Lacey Holsworth

from East Lansing, Mich
Favorite Color, yellow.
Best Friend, Adreian Payne


Died of Neuroblatsoma - 9th April 2014
Thank you for your smile Princess Lacey
“It was time for my lil princess to go home & feel no more pain, now she’s happy & she’s my angel watching over me.”......Adreian Payne
Page created by Bill Ross, England.
"Adreian is my brother. I just think of him and I smile."
May God bless Princess Lacey.

Remembering Lacey Holsworth: How 8-Year-Old with Cancer Captured America's Heart

from Bleacher Report

With a $1,500 Gucci purse draped over her shoulder, eight-year-old Lacey Holsworth pranced through Saks Fifth Avenue on Pradas with three-inch heels.

Her appearance on the Today show was 24 hours away, and Michigan State’s most famous fan was determined to look her best.

Like a star preparing for the Oscars, “Princess Lacey” had employees of the glamorous New York City department store scurrying to meet her every need as she modeled dresses that March afternoon. Eventually she purchased a pastel-colored outfit for her nationally televised interview about her friendship with Spartans senior Adreian Payne.

Lacey’s introduction to New York didn’t end there.

There was an elevator ride to the top of Rockefeller Tower that afternoon and a ravioli dinner at Da Nico in the Italian Village. A few hours later Lacey delivered food from Burger King to Payne’s room at the Grand Central Hyatt. When he finished his meal, Payne scooped up the girl he calls his “lil’ sis” and walked toward the door.

“C’mon, Lace,” he said. “Let’s go watch film.”

Minutes later, Lacey and her family listened from the back of a meeting room as Spartans coach Tom Izzo went over the scouting report for the next day’s NCAA tournament tilt with Connecticut.

The following morning, after her TV appearance, Lacey posed for pictures with Michigan State alum Magic Johnson at Madison Square Garden and scored a postgame hug from Payne—the cherry on top of a weekend she wished would never end.

“I love NYC!!!!!!!” Lacey wrote on Instagram, where a picture shows her raising her arms toward the sky on a busy Manhattan street, as if she owned the city.

The joy Lacey exuded in the Big Apple was similar to what Matt and Heather Holsworth had seen from their daughter earlier that month on Michigan State’s Senior Night, when she cradled a bouquet of roses as Payne carried her to midcourt.

She glowed again a week later in Indianapolis, where Payne and Lacey stood atop a ladder and snipped away the net at Bankers Life Fieldhouse, hoisting it high in the air as fans cheered and snapped photos after Michigan State won the Big Ten tournament.

Lacey’s parents had learned to embrace these moments during her two-year battle with neuroblastoma, an aggressive form of childhood cancer. They found peace and comfort in them, especially considering the question Lacey had posed to Heather only a few months earlier.

“Mommy,” she said, “am I going to die?”

Long prepared for the conversation, Heather hugged her daughter.

“Sweetheart,” she said, “no one knows when they’re going to die. Mommy doesn’t know when she’s going to die. Daddy doesn’t know. Nobody knows.”

But by 9 a.m. on March 31—less than 12 hours after returning from New York—the Holsworths did know Lacey’s fate.

An early-morning MRI performed at Sparrow Hospital in East Lansing revealed that radiation treatment hadn’t been effective in reducing the size of the tumor that was pushing against her brain. All options had been exhausted.

Lacey, doctors said, had less than a month to live.

“One day we’re watching her smile and cheer at a basketball game in New York,” Matt said, “and the next we’re being told she’s going to die.”

Matt and Heather didn’t tell Lacey about the prognosis. Instead they returned home determined to make her final few weeks as memorable as possible, whether that meant watching Disney movies, playing with dolls, baking pies and brownies or dancing to Taylor Swift in the living room.

A day later, the phone rang.

Even though Michigan State had lost to Connecticut in the Elite Eight, Payne had still been invited to the Final Four to participate in the slam dunk contest. Dejected that his season ended prematurely, Payne initially declined. But when organizers offered to fly Lacey and her family to Texas for the event, he reconsidered.

“Would Lacey be interested in going to Dallas?” Payne asked Matt over the phone.

The answer came quickly.
“Absolutely,” Matt said after consulting with his daughter. “Why not?”

He’s a future NBA millionaire who became one of the most recognizable college players in the country during his time at Michigan State.

Still, when Adreian Payne arrived in Dallas during Final Four week, all anyone asked about was Lacey.

Where’s Lacey?

Is Lacey still coming?

When is Lacey getting here?

Can we meet Lacey?

“By the end of our season,” Payne said, “she had turned into a celebrity.”

Media outlets in Michigan had touched briefly on Lacey’s story soon after Adreian befriended her during a team hospital visit two years ago. They exchanged phone numbers that day, and Adreian began leaving Lacey tickets to games, taking her to dinner and having her over to watch movies and play on his keyboard.

Two months ago, though, the tale went viral, with national sports websites, People magazine and Good Morning America all running in-depth pieces on Adreian and Lacey’s relationship.

Lacey had 1,490 Twitter followers at the beginning of February. Now she boasts more than 40,000.

“I had no idea it was going to be like this, no clue,” Payne said. “I was just doing what came natural. I tried to help someone and it went worldwide.”

In a single day last month, fundraisers at two Buffalo Wild Wings locations in East Lansing raised nearly $45,000 for the Holsworth family. Wearing an apron and carrying her own personalized notepad, Lacey served as a guest waitress, doing everything from taking orders to schmoozing with customers to flirting with the kitchen staff.

“Hi boys!” Lacey said as she approached the cooks near the deep fryer.

“Lacey has an aura about her that draws everyone in, especially guys,” Buffalo Wild Wings manager Abby Eiseler said. “They crumble at her feet.”

East Lansing native Jeffrey Martin, who didn’t even know Lacey, was so upset about missing the event that he set up a website that has generated more than $100,000 in donations to help with medical bills. Local firefighters passed around a helmet and filled it with cash, and Holt Junior High School students Preston Estrada and Devin Torrez raised $1,001 by selling #prayforlacey bracelets during their lunch hour. Torrez, 13, has Lacey’s picture on his cell phone’s screensaver.

“Everyone knows someone that’s been affected by cancer,” Izzo said. “But when you have an eight-year-old instead of a 78-year-old...the dynamic is so much different. It makes it more real, more powerful.”

Lacey’s upbeat attitude didn’t hurt either.

Even the most aggressive forms of radiation weren’t enough to dampen Lacey’s spirits. Instead of dwelling on her illness, she looked forward to and relished the experiences she had when she was healthy. It wasn’t uncommon for Lacey to attend a basketball game hours after a chemotherapy session.

When she was diagnosed with cancer two years ago, a massive tumor around her abdomen and spine paralyzed Lacey from the waist down. Months later, after the tumor was dissolved through radiation, hospital staff members teared up as Lacey galloped down the hallway and past the nurses station as her father gave chase with her IV pole.

“I think Lacey had a certain amount of discomfort that may have just seemed normal to her,” said Lauren Colvin, a registered nurse at Sparrow Children’s Center who treated Lacey for the past two years. “We had to take into special consideration the number she would report when we asked her to rate her pain, 0-10.

“For her, a 4 or 5 was worse than most people’s 9 and 10. She was one tough cookie.”

Never was it more challenging for Lacey to put on a positive face than in Dallas.

The night before they left Michigan, Lacey’s cancer caused her to lose the use of her right leg. But when Matt suggested canceling the flight, Lacey began to cry. She was adamant they still make the trip. Her father—and Adreian—would simply have to carry her everywhere.

Lacey spent a large chunk of the weekend either sleeping or groggy from pain medication. The bright lights at SMU’s Moody Coliseum—where the dunk contest was held—caused stinging in Lacey’s eyes, but she hardly complained as she posed for countless photos with contestants, their relatives, members of the event crew and fans.

“I think she began to sense the impact she was having on people,” Matt said. “She didn’t care about fame or camera time. She just enjoyed making people happy. She liked making people smile.”

Lacey certainly accomplished that in Dallas.

Payne found a way to work Lacey into his dunk routine, approaching her on the front row and asking her to kiss the basketball for good luck prior to his thunderous reverse slam. Before Payne’s next attempt, Lacey handed him a “Superman” shirt—that was her nickname for him—that undoubtedly helped him soar through the air for another flush.

He finished third in the contest, but no one received a louder ovation than Payne.


The following morning, on April 4, Payne and Lacey were scheduled to be celebrity judges in a high school dunk contest across town. As she primped her in hotel room at the Le Meridian Dallas by the Galleria, Lacey seemed sad.

She’d gained 10 pounds in just two weeks because of swelling, and there was a protrusion on the side of her forehead.

“I just want to be normal,” Lacey had told her mom a week earlier after having a seizure. But now the right side of her face was paralyzed, causing her spirits to drop even more as she posed in front of the mirror after applying lip gloss.

“My smile looks weird,” she told Heather, who was quick to remind her daughter of how beautiful she was and how everyone was in love with her smile.

“She didn’t like the way she looked at the end,” Heather said. “But that didn’t stop her from putting herself on national television and smiling and showing her love and support for Adreian.

“She flew across the country while she was dying of cancer just to be by him, just to sit in his lap.”

Lacey had that opportunity at the high school dunk contest, where Payne left the judging completely up to her. Lacey chose what score to give each contestant, making her feel like the most important person in the gym. At one point, without saying a word, Lacey wrapped her arms around Payne, put her head on his chest and closed her eyes.

"Out of the blue, she just started hugging me,” Payne said. “She didn’t let go. I have no idea why she did it or what caused it, but that’s a moment I’ll always remember. Lacey gave good hugs. She always squeezed real tight.”

When the contest was over, Lacey said goodbye to Payne and boarded a courtesy van with her parents and three brothers. During the drive back to the hotel she called Betsie Hundt, a 21-year-old college student whose mother, Linda, owns a pie shop near East Lansing called Sweetie-Licious that the Holsworths frequent.

Betsie, who battles depression, said Lacey came into her life at just the right time. She said she needed a reminder that her complaints and problems were petty compared to issues like the ones facing Lacey, who she views as a little sister.

Lacey and Betsie liked to play with dolls and have tea parties. They painted each other’s fingernails and read books and exchanged text messages. Betsie had all but decided to shave her head in support of Lacey last fall when she received a call from Heather.

“Lacey is crying,” she told Betsie. “She doesn’t want you to do that. She likes you the way you are. She wants you to keep your hair long and pretty.”

When Lacey had a seizure shortly before her trip to New York, it was Betsie—or “Biggie,” as she called her—that Lacey asked to see when she awoke after a 24-hour slumber.


“I just laid in bed with her for hours,” Betsie said. “I held her and tried to be calm and soothing. We whispered about ice cream and dolls and fairies. I was just so happy to have her wrapped around me like that.”

Betsie figured more of the same was in store when Lacey called her from Dallas that Friday afternoon, her voice filled with energy.

“Biggie!” Lacey said. “I can’t wait to come home and play babies!”

Before hanging up, Lacey and Betsie made plans to play with their dolls Sunday evening.

They never got the chance.

 ***

As much fun as she had in Dallas, it was obvious Lacey was eager to return to East Lansing as the family drove to the airport early Saturday morning.

“I’m ready to go home,” she said. “I want to be around all the people I love the most—and I want to be cozy.”

By the time the Holsworths landed in Michigan hours later, Lacey had taken a turn for the worse. She was requesting additional pain medication and had difficulty carrying on a conversation. It was clear she was approaching her final days.

Lacey's older brother, Mitchell, was so scared his sister would miss his 13th birthday party the following month that the family decided to hold the celebration that night at the kids' grandparents’ house.

Even though she was groggy from morphine, Lacey perked up for a few hours, chatting with relatives about her trip and playing with her 11-year-old cousin, Ellie, who doubled as her best friend.

“It was almost like she was saying her goodbyes,” Heather said. “She was never really coherent after that.”

Lacey was able to talk Sunday, but she rarely opened her eyes. Hospice arrived on Monday as a handful of the family’s closest friends stopped by the house to see Lacey one final time.

Betsie brought Lacey a Barbie doll and a DVD, telling her they’d watch it when she got better. Lacey attempted to smile and then whispered the word “pictures.”

“She’d drawn pictures for my older sister and I when she was in Dallas and wanted to make sure we got them,” Betsie said. “Up until the very end, she was focused on making people happy.”

Betsie’s mother, Linda, also paid a visit. She’d met Lacey at her pie shop one year earlier, when Lacey told her she intended to work there. Linda hugged Lacey that day and nearly came to tears when she realized she was wearing a wig, an indication she had cancer.

Linda began hosting baking sessions with Lacey and Heather at her home—and also at Sweetie-Licious, where lines stretched out the door whenever Lacey was behind the counter in her pink-checkered apron.

Tasty as it was, customers weren’t showing up on “Lacey Day” for the princess’ peach-raspberry pie. They simply wanted a glimpse of her smile.

“You just felt better about yourself after you met her,” Linda said. “I went to her house that night and squeezed her hand and told her we were all going to live like her and love like her. She squeezed back and moved a little bit. They said she could hear me.

“Her face was so beautiful, so peaceful. She wasn’t frowning. She wasn’t scared. That used to worry me so much, that she’d be scared.”

One person who didn’t come by was Adreian.

Matt contacted him after he returned from Dallas and informed him that Lacey only had a day or so to live. He had been to the Holsworth home numerous times before. He’d seen the “A.P. Wall” in Lacey’s bedroom that was covered with his pictures, newspaper articles, photos and jerseys. He’d baked brownies with Lacey in the kitchen, colored with her in the living room at Christmas and watched the Disney movie Frozen with her on the couch.

“I’d wanted to see it for a long time,” he chuckled, “and she was the only one who would watch it with me.”

Each time Adreian left, Lacey stood on the porch and waved until he couldn’t see her anymore in his rearview mirror. That's how he wanted to remember Lacey. He didn’t want the image of her slipping away on the couch.

Adreian was 13 when his mother died of an asthma attack as he cradled her in his arms.

“That’s the last thing I remember about my mom, the last picture I have in my head,” he said. “My last picture of Lacey is of her in Dallas at that dunk contest. She had fun that day and I had fun that day. We both smiled a lot. That’s the ultimate thing.”

"When I think of him, I just smile. I love him."   ............Lacey

Shortly before 11 p.m. on Tuesday—after their three sons had said their final goodbyes—Matt and Heather Holsworth knelt by the side of their daughter, who was resting in a cot at the foot of their bed. Hours had passed since Lacey had been able to communicate, and they didn’t want her to fight anymore.

They clutched Lacey’s hands.

“You can relax, Lay-Lay,” Heather whispered. “Think about laying on a beach in the warm sun.

“Everything is OK. Just dance into the light.”

Matt told his daughter he loved her, and Lacey’s lips began to quiver. She was attempting to speak, but the words never came.

“I know,” Matt said. “I know you love us too.”

Lacey nodded her head.

Seconds later, she was gone.

“It was a blessing,” Heather said. “We literally held her hands through the gates of heaven.”

Tiaras, coloring books and stickers had been arriving weekly from all over the country, but when Matt and Heather checked Lacey’s P.O. box a few days after her death, it was a pair of letters that stood out the most.

The first was from a man who has multiple sclerosis. He wrote that he’d grown tired of fighting and had decided to end his own life. After seeing Lacey on Good Morning America, however, he suddenly felt inspired and motivated to continue his battle.

The next came from a single mother who was struggling emotionally and financially. She, too, was having suicidal thoughts when she came across Lacey’s tale. Lacey’s smile and energy altered her outlook, she wrote, and now she refused to give up.

The Holsworths have received e-mails from Spain, Israel, China, Australia and the Philippines in the last two weeks, and donations continue to flow. Hours after her death, ESPN college basketball analyst Dick Vitale phoned Matt and vowed to raise $250,000 for a cancer research grant in Lacey’s name.

Sitting on a park bench with Heather last week while their sons played on a nearby basketball court, Matt said it “warms his heart” when he thinks about the impact Lacey had on both friends and strangers.

“She’s the strongest person I’ll ever know,” he said.

Heather agreed.

“Lacey’s life mattered,” she said, “and it will continue to matter. Her legacy will live on. We promised her that before she died.”

Hundreds of Michigan State fans honored Lacey the day after she passed by scribbling messages to her on “The Rock,” a massive boulder on campus that has served as a makeshift billboard for students for decades. Izzo and Payne gave impromptu speeches at a vigil there that night.

A week later more than 2,500 supporters flocked to the Breslin Center—the basketball arena where Lacey became a fixture in the stands—to pay their respects during a “Celebration of Life.”

Little girls in tiaras were peppered throughout the stands along with college students in Spartans garb and adults in pastel shirts and dresses. Lacey’s family asked attendees to wear bright, happy colors.

Michigan State's players and coaches were on hand along with doctors and nurses from Sparrow Hospital. Linda Hundt passed out “Lacey Cakes”—a chocolate brownie with powdered sugar and pink icing, Lacey’s favorite—to nearly everyone in the building.

“Lacey wasn’t a kid actor pretending to be someone,” Linda said. “She was a real little girl that we all knew, a girl next door who believed in magic and Santa and everything that was good in the world.

“Everyone is hurt. How could this little girl die? Children and death don’t go together. Yet she amazed us all by continuing to smile. It was beautiful. I’m not surprised she touched so many people.”

Lacey’s service included an audio message from Heather, who called her daughter “a tomboy in a tutu” and talked about her love of rap music (2 Chainz, in particular) and dancing.

The most moving portion of the ceremony was a 32-minute video commemorating Lacey’s life. In one clip Lacey clapped and jumped for joy when her parents surprised their children with tickets to Michigan State’s season-opener. The mood changed moments later when photos were shown of Lacey after undergoing painful radiation treatment that left her face red and splotchy.

“The video didn’t even begin to touch on some of the horrors she endured,” Heather said the following day. “But she absorbed all of it. She just kept giving and giving and giving until she didn’t have anything left.”

Tears flowed throughout the arena when footage played of Lacey making brownies for the Michigan State basketball team. Heather, who was holding the camera, approached Lacey as she stirred the batter and asked her to reveal her secret ingredient.

“Love,” she said. “But I don’t put that in until the very end.”

That way, Lacey explained, each player would get an equal piece of her heart.

“She would literally blow kisses at the brownies before she put them in the oven,” Heather said the next day. “It was her way of blessing them to ensure that each player received some love.

“Especially A.P.”

Neuroblastoma in children-         from CCLG

Fewer than 100 children in the UK are diagnosed each year with neuroblastoma. Most children who get this cancer are younger than five years old. Neuroblastoma is the second most common solid tumour in childhood, and it makes up 8% of the total number of children's cancers.

Neuroblastoma 

Neuroblastoma is a cancer of specialised nerve cells called neural crest cells. These cells are involved in the development of the nervous system and other tissues.

Neuroblastoma most commonly occurs in:

  • either one of the two adrenal glands situated in the abdomen (tummy)
  • nerve tissue that runs alongside the spinal cord, in the neck, chest, abdomen
    or pelvis.

The adrenal glands are specialised glands that are found above both kidneys. They normally release hormones to maintain blood pressure and help the body respond to stress.

In some cases, neuroblastoma can spread to tissues beyond the original site such as the bone marrow, bone, lymph nodes, liver and skin.

Causes of neuroblastoma 

As with most cancers, the cause of neuroblastoma is unknown. It's not infectious and can't be passed on to other people.

Signs and symptoms of neuroblastoma

The symptoms vary depending on where your child’s tumour is.  The first symptoms are vague, such as tiredness, loss of appetite and pain in the bones. More specific symptoms will depend on where the neuroblastoma starts:

  • If the tumour is in the abdomen, your child’s tummy may be swollen and they may complain of constipation or have difficulty passing urine.
  • If the tumour affects the chest area, your child may be breathless and have difficulty swallowing.
  • If the tumour occurs in the neck, it's often visible as a lump and occasionally affects breathing and swallowing.
  • Occasionally, there are deposits of neuroblastoma in the skin that appear as small, blue-coloured lumps.
  • If the tumour is pressing on the spinal cord, children may have weakness in the legs and walk unsteadily. If your child is not yet walking, you may notice reduced leg movements. They may also have constipation or difficulty passing urine.
  • Very rarely, children may have jerky eye and muscle movements, and general unsteadiness associated with the neuroblastoma.
  • Your child may also have high blood pressure.

How neuroblastoma is diagnosed

A variety of tests and investigations may be needed to diagnose neuroblastoma. These include a biopsy, blood and bone marrow tests, x-rays, CT or MRI scans, and special nuclear medicine scans called MIBG scans (see below). The tests are done to find out if your child definitely has neuroblastoma and what the exact position of the original tumour site is within the body. The tests will also find out whether the neuroblastoma has spread. This process is known as staging (see below).

VMA and HVA tests

A specific type of urine test will also be done. Nearly all children with neuroblastoma (9 out of 10) will have the substances vanillylmandelic acid (VMA) or homovanillic acid (HVA) in their urine. Measuring the VMA and HVA in the urine can help to confirm the diagnosis. Your child will also have their VMA and HVA levels checked during and after treatment. The levels of these substances will fall if the treatment is working. As these chemicals are produced by the tumour cells, and can be used to measure tumour activity, they are sometimes known as tumour markers.

MIBG scans

Most children will have an MIBG (metaiodobenzyl guanidine) scan. MIBG is a substance that's taken up by neuroblastoma cells. It's given by injection. Attaching a small amount of radioactive iodine to the MIBG enables the tumours to be seen by a radiation scanner. MIBG can also be used as a treatment.

Biopsy

A small sample of cells is usually taken from the tumour during an operation under a general anaesthetic. This is known as a biopsy. These cells are then examined under a microscope.

Other tests, collectively referred to as tumour biology, are also carried out on these
cells in the laboratory. These tests look at the chromosomes and 'biological markers' in the tumour cells. One of these 'markers' is called MYCN. The presence of a certain amount of MYCN in the cells (known as MYCN amplification) can suggest that the neuroblastoma may be a more aggressive type. In this situation, the treatment needs to be more intensive.

Staging of neuroblastoma 

The stage of a cancer is a term used to describe its size and whether it has spread beyond its original site. Knowing the particular type and stage of the cancer helps the doctors to decide on the best treatment for your child.

A commonly used staging system for neuroblastoma is described below.

Stage 1

The cancer is contained within one area of the body (localised) and there's no evidence of it having spread. It can be completely removed by surgery, or there may be very small (microscopic) amounts of tumour left after surgery.

Stage 2A

The cancer is localised and has not begun to spread, but it cannot be completely removed by surgery.

Stage 2B

The cancer is localised and has begun to spread into nearby lymph nodes.

Stage 3

The cancer has spread into surrounding organs and structures, but has not spread to distant areas of the body.

Stage 4

The cancer has spread to distant lymph nodes, bone, bone marrow, the liver, the skin or other organs.

Stage 4S (also called special neuroblastoma)

This is found in children under one year old. The cancer is localised (as in stage 1, 2A or 2B) but has begun to spread to the liver, skin or bone marrow.

A newer staging system has been developed by the International Neuroblastoma Risk Group (INRG). This system (described below) is beginning to be used more widely. It looks at whether or not certain 'image-defined risk factors' are present in a neuroblastoma tumour before treatment. These risk factors can be detected by scans and help doctors understand the extent of the disease. Your doctor can explain more about this.

Stage L1

The tumour is localised and has not spread into important areas (vital structures) nearby. It can be removed by surgery.

Stage L2

The tumour is localised but has 'image-defined risk factors' and can't be safely removed by surgery.

Stage M

The tumour has spread to other parts of the body.

Stage MS

The tumour has spread to the skin, liver and/or the bone marrow in children younger than 18 months old.

If the cancer has spread to distant parts of the body, this is known as secondary or metastatic cancer.

If the cancer comes back after initial treatment, this is known as recurrent or relapsed cancer.

Treatment for neuroblastoma 

The treatment of neuroblastoma depends on the age of the child, the size and position of the tumour, the tumour biology (including the MYCN status) and whether the neuroblastoma has spread.

Surgery

For tumours that have not spread (localised tumours), the treatment is usually surgery. If the tumour is at an early stage and there's no evidence that it has spread to the lymph nodes or any other parts of the body, an operation to remove the tumour, or as much of it as possible, will be done.

A cure is usually possible for children with localised tumours. However, if the tumour is classed as high-risk due to the tumour biology results, further treatment with chemotherapy and possibly radiotherapy will be needed. If the tumour is, at first, too large or in too difficult a position to remove safely, chemotherapy will be given to shrink it before surgery.

Chemotherapy

If the tumour has already spread by the time of diagnosis, or is indicated as being high-risk by the tumour biology result, intensive chemotherapy is needed. Chemotherapy is the use of anti-cancer (cytotoxic) drugs to destroy cancer cells. It's usually given as a drip  or injection into a vein. Your child's specialist will discuss with you the type and amount of chemotherapy needed.

High-dose chemotherapy with stem cell support

If the neuroblastoma has spread to several parts of the body, or is high-risk with MYCN amplification, high-dose chemotherapy with stem cell support is used after the initial courses of chemotherapy.

High doses of chemotherapy wipe out any remaining neuroblastoma cells, but they also wipe out the body's bone marrow, where blood cells are made. To prevent the problems this causes, stem cells (blood cells at their earliest stages of development) are collected from your child through a drip before the chemotherapy is given. These stem cells are then frozen and stored.

After the chemotherapy, the stem cells are given back to your child through a drip. They make their way into the bone marrow, where they grow and develop into mature blood cells over a period of 14-21 days.

Monoclonal antibody treatment

Monocolonal antibodies can destroy some types of cancer cells while causing little harm to normal cells. A new monoclonal antibody treatment called anti-GD2 is currently being tested in people with high-risk neuroblastoma. Children in the UK with high-risk neuroblastoma are being given anti-GD2 as part of a clinical trial. There is good evidence from a clinical trial carried out in America in 2009 that this may be a promising therapy when given alongside other standard treatment for neuroblastoma.

It is not yet a standard treatment for people with neuroblastoma because it has very unpleasant side effects. The benefits still need to be fully proven and the best way to administer it needs to be confirmed. Patients with high-risk neuroblastoma may be able to receive anti-GD2 in the UK if they are being treated within the European high-risk clinical trial. 

Your child's specialist will be able to tell you more about this treatment.

Radiotherapy

External radiotherapy may be given if the neuroblastoma is high-risk, or has spread to several parts of the body. This uses high-energy rays to destroy the cancer cells, while doing as little harm as possible to normal cells. External radiotherapy is given from a machine outside the body.

Internal radiotherapy may sometimes be given using radioactive MIBG. Radioactive MIBG is similar to the MIBG used in an investigation to diagnose a neuroblastoma (see above), but uses higher doses of radioactivity to kill the cancer cells.

Younger children

Children under 18 months old with neuroblastoma often have low-risk tumours, and as long as there is no MYCN amplification, their outlook is good. Most children in this age group are cured.

Children with stage 4S disease almost always get better with very little treatment or none at all. These tumours either regress spontaneously or after chemotherapy, which is only given if the tumour is causing symptoms. They disappear completely or develop into a non-cancerous (benign) tumour, called a ganglioneuroma. Many of these children, after their initial diagnostic tests and staging investigations, will just need careful monitoring for some years.

Ganglioneuromas are usually harmless and will not cause any problems or need any treatment.

Side effects of treatment for neuroblastoma 

Treatment often causes side effects, and your child’s doctor will discuss this with you before the treatment starts. Any possible side effects will depend on the actual treatment being given and the part of the body that is being treated. Side effects can include:

Late side effects 

A small number of children may develop late side effects, sometimes many years after treatment. These include a change in the way the heart and kidneys work, hearing problems, fertility problems, a possible reduction in bone growth if radiotherapy has been given, and a slightly increased risk of developing another cancer in later life.

Your child’s doctor or nurse will talk to you about any possible late side effects. There's more detailed information about these late side effects in the section on children’s cancers.

Clinical trials 

Many children have their treatment as part of a clinical research trial. Trials aim to improve our understanding of the best way to treat an illness, usually by comparing the standard treatment with a new or modified version. Specialist doctors organise many trials for children's cancers.

Children in the UK with neuroblastoma can take part in national and European studies. The European research group is called SIOPEN.

If appropriate, your child's medical team will talk to you about taking part in a clinical trial, and will answer any questions you have. Written information is provided to help explain things.

Taking part in a research trial is completely voluntary, and you'll be given plenty of time to decide if it's right for your child.

Follow-up 

Follow-up after treatment usually involves regular visits to the hospital outpatients department, with scans and urine tests as necessary. For children who have had chemotherapy and/or radiotherapy, more specialised tests may be carried out. For example, hearing tests, kidney and heart function tests, and checking hormone levels. These will be repeated until your child has grown up.

If you have specific concerns about your child’s condition and treatment, it's best to discuss them with your child’s doctor, who knows their situation in detail.

Your feelings 

Your teams of doctors and nurses are there to help support your child and family as well as carry out treatments. It is important to discuss any difficulties you may be having with your treatment team.

The section on children’s cancers talks about the emotional impact of caring for an unwell child and suggests sources of help and support. It also discusses the range of powerful emotions your child may experience throughout their illness, including how you can support your child.

Our booklet Katie’s Garden is a storybook for primary school-age children about a girl's experience of cancer.

Useful organisations 

Children's Cancer and Leukaemia Group (CCLG)

CCLG coordinates research and care for children and their parents. There are 21 CCLG specialist centres for the treatment of childhood cancer and leukaemia, covering all areas of the UK and Ireland (there's a map of the centres on the website). The website also has information about the CCLG, childhood cancer and leukaemia.

CLIC Sargent

CLIC Sargent offers practical support to children and young people with cancer or leukaemia, and to their families.

Neuroblastoma Society

The Neuroblastoma Society offers an opportunity for parents to give each other mutual help, support and comfort. It has an information booklet, which can be downloaded from its website.

Neuroblastoma Children's Cancer Alliance UK (The NCCA UK)

The Neuroblastoma Children’s Cancer Alliance UK (NCCA UK) helps families affected by the childhood cancer neuroblastoma. The NCCA UK’s supports access to the best treatment available internationally for children with neuroblastoma, as well as research, education and awareness initiatives.

References and thanks 

This information has been compiled using a number of reliable sources, including:

  • Voute PA, et al. Cancer in Children: Clinical Management. 5th edition. Oxford University Press. 2005.
  • Pinkerton R, et al. Evidence-based paediatric oncology. 2nd edition. Blackwell Publishing. 2007
  • Gilman, et al. A Phase 3 randomised trial of the chimeric anti-GD2 antibody ch14.18 with GM-CSF and IL2 as immunotherapy following dose-intensive chemotherapy for high-risk neuroblastoma: A Children's Oncology Group (COG) study ANBL0032. Journal Clinical Oncology. 2009. 27.15.
  • Matthey, et al. Long-Term Results for Children With High-Risk Neuroblastoma Treated on a Randomized Trial of Myeloablative Therapy Followed by 13-cis-Retinoic Acid: A Children's Oncology Group Study. Journal of Clinical Oncology. 2009. 27.7 1007-10013

With thanks to Dr Kate Wheeler, Consultant Paediatric Oncologist, and the people affected by cancer who reviewed this edition.

Reviewing information is just one way of the ways you could help when you join our Cancer Voices network.