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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.