave us a great sense of hope and assurance that we could trust in God’s plan for Lily’s life.”

Lily reached remission after the first month of treatment, and her parents decided to enroll her in a clinical trial of a drug called Blinatumomab. This drug is usually given to patients if their cancer comes back after treatment. Studies have shown that receiving it during treatment can increase a patient’s initial survivability and prevent relapse. It proved difficult to administer to a patient so young, however.

“The medicine is typically held in a backpack and given 24 hours a day for 28 days,” Allison shared. “But Lily was too small for the backpack so she had to have a pack with a long cord. She got used to it in no time and actually came to like having mommy or daddy following her around all the time.”

Lily is doing great now. She spends most of her time trying to keep up with her older brother and sister and loves to play outside, ride her scooter, and swing. She should reach the less intensive stage of treatment before the fall so when Labor Day rolls around this year, Lily and her family can relax and enjoy the long weekend together.

 

Protecting your Health: Immunizations in Cancer Survivors

By Karen Effinger, MD, MS | Children’s Healthcare of Atlanta

 

Vaccines have become a hot topic with the introduction of the new COVID-19 immunizations. News cycles are filled with information about vaccination rates and the hope these vaccines promise. However, for many people, along with hope comes fear. While the COVID-19 vaccines are new, questions about immunizations are not. Survivors and their families often have questions during and after cancer therapy. It’s always important to talk to your oncologist or pediatrician if you have questions about vaccines.

Vaccines are generally safe. However, people with a weakened immune system can get sick from live virus vaccines. Guidelines say to avoid live virus vaccines during cancer therapy and for at least three months after chemotherapy and two years after a bone marrow transplant (BMT). If patients remain on immune suppression due to graft-versus-host disease or after a solid organ transplant, they typically are not given live vaccines.

Other non-live vaccines are safe, even for patients receiving cancer therapy. However, the immune system may not react the same and give lifelong protection if people are receiving cancer therapy. For this reason, we typically do not give vaccines to patients receiving cancer therapy except for the flu vaccine. Because cancer patients can become very sick from the flu and may respond to the vaccine, we recommend the flu vaccine every year even during treatment.

It is important for cancer survivors to catch-up on missed vaccines after they complete their therapy. Survivors should ask their oncologists when it is safe to restart immunizations (usually 3-6 months after chemotherapy.) For survivors who underwent a BMT, immunity from prior vaccines is typically lost. Therefore, vaccines need to be repeated. The BMT team gives families instructions about when it is safe to start this process based on national guidelines.

The approved COVID-19 vaccines have been found to be safe in adults and have been recommended by the American Society of Clinical Oncology. There is no preference for specific vaccines. However, survivors with an allergy to PEG-asparaginase should not receive the Pfizer or Moderna vaccines due to concerns for allergic reactions. The Johnson & Johnson vaccine does not contain PEG and should be safe. Patients should talk to their oncologist or pediatrician for more information.

While all vaccines are important, the HPV (human papillomavirus) vaccine is one of the few vaccines that prevents cancer. HPV is a virus associated cervical, anal, and oropharyngeal (mouth/throat) cancers and genital warts. Most people will be exposed to HPV at some point in their lives; however, many people will clear the virus without developing cancer. Recent studies have shown that childhood cancer survivors are at increased risk for developing cancer from HPV compared to those who did not have childhood cancer. For this reason, we strongly recommend that survivors receive this vaccine, and the Children’s Oncology Group includes HPV vaccination in their guidelines for survivorship care. Vaccination can start as early as nine years of age and is recommended through 26 years of age. If survivors have questions about any vaccinations, they should talk to their primary care provider or oncologist.

 

Karen Effinger, MD, MS

Dr. Effinger specializes in pediatric oncology survivorship, and in the late effects of childhood cancer and stem cell transplantation.

Madison Has a Purpose

Her voice is soulful, powerful, and angelic. When you hear Madison sing, you would never believe a voice like that could come out of a petite 21-year-old. You would also be surprised to know that five years ago, doctors found a tumor the size of a golf ball on her brain.

Her cancer fight started with a headache that came and went for three weeks. At the time, Madison was balancing life as a high school cheerleader and member of the golf team while maintaining a very high grade point average. She and her mother, Jennifer, were walking into a store when Madison stumbled and complained of a horrible headache.

“I asked if her headache was back,” Jennifer said. “She told me it had never completely gone away. I didn’t think much of it until she got sick the next morning.”

As a doctor of physical therapy, Jennifer knows more about the body than the average parent. The symptoms together had her worried, so she took Madison to the emergency room.

“I didn’t tell her because I didn’t want her to panic, but I felt like a brain tumor was a possibility and wanted to have them rule it out,” Jennifer recalled. “As we drove, her right arm started to go numb, and when we got there, her right leg became unusable.”

The emergency room staff rushed her to get a CT scan, and the doctor brought the news almost immediately. Madison had a tumor called anaplastic ependymoma on the left side of her brain. She was immediately flown by helicopter from Braselton to Children’s Healthcare of Atlanta. Because this type of tumor grows rapidly, Madison had surgery to remove it three days later.

An analysis of the tumor found it to be grade 3, meaning it is malignant and carries a 30% chance of recurrence. After healing from surgery, Madison had proton radiation for eight weeks. She will have to have regular MRIs of her brain and spinal cord for the rest of her life, but fortunately, her scans have been clear for five years.

“Madison has both physical and emotional scars,” Jennifer said. “Her treatment left her with PTSD, trauma, anxiety, and hallucinations caused by medication. Because of this, she wasn’t able to sleep alone until she got an emotional support dog named Toby. But our family believes we go through experiences such as this for a purpose, and Madison is finding hers.”

In fact, Madison founded a nonprofit called Purpose. Her goal is to comfort children in treatment by sending them a nightlight, a note of encouragement, and a stuffed dog that looks like her labradoodle. She is also finding purpose in her budding music career.

Madison has written 13 songs, including one entitled Superman, which is about being diagnosed with a brain tumor. While she sometimes finds this song disturbing to play because it brings back the trauma of her experience, she does want to tell her story to raise awareness and funds to help kids going through treatment.

“I won’t say God gave me cancer for a reason,” Madison said. “But I will say God brought me through cancer being mostly whole in a way that many children aren’t. I have a purpose.”

Madison is uniquely talented, and the world is starting to take notice. You can listen to her sing on Instagram. Big things are ahead for this amazing young lady.

Running with Hannah

As a soccer and tennis player, 14-year-old Hannah Hazen is athletic and used to pushing her body on the playing field. When she started complaining about breathing difficulties, her parents assumed it was due to typical exertion. But when she experienced the same issue on a day she didn’t play a sport, they became concerned.

“We went to our pediatrician and then to the hospital for an x-ray,” Hannah’s father, Brian, said. “We thought we would hear something in a day or two, but the hospital called two hours later and told us to pack a bag and come back.”

The x-ray revealed a mass in Hannah’s chest near her trachea. She was admitted to the Pediatric Intensive Care Unit because the doctors worried the tumor might shift and cut off her airway. After a biopsy she was moved to the pediatric oncology floor where Hannah was diagnosed with Hodgkin’s lymphoma.

“In those first 48 hours as Hannah was being diagnosed, we were overwhelmed and exhausted,” Brian said. “Then late one evening, the nurse walked in with a delicious dinner provided by CURE. While it sounds so simple, it was one less thing for us to worry about and allowed us to remain by Hannah’s side.”

The standard treatment for Hodgkin’s lymphoma is decades old. But research is finally starting to reach the bedside, and Hannah’s oncologist, Dr. Bergsagel, recommended she enroll in a clinical trial to add a new drug called brentuximab vedotin to her treatment. This immunotherapy drug has been used to treat adults for years and has only recently been available to children.

“The treatment will last for six months instead of four,” said Brian. “But the new drug reduces the toxicity of the chemo, so Hannah will have fewer long-term side effects. Even with the extra two months, it really made sense for us.”

Hannah is on round three of twelve and is doing great so far. She has experienced relatively mild side effects such as bone and nerve pain. The whole family has adjusted to life in treatment and has felt fantastic support from their Dunwoody community. When the virtual Lauren’s Run and CURE Childhood Cancer Annual Picnic rolled around, their neighborhood really stepped up. They formed a team in honor of Hannah and started inviting people to join and give.  Ironically, Brian used to work for NCR, which was Lauren’s Run presenting sponsor several years ago.

“I had run the race two or three times in the past,” Brian said. “I knew it was for a good cause back then, but I never knew the whole of it until cancer hit home.”

Friends originally set a goal for Team Hannah of $2500. But people gave enthusiastically and generously, and by race day, Team Hannah had raised more than $13,000! On May 2, the day of the virtual Lauren’s Run and CURE Picnic, about 75 people gathered in the Hazen’s front yard to run and walk together on a 5k route that friends mapped out. Hannah hasn’t been able to play soccer or tennis, but she had a ball running the 5k with so many people cheering her on.

“Hannah’s a great all-around kid,” said Brian. “It is heartwarming and a little overwhelming to have all of these people come out and support our girl. Our community has been amazing.”

All told, more than 600 people participated in the virtual Lauren’s Run and CURE Picnic. Groups gathered all over Atlanta, as well as in Texas, Ohio, Colorado, and even South Africa. Most importantly, Lauren’s Run and the CURE Picnic raised more than $260,000 for childhood cancer research, so kids like Hannah can receive safe and effective treatments which will allow them to thrive!

Because of Joseph

Joseph Lee was known for being tenacious and funny. Even when circumstances in his life seemed to conspire against him, he always maintained hope, faith, and his sense of humor.

When he was twelve years old, a bump on his forearm caused Joseph’s parents to seek medical attention. Initially, his doctor thought it was a cyst of some kind. But his parents sought a second opinion which later revealed a diagnosis of rhabdomyosarcoma – a type of cancer that affects muscle tissue.

Initially, his doctors recommended surgery to amputate Joseph’s arm. But surgery, chemotherapy, and radiation worked to eliminate the tumor. Joseph celebrated clean scans for several years. He also celebrated life in special ways.

“Joseph was my only sibling, and we were very close,” said his sister, Rachel. “During his cancer journey, he taught me to be grateful for life’s little things. He had such a kind spirit and loved to encourage others because of the unique perspective cancer gave him.”

Joseph inspired others with his motto, “keep fighting… and living – as normally as you possibly can.” After treatment ended, Joseph demonstrated his tenacity on the football field as a running back. He worked hard to graduate high school and was accepted into the University of Georgia. But cancer had other plans. Joseph’s cancer returned and spread to the lymph nodes of his left arm.

After he beat cancer again, Joseph went on to study criminology at UGA, walk on the football team, and later work in the Cobb County Police Department. In 2018, he was working as a government contractor in Kuwait when his cancer came back again and forced him to return home.

“He declined rapidly when he got home,” Rachel recalled. “One day he was having trouble speaking but called my name clearly as I was leaving his room. When I turned around, he held up praying hands and bowed his head as a gesture of thanks. That made me feel a special peace, and I knew he felt peaceful, too.”

Joseph Lee passed away on May 9, 2018, at the age of 29. His family has been involved with CURE in many ways over the years, but Rachel went a step further in 2020 by joining the Young Professional Leadership Council. The YPLC is a group of dynamic and emerging leaders in the Atlanta community with a passion for and commitment to advancing CURE’s mission. Rachel hopes to combine her experience as a Digital Transformation Privacy Program Manager at Chick-fil-A and her passion for fighting childhood cancer to help provide better options to children with cancer.

“I am impressed with the work CURE has done to achieve better treatments for kids,” she said. “But there is a long way to go, and I hope together we can raise money for research that will make a difference.”

To further that effort, the YPLC is hosting the 5th annual Spring Fever on June 12 at Guardian Works at Echo Street West. This event will feature live music, delicious food, unforgettable cocktails, and an incredible silent auction. In the past four years, Spring Fever has raised $400,000 to assist families in their battle with pediatric cancer as well as support critical research. You can learn more about Spring Fever by clicking the image below or visiting curespringfever.org.

Raegan’s Playground

Raegan lived life on her own terms. She was sweet and spunky and loved unicorns. Her parents never knew how much of a fighter she was until she had to be.

She was thriving in kindergarten when she began suffering from minor illnesses that wouldn’t go away. After shuffling back and forth to appointments and different kinds of testing, Raegan was finally diagnosed with a pediatric brain tumor called DIPG.

“To say your life can change in the blink of an eye, four letters, DIPG, completely devastated our family,” recalled Raegan’s father, Marc. “We had never heard of this disease, and what we learned broke our hearts.”

Marc and his wife, Andrea, would soon learn that DIPG is a rare brain cancer for which there is no known cure. As if that wasn’t bad enough, Raegan had the worst possible genetic mutation and was given a prognosis of 6-9 months. Both Marc and Andrea work in the medical field and began scouring the internet for information and potential clinical trials.

“We shut down everything,” said Marc. “Our entire focus became about saving Raegan’s life.”

They found three clinical trials at St. Jude’s in Memphis, but by the time they arrived, two of them had closed and the third had little information available. So they packed up and came to Children’s Healthcare of Atlanta, where there were open trials that looked promising. There they met CURE.

“When we first got admitted to the Aflac Cancer Center, we were given one of the CURE tote bags,” said Andrea. “We were going through so much right then that I was very touched to feel like someone was thinking of us.”

At the same time they were facing this monumental battle, friends and fire departments around the country began to “Rally for Raegan” by posting pictures of support and contributing to a fund meant to help with Raegan’s medical expenses.

The first clinical trial worked well for seven months. But in January 2020, Raegan began to show symptoms of progression. When they came back to Atlanta for radiation, the COVID-19 pandemic hit, and the family was forced to stay in a hotel for twelve weeks. During this time, Raegan started a new clinical trial funded by CURE. She continued this treatment for five months until her tumor again showed progression.

“This all showed us how much of a fighter Raegan was,” said Marc. “She had already lived way beyond her diagnosis, and her doctor said, ‘I can tell you what we expect, but this is Raegan we’re talking about.’”

Sweet Raegan passed away at home during a tropical storm on November 8, 2020. She outlived her original diagnosis by nearly a year. And, oh how she lived.

“Raegan never stopped smiling and laughing,” said Marc. “She turned everything into her playground. The trials we went through weren’t failures because they bought us time to be with her, and every moment was precious.”

Marc and Andrea returned to Atlanta recently to pay it forward for the support they received during Raegan’s treatment.

They wanted to pay it forward to the organizations that cared for them during Raegan’s treatment. So they split the remaining funds between CURE, the Aflac Cancer and Blood Disorders Center at Children’s Healthcare of Atlanta, and the Winship Cancer Institute where she received radiation. Despite losing Raegan, they are dedicated to advancing research that will lead to cures for children with cancer.

After their experience, Andrea shared advice for parents of newly diagnosed children.

“When your child is diagnosed, it knocks the air out of you,” she said. “Once you catch your breath, start doing your own research. There may be other options out there and new treatments on the horizon. I have no regrets. The trials gave us 18 good months, much of which we wouldn’t have had. Keep fighting every day.”

Keeping up with Zoe

Last year, Courtney Thomas sat snuggling her two-year-old daughter, Zoe, in her lap. As she rubbed Zoe’s neck, she felt an odd swelling. As a pediatric nurse, she knew something was wrong.

“My radar was already up because she was fatigued and had been fighting an ear infection,” Courtney said. “A few days later, my husband noticed tiny bruises on her collar bone. We took her to her pediatrician the next day.”

Bloodwork confirmed what Courtney had begun to fear. Zoe had leukemia. Ironically, Zoe became a patient in the very hospital where Courtney works as a nurse. Her initial hospital stay lasted 19 days. While they were inpatient, the COVID-19 pandemic began to rage.

“Her whole treatment has been during the pandemic, and it adds a layer of worry,” said Courtney. “During one of her hospital stays, I was seven months pregnant. At the time, only one parent could stay with her. It’s tough to be that pregnant and alone while trying to entertain and care for a sick toddler. Being away from home so much has been difficult for her and her older brother, Arlen.”

Courtney has since delivered a healthy little boy, and Zoe is thrilled to be a big sister. Zoe is now in the maintenance portion of her treatment. She takes oral chemo pills nightly and goes in once a month for a chemo infusion. But Zoe’s treatments often make her immunocompromised, and with COVID still around, life has yet to return to normal.

“We are incredibly thankful for friends delivering meals and helping us around the house,” said Courtney. “But the isolation has been hard. We miss being able to go to church and visit with friends, and sometimes we feel isolated or even forgotten.”

While the pandemic has caused Courtney and her husband, T.J., to feel alone at times, they met a new friend in the hospital who has made a big difference. Courtney said:

“CURE has been here for us from the very beginning. As soon as we were diagnosed, we were given a CURE tote which included basic toiletries, which was appreciated since we weren’t admitted until after 8 pm. We also realized very quickly what an enormous blessing the Open Arms meals are. Having food served to us took away a great deal of stress because it was one less thing to worry about.”

“CURE has also been a huge support for us out of the hospital as well. The Quiet Heroes event came right after we had gotten back home from the hospital and was such an uplifting and encouraging experience for us both. I began to realize that we are not alone – we are now a part of a huge tribe of people, parents who love their children fiercely and will all fight for these kids and support one another together.”

Lastly, we have been so thankful for the counseling services CURE offers. CURE found a counseling group that has experience helping families going through childhood cancer and covered the cost of our counseling sessions. We have been able to take advantage of these services to be sure we are processing and handling the stress and change well and openly communicating about how we are feeling and know that how we are feeling is okay!”

All of this support has meant so much to them that, even though Zoe is still in treatment, the Thomas family has sponsored Open Arms meals for families of hospitalized kids. And as for Zoe, she is feeling much better and is back to singing, dancing, and trying to keep up with Arlen. It’s been a year since her diagnosis, and her treatment will continue until June 2022. While that seems like a long time, the entire family has learned that mixed in with the tough days will be some really good days.

Getting Khairi Back on the Field

Khairi loves baseball. He doesn’t even mind the bumps and bruises that result from playing hard. But when he was four years old, something odd happened. He got hit in the eye with a ball, and his mother, Michella, expected swelling immediately. But it didn’t come. In fact, it was days before the shiner appeared, and it lasted for nearly a month.

Unbeknownst to Michella, the reason Khairi’s eye didn’t swell was because his platelet count was dangerously low. Soon after that incident, he began to lose weight and got several unexplained fevers. The second time Michella had to leave work to get him from school, she took him to the hospital for evaluation.

“The nurse took a blood sample,” Michella recalled. “Then she came back and took another. After a few hours and two more samples, I knew something was wrong.”

Michella’s family has a history of lupus, so she imagined this might be the cause. But when a team of six doctors, including an oncologist, came into the room, her world was shattered.

“They told me Khairi had leukemia,” she said quietly. “It’s a lot to hear that your baby has cancer when you’re all by yourself. I had to leave the room so I wouldn’t break down in front of my four-year-old.”

Soon Khairi was whisked away for blood transfusions to get his white blood cell count down, followed by surgery to place a port for chemotherapy. In a few days they learned that Khairi had acute myeloid leukemia (AML). His plan included seven rounds of intense chemo, with a break to recover in between each round. But it took Khairi’s body a long time to recover every time, and he rarely got to stay at home more than a few days.

Fortunately, Khairi was cancer-free after his final treatment and got to ring the bell at the hospital, a special tradition at the end of treatment. Michella had been forced to take a leave of absence from work, so they went home to rebuild their lives and get back to normal. But normal was short-lived. After a routine follow-up visit months later, Khairi’s doctor called them with the devastating news that the cancer was back.

“I was so angry,” Michella said. “I went back to work and thought we were finished. I never had one thought that this would come back and had let my guard down. When I got that call, I was lost.”

With just five days left in his first grade school year and a few baseball games left in the season, Michella let Khairi enjoy his school awards ceremony. Then she took him to the hospital where he began the process of a bone marrow transplant. The transplant went well, but Khairi reacted to the pain medication and was rushed to intensive care.  After he recovered and went home, he had some issues with graft versus host disease – a condition where the new bone marrow cells attack the recipient. But Khairi is strong and is pushing through it all.

“He’s finally doing pretty well,” Michella said. “Khairi has a long way to go, but we keep working through it all for each other.”

Khairi takes eighteen medications a day and is isolated because his immune system is so compromised. His transplant was a year ago, and he hopes to be back on the diamond playing baseball again soon. And with everything he’s been through, he will definitely be the strongest kid on the field.

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