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Council of State Governments Magazine “Capitol Ideas” features ACCO

Council of State Governments Magazine “Capitol Ideas” features ACCO

As a new partner member of the Council of State Governments, ACCO’s #WhyNotKids State Advocacy Initiative is highlighted in an article in Capitol Ideas detailing our leadership and solutions for overcoming the disparity between adult and #childhoodcancer research funding. Capitol Ideas is a magazine of CSG sharing ideas for model legislation and top priorities for states across the nation. Special thanks to CSG for featuring ACCO. Read the full magazine hereScreen Shot 2020-01-28 at 8.29.00 AM

 

Gold Ribbon Hero: Mady

Meet Mady, a courageous 13-year-old dancer with a love of fashion and makeup. ACCO first got in touch with Mady’s mom, Ashley in February of 2019 after Mady got to meet Randy Fenoli at Kleinfeld in New York City. We’ve been following Mady’s story ever since. 46520356_10204986397936700_5712957268534755328_o

This month Mady relapsed and this time it was evident in her spine. She is beginning cycles of radiation in early February in New York. 

Mady was first diagnosed with neuroblastoma at the age of 8 years old. According to Ashley, “Mady was playing softball and rounded a base. She hurt her ankle which caused pain throughout her body. I knew something was wrong but didn’t know the extent.” 

“It was the scariest day of our lives. The doctor sat us down and said her gut feeling was right – they had found a tumor on Mady’s left adrenal gland.” The doctor ended up doing more scans and discovered neuroblastoma. Mady was scared and confused and of course, Ashley was terrified of the outcome. FB_IMG_1577455932435

Treatment started shortly after with several rounds of chemo and radiation which made Mady extremely sick. She was devastated when she lost her hair but she kept fighting. Later, it was discovered that Mady’s body was resistant to the chemo so they quickly switched to two different immunotherapy treatment and two mibg radiation therapy treatments. Mady has had two ports placed, had her left adrenal gland removed and endured biopsies of skull lesions.

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After two years of treatment, the cancer went dormant but relapsed in January of 2018. In March of 2018, Mady and her mom traveled to New York twice monthly to begin a trial treatment which cleared her of disease after 13 rounds of immunotherapy. In August of 2019, she had her first set of clear bone scans in almost four years. 

Mady’s attitude has been determined throughout treatment saying “it’s okay, I’m going to beat it!” From day one she had faith that she was going to beat the disease and has persevered when nothing was working. You can follow Mady’s story here: https://www.facebook.com/groups/1038894766152004/

Please help ACCO send well wishes to Mady and her family by commenting on this post! 

To nominate your Gold Ribbon Hero click here

To learn more about neuroblastoma, click here.

ACCO provides information, resources, support, awareness and advocacy to families who are affected by childhood cancer. Donate today to help the littlest warriors.

 

Gold Ribbon Hero: Adrian Z.


grh AdrianMeet Adrian, a shark and travel enthusiast that was diagnosed with Pituitary Germinoma at the age of 16. 

Adrian’s symptoms started in August 2017 when he was complaining of frequent headaches accompanied by nausea and vomiting. In October 2017, an MRI was taken of his brain revealing a mass in his pituitary region which compressed his left optic nerve.

On November 10, 2017, Adrian underwent his first brain surgery to remove the top portion of his tumor however the rest of the mass was not able to be removed. The top portion of the tumor was sent to the lab revealing Intracranial Pituitary Germinoma.  Just 12 days later, Adrian was sent back into brain surgery to remove built up fluid on his brain.
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Adrian’s mom, Veronica said “we were already devastated seeing him come out of a brain surgery. We were so nervous, but once we heard it was actually cancer, I cannot put it into words the devastation, fear, anger and a million feelings/thoughts/emotions we experienced. As a parent, it is the most devastating thing to hear that your child has cancer.”

Adrian began his first round of chemotherapy leaving him very weak. Three weeks later, he started his second round of therapy. In total, Adrian completed four rounds of chemotherapy and followed with 21 days of radiation.

Through all of the treatments, Adrian did not complain about his pain or struggles. Cancer gave Adrian a new outlook on life and his hope is that all affected with cancer around the world are cured of cancer and can live fulfilling and happy lives.

Adrian was awarded two separate trips which ultimately brought the family closer together in their journey. On his wish trip, Adrian was able to go shark diving, cave diving, and swim with the dolphins. “It allowed us to live in the moment with one another, something that we hadn’t really done because we would always anticipate every appointment, every chemo cycle, every surgery. It was something we were always anticipating, whether it was his health, we were always worrying. It just gave us just that hope to look forward to the future and not think about those things,” explained Veronica.edit2

Adrian is now 18, and thriving as a survivor.  He is currently being monitored by oncology every three months and is on hormone replacement therapy for his pituitary gland. Please join us in sending well wishes to Adrian and his family!

For more information about childhood cancer please visit: https://www.acco.org

Nominate your Gold Ribbon Hero here: https://www.acco.org/gold-ribbon-heroes/

 

 

Q&A with Smiley Riley: Our Giving Tuesday SuperHero

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“Smiley” Riley, as his family and supporters call him, is currently fighting childhood cancer. But Riley tells us he’s determined to “kick cancers butt!”

In honor of #GivingTuesday, Riley is helping ACCO raise funds and awareness to give back to kids like him. While he is currently in the hospital receiving treatment, we asked Riley’s mom, Ashley, to ask him a few questions about himself. His advice to other kids going through childhood cancer is inspiring to all…

What is Riley’s age, cancer type, date of diagnosis and status?

Riley is 5 years old. He has High-Risk Neuroblastoma and was diagnosed on Easter, April 21, 2019. Scans as of November 2019 revealed no traces of Neuroblastoma. But we will continue Riley’s treatment as planned.

How did you find out Riley had cancer?

Starting in February 2019, he was having leg pain and limping. We were in and out of the doctor’s office for weeks. The pain wouldn’t go away and the limping got worse. But tests and X-rays didn’t reveal anything. Eventually, the pain went to his arms and shoulders. We took him in again and bloodwork was drastically different. Within a week we were sent to Children’s and diagnosed within a few days!

How did you explain to Riley what cancer was and did he understand?

We told him a nasty sickness was inside his body. It was a sickness that required a lot of medicine to get rid of. Some of the medicine was going to make him sick also and he’d lose his hair. But they were really strong medicines that were going to get rid of the cancer. Unfortunately, our family dog was diagnosed with a tumor last September 2018 and we didn’t know when Bailey, our dog, was going to die but it would be soon. He immediately associated his sickness with Bailey and asked if he was going to die too. I about lost it when Riley was talking about it. We told him that dog cancer and human cancer are different. I don’t know if he fully understands his sickness but he was able to realize he didn’t feel good.

Had your family heard of childhood cancer before Riley was diagnosed and what was your reaction when you heard, “Your child has cancer.”

We knew about childhood cancer but not to the extent that we do now. We also never realized how many different kinds of childhood cancer types there were as well! I was actually by myself on Easter Sunday morning. Ben had gone home to check on our other sons and he was on his way back to the hospital. Riley had an X-ray and within 20 minutes he was doing a CT scan and very soon after that 3 doctors came in. Now when things typically happen that fast at the hospital, I knew I was about to get bad news. Hearing the words come out of the doctor’s mouth I felt like I had been hit by a truck. And then there was the feeling of disbelief this can’t happen to my child. And the flood of emotions overtook me. Then telling my husband over the phone was one of the most difficult phone calls I have ever had to make. We both were in shock that Riley had cancer and couldn’t believe this was happening to our little boy, our Smiley Riley.

What has Riley’s childhood cancer experience looked like so far?

Riley has had 5 chemo treatments and is currently on his 6th. He has had radiation therapy up at CHOP and he will be getting a transplant of his own StemCells on November 27. After this hospital stay, he will have more radiation and immunotherapy. He has had blood transfusions while going through this process. He is one of the strongest little guys I know. He’s missed lots of school, which breaks our hearts because he’s such a social butterfly and loves Kindergarten. We signed him up for Flag Football and soccer and he loved playing when he was able too. We try and keep life as “normal” as we can for him. Hospital stays go pretty well! He loves all of his nurses. Children’s has become home away from home. Although he loves getting out and going back home to his 3 brothers.

How has ACCO helped your family during this time?

ACCO has been another wonderful resource and tool to have for our family and for Riley! The cozy Cat and Medical Kit have been one of Riley’s favorites! He plays for hours with it and tests out his doctor skills. It has become a great tool for him to talk through things that he has gone through and he just gives Cozy Cat special care that his nurses and doctors do for him.

What is Riley’s motto or how does he take on going through treatment?

Smiley Riley Strong! And when you ask him what his superpower is he will tell you “Kicking Cancer’s Butt”. He came up with it all on his own. He was talking to one of his nurses one day and she asked him what his superpower was. She said I bet smiling! He said no ma’am. “Kicking Cancer’s Butt”! I about cried! He goes through his treatments like Hulk Smash! He just “smashes” right through it. Although it’s very hard sometimes, he pushes through. He knows these difficult treatments are to help him get rid of cancer.

What does Riley wish people knew about childhood cancer?

Kids with cancer are fighters. Love on them and support them. Don’t ever treat them as broken.

What does Riley want to be when he grows up?

He wants to be a chef and a baseball player

What would Riley say to other kids, like him, fighting cancer?

It’s ok to be scared and feel bad but just Keep Strong and Keep Smiling.

This Giving Tuesday, make a difference for kids like Riley. Donate to ACCO…because kids can’t fight cancer alone.

 

Donate on GivingTuesday

P.S. Your donation could go twice as far! Our partner Jel Sert will match Giving Tuesday donations, up to $1,000!

Gifts that Give Back: A Holiday Gift Guide

 

The decorations are shining and the music is jingling: the beauty and magic of the holiday season is here! And once again, it’s time to think about how to show your affection for all the special people in your life. We know how tough finding the perfect gift can be, so we suggest a different gift-giving routine this year by giving a gift that will not only make your loved ones feel loved but will also make a difference for children with cancer!

Here are 8 great ideas for gifts that are fun to give, amazing to receive, and a caring and thoughtful way to make the lives of kids with cancer a little brighter this holiday season!

PSST, just for you – Use promo codes BLACKFRIDAY40 & CYBERMONDAY40 for 40% off in our store on those days!

The Gift of Giving: Make a Donation to ACCO

Instead of spending money on yet another gift card that will lie around unused in a drawer, make your financial gift really count! Consider making a donation to ACCO in the name of your special loved one. That thoughtful contribution will enable us to provide free resources–like Cozy the Port-a-Cat and the Medical Play Kit–to kids with cancer. It’s practically a gift in itself!

Make a Holiday Donation Today

Cozy and Color-me Cozy Coloring Book

CozyEvery child loves a warm, fuzzy, stuffed friend and Cozy can be an extra special friend for your child during this holiday season.  Ideal for keeping your child company, Cozy is also a special teaching tool designed to help children cope with the many procedures common during treatment. Especially when paired with our inspiring Color-Me Cozy coloring book, Cozy is the perfect gift for a child in treatment, for a sibling or friend of a childhood cancer warrior, or just for that special child who loves to hug a furry friend! Order Cozy the Cat and Color-Me-Cozy for your special child.

Ultra Soft Awareness Blanket

Everyone loves snuggling up under a cozy blanket during the long, cold winter nights! Our large, ultra-soft blanket is big enough for the whole family and so soft it will quickly become a family favorite. Best of all, it features the ACCO blue and gold logo, and the proceeds of your purchase will help us provide free educational resources to kids with cancer and their family. Purchase An ACCO Awareness Blanket Here

Go Gold™ Scrunchies

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Hair scrunchies are chic and useful all at the same time! A gold- or pearl-colored satin scrunchie can dress up any holiday updo, while a “You’re My Star” scrunchie will make a special friend feel really special! Our partners at Sunflower Girl Scrunchies make beautiful, Go Gold™ scrunchies and donate 50% of the proceeds of all sales to ACCO. Give the Gift of a Go Gold™ Scrunchie Set

Mother and Child Lapel Pin

Holiday galas, office parties, and intimate family gatherings: there’s always a reason to look your best during the holidays and nothing dresses up a holiday outfit better than gold! Our gold ACCO logo pin, in the heart-warming shape of a mother and child, will help your loved ones show their support for ACCO and the fight against childhood cancer while looking their best! Give the Gift of Gold

Headbands of Hope

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Headbands symbolize so much for kids with cancer, and they make great holiday gifts as well! For every beautiful headband you buy through Headbands of Hope, they donate one to us, enabling ACCO to provide free headbands to children with cancer. So buy enough for all the special friends in your life! They’ll get a great gift and you’ll get the delightful satisfaction of knowing you’ve helped make a child with cancer feel special and confident this holiday season. Visit Headbands of Hope to Make Your Holiday Shopping Easy

Pedi-CURE™ Gold Nail Polish

What do little girls love more than a glittery gift for the holidays? A gold glittery gift that makes them look and feel special! A cute little bottle of glittery gold Pedi-CURE™ Gold Nail Polish is the perfect stocking stuffer for all the special glittery girls in your family, and a great way to help raise awareness about childhood cancer! AND, our signature Pedi-CURE™ Gold Nail Polish is on sale now (while supplies last), which makes it a holiday treat for you! Buy Pedi-CURE™ Gold Nail Polish from the ACCO Store

Amazon Smile

Planning to do a lot of your holiday shopping online this year? Then why not make Amazon donate to your favorite non-profit – aka ACCO – while you shop! It’s simple: Visit the special ACCO Amazon Smile link before you make your purchase(s), and Amazon.com will donate 0.5% of your purchase to ACCO.

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Do All Your Holiday Shopping with Amazon Smile!

The Vincristine Drug Shortage: A Medical Crisis for Childhood Cancer Families

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UPDATE: Because vincristine is such a lifesaving medicine, Teva has decided to re-introduce the product and plan to manufacture it in their U.S. plant, which provides the fastest route to market. This drug will be available for patients in the U.S. as early in 2020 as possible. Thank you, Teva, for listening to our concerns and making childhood cancer a priority. Read their full statement here.


If your child is currently fighting a childhood cancer diagnosis, the last thing you want to hear is that one of the drugs required to beat that cancer is currently unavailable. Yet that is exactly what many families are being told, due to a nation-wide shortage of a critical chemotherapy drug known as Vincristine.

This is a frightening situation for childhood cancer families across the country. Together with the Alliance for Childhood Cancer Drug Shortages Working Group and the Children’s Oncology Group, ACCO is working with the U.S. FDA to find an immediate resolution to this crisis, as well as develop long-term solutions to prevent future shortages. Because no child should have to go without the critical medications they need to survive childhood cancer.

What is Vincristine?

If your child has been in treatment for childhood cancer, it is likely that the sterile generic injectable Vincristine played a role in that treatment; this critical chemotherapy drug has been included in nearly every treatment protocol for childhood cancer, as well as some adult cancers, for the past five decades.

Cancer starts when abnormal cells in the body grow and divide too quickly. Vincristine is so effective in the fight against childhood cancer because it slows or stops this abnormal replication. Unfortunately, there is no alternative or recommended substitute for Vincristine available on the market today, making the current shortage of this important drug a true crisis.

Why is there a shortage of the Vincristine drug?

The current shortage of Vincristine has its roots in two specific events:

  1. The pharmaceutical company Pfizer, the primary manufacturer and distributor of 97% share of Vincristine for the U.S. market, encountered a quality control issue in its production line, forcing the company to curtail, at least temporarily, its production of Vincristine.
  2. Earlier this year, Teva, the second of the two manufacturers of Vincristine decided to stop distribution of the generic drug to the U.S. due to their small 3% market share. They communicated with the FDA at the time and were assured that their leaving the market would not result in a shortage of the drug. Generic drugs have a very small profit margin as compared to patented name-brand drugs making it not always possible to continue production. Teva has stepped back in to help reduce the shortage as quickly as possible.

How will this shortage affect kids with cancer currently being treated?

The COG guidance is that if a site does not have sufficient drug available, then children should not be enrolled onto a study. For children who were already participating, sites were given guidance as to how best to manage the research component of care due to the shortage. At some centers, this has led to the rationing of Vincristine and some children had their doses delayed or were possibly missed.

What should I do if my child is currently using Vincristine?

If your child is currently undergoing chemotherapy that includes Vincristine, talk to your child’s oncology team about how this shortage could impact his or her treatment. Although there is relatively little specific data about how missed and/or skipped doses may impact outcomes, your child’s oncology team is best suited to help you understand the implications of this crisis in terms of your child’s specific diagnosis and treatment plan.

Recently, the FDA released a report Drug Shortages: Root Causes and Potential Solutions where they discuss underlying factors contributing to ongoing drug shortages (not just Vincristine) and potential solutions. Find the full report at this link.

We also encourage you to contact the FDA at drugshortages@fda.hhs.gov and cc ACCO’s Director of Government Affairs and External Relations, Jamie Bloyd at jbloyd@acco.org. The FDA will use the information you provide to track the shortages and distribute available resources. Only those impacted by this issue should use this email; it should NOT be used for calls to action or for general complaints about the shortage.

How can I help?

Without changes to our current healthcare system, we fear that this crisis will not be the last. We need your help to ensure that no family ever has to learn that the medicine they need to treat their child is simply not available. We are working with representatives in government, as well as with our allies in the childhood cancer community, to push towards comprehensive federal legislation designed specifically to prevent this type of shortage in the future.

Make your voice for change heard!

Join our advocacy network to follow the latest developments in this critical issue and learn more about how you can help us promote important legislative change. Join our mailing list today.

Join Our Mailing List

About the American Childhood Cancer Organization

The American Childhood Cancer Organization was founded in 1970 by parents of children and adolescents diagnosed with cancer. As the nation’s oldest and largest grassroots organization dedicated to childhood cancer, ACCO is committed to shaping policy, supporting research, raising awareness, and providing free educational resources to kids with cancer, survivors, and their families. Additionally, ACCO is the sole U.S. member of Childhood Cancer International (CCI) and has helped support more than half a million families over the past 50 years. Help make childhood cancer a national health priority because kids can’t fight cancer alone®

For more information about how ACCO can help your family, call 855.858.2226 or visit:

7 Ways You Can Help Kids With Cancer This Fall

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While September is “Childhood Cancer Awareness Month”, raising funds and awareness for childhood cancer can happen all-year-round! Fall lends itself perfectly to all types of gold-themed fundraising. All you need is a little creativity and a big heart, and your Fall fundraiser is sure to be a huge success!

Here are 7 fun and easy fundraising ideas for Fall:

  1. Fall is the perfect time to get cozy in your most comfy PJs. So why not get comfy and cozy for kids with cancer? Host a PJammin® Party at your school or place of work and donate the proceeds to kids with cancer!
  2. It’s football season, and a great time to rally your team around a great cause: helping kids with cancer! Ask your local football team to honor kids with cancer by wearing gold laces (provided by ACCO) during a game, while you sell gold-themed treats and fill a donation bucket. 
  3. October is pumpkin month! Who doesn’t love painting pumpkins and making beautiful fall crafts? Host a pumpkin painting party or a craft night where the theme of the evening is gold! Be sure to stock lots of gold paint and craft supplies; ask for small donations for kids with cancer. 
  4. Do you or someone you know love to bake at harvest time? Organize a Pie Day at work where you sell slices of delicious homemade pie and donate the proceeds to kids with cancer! Not a baker yourself? Ask for help from friends or ask local bakeries to donate to your Pie Day event. 
  5. Use your fingers and toes to honor kids with cancer! It’s easy: host a gold-themed manicure/pedicure party! Provide gold-colored nail polish and ask everyone to paint their nails gold in honor of kids with cancer in exchange for a small donation to help kids with cancer.
  6. Tired of the same old Halloween gags? Why not host a Go Gold Halloween Party? Ask party-goers to forego the creepy Halloween costumes and dress up in gold instead! Gold dresses, gold hats and ties, gold shoes, gold jewelry: see how imaginative your friends can be for kids with cancer. 
  7. Give a treat when you “trick or treat” this year! That’s right: decorate your Trick or Treat bag or sack with Gold Ribbons and ask for a small donation instead of (or in addition to!) candy. And be sure to give your own “treat” back: pass out gold silicone bracelets, gold ribbon stickers, and other gold-themed commemorative items each time you get a donation for kids with cancer! 

At ACCO, our goal is to help you help kids with cancer! And whether you use one of our ideas or come up with an awesome idea of your own, it’s the kids with cancer and their families who will reap the benefits! 

Register your fundraiser with ACCO to take advantage of our complimentary awareness items and amazing program support.

PJammin® for Kids with Cancer

Go Gold® for Kids with Cancer

About the American Childhood Cancer Organization

The American Childhood Cancer Organization was founded in 1970 by parents of children and adolescents diagnosed with cancer. As the nation’s oldest and largest grassroots organization dedicated to childhood cancer, ACCO is committed to shaping policy, supporting research, raising awareness, and providing free educational resources to kids with cancer, survivors, and their families. Additionally, ACCO is the sole U.S. member of Childhood Cancer International (CCI) and has helped support more than half a million families over the past 50 years. Help make childhood cancer a national health priority because kids can’t fight cancer alone®

For more information about how ACCO can help your family, call 855.858.2226 or visit:

6 Facts About Childhood Cancer

How to Help Kids with Cancer During Childhood Cancer Awareness Month

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September is Childhood Cancer Awareness Month, and it’s a great time to get involved on behalf of children fighting childhood cancer!  

There are so many different ways for you to help kids with cancer! No matter how you decide to get involved, the important thing to know is that your actions matter to children and families fighting childhood cancer. 

Here are five ways you can help kids with cancer during Childhood Cancer Awareness Month:

1. Make a donation

Childhood Cancer Awareness Month is a great time to donate to ACCO’s ongoing effort to develop and offer free resources to families facing a cancer diagnosis. Our resources are designed to help children, teens, siblings, and families cope with the medical, emotional, and psychological hardships of childhood cancer. Thanks to your help, we can continue to offer all our resources free of charge to families facing a cancer diagnosis. 

Donate

2. Go Gold for Kids with Cancer®

Gold is the color of the month during September and what better way to raise awareness about childhood cancer than to incorporate the gold ribbon into your fundraiser! All you need to do is select your theme–a sports night, a dance party, a fashion show, a bake sale–and highlight the color gold. As a special bonus, ACCO will provide gold-themed awareness items to help you paint your community GOLD for Childhood Cancer Awareness Month.

Find more ideas for Go Gold fundraisers here!

3. Host a PJammin® Party

Pjammin event

Kids in treatment for childhood cancer can spend weeks–even months–in the hospital. PJammin® events help people in your community stand in solidarity with kids who often live in their pjs at the hospital, while raising money for a great cause. Work with your school or place of work to organize a day for everyone to show up in their pjs in exchange for a donation. It’s easy, it’s fun, and it’s a great way to raise awareness during Childhood Cancer Awareness Month!

PJammin® for Kids with Cancer

4. Join the Take a Pop, Share a Smile Program

For kids with cancer, a frozen pop can be more than just a tasty treat; it can also help ease the discomfort of some of chemo’s side effects. Through our Take a Pop, Share a Smile program, our partner JelSert provides a free special freezer and unlimited supply of ice pops to hospitals across the U.S. Help us expand our program by requesting a freezer for your local children’s hospital! 

Request a Freezer

5. Advocate for Kids with Cancer

ACCO and the childhood cancer community has a goal for every state to proclaim this month — September — Childhood Cancer Awareness Month. We need your help! Join forces with us and make your voice heard! The process is easy: simply visit our Voter Voice Action Center where ACCO has provided a pre-written email for you to send to your governor. It only takes a few minutes to make a powerful statement on behalf of children fighting childhood cancer!

Proclaim September as Childhood Cancer Awareness Month in your state

About the American Childhood Cancer Organization

The American Childhood Cancer Organization was founded in 1970 by parents of children and adolescents diagnosed with cancer. As the nation’s oldest and largest grassroots organization dedicated to childhood cancer, ACCO is committed to shaping policy, supporting research, raising awareness, and providing free educational resources to kids with cancer, survivors, and their families. Additionally, ACCO is the sole U.S. member of Childhood Cancer International (CCI) and has helped support more than half a million families over the past 50 years. Help make childhood cancer a national health priority because kids can’t fight cancer alone®

For more information about how ACCO can help your family, call 855.858.2226 or visit:

About Childhood Non-Hodgkin Lymphoma Cancer – Prognosis and Outlook

Key Statistics Relating to Childhood Non-Hodgkin Lymphoma (NHL)

Non-Hodgkin Lymphoma (NHL) is an aggressive and diffuse type of cancer that grows within a child’s immune system, specifically within a type of white blood cell known as a lymphocyte. Non-Hodgkin Lymphoma accounts for about 5% of all childhood cancers (Hodgkin Lymphoma accounts for around 3% of all childhood cancers). In general, the risk of NHL decreases with age; it is uncommon in children under the age of 3 and over the age of 14. It is more commonly diagnosed in boys than girls. In children, there are three distinct types of NHL: Lymphoblastic lymphoma (LBL), Burkitt lymphoma (also called small, non-cleaved cell lymphoma), and large cell lymphomas. Burkitt lymphoma accounts for about 40% of all NHL diagnoses in the United States.

IMG_2037These general statistics are interesting but of course the most important statistic for many people is the long-term survival rate for children with NHL. In other words, most people want to know “what is the expected life span of someone with Non-Hodgkin Lymphoma?” Generally speaking, oncologists don’t talk about “curing” childhood cancer; instead, they utilize something called the 5-year survival rate. This key statistic refers to the percentage of children who are still alive five years after their treatment is complete. For most children with NHL, this type of cancer is unlikely to return once a child has been “cancer free” for five years (although this does not address the risk of secondary cancers stemming from the original cancer treatment).

As always with statistics, however, it is important to look at them with a degree of caution. First, and most importantly, a general statistic can never predict what will happen with one specific child. Each child’s prognosis depends heavily on their unique diagnosis. Second, by definition, the 5-year survival rate looks at children who completed treatment at least five years ago, if not longer. Fortunately, research into new and better treatment options for NHL and other types of childhood cancers is progressing more rapidly than ever before, so today’s treatment options may be more effective than those available five or more years ago.

Prognosis of Non-Hodgkin Lymphoma by Type

The good news is that, in general, NHL responds well to chemotherapy; in other words, chemotherapy is usually able to kill most NHL cells fairly quickly. Moreover, as research into different types of drugs and different combinations of drugs progresses, oncologists are finding even more effective methods of targeting NHL. However, the specific prognosis of each child will depend on the type of NHL they have been diagnosed with, the stage of the cancer, how well it responds, and the general health of the child. Your child’s oncologist will be able to provide you with an answer to this question that is specific to your child.

The prognosis for the three main types of Non-Hodgkin Lymphoma in children is broken down thusly:

  • Lymphoblastic lymphoma (LBL): Like Acute lymphoblastic leukemia (ALL), LBL grows in immature lymphocytes known as lymphoblasts. LBL responds well to intensive chemotherapy, and the 5-year survival rate for Stage I or II LBL is greater than 90%. The 5-year survival rate for Stage III or Stage IV LBL is generally greater than 80%.
  • Burkitt lymphoma (small, non-cleaved cell lymphoma): Burkitt lymphoma starts in the abdomen, and can sometimes grow in the form of a tumor; therefore, surgery in addition to chemotherapy may be required. Burkitt lymphoma is one of the fastest-growing cancers and must be treated very aggressively. As with LBL, Stages I and II can be treated very successfully, with long-term survival rates greater than 90%, while the long-term survival rate for Stages III and IV is between 80 and 90%.
  • Large cell lymphomas: Large cell lymphomas grow from mature T or B cell lymphocytes. Generally speaking, this type of NHL grows more slowly than other lymphomas and is less likely to spread to the bone marrow or brain. There are two main subtypes: anaplastic large cell lymphoma (ALCL) and diffuse large B-cell lymphoma (DLBCL). Again, for Stages I and II, the 5-year survival rate is greater than 90%, and ranges between 80 and 90% for more advanced stages (III or IV). The long-term survival rate for ALCL, however, is between 60 and 75%.

More about Childhood Non-Hodgkin Lymphoma Cancers:

Learn More About the Different Types of Childhood Cancers:

For additional information about childhood cancer or on ACCO, or to order resources for you or your child, please visit our website at www.acco.org.

Together, we can make a difference. Donate today because kids can’t fight cancer alone®.

Donate to ACCO

About American Childhood Cancer Organization

The American Childhood Cancer Organization was founded in 1970 by parents of children and adolescents diagnosed with cancer. As the nation’s oldest and largest grassroots organization dedicated to childhood cancer, ACCO is committed to shaping policy, supporting research, raising awareness, and providing free educational resources to kids with cancer, survivors, and their families. Additionally, ACCO is the sole U.S. member of Childhood Cancer International (CCI) and has helped support more than half a million families over the past 50 years. Help make childhood cancer a national health priority because kids can’t fight cancer alone®

For more information about how ACCO can help your family, call 855.858.2226 or visit: