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Childhood Hodgkin Lymphoma Disease: Detection and Diagnosis

Childhood Hodgkin Lymphoma Disease: Detection and Diagnosis

How is Childhood Hodgkin Lymphoma Detected?

As with most types of childhood cancer, there is no method of early detection for childhood Hodgkin lymphoma. Childhood Hodgkin lymphoma does cause detectable symptoms; however, the symptoms are usually general and vague, and may in fact be caused by a variety of routine childhood complaints.

Symptoms of childhood Hodgkin lymphoma may include:

  • Fatigue
  • Unexplained fever
  • Unexplained and significantly weight loss (defined as at least 10% of body weight within 6 months of diagnosis)
  • Night sweats
  • Itchy skin

The most common symptom of childhood Hodgkin lymphoma is one or more swollen lymph node(s) in the neck, armpit, chest, and/or groin area. As with the other symptoms listed above, however, a swollen lymph node may—and very often does—have other causes than childhood Hodgkin lymphoma. Swollen lymph nodes are usually caused by infection because the lymph nodes are responsible for helping the body clear the blood of foreign viruses and bacteria. Swollen lymph nodes caused by infection are usually uncomfortable and painful to the touch, and can be treated with antibiotics.

If the lump caused by the swollen lymph node does not diminish over time, does not respond to antibiotics, and/or is not uncomfortable or painful, or if your child has a swollen lymph node and one or more of the symptoms noted above, your child’s pediatrician may suspect the presence of Hodgkin lymphoma and suggest additional testing.

How is Childhood Hodgkin Lymphoma Diagnosed?

Once infection has been ruled out as the cause of any swollen lymph nodes, the next step in determining whether your child has childhood Hodgkin lymphoma is to perform a biopsy on the affected lymph node tissue. A biopsy involves removing some or all of the affected tissue and examining it under a microscope to detect the presence of cancerous cells. Depending on the location of the lump, the biopsy can be performed under local anesthesia (for lumps located near the surface of the skin) or under general anesthesia (for lumps located deeper inside the abdomen or chest).

How is Childhood Hodgkin Lymphoma DiagnosedThere are two different types of biopsies that can potentially be used to diagnose childhood Hodgkin lymphoma. The preferred method is an excisional or incisional biopsy, because in most cases it involves removal of enough tissue to diagnose the exact type of Hodgkin lymphoma as well to help in staging. In an excisional biopsy, the entire lymph node is removed. During an incisional biopsy, a small piece of the swollen lymph node is removed.

A needle biopsy is less invasive than an excisional or incisional biopsy, but is usually not preferred as it may not provide sufficient tissue for an accurate diagnosis. A fine needle aspiration biopsy utilizes an extremely small, hollow needle to remove a small amount of fluid and tissue, while a core needle biopsy uses a larger needle and removes a slightly larger amount of fluid and tissue.

Once childhood Hodgkin lymphoma has definitely been diagnosed with a biopsy, your child may have to undergo additional testing to determine the specific type of Hodgkin lymphoma and the stage of the disease (how far it has progressed). This information will help determine the recommend course of treatment. Additional tests may include:

  • Bone marrow aspiration: a sample of bone marrow is removed from the inside of the pelvic bone (usually); in some cases, the test may involve removing a small sample of bone as well. A biopsy of the bone and/or marrow will indicate whether cancerous cells have spread to the marrow.
  • Immunohistochemistry: this laboratory test determines whether certain proteins are present on the cancerous cells, in order to determine the exact type of Hodgkin lymphoma, for instance, or to diagnose non-Hodgkin lymphoma or another disease entirely.
  • Imaging tests, such as chest x-ray, CT scan, and/or PET scan: While not generally used during diagnoses, imaging tests can be used to determine the stage of the disease and whether treatment is working. In some cases, imaging tests may be used to detect and/or biopsy enlarged lymph nodes not readily apparent with an easily visible lump, such as those located in the chest.

About American Childhood Cancer Organization

American Childhood Cancer Organization (ACCO) is a non-profit charity dedicated to helping kids with cancer and their families navigate the difficult journey from cancer diagnosis through survivorship. Internationally, ACCO is the sole U.S. member of Childhood Cancer International (CCI), the largest patient-support organization for childhood cancer in the world. Here in the United States, ACCO promotes the critical importance of ensuring continued funding into new and better treatment protocols for childhood cancer.  And most importantly, ACCO is focused on the children: developing and providing educational tools for children fighting cancer and their families, empowering them in their understanding of childhood cancer and the medical decisions they must make during this difficult journey. All of ACCO’s resources are available free of charge for families coping with childhood cancer.

 

For additional information about childhood cancer or on the ACCO, or to order resources for you or your child, please visit our website at www.acco.org , call 855.858.2226 or visit:

 

“A Mother’s Journey” – Part 1

Please Consider Helping Childhood Cancer Families This Mother’s Day

HUNTER ZEN 01The Mother’s Day traditions of paper cards and handmade crafts will not be the current reality for all families this year. We know that an inside look into the reality of Mother’s Day may include a family celebrating a child’s successful, but excruciating cancer treatment. We also know that other scenes are filled with moms comforting a sick child in a hospital or even worse, moms shielding a broken heart in the empty silence of a house that, at one time, used to be full of chaos and noise. This unfortunate depiction is often the sad reality left in the devastating wake of childhood cancer.

As we approach what should be a holiday filled with the overwhelming joy of motherhood, we ask that you please take a moment to not only think about these moms and their children, but to share a donation by clicking here or the button below, so that we may help them now.

DONATE »

The American Childhood Cancer Organization (ACCO)provides help through our resources while a child is going through cancer, as a family navigates the terrifying journey they are now facing. With your help, over the past two years alone the ACCO has distributed over 77,000 individual free resources to families across the nation! While we also assist with advocacy efforts that lead to better funding for research, we know the importance of needing a hand to hold during the scariest times in a mother’s life. We can’t support these families without you. Through your donation, you are joining hands with thousands of mothers who need to know they are not the only ones advocating for their child’s life.

Part 1 – “A Mother’s Journey” – The Story of a Mother’s Journey While Having a Child with Cancer

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This Mother’s Day, we have been given special permission to share a childhood cancer mother’s desperate and heart-breaking story. Cyndie French is finally ready to let the world know what really happened behind the Pulitzer Prize winning photographs that left lasting impressions in so many of our hearts and minds. It is an honor that Cyndie has given the ACCO the opportunity to help provide a raw glimpse into what living the reality of a childhood cancer mom looks and feels like. Please be advised that this story may contain photos and content that are graphic in nature. Viewer discretion is advised. 

NcCPKsvEleven years ago, on May 11, Derek Madsen passed away after a long struggle with an aggressive type of childhood cancer, neuroblastoma, at the age of 11. That year—2006—May 11 was just a few days before Mother’s Day. On that day, Derek’s mother, Cyndie French, was forced to make the most difficult decision a mother can be asked to make: the decision to let her son go, to help Derek take his final breath. So, it seems only appropriate that we begin this special multi-part series on Derek and Cyndie honoring a very brave childhood cancer mother, eleven years after Derek passed away in the loving arms of his family.

Cyndie’s story has been public for quite some time, thanks in large part to a series of heart-wrenching Pulitzer Prize-winning photos taken during the final year of Derek’s life by photographer Renée Byer of The Sacramento Bee. Yet although Cyndie’s story has been co-opted by others on a number of occasions, Cyndie has never told her own story until now. Cyndie has agreed to partner with the American Childhood Cancer Organization (ACCO) to share her story, finally from her own perspective, about the financial struggle and emotional turmoil that she experienced while coping with Derek’s diagnosis, through the treatments, to the end of his all-too-short life.

The Financial Consequences of Childhood Cancer

02Cyndie’s goal in sharing her story exclusively with ACCO is to raise awareness about the devastating consequences of a childhood cancer diagnosis on the family. It is easy to discuss the need for greater research into finding a cure for childhood cancer but can be difficult to face the grim realities that families go through—physically, emotionally, and financially—after a cancer diagnosis. Like ACCO, Cyndie’s goal is to shine a light onto those problems, in the hope that bringing this light will also bring a solution: more financial and emotional support for families coping with a cancer diagnosis.

At the time of Derek’s diagnosis, Cyndie was a single mother of five children and was the successful owner of a local salon. Yet eventually, Cyndie realized that she could not continue working, handle Derek’s medical needs, and care for her other children. So Cyndie gave up her job and sold her salon in order to dedicate herself full-time to Derek and his siblings. This decision led to critical financial problems, and at times, Cyndie found herself wondering where she would get the money to pay her rent or buy her children’s next meal. In sharing her story, she hopes to raise money to help other families who, like her, are forced to give up everything in order to care for their sick child.

ACCO’s Multi-Part Series

01Over the next several months, ACCO will chronicle Cyndie’s story, from her own perspective. In this multi-part series, we will attempt to offer a comprehensive view into what family life is like during treatment for an aggressive and ultimately terminal case of childhood cancer. Cyndie’s story will include the financial consequences of a cancer diagnosis, the challenge of caring for siblings and maintaining a supportive family structure, the difficulty of helping her child cope with hospital stays and treatment protocols, and the gut-wrenching discussions and decisions that must be faced as treatment fails. In each segment, we will share Cyndie’s goals for helping families cope and share information about ACCO’s mission of support and assistance as well.

Warning: this story is not an easy one. It will be a graphic and honest portrayal of Cyndie’s experiences during and after Derek’s treatment and death. Moreover, our series will incorporate Renée Byer’s award-winning, and at times graphic, photos chronicling Derek’s treatment and death, as well as Cyndie’s emotional journey during this difficult time. These photos may also prove difficult for some of our readers.

“A Mother’s Journey”, by Renée Byer, The Sacramento Bee

03Right from the start, Cyndie would like to thank Renée for the dedication, care, and compassion that she has brought to this story. During the year of Derek’s treatment, Renée became more than simply an interested third party, she became a friend. Both Cyndie and Derek came to trust her and welcome her into their lives, even during some of life’s intimate moments. As her photos show, Derek was often angry, frustrated, and scared during his treatment, refusing help from everyone but Cyndie, yet he came to realize that Renée was there to share his story and to honestly and appropriately capture his feelings. ACCO would like to thank Ms. Byers for allowing us to incorporate these amazing photos into our series on Cyndie and Derek.

*All photos are the intellectual property of either The Sacramento Bee or Cyndie French. Any attempt to duplicate or use without prior written permission will result in legal recourse.

About American Childhood Cancer Organization

American Childhood Cancer Organization (ACCO) is a non-profit charity dedicated to helping kids with cancer and their families navigate the difficult journey from cancer diagnosis through survivorship. Internationally, ACCO is the sole U.S. member of Childhood Cancer International (CCI), the largest patient-support organization for childhood cancer in the world. Here in the United States, ACCO promotes the critical importance of ensuring continued funding into new and better treatment protocols for childhood cancer.  And most importantly, ACCO is focused on the children: developing and providing educational tools for children fighting cancer and their families, empowering them in their understanding of childhood cancer and the medical decisions they must make during this difficult journey. All of ACCO’s resources are available free of charge for families coping with childhood cancer.

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.

Gold Ribbon Hero Evan Macrone

Evan’s Story: Soft Tissue Sarcoma

Evan at Camp Woodruff 2016 just finished chemo in MayEvan Mario Macrone was 11 years old when he was diagnosed with childhood cancer, in August 2015. First, Evan noticed a small lump in his groin while playing with his little brother, Gavin. A biopsy revealed the worst-case scenario: a soft tissue sarcoma. So instead of starting middle school, Evan started an intensive treatment regime involving 17 rounds of chemotherapy, 6 weeks of radiation, and surgery.

Sarcoma is a type of cancer that grows in the so-called “soft tissues” that connect the body and support the organs, such as fat, tendons, muscle, fibrous tissue, bone, and cartilage. Although the most common sarcomas in children and adolescents are osteosarcoma (cancer of the bone), rhabdomyosarcoma (cancer of the muscle), and Ewing sarcoma (in or outside of the bone), in fact there are more than 50 different and specific types of sarcoma. Because Evan’s case did not fall neatly into any specific classification, his tumor was classified as “Ewing-like”.

Evan missed his entire sixth grade year while in treatment, completing online school instead and achieving straight As in the process! He continued to participate in his favorite activity—Boy Scouts—and see his friends whenever possible. But with treatment complete in May, he was able to start seventh grade as normal, and joined right in without skipping a beat. He played clarinet in symphonic band as first chair and played the piano in jazz band. He continued to get straight As, making the principal’s honor roll during the first semester.

The good news was short-lived, however. In December 2016, Evan’s scans revealed, again, the worst-case scenario: the sarcoma had returned to the original site and metastasized to the lungs and brain. Treatment resumed with chemotherapy, but quickly focused on radiation to control the tumor growing in Evan’s brain. Still, Evan never gave up. He went back to online school and continued to work towards his Star Rank in Boy Scouts.

We all will love you foreverOn March 15, 2017, Evan passed away while traveling to California with the Make a Wish foundation to visit his best friend and see the famous sights of Los Angeles. Unable to make the trip home, Evan was surrounded by his family, including his two beloved brothers Mike and Gavin, and his best friend. He was laid to rest near his family home in Florida.

Knowing how much Evan loved the Boy Scouts, Evan’s family laid him to rest in his full Class A scout uniform; his troop posthumously awarded Evan the Spirit of Eagle ceremony and has set up a scholarship fund in Evan’s name, dedicated to sending one child per year to the Scout camp that Evan loved so much. The PTAs in both his Elementary and Middle Schools have honored Evan’s memory, especially his love of reading, by furnishing special “Evan Mario Macrone reading corners”.

Remembering Evan, in his Mother’s Words

“Evan was a voracious reader, he read anything and everything, soaking up books and knowledge. He was smart, he knew more about things that adults do and read and understood complex items such as space, time, math and physics.

Catching your last breath for mine for all eternity“Evan touched lives in so many ways, more than I could have known. More important, Evan was a kind, gentle, loving, joyful, and giving person. He made sure others in his class understood concepts and went out of his way to assist them and reach out to those he saw may be having difficulty. He gave of himself to his friends and scouts selflessly.

“Evan loved music and jazz and coffee and bookstores and movies and mini golf and The Simpsons and Adventure Time and chocolate and sushi and miso soup and crab cakes. He loved camping under the stars and sharing meals with friends. He loved school and learning and being around ideas. YouTube made him laugh out loud. He was an amazing big brother to Gavin; they shared bunk beds and Evan did not want to move to his own room even as he grew too big for his top bunk. He protected Gavin and shared his knowledge and wisdom with him and they never really fought.

“He was my light my jewel and I told him every night ‘I love you more than anything in the whole entire universe’.”

Right before his relapse, Evan wrote a poem, School Days, in Language Arts class. Evan’s family has shared this poem with us because, as his mom notes, it “The poem speaks to who he was better than I ever could.”

 

School Days: A poem

by Evan Macrone

Evan Heading to Camp Woodruff in 2015 - before cancerThroughout Life I have learned
That you can’t stay clean on a camping trip
Even if you shower every day
That you can’t enjoy delectable doughnuts from Dough
Or pizza hot out of the oven
That you can’t avoid bites by bugs
From pesky gnats, ticks, and no-see-ums
And you can’t get a thick sanctuary from the weather
Just a stuffy, flimsy tent.

 
But you also can’t hike mountain trails
Go canoeing, kayaking, small boat sailing,
Tubing, skiing, sightseeing, fishing,
Pioneering, swimming, snorkeling, and scuba diving
Cook meals for friends
Sleep under a night sky full of stars
If you are cooped up at home, hunched over,
Playing a video game
Or at school,
Taking an arbitrary test that will un-uniquely decide your future
Of being cooped up in an office till you croak.

 
So go and get out there
And maybe live a little
Cause God knows,
You could get cancer any day
Or get caught in a car accident
And how many days before that
Will you regret?

About American Childhood Cancer Organization

American Childhood Cancer Organization (ACCO) is a non-profit charity dedicated to helping kids with cancer and their families navigate the difficult journey from cancer diagnosis through survivorship. Internationally, ACCO is the sole U.S. member of Childhood Cancer International (CCI), the largest patient-support organization for childhood cancer in the world. Here in the United States, ACCO promotes the critical importance of ensuring continued funding into new and better treatment protocols for childhood cancer.  And most importantly, ACCO is focused on the children: developing and providing educational tools for children fighting cancer and their families, empowering them in their understanding of childhood cancer and the medical decisions they must make during this difficult journey. All of ACCO’s resources are available free of charge for families coping with childhood cancer.

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.

Help Us Celebrate the Success of 2017 Action Days!

Action Days 2017 Thank you

ACCO, as a founding member of the Alliance for Childhood Cancer would like to sincerely thank the more than 200 members of the childhood cancer community who gathered together in Washington, DC on May 1st and 2nd to advocate on behalf of the childhood cancer community. Your support, your dedication, and above all, your passion during those two days helped to bring us closer to our goal of ensuring that childhood cancer is recognized and acted upon as a national child health priority.

We would also like to thank the Members of Congress who have agreed to add their names as co-sponsors to the Childhood Cancer STAR Act and support for including language from the RACE for Children Act in the FDA User Fee Bill (PDFUA). We want to also give an especially big “Thank You” to those Senators and Representatives who took time out of their busy schedule to meet with us, to listen to our stories and to understand the critical importance of these bills to our families. Specifically, we would like to thank:

• Representative Michael McCaul (R-TX), who stopped by to show his support during Monday’s advocacy training; Representative McCaul has been the lead House Sponsor for the STAR Act and is co-chair of the House Childhood Cancer Caucus.
• Senator Jack Reed (D-RI), who shared his words of wisdom with us Tuesday morning as we headed off to a day of meetings with our Members of Congress on “The Hill”.

Senator McCaul Support Childhood CancerFinally, we would like to thank:

• Thomas Rice, Senior Health Advisor to Congressman McCaul for his thoughts and advice on the STAR Act;
• Rita Habib, Senior Health Advisor to Senator Michael Bennet (D-CO) for her thoughts and advice on inclusion of language from the RACE for Children Act into the FDA User Fee Bill (PDUFA); and
• David Pugach, Director of Federal Relations for the American Cancer Society Cancer Action Network (ACS CAN).

Thank you for giving us a deeper understanding of these two critical pieces of legislation and for sharing your advice on successful advocacy strategies.

2017 Action Days Goal:

Cosponsor the Childhood Cancer STAR Act; Include language from the RACE for Children Act in the FDA User Fee Bill (PDUFA); and Increase FY 2018 funding for the NIH and NCI!

Childhood Cancer Gets Support on Capitol HillThe goal of the 2017 Childhood Cancer Action Days was to give members of the childhood cancer community, including parents, children with cancer, survivors, healthcare professionals and advocacy groups the opportunity to learn and implement effective advocacy approaches specifically relating to childhood cancer. This two-day event started with a day of formal advocacy training where participants learned critical “tips of the trade” from experienced advocacy experts within the childhood cancer community. On Tuesday, after an inspirational breakfast meeting, participants were off to “The Hill” to meet with their Members of Congress and staff in person to share their stories and show their support for childhood cancer issues currently pending before Congress.
During these amazing in-person meetings, advocates focused on three very specific requests:

(1) Co-sponsor the Childhood Cancer Survivorship, Treatment, Access and Research (STAR) Act (H.R. 820/S. 292). This is the most comprehensive childhood cancer act ever taken up by Congress and has enjoyed broad bi-partisan support; it was passed unanimously by the House of Representatives in December 2016 and needs to pass in the House and the Senate during the current administration.
(2) Support a FY 2018 $2 billion increase for the National Institutes of Health (NIH). Supporting this increase will help maintain the momentum of federal funding approved by both the House and the Senate in 2016 and the recent $2 billion increase in FY ‘17.
(3) Include the RACE for Children Act in the FDA User Fee Bill (PDUFA). This would give the FDA the authority to require any new cancer drug to be studied for its effectiveness for pediatric cancers for which the molecular target of the cancer drug is relevant.

Faces of Childhood Cancer WallAdvocacy is Ongoing: Keep the Pressure On!

2017 Action Days are over, but the fight for the Childhood Cancer STAR Act and the critical provisions in the RACE for Children Act goes on and will not stop until we achieve our goal! Whether you attended 2017 Action Days or are interested in adding your support now, you can add your voice to the growing chorus of support for these two critical pieces of legislation. If you would like more information on the Childhood Cancer STAR Act and the inclusion of the RACE for Children Act within the FDA User Fee Bill, or would like to contact your Members of Congress to request their support, we invite you to visit https://www.acco.org/takeaction/ for our easy-to-use advocacy tool!

About American Childhood Cancer Organization

American Childhood Cancer Organization (ACCO) is a non-profit charity dedicated to helping kids with cancer and their families navigate the difficult journey from cancer diagnosis through survivorship. Internationally, ACCO is the sole U.S. member of Childhood Cancer International (CCI), the largest patient-support organization for childhood cancer in the world. Here in the United States, ACCO is a founding member of the Alliance for Childhood Cancer. Together, we work to promote the critical importance of ensuring continued funding into new and better treatment protocols for childhood cancer. And most importantly, ACCO is focused on the children: developing and providing educational tools for children fighting cancer and their families, empowering them in their understanding of childhood cancer and the medical decisions they must make during this difficult journey. All of ACCO’s resources are available free of charge for families coping with childhood cancer.

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.

ACCO.org Rated #1 Childhood Cancer Blog (out of 75)

Feedspot has ranked ACCO.org as the #1 Childhood Cancer blog! This is the most comprehensive list of best Childhood Cancer blogs on the internet.

The Best Childhood Cancer blogs from thousands of top Childhood Cancer blogs in the Feedspot index using search and social metrics.

These blogs are ranked based on following criteria

  • Google reputation and Google search ranking
  • Influence and popularity on Facebook, twitter and other social media sites
  • Quality and consistency of posts.
  • Feedspot’s editorial team and expert review

About American Childhood Cancer Organization

American Childhood Cancer Organization (ACCO) is a non-profit charity dedicated to helping kids with cancer and their families navigate the difficult journey from cancer diagnosis through survivorship. Internationally, ACCO is the sole U.S. member of Childhood Cancer International (CCI), the largest patient-support organization for childhood cancer in the world. Here in the United States, ACCO promotes the critical importance of ensuring continued funding into new and better treatment protocols for childhood cancer.  And most importantly, ACCO is focused on the children: developing and providing educational tools for children fighting cancer and their families, empowering them in their understanding of childhood cancer and the medical decisions they must make during this difficult journey. All of ACCO’s resources are available free of charge for families coping with childhood cancer.

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.

For additional information about childhood cancer or on the ACCO, or to order resources for you or your child, please visit our website at www.acco.org , call 855.858.2226 or visit:

 

Childhood Hodgkin Lymphoma Disease: Causes and Symptoms

What Causes Childhood Hodgkin Lymphoma Disease?

Generally speaking, childhood cancer, like adult cancer, is caused by the uncontrolled replication of our body’s own cells. In a healthy body, cells grow and divide only when needed to replace old or damaged cells. When cancer develops, old cells do not die and/or new cells grow when they aren’t required; as these new cells divide without stopping, they can develop into a tumor or other form of cancer.  Childhood Hodgkin lymphoma, making up approximately 6% of all childhood cancers diagnosed in the United States, is a form of cancer that usually begins in the white blood cells that the body uses to fight off viruses, bacteria, and other foreign invaders.

What triggers the abnormal growth and replication of white blood cells, in the case of childhood Hodgkin lymphoma? Unfortunately, scientists do not yet fully understand why some cells in a child’s body begin to replicate abnormally and cause cancer. Thus, we do not know what causes childhood Hodgkin lymphoma or most other forms of childhood cancer.

In some cases of childhood Hodgkin lymphoma, scientists believe there may be a causal link between Hodgkin lymphoma and infection with the Epstein-Barr virus (EBV). Between 15% and 20% of adolescents and young adults diagnosed with Hodgkin lymphoma also test positive for infection with EBV; that percentage is even higher in children younger than 10 years of age. In these cases, EBV genetic material has been discovered in the Reed-Sternberg cells linked to most forms of Hodgkin lymphoma. The gene changes in the Reed-Sternberg cells caused by the presence of EBV genetic material may help these cells live longer than normal, replicate abnormally quickly, and/or develop extra cytokines that may, in turn, spark further growth of the Reed-Sternberg cells.

It would not be accurate to state, however, that EBV infection “causes” childhood Hodgkin lymphoma. Most children, adolescents, and young adults who contract EBV do not develop Hodgkin lymphoma and many diagnosed cases of Hodgkin lymphoma do not involve EBV infection. Thus, we do not know what triggers the development of Hodgkin lymphoma, nor do scientists fully understand the potential connection between EBV and childhood Hodgkin lymphoma.

What Are the Symptoms of Childhood Hodgkin Lymphoma?

Childhood Hodgkin Lymphoma DiseaseBecause childhood Hodgkin lymphoma is a cancer of the lymph system, the most common symptom is one or more swollen lymph nodes. Lymph nodes are bean-sized collections of lymphatic tissue in the neck, armpit, chest, and groin. A lump in one of these areas that does not go away over time, gets larger, and/or spreads to additional areas of the body may be an indicator of childhood Hodgkin lymphoma. Swollen lymph nodes caused by Hodgkin lymphoma in children are not usually painful or uncomfortable. However, swollen lymph nodes in the chest may press on the lungs and/or trachea (windpipe), causing coughing or breathing trouble, especially when lying down.

It is important to note, however, that most swollen lymph nodes are caused by infection, not Hodgkin lymphoma, as the lymph nodes are responsible for filtering lymph in the blood responsible for fighting viruses and bacteria in the body. Swollen lymph nodes caused by infection are usually uncomfortable or painful to the touch and will resume their normal size once the infection is under control.

Other symptoms of childhood Hodgkin lymphoma include:

  • Itchy skin
  • General fatigue
  • Fever of unknown cause (unrelated to infection)
  • Unexplained weight loss/anorexia (10% of body weight within 6 months before diagnosis)
  • Night sweats

Three of these symptoms—unexplained fever, unexplained weight loss, and drenching night sweats—are classified as B symptoms and used to determine the “stage” of the disease, as well as to assign risk. Generally speaking, patients who present with B symptoms are at higher risk and therefore require a more intensive treatment protocol.

About American Childhood Cancer Organization

American Childhood Cancer Organization (ACCO) is a non-profit charity dedicated to helping kids with cancer and their families navigate the difficult journey from cancer diagnosis through survivorship. Internationally, ACCO is the sole U.S. member of Childhood Cancer International (CCI), the largest patient-support organization for childhood cancer in the world. Here in the United States, ACCO promotes the critical importance of ensuring continued funding into new and better treatment protocols for childhood cancer.  And most importantly, ACCO is focused on the children: developing and providing educational tools for children fighting cancer and their families, empowering them in their understanding of childhood cancer and the medical decisions they must make during this difficult journey. All of ACCO’s resources are available free of charge for families coping with childhood cancer.

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.

 

For additional information about childhood cancer or on the ACCO, or to order resources for you or your child, please visit our website at www.acco.org , call 855.858.2226 or visit:

Brighten Gold Ribbon Hero Lexy’s Day

Brighten Lexy’s Day with a Personalized Audio Greeting!

received_10206947107822216Join together with us to show childhood cancer warrior Lexy that she has the love and support of the childhood cancer community across the country! Alexa—Lexy for short—has been fighting a persistent and aggressive brain tumor continuously for 13 years and is now facing a novel, experimental treatment designed to target intensive chemotherapy drugs directly at the tumor. In her 13 years of treatment, Lexy has experienced just about everything a childhood cancer warrior can go through. Yet because this treatment will require long periods of sedation and hospitalization and must include a potentially weaker combination of chemotherapy drugs than “usual”, Lexy and her family are nervous and anxious as she embarks on this next phase of her cancer journey.

Let’s help Lexy stay strong during this next phase of her treatment by sending her personalized audio greetings from across the country. Let her hear your voice, your words of encouragement, your expressions of support as she begins this difficult time! Let Lexy know that she and her family are never alone in their battle!

Want to participate? Simply record yourself saying some words of greeting, support, and encouragement, reading your favorite inspirational poem or song lyrics, or even singing a special song! Then you can either

Lexy’s Story: A Princess Warrior Who Refuses to Give Up!

16998060_10210814037139807_8568988354010618725_nFrom her first diagnosis at 14 months through her most recent relapse at age 14 (relapse #8, for anyone who’s counting), through dangerous surgeries and experimental treatments, Lexy continues to fight childhood cancer with awe-inspiring courage and determination. She has undergone 11 brain surgeries, participated in four clinical trials, sought treatment in five states, and been told “there is nothing more we can do”. Yet this amazing cancer warrior simply refuses to let her brain tumor—which she has named “Goomer”—win. As she puts it, “I will KICK CANCER’S BOOTY!! Hiii-Yaaaa!” *Kicks Foot*. With attitude like that, we know she can do it!

Lexy’s story began when she was just two months old and diagnosed with a rare genetic disorder called Neurofibromatosis type 1 (NF1). Occurring in only about 1 out of every 3,000 individuals, NF1 is characterized by the growth of multiple non-cancerous tumors on the skin and nerves, as well as the development of abnormal pigmentation of the skin. Unfortunately, about 15% of children diagnosed with NF1 will develop malignant brain tumors (gliomas), usually around the nerves of the eye.

1656059_793264014071648_8077044416752699676_n - CopyFor the first year of her life, Lexy progressed just like any healthy, happy child, despite the NF1 diagnosis, crawling and starting to take her first shaky steps. But just after her first birthday, her parents noticed that she had stopped trying to walk and had started to drag her left leg as she crawled. Concern turned to alarm when Lexy began clutching her left arm tightly to her chest. A trip to the pediatrician quickly turned into an emergency MRI, the results of which were devastating. A brain tumor the size of a Granny Smith apple was pressing on Lexy’s brain, causing partial paralysis on the left side.
That first year—2004—Lexy underwent two major brain surgeries to reduce the size of the tumor, visiting multiple hospitals in multiple states for critical “second opinions” when told the tumor was inoperable and untreatable. Yet after surgery, the tumor returned, larger and stronger than ever. For the next eight years, treatment developed a pattern: chemotherapy before and after surgery, with an MRI every three months showing continued growth. Each time, the chemotherapy got more intensive with greater side effects. Eventually, the family turned to clinical trials of new drugs, first in New York, then in Boston. Yet each time, “Goomer” returned, stronger than ever.

17016934_1367789259952451_8451643943963382860_oMost recently, Lexy has been participating in a clinical trial in Pittsburg focused on a vaccine-based approach. The goal of this trial is to convince the body that the tumor is an infection, with the goal of training the body to use its own white blood cells to fight the tumor. Unfortunately, after more than a year in this trial, Lexy’s most recent scans show a tumor that is stable but not shrinking. The unhappy conclusion is that the tumor is likely not going to respond to this form of treatment.

Side Effects: Long-Term Health Effects of Chemotherapy

By its very nature, chemotherapy is designed to kill cells as they grow. Because cancer cells grow more quickly than normal cells, they are more susceptible to the toxicity of the chemotherapy. Yet normal cells are affected as well, often leading to serious, long-term health problems, especially for children. In Lexy’s case, the location of the tumor, the many surgeries, and the long history of chemotherapy have taken a devastating toll on her young body.

14225563_10209150791719711_884863789674982736_nLexy suffers from partial paralysis on her left side, as a result of the tumor pressing against her brain. Lexy must walk with a splint on her left foot and has permanent paralysis of her left hand, which she calls her “Happy Hand”. At age nine, another brain surgery led to permanent and total blindness. She continues to suffer from seizures. Her kidneys no longer function properly and she suffers from permanent endocrine issues, including adrenal insufficiency, as well as hypothyroidism, meaning that her body cannot regulate temperature properly and she is cold all the time. The thyroid and endocrine issues must be compensated for by constant medication: she takes 15 medications nightly and eight in the morning in addition to the medications required to fight the brain tumor!

Relapse #8: One More Battle to be Won

Just after her 14th birthday in mid-February, Lexy and her family were given the devastating news that “Goomer” is not responding to the vaccine-based experimental therapy. Neurosurgeons across the country agree that the tumor is now inoperable. Because the tumor has engulfed the blood vessels feeding both the tumor and the brain, surgeons would be unable to differentiate between the vessels and the tumor, making the surgery exceedingly dangerous. Oncologists also agree that radiation therapy would almost certainly lead to leukemia and/or other secondary cancers due to her NF1 diagnosis.

11947867_485465818297250_7640459903540792984_oAt this time, Lexy and her family are facing another experimental treatment known as Intra-Arterial Chemotherapy. During this treatment, which would be administered in the hospital every four weeks, a custom-tailored cocktail of chemotherapy drugs will be aimed directly at the tumor through a long catheter that enters the body at the groin. This new treatment has shown some success for both adults and children, yet still presents significant challenges for Lexy and her family.

In order to design an effective (hopefully) chemotherapy regime, Lexy’s oncology team has compiled a comprehensive analysis of every single drug administered to Lexy over her 13 years of treatment to identify the ones which Lexy’s tumor has responded to in the past. Unfortunately, during a prior round of chemotherapy, Lexy had a severe and dangerous allergic reaction to one of the two drugs that is generally believed to be most effective during Intra-Arterial Chemotherapy. Therefore, Lexy must rely solely on a 40-year-old drug known as Melphalan, which, due to its extreme toxicity, is usually only administered to adults and/or older teens, or in cases of last resort. This is a dramatic example of the desperate need for development of new, less toxic treatments options specifically designed for childhood cancer and the unique needs of children’s growing bodies.

13620709_10208634596615156_6496852900457048797_nYet Lexy and her family absolutely refuse to give up and will continue to pursue every available treatment option until they find the one that finally defeats “Goomer”. As Lexy herself says, “I can’t let Goomer win!” Throughout her long fight, she has been supported by her amazing family, especially by her 17-year-old brother, Cameron, whose life, like the lives of so many childhood cancer siblings has been interrupted and disrupted as much by childhood cancer as his sister, yet who continues to stand and fight right by her side; he is Lexy’s Hero as much as she is his Hero!

Lexy’s courage and determination are truly an inspiration to us all. Thank you for speaking out about childhood cancer, for sharing your story with us, and for serving as an inspiration to other childhood cancer warriors. We know you are going to kick Goomer’s booty, Lexy! 

Please visit Lexy on her Facebook page at: https://www.facebook.com/Love4Lexy/

About American Childhood Cancer Organization

American Childhood Cancer Organization (ACCO) is a non-profit charity dedicated to helping kids with cancer and their families navigate the difficult journey from cancer diagnosis through survivorship. Internationally, ACCO is the sole U.S. member of Childhood Cancer International (CCI), the largest patient-support organization for childhood cancer in the world. Here in the United States, ACCO promotes the critical importance of ensuring continued funding into new and better treatment protocols for childhood cancer. And most importantly, ACCO is focused on the children: developing and providing educational tools for children fighting cancer and their families, empowering them in their understanding of childhood cancer and the medical decisions they must make during this difficult journey. All of ACCO’s resources are available free of charge for families coping with childhood cancer.

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

Gold Ribbon Hero Makahla D

“Reason this person is a Gold Ribbon Hero: Makahla is 6 years old and is fighting Acute Lymphoblastic Leukemia. She was diagnosed on Feb 28, 2017 and has been so strong tough everything so far! She can make anyone smile even on her bad days! She’s got a long road ahead of her but she’s going to keep fighting to bet this nasty cancer!” – Ashley D

 

 

Makahla D

Childhood Hodgkin Lymphoma Disease: Risk Factors and Prevention

Childhood Hodgkin Lymphoma Disease: A brief introduction

Image result for Childhood HodgkinChildhood Hodgkin lymphoma, similarly to adult Hodgkin lymphoma, is a type of malignant cancer of the lymph system, which forms a critical part of the immune system our bodies use to fight disease. Specifically, Hodgkin lymphoma usually begins in lymphocytes, a type of white blood cell responsible for fighting bacteria, viruses, and other foreign invaders. Hodgkin lymphoma makes up about 6% of all childhood cancers. Today, the prognosis for children with Hodgkin lymphoma is significantly higher than even a decade ago, with the five-year survival rate between 90-95%.

Risk Factors for Childhood Hodgkin Lymphoma

A “risk factor” is anything that increases the odds of developing a disease such as cancer. For example, smoking is defined as a risk factors for lung cancer. Unlike many adult cancers, childhood cancers are rarely, if ever, linked to specific risk factors, especially lifestyle choices. Childhood Hodgkin lymphoma does have several identified risk factors. It is important to note, however, that not all children with these specific risk factors develop Hodgkin lymphoma, nor can most cases of Hodgkin lymphoma be traced to these risk factors. As with all childhood cancers, the cause of Hodgkin lymphoma is unknown.

Generally speaking, infection with one of two viruses known to cause immunodeficiency—Human immunodeficiency virus (HIV), the virus that causes AIDS, and the Epstein-Barr virus—are considered to be risk factors for childhood Hodgkin lymphoma. Scientists and researchers are unclear as to why there appears to be a link between Epstein-Barr and Hodgkin lymphoma.

Other risk factors for childhood Hodgkin lymphoma include:

  • Age: Hodgkin lymphoma is more common in teens and young adults than in younger children
  • Gender: more girls than boys develop Hodgkin lymphoma during adolescence, but in young children, boys are significantly more likely to develop this form of cancer than girls
  • Family history: siblings, especially identical twins, have a slighter higher risk for Hodgkin lymphoma, although most children with Hodgkin lymphoma do not have a family history
  • Socioeconomic status: children from a higher socioeconomic background have a slighter higher risk of developing Hodgkin lymphoma, although the link is unknown. Some research speculate that children from more affluent families are more likely to contract Epstein-Barr.

Can Childhood Hodgkin Lymphoma Be Prevented?

Because the development of childhood Hodgkin Lymphoma is not linked to lifestyle factors that can cause some adult cancers, there is no known way to prevent childhood Hodgkin lymphoma. The one exception relates to the potential development of Hodgkin lymphoma as a secondary cancer stemming from treatment of a different form of childhood cancer with radiation therapy and/or chemotherapy. However, for children battling cancer, each child’s oncology team must weigh the need for intensive treatment to fight the primary cancer with the risk of causing secondary cancers and/or other long-term health problems. As with all childhood cancers, this exception highlights the critical need to develop new, more effective, and less toxic treatment options designed specifically for kids with cancer.

About American Childhood Cancer Organization

American Childhood Cancer Organization (ACCO) is a non-profit charity dedicated to helping kids with cancer and their families navigate the difficult journey from cancer diagnosis through survivorship. Internationally, ACCO is the sole U.S. member of Childhood Cancer International (CCI), the largest patient-support organization for childhood cancer in the world. Here in the United States, ACCO promotes the critical importance of ensuring continued funding into new and better treatment protocols for childhood cancer.  And most importantly, ACCO is focused on the children: developing and providing educational tools for children fighting cancer and their families, empowering them in their understanding of childhood cancer and the medical decisions they must make during this difficult journey. All of ACCO’s resources are available free of charge for families coping with childhood cancer.

For additional information about childhood cancer or on the ACCO, or to order resources for you or your child, please visit our website at www.acco.org , call 855.858.2226 or visit:

Gold Ribbon Hero Rainin Day

17629852_1305213216237690_2670304188138455941_nRainin’s Battle Against Alveolar Rhabdomyosarcoma

Rainin was diagnosed with Stage 4 Alveolar Rhabdomyosarcoma on January 13, 2016 at the age of 6. Rhabdomyosarcoma, or RMS for short, is a type of cancer that develops from skeletal muscles, or the muscles that we voluntarily control during movement (unlike the smooth and cardiac muscles of our internal organs that move involuntarily). ARMS, or Alveolar Rhabdomyosarcoma, is a sub-type of RMS that tends to develop in the larger muscles of the trunk, arms, or legs. The name “Alveolar” comes from the growth of smaller, rounder, and denser tumors that appear to resemble the small air sacs found in the lungs.

RMS is extremely rare, making up only about 3% of all childhood cancers. Approximately 350 children are diagnosed with RMS each year. ARMS is even rarer, occurring in only 20-25% of all RMS diagnoses. Unfortunately, ARMS is also the most aggressive form of RMS. Because it grows more quickly than other forms of RMS, it is generally considered a “high risk” form of childhood cancer. At the time of diagnosis, Rainin’s aRMS was “Stage 4”, requiring an aggressive treatment approach combining surgery, radiation therapy, and chemotherapy. Rainin underwent six weeks of radiation and nine months of chemotherapy. He completed treatment in October 2016.

16797382_1259416594150686_1960588434710900247_oNo Time for Vacation: Immediate Relapse

Rainin and his family had only a short time to celebrate after his initial remission. Within a month of completing treatment, Rainin’s family was told that the tumors had metastasized (spread) to his abdomen and spine. In January, he began yet another round of intensive chemotherapy and radiation. This new round of treatment was expected to last for another nine months. By mid-February, the quickly growing tumors had begun to damage his bladder and kidneys. While initial scans showed that the chemotherapy was having some impact, it now appears that the tumors are simply growing too quickly for even intensive traditional therapy to keep up. Rainin’s family has sought alternative treatments and are still hopeful that these will lead to recovery.

Sadly, Rainin’s story is all-too-common for children diagnosed with this aggressive form of cancer. For children like Rainin with “High Risk” tumors, there is overwhelming concern about metastasis even when, as in Rainin’s case, the original tumors are controlled with traditional treatment. Oncologists and researchers continue to search for novel treatment approaches that will more successfully reduce the occurrence of relapse and more effectively target the new tumors once they do appear.

Raining’s family was told that their only option currently is palliative care undergoing radiation therapy, which at the very least has improved his kidney function, but his family has sought alternatives and is hopeful that Rainin will recover and one day be cancer free! We ask you to join with us in sending Rainin and his family courage, strength, and prayers in this most difficult time. Rainin is truly a childhood cancer warrior and a Gold Ribbon Hero.

17458326_1294113937347618_8703095765743266482_nHelp Rainin Take a Vacation!

We would like to take a few minutes today to ask you to help send Gold Ribbon Hero Rainin on a “virtual vacation”! Rainin, a seven-year-old boy from Washington State, has been bravely battling Stage 4 Alveolar Rhabdomyosarcoma (aRMS) since January 2016. Rainin’s aRMS relapsed in November and he began a second round of radiation and chemotherapy in January 2017. Although Rainin’s oncology team now believes that the tumors growing in his back and spine are not responding to treatment and palliative radiation has helped restore his kidney function, Rainin’s treatment options are very limited at this time, but his family has started alternative treatments hopeful for Rainin’s recovery!

Raining would love nothing more than to travel the world and currently, with your help he can still use his imagination to visit special places around the world. Can you help? Help Rainin enjoy a “virtual vacation” by sending him pictures and postcards of special places you have visited! Choose your favorite place or send Rainin to several places around the world: the choice is yours!

To email your pictures, please send them to cperry@americanchildhoodcancer.org or post them to our Facebook page using the hashtag #Rainin’sVacation.

To mail Rainin a postcard, please address it to:

Rainin Day
2908 E 27th Street
Vancouver Washington 98661

About American Childhood Cancer Organization

American Childhood Cancer Organization (ACCO) is a non-profit charity dedicated to helping kids with cancer and their families navigate the difficult journey from cancer diagnosis through survivorship. Internationally, ACCO is the sole U.S. member of Childhood Cancer International (CCI), the largest patient-support organization for childhood cancer in the world. Here in the United States, ACCO promotes the critical importance of ensuring continued funding into new and better treatment protocols for childhood cancer.  And most importantly, ACCO is focused on the children: developing and providing educational tools for children fighting cancer and their families, empowering them in their understanding of childhood cancer and the medical decisions they must make during this difficult journey. All of ACCO’s resources are available free of charge for families coping with childhood cancer.

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.