URGENT – TAKE ACTION – TELL YOUR U.S. SENATORS TO KEEP CHILDREN WITH CANCER COVERED!

Posted on June 23, 2017 by American Childhood Cancer Organization

#KeepUsCovered – Keep Children with Cancer Covered

Take action now using the quick and easy link below and let your U.S. Senators know the healthcare bill proposed yesterday will threaten the lives of children battling cancer. One-third of all children diagnosed with cancer depend on Medicaid. Two-thirds who survive will experience late effects as a result of their cancer diagnosis and initial treatment. Survivors should not be discriminated against receiving long term health care because of their pre-existing cancer condition.

To TAKE ACTION, please CLICK HERE and follow the steps.

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ACTION ITEM DETAILS

Tell your U.S. Senators to ensure the proposed healthcare bill includes critical patient protection provisions on gap coverage and pre-existing conditions, maintains the Medicaid safety net for children with cancer, and reduces out-of-pocket costs or VOTE ‘NO’. They must not accept a healthcare bill that will threaten the lives of these precious children.

Thank you for your help protecting our nation’s childhood cancer warriors! …because kids can’t fight cancer alone!®

Take action now using the quick and easy form below and let your U.S. Senators know the healthcare bill proposed today will threaten the lives of children battling cancer. One-third of all children battling cancer depend on Medicaid. Children and families affected by childhood cancer have gone through enough without the threat of losing coverage for the medical treatments required to save their lives.

The American Childhood Cancer Organization (ACCO), founded in 1970, is the largest grassroots childhood cancer non-profit in the U.S. On behalf of the hundreds of thousands of childhood cancer families, patients and survivors represented, we ask that you join us in urging the U.S. Senate to amend their healthcare policy to ensure affordable, accessible, and quality healthcare for our nation’s littlest cancer patients — or vote “NO” when the new healthcare bill comes for a vote in the next few days.

MEDICAID QUALITY AND ACCESS FOR CANCER PATIENTS JEOPARDIZED

Research conducted by ACCO over a span of more than 10 years confirms that approximately one-third of all children treated for cancer in the U.S. relied on Medicaid for their insurance coverage. If a healthcare bill is enacted as passed by the U.S. House of Representatives (the American Health Care Act), the Congressional Budget Office (CBO) May 24, 2017 brief predicts Medicaid funding will be cut by a resounding $880 billion over the next 10 years, out-of-pockets costs including copays, premiums and deductibles will rise, and the number of uninsured individuals including children will increase.

PATIENT PROTECTION PROVISIONS AND ESSENTIAL HEALTH BENEFITS MAY BE WAIVED

Surveys conducted with families of children with cancer and childhood cancer survivors continue to tell us patient protection provisions matter. We are very concerned that under the healthcare bill key patient protection provisions are in jeopardy. Key survey data included:

9 out of 10 respondents believe the prohibition on lifetime and annual caps on coverage is important;
9 out of 10 respondents believe that the prohibition on preventing denial of coverage for preexisting health conditions is important;
7 out of 10 respondents believe that it is important for dependent children to receive healthcare coverage until the age of 26.

As the CBO summarized, the AHCA version passed by the House currently falls short in ensuring that patients and survivors (including childhood cancer patients and survivors) will be able to access affordable health care insurance that will provide them with the quality care needed to treat and cure their cancer diagnosis.

Under the current plan, states could allow pre-existing condition exclusions by applying for a federal waiver allowing insurance plans to medically underwrite people who experience a gap in coverage of more than 63 days. ACCO’s research shows that approximately 45% of families of children with cancer will face a potential gap in coverage as one parent often must stop working or cut their work by 50% in order to care for their child.

Maintaining essential health benefits for our country’s sickest and smallest citizens is critical. However, in addition to the waiver allowing medical underwriting for people experiencing gaps in coverage, the proposed healthcare bill also allows states to waive these essential benefits insurers are currently required to provide allowing them to potentially opt out of the most expensive services our sickest patients need. The proposed law also allows lifetime and annual limits on services to be imposed; pricing children and families out of life-saving treatments and into financial turmoil and even bankruptcy.

Our families have indicated that even with current coverage, caring for a child with cancer has long-lasting financial devastation on the family. Twenty-four percent of respondents noted annual out-of-pocket costs of cancer treatment for their child was between $5,000 and $10,000, while 18% stated they had incurred more than $10,000 in out-of-pocket expenses each year. Nearly 40% of respondents indicated their family incurred “considerable” debt as a result of their child/teen’s cancer diagnosis, with an additional 14% rating the debt as “severe.”

SUMMARY

In summary, we believe the following changes must be made to the healthcare bill:

The reduction in funding of the Medicaid program must be eliminated to ensure ongoing coverage and reduction of out-of-pocket costs associates with copays, deductibles, and premiums for the one-third of childhood cancer patients who depend on Medicaid for a cure of their disease.
Patient protection provisions ensuring patients can obtain affordable coverage after a lapse or gap must be included.
Insurers must be required to continue to provide essential health benefits to childhood cancer patients without lifetime and annual limits on services.

Unless the above amendments can be made, we are urging all Senators to vote “NO“.

Treating Childhood Hodgkin Lymphoma Disease

Posted on June 13, 2017 by American Childhood Cancer Organization

Treating Childhood Hodgkin Lymphoma

Childhood Hodgkin lymphoma has proven to be particularly sensitive to both chemotherapy and radiation therapy. Therefore, for most children diagnosed with this type of childhood cancer, treatment will likely involve some combination of both modalities. Surgery is rarely ever used to remove Hodgkin lymphoma tumors, although surgical procedures may be required to facilitate chemotherapy and radiation therapy protocols. The exception to this general rule may be found in the treatment of some cases of localized lymphocyte-predominant Hodgkin lymphoma, where surgery may prove a more effective course of treatment than chemotherapy and/or radiation.

Both chemotherapy and radiation therapy can have severe and long-lasting health effects (so-called “late effects”). Therefore, the goal of your child’s treatment plan will be to attempt to create a delicate balance between enough treatment to eliminate the cancer and prevent the growth of new cancer cells and minimizing both short- and long-term damage to your child’s growing body. Moreover, the oncology team will also consider your child’s age and medical history, as well as the “stage” of the disease (how far the disease has progressed and spread from the site of the original tumor), whether diagnosis occurred with so-called “B” symptoms (fever, night sweats, and/or unexplained weight loss), and an assessment of risk.

Thus, the description of treatment options below are generalized and for informational purposes only; your child’s treatment course, including intensity and duration, will likely be a unique combination of these or other options depending on the unique factors in your child’s case.

Chemotherapy for Childhood Hodgkin Lymphoma

Chemotherapy involves targeting cancer cells with toxic drugs designed to kill the cells as they replicate and divide. Because cancer cells grow, replicate, and divide more quickly than normal, non-diseased cells, they are more susceptible to the harmful effects of the drugs than are healthy cells. Still, healthy cells are affected by chemotherapy as well, leading to both short- and long-term health effects. Moreover, different types of chemotherapy agents can have different types of short- and long-term health effects. Therefore, your child’s chemotherapy protocol will likely involve a combination of different drugs given in as low dosages as possible.

Most chemotherapy protocols for childhood Hodgkin lymphoma will involve some unique mixture of three standardized drug combinations:

ABVD (the most common treatment protocol for adult Hodgkin lymphoma):
Adriamycin^® (doxorubicin)
Bleomycin
Vinblastine
Dacarbazine (DTIC)

BEACOPP
Bleomycin
Etoposide (VP-16)
Adriamycin (doxorubicin)
Cyclophosphamide (Cytoxan^®)
Oncovin^® (vincristine)
Procarbazine
Prednisone

Stanford V
Doxorubicin (Adriamycin)
Mechlorethamine (nitrogen mustard)
Vincristine
Vinblastine
Bleomycin
Etoposide
Prednisone

Radiation Therapy

Radiation therapy works by targeting cancer cells with high-energy beams, usually composed of x-rays or protons. The beams of energy damage the DNA inside the cancer cells and prevent it from replicating itself. In most cases of childhood Hodgkin lymphoma, the preferred method of treatment is a combination approach incorporating both radiation therapy and chemotherapy. By combining both treatment modalities, the goal is to effectively reduce the size of the tumor and prevent the growth of new cancer cells while minimizing the risk of both short- and long-term side effects.

As with chemotherapy, radiation damages healthy cells as well as cancerous cells. For young adults who are past puberty and have stopped growing, radiation therapy may play a more substantial role in treatment for childhood Hodgkin lymphoma than chemotherapy. However, because the bodies of younger children are still growing and developing, the risk of long-term damage from radiation therapy is greater. Therefore, chemotherapy is the preferred method of treatment, with radiation generally used as a supplemental treatment designed to prevent the cancer from recurring.

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:

Dad Goes Fishing for Greater Awareness

Posted on June 10, 2017 by American Childhood Cancer Organization

A Gold Ribbon Hero Dad Goes Fishing for Greater Awareness!

In celebration of Father’s Day, we would like to take a few minutes to introduce Gold Ribbon Hero Thomas “TA” Tucker, the proud father of childhood cancer warrior Harley and now a dedicated childhood cancer advocate. An avid bass fisherman, TA has created a unique and incredible decoration for his fishing boat that showcases the gold ribbon symbolizing childhood cancer as well as his family’s childhood cancer motto: #HARLEYSTRONG. Now, he is taking his message on the road, or should we say…on the water…to spread awareness about childhood cancer and the need for new and better treatment options for this rare and devastating disease!

ACCO is so excited to share the Tucker family’s story with you and help TA on his mission to raise awareness about childhood cancer: what it means for children, what it means for parents, and what it means for families. TA is exactly the kind of advocate kids with cancer need today, and we hope his enthusiasm and dedication will inspire you this Father’s Day.

TA Tucker, Childhood Cancer Advocate

When his daughter Harley was diagnosed with a rare form of childhood cancer—Rhabdomyosarcoma—in January 2015, TA was devastated. “I couldn’t believe when my daughter was diagnosed with cancer. The feeling I had was unexplainable, and I’m sure that’s how every parent feels.” As TA and his wife began the difficult task of guiding Harley through treatment, he was disappointed and frustrated with the lack of innovative, more effective and less toxic treatment options for Rhabdomyosarcoma and other forms of childhood cancer. As TA states, “Children are the future of America and I feel the majority of funding for research should go towards saving our children.”

Unwilling to simply sit back and do nothing, TA has made it his mission to do what he can to raise awareness about childhood cancer and the need for greater investment in finding better treatments—and cure—for all types of childhood cancer. So, he decorated his bass fishing boat with the gold ribbon symbol for childhood cancer and is taking it—and his message of awareness—on tour throughout the Southeast United States!

Harley’s Story With Rhabdomyosarcoma Cancer

To understand TA’s dedication to this critical cause, we celebrate Harley as well! Harley was diagnosed with rhabdomyosarcoma in January 2015, at the age of six. While preparing for a previously scheduled surgery on her nose and sinuses, the surgical team quickly realized that there was a problem. An emergency MRI revealed a tumor growing between her eyes and nose, pressing on the optic nerve.

Rhabdomyosarcoma is the most common soft tissue cancer in children and accounts for about 3% of all childhood cancers, with approximately 350 new diagnoses every year in the U.S. Rhabdomyosarcoma develops in cells that normally grow into skeletal muscles. As in Harley’s case, rhabdomyosarcoma commonly begins in the head and neck area (near the eye, nasal sinuses, throat, or spine), but it can also grow in the urinary and reproductive organs, the arms and legs, as well as the chest or abdomen.

Traditional treatment for rhabdomyosarcoma includes radiation therapy and chemotherapy, and if possible, surgery to remove the tumor. Luckily, Harley’s tumor responded to radiation therapy and began shrinking immediately! After six weeks of intensive radiation therapy, Harley celebrated her final radiation treatment on March 3, 2015. Chemotherapy continued for several more months, but Harley was able to celebrate her final chemotherapy treatment in November 2015. Regular scans show that 18 months later, she is still NED!

TA and His Boat on Tour for Greater Awareness

Working with Balance Graphics in Charleston, WV and ACCO’s graphic designer, TA developed a truly unique and distinctive branding for his bass fishing boat by incorporating the gold ribbon and the ACCO trademarked logo …because kids can’t fight cancer alone!® And of course the decoration also features the logo the Tucker family used during Harley’s treatment: #HARLEYSTRONG. TA currently plans to use his boat in bass fishing tournaments throughout West Virginia, Virginia, North and South Carolina, Kentucky, Tennessee, Georgia and possibly as far as Florida. At every stop, during every tournament, TA’s message of awareness will be prominently visible. He hopes that it will encourage people to ask questions, learn about childhood cancer and join in the fight to encourage and stimulate the development of more effective and less toxic treatments for childhood cancer.

On this Father’s Day, ACCO is very excited to partner with this amazing Dad and help him bring his vision and mission to life! TA’s enthusiasm, determination and love will surely carry his message of awareness about childhood cancer far and wide.

About American Childhood Cancer Organization

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 Eli

Posted on June 9, 2017 by American Childhood Cancer Organization

A Few Minutes Out of Your Day Will Mean the World to Gold Ribbon Hero Eli!

One of our Gold Ribbon Heroes, a brave childhood cancer warrior from West Virginia, is in desperate need of a show of support.

**UPDATE** – We are asking you to take a few minutes out of your day to send a card, letter, or fan mail to our Gold Ribbon Hero Eli! Thirteen-year-old Eli is currently in and out of the hospital while fighting a brain tumor. Eli’s treatment has been as aggressive as the tumor, and has recently led to a number of traumatic set-backs. Receiving cards and fan mail is just one small, but important step we can take to show this brave young man that he has our support during this very difficult time.

Please, show your support for Eli and his family by sending Eli fan mail at:

Eli Clark c/o Room 12A018
Nationwide Children’s Hospital
700 Children’s Drive
Columbus, Ohio 43205

It takes just a few minutes to select a card, write a few kind words, and pop it in the mail, but it will mean so much to this special childhood cancer warrior!

Eli’s Story

Eli’s cancer journey began just before Christmas 2016. While playing Peter Cratchet in a local production of Scrooge the Musical (Eli wants to be an actor someday!), Eli suddenly began to vomit. The unexplained vomiting continued through the holiday season, and despite “a mother’s instinct” telling her it was something more serious, Eli’s family first accepted the pediatrician’s explanation that it was likely related to diet or a stomach bug.

By January, however, when the sickness didn’t go away, Eli’s family felt they needed a second opinion and made an appointment with a gastrointestinal specialist in Ohio. A preliminary MRI revealed the worst possible news: a golf-ball sized tumor was growing in Eli’s brain and smaller tumors were spreading down Eli’s spine. Surgery was scheduled immediately. During a 13-hour surgery on January 20, Eli’s surgical team removed 80% of the tumor in his brain. Unfortunately, while in the recovery room after surgery, Eli suffered serious complications requiring another 5+ hours in the operating room to repair damage to Eli’s brain and resulting paralysis on Eli’s left side.

Eli began his initial round of post-surgery treatment on February 20, just before his 13^th birthday. Due to the aggressive nature of Eli’s tumor, his treatment protocol is equally aggressive. The first round, lasting six weeks, involved radiation treatments Monday through Friday, with both chemotherapy and radiation every Friday. Although the radiation treatment is designed to target the tumors as precisely as possible, it has taken a toll on Eli’s young and growing body and has created its own complications, such as temporarily impeding his ability to swallow food. Still, Eli persevered through the difficult treatments and rang the bell celebrating the end of this first round of treatment on March 31!

Eli’s Treatment Continues Despite Serious Setbacks

Unfortunately, Eli’s tumor has not responded to the aggressive treatment as well as his oncology team hoped. Scans in mid-May showed the growth of additional tumors, including one the size of a golf ball. His second round of chemotherapy, which began immediately after the last scan, has led to more serious complications, including a seizure and a stay in the PICU. His oncology team believes that this next round of chemotherapy will last at least another six months.

From the very beginning, Eli has faced his diagnosis and difficult treatment with that very special kind of bravery found in childhood cancer warriors. Throughout his treatment, Eli’s goal has been to make people laugh and instead of complaining, Eli tells jokes to his doctors and nurses! Thanks to a strong network of support from his family and community, along with a strong faith in God, Eli continues to maintain the most positive of attitudes every day of his cancer journey!

Eli has a long, potentially difficult fight ahead of him and encouragement from you will help him get through it with courage and humor! Thanks in advance to those of you who take a few minutes to send a card to Eli to let him know you are supporting him!

About American Childhood Cancer Organization

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 Alejandro A

Posted on June 9, 2017 by American Childhood Cancer Organization

“Reason this person is a Gold Ribbon Hero: This child very brave he has wilm’s tumor February 23, 2017 he has been happy kid. He remain strong even all he is going through even radiation this month with chemo.” – Lupe A

Childhood Hodgkin Lymphoma Disease – Stages and Prognosis

Posted on June 6, 2017 by American Childhood Cancer Organization

Introduction: About Childhood Hodgkin Lymphoma

Childhood Hodgkin lymphoma is a type of cancer that develops in the lymph system, a critical part of the body’s immune system responsible for fighting illness-causing viruses and bacteria. Classical Hodgkin lymphoma is generally characterized by the presence of a particular type of cancer cell known as Reed-Sternberg cells, although a much more rare form of Hodgkin lymphoma known as Nodular lymphocyte-predominant Hodgkin lymphoma is characterized instead by lymphocyte-predominant cells. Childhood Hodgkin lymphoma comprises about 6% of all childhood cancers, and is diagnosed most prevalently in adolescents between the ages of 15-19.

Childhood Hodgkin Lymphoma: Stages

The “stage” of a disease is a method of determining the extent to which the cancer has grown and spread, and plays a critical role in determining the appropriate course of treatment. Staging childhood Hodgkin lymphoma involves three distinct, yet overlapping, categorizations:

A, B, E, and S: Childhood Hodgkin lymphoma is usually described in one of four distinct ways, preliminary to traditional staging:

A: Diagnosis with no symptoms
B: Diagnosis with so-called “B” symptoms: fever, weight loss, and/or night sweats
E: Cancerous cells have been located in an organ or tissue that may be next to, but is not part of the lymph system
S: Cancerous cells have been found in the spleen

I, II, III, and IV: Specific stages of childhood Hodgkin lymphoma incorporate the A, B, E, and S descriptions:

Stage I: Cancerous cells are in one or more lymph nodes, but only one lymph node group. Stage IE involves cancer cells outside the lymph system in one other organ or area of the body.
Stage II: Cancer cells are found in two or more lymph node groups, either above or below the diaphragm. Stage IIE involves cancer cells in one or more lymph node groups above or below the diaphragm and outside the lymph node groups in an adjacent organ.
Stage III: Cancerous cells are in one or more lymph node groups above and below the diaphragm. Stage IIIE involves cancer in lymph node groups above and below the diaphragm and outside the lymph system in adjacent organs. Stage IIIS includes cancer cells in lymph node groups above and below the diaphragm and in the spleen, while Stage IIIE+S involves cancer in lymph node groups above and below the diaphragm, in nearby organs, and in the spleen.
Stage IV: Cancerous cells can be found in the lymph nodes throughout one or more organs, as well as in lymph nodes near those organs, or is in one organ and has spread to lymph nodes far away from that organ, or is in the lung, liver, or bone marrow.

Risk groups: Classical childhood Hodgkin lymphoma is also divided into risk groups depending on the bulk of the tumor(s) (“bulky” tumors are defined as 5 centimeters or larger) and whether the patient has so-called “B” symptoms:

Low risk: Stage I or Stage II with no bulky tumors or “B” symptoms
Intermediate risk: Stage I or II with bulky tumors OR “B” symptoms; OR Stage III or IV with no “B” symptoms
High risk: Stage III or IV with “B” symptoms

Childhood Hodgkin Lymphoma: Outcomes and Prognosis

*Disclaimer: Every case of childhood Hodgkin lymphoma is unique and different. Statistics relating to outcomes and prognosis for Hodgkin lymphoma, such as five-year survival rates, are estimates for informational purposes only. If your child has been diagnosed with childhood Hodgkin lymphoma, his or her oncology team will discuss your child’s prognosis in the specific context of your child’s specific disease and medical history.

In general, childhood Hodgkin lymphoma is considered highly “curable”. This particular form of childhood cancer has been found to be very sensitive to both chemotherapy and radiation therapy, and was, in fact, the first form of cancer to be “cured” with radiation therapy alone or with a combination chemotherapy protocol. As with all childhood cancers, however, the five-year survival rate depends upon the unique nature of each child’s specific disease, the stage of the disease upon diagnosis, and the categorization of risk. For children and adolescents with Stage I or Stage II Hodgkin lymphoma, the overall survival rate is over 90%; however, for children and adolescents with Stage III or Stage IV Hodgkin lymphoma, the overall survival rate may be as low as 70%.

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

More about Childhood Hodgkin Lymphoma Cancers:

Childhood Hodgkin Lymphoma Disease: Detection and Diagnosis

Posted on May 31, 2017 by American Childhood Cancer Organization

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).

There 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.

More about Childhood Hodgkin Lymphoma Cancers:

Learn More About the Different Types of Childhood Cancers:

Childhood Brain Tumor Cancer (Brain Stem Tumors)
Spinal Cord Tumor Cancer
Childhood Neuroblastoma Cancers
Childhood Hodgkin Lymphoma Cancers
Non-Hodgkin Lymphoma Cancers
Wilms tumor (Kidney Tumors)
Rhabdomyosarcoma
Retinoblastoma
Bone cancer (including osteosarcoma and Ewing sarcoma)
Leukemia Cancers: Acute lymphocytic (lymphoblastic) leukemia (ALL) Acute myelogenous leukemia (AML); Juvenile myelomonocytic leukemia (JMML)
Hepatoblastoma (Liver Cancer)
Rhabdoid Tumors

About American Childhood Cancer Organization

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

Posted on May 12, 2017 by American Childhood Cancer Organization

Please Consider Helping Childhood Cancer Families This Mother’s Day

The 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

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.

Eleven 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

Cyndie’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

Over 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

Right 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

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

Posted on May 11, 2017 by American Childhood Cancer Organization

Evan’s Story: Soft Tissue Sarcoma

Evan at Camp Woodruff 2016 just finished chemo in May Evan 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 forever On 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

Throughout 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

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!

Posted on May 9, 2017 by American Childhood Cancer Organization

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”.

Finally, 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!

The 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.

Advocacy 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.