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After Treatment – Living as a Childhood Leukemia Survivor

After Treatment – Living as a Childhood Leukemia Survivor

Living as a Survivor of Childhood Leukemia

IMG_2271There are nearly 5,000 new diagnoses of childhood leukemia every year in the United States, making this so-called “rare” disease the most common type of childhood cancer. In fact, childhood leukemia currently accounts for almost one-third of all childhood cancer diagnoses. Thanks to amazing advances in the efficacy of today’s treatment protocols, the majority of children diagnosed with leukemia today can expect to make a full recovery. The 5-year survival rates for the two main forms of leukemiaAcute lymphocytic (lymphoblastic) leukemia (ALL) and Acute myelogenous leukemia (AML)—are greater than 85% and about 60-70% respectively.

However, achieving remission and then joining the ranks of the “survivors” still requires that children undergo months, even years, of intensive chemotherapy. And despite the amazing advances in chemotherapy, it is still involves powerful drugs that can have serious and severe short- and long-term health risks. Indeed, one of the goals of researchers today is not only to ensure that no child dies of this dreaded disease, but also to find safer and less toxic treatment options. So while families are so focused on the short-term goal of survival, it is important to remain focused on both short- and long-term survivorship issues to help mitigate physical and emotional side effects.

Short Term Survivorship Issues

Perhaps the most critical step in monitoring and maintaining your child’s physical health during the first 2-5 years after treatment is ensuring that your child undergoes routine cancer screenings to watch for a relapse or recurrence of the cancer. These screenings are also useful for monitoring short- and long-term side effects of the chemotherapy. Although the schedule of screenings is different for each child, it usually consists of follow-up visits once a month or so for the first year after treatment, then decreasing in frequency after that. It is unusual for leukemia to return once a child has been cancer-free for 2 years or so, but most oncologists prefer to continue routine monitoring for at least five years.

While many parents are expecting concerns about their child’s physical health to predominate the immediate aftermath of treatment, most are surprised at the unexpected emotional and social issues that often arise after treatment. Challenges such as establishing a normal routine, going back to school, and reestablishing friendships and social connections often prove as difficult, or even more difficult, as the physical issues. Specific emotional issues vary depending on the age of the child and the duration of treatment, but luckily, most of these challenges are only temporary, and can be overcome with patience, encouragement, and lots of support from family, teachers, and even counsellors. Many cancer centers offer support services, in fact, to help families make this potentially difficult transition easier.

Long Term Survivorship Issues

In the long term, survivorship issues are usually focused on potential health concerns resulting from the toxicity of the chemotherapy treatments. Understanding the potential for long-term health problems is the first step to identifying and addressing these concerns as quickly as possible. The most common long-term health concerns among adult survivors of childhood leukemia include:

  • Secondary cancers: Chemotherapy has been linked to the development of other cancers in adulthood; for instance, treatment for ALL carries a small risk of developing AML as an adult.
  • Heart, lung, and bone problems: Some chemotherapy drugs can cause long-term damage to the heart and/or lungs, usually a higher risk for patients with ALL than AML. Steroid-based treatments have been linked to the development of osteoporosis.
  • Developmental delays/learning problems: Radiation therapy and some chemotherapy drugs have been linked to development delays in young children; therefore, most oncologists will try to avoid the use of radiation in young children whenever possible.
  • Growth delays: Some types of cancer treatments, especially if they involve stem cell transplants, can impact a child’s natural growth. In severe cases, it may be possible to address this concern with growth hormone therapy.
  • Fertility concerns: Some chemotherapy drugs have been linked to problems related to sexual development and reproduction.

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:

What is the expected lifespan of a child with leukemia?

Long-Term Prognosis and Survival Rates for Childhood Leukemia

IMG_2014Before beginning any discussion of prognosis and long-term survival for anyone with childhood cancer, including leukemia, it is important to understand that oncologists rarely use the term “cure”. Instead, oncologists focus on short-term outlook in terms of remission, minimal residual disease, and relapse. For discussion of longer-term outlook, oncologists look at the 5-year survival rate, or how many children remain cancer-free 5 years after the end of treatment. In general, children who are still cancer-free after five years are considered “cured” of the disease.

  • Remission: A child is said to have achieved remission if, after the first phase of chemotherapy (induction), the bone marrow contains less than 5% of leukemia cells, blood cell counts are normal, and no symptoms are present
  • Minimal residual disease (MRD): The cancer did not respond as expected to the initial round of chemotherapy, and cancer cells remain in the bone marrow when measured with the most sensitive testing tools (beyond a simple microscope scan)
  • Relapse: Growth of new cancer cells after treatment is complete. MRD usually involves a higher risk of relapse. Both MRD and relapse usually require a more intensive chemotherapy regime.

Once treatment is complete and deemed successful (remission), oncologists can begin to discuss the 5-year survival rate. Thanks to advances in treatment methodologies, the 5-year survival rate for childhood leukemia has greatly improved over the past several decades. The 5-year survival rate for Acute lymphocytic leukemia (ALL) is now greater than 85%. The 5-year survival rate for Acute myelogenous leukemia (AML) remains lower than for ALL, at 60-70%, but has still improved. Moreover, the rates for AML vary greatly spending on subtype and other factors.

These numbers do not, however, provide a specific prognosis for any given child. They are only averages compiled from treated cases of childhood leukemia from across the country. Your child’s prognosis and long-term outlook after treatment will be heavily dependent on your child’s diagnosis, response to treatment, and general health.

Prognosis Factors for Childhood Leukemia

Prognosis factors are a series of measurements that your child’s oncology team may use to potentially the degree of risk posed by the cancer, as well as to optimize a treatment plan with the greatest possible chance of success. There are several key prognosis factors that oncologists use when dealing with a leukemia diagnosis. In general, these prognosis factors are the same for ALL and AML, but they do not seem to play as great a role in either guiding treatment or predicting outcomes for AML.

  • Risk group: standard-risk, high-risk, or very high risk. These groupings help determine the intensity of treatment and may impact long-term prognosis; however, it is important to note that even children in the very high-risk group still have an excellent chance of achieving remission.
  • Age at diagnosis: Children between the ages of 1 and 9 seem to have a more positive prognosis than children under the age of 1 or over the age of 10. (This factor applies only to B-cell ALL; age does not appear to be a prognosis factor in T-cell ALL.)
  • Initial white blood cell count: Very high WBC counts at diagnosis is generally considered high-risk or very high-risk.
  • Subtype of ALL: Children diagnosed with pre-B, common, or early pre-B-cell ALL seem to have a more positive prognosis than children with mature B-cell leukemia; this is also true of B-cell ALL if treated with intensive chemotherapy.
  • Gender: In general, girls seem to have a slighter better prognosis than boys; this gap has shrunk in recent years thanks to today’s advanced treatment options.
  • Race/ethnicity: African-American and Hispanic children may have a slighter worse prognosis than other ethnicities.
  • Spread to other organs: If the leukemia has spread into the fluid around the brain and spinal cord, and the testicles in boys, it is usually classified as high-risk or very high-risk.
  • Number of chromosomes and chromosome translocations: Some studies have begun to link longer-term prognosis with the number of chromosomes within the leukemia cells, as well as with translocations between specific chromosomes.
  • Response to treatment: The initial reduction of leukemia cells in the bone marrow during the first 1 to 2 weeks of chemotherapy may help determine long-term prognosis; however, if the leukemia does not respond as expected in this time frame, most oncologists will move to a more intensive treatment protocol.

About American Childhood Cancer Organization

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

For additional information about childhood cancer or on 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:

Largest Childhood Cancer Icon Ever

Amazon + ACCO 2018

American Childhood Cancer Organization and Amazon Unveil Largest Childhood Cancer Icon Ever

IMG_0153Amazon provides funding for policy initiative to overcome the disparity between adult and childhood cancer research

 

Dear ACCO supporters –

IMG_0151As you know, September is Childhood Cancer Awareness Month (CCAM). Our team has been hard at work the past year preparing for this important month. Today we are reaching out to our supporters so that you are the first to hear some very exciting 2018 CCAM updates. We hope you followed along last year during Childhood Cancer Awareness Month as Amazon + ACCO joined together in a revolutionary awareness campaign to transform the future of how corporate American recognizes childhood cancer as a national child health priority. This year is even bigger and better, literally! Today we are thrilled to announce Amazon + ACCO 2018 as we unveil our biggest awareness icon yet – a massive Amazon Prime airplane emblazoned with a old ribbon and featuring the American Childhood Cancer Organization’s registered taglines “GO GOLD®” and “because kids can’t fight cancer alone”.The plane will take to the skies and deliver packages to customers across the nation, bringing a little bit of gold (and hope) everywhere it goes (www.acco.org/amazongoesgold)!
We are also excited to announce that throughout the month Amazon will also host “Camp Amazon” Gold Edition activities in Amazon robotics fulfillment centers across the United States to engage children diagnosed with cancer who demonstrate an interest in Science, Technology, Engineering, and Math (STEM). The fulfillment center will turn “gold” for the occasion and invite cancer children from local hospitals to see how Amazon robots help deliver smiles to customers around the world.  On behalf of the children participating in Camp Amazon Gold Edition, Amazon will also make donations to the pediatric oncology programs committed to saving their lives.

Until September 2017, no one knew hope could be found in a box. In the weeks and months to follow, we heard from thousands of you impacted by childhood cancer and who were so deeply moved that the world’s largest online retailer would join in the fight against the disease. In September 2018, we are excited to share that millions of Amazon customers will once again receive the special edition box featuring the gold ribbon, the international symbol of childhood cancer. We can’t wait to see your photos after you receive a box, please be sure to share with us on social media!

IMG_0149Additionally, like last year, in September thousands of Amazon fulfillment center employees will dress in their pajamas at work as a part of ACCO signature program PJammin®, recognizing pajamas are the battle uniform for children with cancer who often are forced to spend months and even years at a time fighting for their lives in their PJ’s. Soon we will be reaching back out to you to join our ACCO team and Amazonians as we go PJammin in hopes that the movement will go viral so that children fighting for their lives in their pajamas all across the country – many times isolated by hospital walls and connected only to the outside world by social media – will not feel alone.

Last but not least – ACCO is so proud to share with you first that in 2018 Amazon has chosen to take the next key step towards improved outcomes for children battling cancer by providing financial support of a new policy initiative, Why Not Kids. Using Kentucky as a successful model, Amazon + ACCO will strategically implement Why Not Kids in pilot states across the country to advocate for policies and state-level funding in recognition that children are not simply small adults.

Although it is important to acknowledge significant recent accomplishments including the 21stCentury Cures Act, RACE (Research to Accelerate Cures and Equity) for Children Act, and Childhood Cancer STAR (Survivorship, Treatment, Access, and Research) Act, we know a large disparity still exists between the amount of funding the federal government allocates for adult and childhood cancer research. The reality remains that in the past two decades only 3 new drugs have been approved by the FDA specifically to treat childhood cancer. This compares to more than 185 new drugs approved to treat adult cancers. We think kids deserve more. Involvement of corporate partners is more important than ever to give all children access to more effective treatments with less toxicity.

IMG_0152This disparity became very personal to ACCO Director of Government Relations and External Affairs, Jamie Ennis Bloyd, when her five-year-old son was diagnosed with aggressive stage 4 lymphoma and leukemia during the legislative session in March of 2014.  A state public health lobbyist at the time, Jamie quickly recognized the gap in state-level engagement and funding for childhood cancer. Working with state legislative commission staff, she discovered in the last 3 biennial state budgets over $15 million dollars [1] had been allocated to adult cancer research. Never in the history of the Commonwealth of Kentucky had the legislature invested in broad-based support of pediatric cancer – causing her to wonder aloud, “If state funds have been allocated to adult cancer research – why not kids”? She soon learned that very few, if any, states in the country had specifically invested in childhood cancer research either.

In the 2018 Kentucky legislative session Governor Matt Bevin and the Kentucky General Assembly recognized this urgent need and set a national precedent for state engagement in the fight against childhood cancer by appropriating first time funding of $5 million dollars for collaborative childhood cancer research efforts at the state’s two children’s oncology group hospitals. Already this new funding has resulted in the revelation of a cluster of a 40-county area in Kentucky in which children have an 87% higher incidence of pediatric brain tumors than what would be expected. Pediatric brain tumors are now the leading cause of death for children diagnosed with cancer in America. We want to bring this type of awareness and state level funding for childhood cancer research to all fifty states and we are so thankful for Amazon’s financial support to ACCO to make this happen.

We hope you join with us in sharing a sense of excitement and pride for being a part of our organization and a community of supporters who make this work possible. We couldn’t do it without you. Please stay tuned throughout the month as we post daily about other corporate partnerships, the amazing work of our 33 Founding Hope chapters, our Gold Ribbon Heroes, Go Gold events, Light Up Gold, PJammin® in schools, updates on the state proclamation initiative, and so much more.

Please consider asking friends and family to join follow us on social media and sign up for our mailing list (hyperlink here to webpage to join mailing list) to join us on our quest….because kids can’t fight cancer alone!®

Signature no background.fw

Ruth Hoffman,

Chief Executive Officer

American Childhood Cancer Organization

 

The American Childhood Cancer Organization was founded in Washington, D.C. in 1970 by parents of children and adolescents diagnosed with cancer to advocate for their needs and support research so every child survives and leads a long and healthy life. Since its inception, the ACCO has helped support more than half a million families affected by childhood cancer. ACCO now has more than 33 local ACCO Founding Hope affiliates throughout the United States. For more information on the partnership with Amazon visit www.acco.org/amazon.To make a donation, please visit www.acco.org/donate.

[1]Information based on 2016 RS HB 303, 2014 RS HB 235, 2012 RS HB 265 and provided by LRC Appropriations and Revenue staff on 7/19/2017