Treatment for Childhood Leukemia

Posted on December 20, 2017 by American Childhood Cancer Organization

What is the Treatment for Childhood Leukemia?

The majority of children diagnosed with childhood leukemia will be treated with chemotherapy. Chemotherapy (often simply called “chemo” for short) involves targeting cancerous cells with specific drugs. The specific type of drugs, their dosages, and the duration of the treatment will be unique to each patient, depending on the type and classification of leukemia, the cancer’s classification of risk, and the specific needs of each child. Surgery and radiation are not commonly utilized in the treatment of childhood leukemia, although they may be required to address specific health issues in certain cases. Because chemotherapy can have significant short- and long-term health effects on childhood leukemia survivors, researchers are continuing to investigate new and less toxic treatments such as immunotherapy and targeted chemotherapy; however, these treatments are still in the research phase.

Because AML and ALL are the two most common types of childhood leukemia, this discussion will focus specifically on their treatment.

Chemotherapy for ALL

Treatment for children with Acute lymphocytic leukemia (ALL) usually involves smaller dosages of chemotherapy but spread over a period of two-to-three years (boys often receive treatment for longer than girls, due to a higher risk of recurrence). For most children with ALL, chemotherapy will involve three distinct phases:

Induction: The goal of induction is to kill 99% of existing cancer cells and achieve “remission”, in which no cancer cells are found in the bone marrow and blood counts return to normal (this is not, however, the same as a “cure”). Induction usually lasts about one month and is extremely intense, requiring prolonged hospital stays and frequent visits to the doctor. Induction almost always includes intrathecal chemotherapy, in which the chemotherapy is targeted at the cerebrospinal fluid to kill any cancer cells that may have spread to the brain and/or spinal column.
Consolidation (intensification): This phase usually lasts for 1-2 months and is designed to reduce the number of cancer cells remaining in the body, as well as fight the potential for drug resistance among those cancer cells. This phase is also highly intense (often more so than induction).
Maintenance: About 95% of children with ALL will achieve remission after induction and consolidation. For these children, an additional 2 years of so-called maintenance chemotherapy will help prevent the disease from recurring. Maintenance is much less intensive, and usually involves the administration of chemotherapy for brief periods every 4-8 weeks. The early part of maintenance may involve 1-2 months of intensified treatments called re-induction or delayed intensification.

Chemotherapy for AML

Chemotherapy for AML is more intensive, involving higher dosages of treatment drugs but over a shorter duration. Chemotherapy for AML includes an induction phase and a consolidation (intensification) phase, but usually lacks a maintenance phase.

Induction: Induction for AML usually involves the administration of drugs for several days in a row, with treatments scheduled every 10-14 days. Less time between treatments is generally more effective but can lead to more severe side effects. Each treatment plan will depend on the child’s unique disease progression and their reaction to the chemotherapy. Treatment will continue until the bone marrow is clear of leukemia cells, usually after 2-3 treatment cycles. As with ALL, treatment usually involves intrathecal chemotherapy as well.
Consolidation (intensification): Between 85-90% of children with AML will achieve remission after the induction phase. Consolidation usually involves several more months of intensive chemotherapy, as well as intrathecal chemotherapy. In some cases, a stem cell transplant from a sibling may be appropriate as well, especially for children with high risk AML.

Although the duration of treatment is shorter for AML, it requires extensive supportive care and attention to ancillary issues such as nutrition, medication, and blood transfusions to cope with the more severe side effects, including (but not limited to) damage to the bone marrow responsible for creating new blood cells.

More about Childhood Leukemia 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

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:

Signs and Symptoms of Childhood Leukemia

Posted on December 18, 2017 by American Childhood Cancer Organization

About Childhood Leukemia (ALL & AML)

Childhood leukemia—a blood-based cancer in which abnormal cancer cells grow in the bone marrow—is the most common type of childhood cancer, accounting for almost one-third of all childhood cancer diagnoses. There are three different types of childhood leukemia. The most common type—Acute lymphocytic (lymphoblastic) leukemia, or ALL, accounts for approximately 3 out of 4 cases of childhood leukemia. ALL stems from abnormal cells growth in immature lymphocytes, the white blood cells that help the body fight infection. Acute myelogenous leukemia (AML) accounts for about one out of four cases of childhood leukemia. AML begins with abnormal growth of myeloid cells, which are responsible for the development of non-lymphocytic white blood cells, red blood cells, and platelets. A third type of childhood leukemia—Juvenile myelomonocytic leukemia (JMML)—is extremely rare. Like AML, it develops in the myeloid cells. It is acute (quickly growing) but it does not develop and spread as quickly as AML or ALL.

Symptoms of Childhood Leukemia

Childhood leukemia begins in the bone marrow (the soft core within the bone responsible for the development of blood cells, including red blood cells, white blood cells, and platelets), quickly spreading into the blood stream and potentially crowding out healthy cells our body needs to properly function. Once in the blood stream, cancer cells begin to travel throughout the body and can impact the health of other organs. The symptoms of leukemia often depend on the type of blood cell impacted by the cancer, and whether the cancer has begun to impact other organs.

Red blood cells: Red blood cells are responsible for carrying oxygen from the lungs to every cell in the body. If childhood leukemia has caused a shortage of healthy red blood cells, symptoms can include:

Unusually pale skin
Fatigue
Weakness
Shortness of breath
Headaches
An unusual sensation of cold
Feeling lightheaded or dizzy

White blood cells: White blood cells help the body fight off illness caused by viruses and/or bacteria. If childhood leukemia has caused a shortage of white blood cells, or prevents the white blood cells from functioning properly, your child may not be able to fight infection properly. Recurring infections or infections that won’t go away even with medical intervention may indicate the presence of leukemia. Fever is usually the main indicator of an infection.

Platelets: Platelets are responsible for helping create blood clots in order to control and stop bleeding. If childhood leukemia has caused a shortage of platelets, symptoms can include:

Easy and frequent bruising
Easy bleeding
Frequent and/or severe nosebleeds
Bleeding gums

As childhood leukemia spreads from the blood stream into various other organs of the body, it can cause symptoms relating to specific organs, including:

Bone or joint pain
Swollen lymph nodes
Swelling in the abdomen caused by the build-up of cancer cells in the liver and/or spleen
Weight loss/loss of appetite caused by swelling abdominal organs pressing on the stomach
Coughing or trouble breathing caused by the build-up of cancer cells near or in the lungs
Headaches, seizures, vomiting, loss of balance, and blurred vision could be indications that leukemia cells have begun to accumulate in the brain and spinal cord
Swelling of the face and arms—SVC syndrome—a potentially very serious symptom caused by the build-up of cancer cells in the thymus, leading to pressure on the blood vessel moving blood between the head and arms
Symptoms more common in children with AML include skin rashes, gum problems (swelling, pain, and bleeding), extreme weakness, extreme tiredness, and slurring of speech

With the exception of serious symptoms such as SVC syndrome and the extreme fatigue and weakness sometimes (although rarely) seen in patients with AML, the most common symptoms of childhood leukemia are also symptoms of many routine childhood illness. Childhood leukemia is a very rare disease, and the presence of one or more of these symptoms does not mean that your child has leukemia. However, it is important to have your child examined by a pediatrician, who will suggest additional diagnostic testing if he or she suspects that the symptoms may be related to childhood leukemia.

Request for free resources here.

More about Childhood Leukemia Cancers:

Gold Ribbon Hero – Kendra Sparby

Posted on August 24, 2017 by American Childhood Cancer Organization

Introducing ACCO Gold Ribbon Hero, Ms. Kendra Sparby

Today’s Gold Ribbon Hero is Ms. Kendra Sparby, an outstanding young woman from Minnesota committed to making a difference in the lives of children battling childhood cancer! A recent high school graduate and incoming freshman at the University of Minnesota Duluth, Ms. Sparby has been actively advocating on behalf of American Childhood Cancer Organization and kids with cancer for several years now, hosting numerous PJammin® parties at local schools, selling ACCO PediCURE kits, and raising money online in support of ACCO’s mission to develop and provide, free of charge, educational resources and learning tools to families facing a childhood cancer diagnosis.

Many of our Gold Ribbon Heroes are the courageous and amazing kids fighting childhood cancer and the late effects that impact the lives of all-too-many childhood cancer survivors. Yet it is so important to highlight and celebrate Heroes like Kendra, who volunteer their time and energy to improve the lives of kids with cancer. If you would like to nominate a Gold Ribbon Hero in your life—someone who has gone out of their way to help, support, and/or advocate for children with cancer in your community—please visit ACCO’s website to complete a nomination form.

Why Childhood Cancer?

Kendra’s drive to advocate for kids with cancer began in middle school when her friend Grace Woods was diagnosed with cancer in seventh grade. To support Grace during her fight against cancer, Kendra began selling t-shirts at local high school football games. Unfortunately, Grace lost her fight with cancer on September 4, 2015 at the age of 16. Yet Kendra’s determination to honor Grace’s memory and continue fighting on behalf of all kids with cancer only grew stronger!

As an advocate and ambassador for ACCO, Kendra now travels to local schools to host PJammin® events and mini-class PJammin® parties. A signature fundraising mechanism for ACCO, these events also serve to teach kids and adults alike about the impact of childhood cancer on families facing this terrible disease. For instance, participants in PJammin® events wear PJs to symbolize the days, weeks, and even months that kids battling cancer spend in hospital wards wearing PJs or hospital gowns. In addition to hosting PJammin® events, Kendra has sold more than 80 PediCURE kits. Kendra’s other fundraising initiatives include a 12-12-12 Challenge which encourages participants to participate in 12 days of physical activity (with 12 exercises each day) OR donate $12 to ACCO, or even do both to honor the 12,000 children who lose their lives to cancer every year.

In 2016, Kendra raised $1,100 for ACCO and she is hoping to raise a similar amount this year. And she is well on her way to achieving this incredible goal: since February, she has already raised $980! If you would like to make a donation to Kendra’s fundraiser, we invite you to do through her fundraising page at https://give.acco.org/campaign/kendra-sparby/c122630.

About Kendra

Kendra graduated from high school in May 2017 and will attend the University of Minnesota Duluth in the fall, where she hopes to major in biology. She is an active and talented figure skater, and is a double gold medalist with the US Figure Skating Association. She hopes to compete as part of the University of Minnesota’s synchronized skating team.

Kendra is also a successful participant in the Miss America Organization. As the 2016 Miss Heart of the Lakes Outstanding Teen, she placed in the top five in this year’s Miss Minnesota pageant! This is the culmination of a very successful pageant career, having previously won Miss Princess Altona in 2013, Miss Moorhead’s Outstanding Teen in 2014, and Miss Heart of the Lakes Outstanding Teen in 2015. Kendra has used her success in the Miss America Organization to highlight the critical need to raise awareness about childhood cancer and advocate on behalf of children fighting cancer across the country.

We would like to take this opportunity to thank Kendra for her amazing work on behalf of ACCO and kids with cancer!

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 Korbyn M

Posted on June 26, 2017 by American Childhood Cancer Organization

Incredible Strength and Courage

“Reason this person is a Gold Ribbon Hero: I think my grandson is a Gold Ribbon Hero because from the time he was diagnosed with high risk ALL at 9 months until present day, 32 months old, Korbyn has displayed incredible strength and courage. As his grandmother, I am amazed how he has endured the treatments he has received – countless rounds of chemo, clinical trial chemo, weekly central lines bandage changes, radiation and a bone marrow transplant. Sadly, none of this treatment has kept Korbyn’s cancer away. We are all thankful Korbyn was accepted for a clinical trial at CHOP for CAR T cell therapy. Korbyn and his parents will travel from their Oviedo, FL home to Pennsylvania in July and will be there for 6 weeks for treatment. Korbyn never met a stranger and puts a smile on the nurses, techs, doctors faces day in and day out. There is nothing sweeter then his smiling face, blowing kisses and giving bear hugs, never waivering his dynamic personality. I tell anyone who will listen, Korbyn is my hero. We would love for you to follow Korbyn on this next adventure on his facebook page, KORBYNS KOURAGE. Please feel free to share and follow.” – Cindy R.

Washington Post: Parents of sick kids try to remind Congress what the health-care debate should be about

Posted on June 23, 2017 by American Childhood Cancer Organization

By Washington Post Columnist – Petula Dvorak

Washington post sick kids try to remind Congress what the health-care debate

“Is she okay?” the startled legislative staffer asked, eyes shifting to the adults around him as the trach tube protruding from the neck of a 2-year-old gurgled.In the air-conditioned, marble halls of Congress, you often hear the click of heels as staffers rush from room to room or the booming voices of our nation’s representatives making a pitch for some legislation. You do not hear the gurgle of a trach tube. Until this week. “Let me just suction,” one mom said as a blue-suited staffer’s eyes widened at the strange sounds coming from the toddler in pigtails. “We could see it in their eyes, most of them have never seen a child with a trach tube,” said Elena Hung, one of the moms who on Tuesday walked the halls pushing her child’s giant medical rig, showing Capitol Hill folks the actual kids their wheeling, dealing, backroom bargaining and political gamesmanship will affect in the repeal and replacement of the Affordable Care Act.

[What the Senate bill changes about Obamacare]

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.

**THEN PLEASE SHARE THIS POST**

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

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