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Resources for Parents Who Have Lost a Child to Cancer

Resources for Parents Who Have Lost a Child to Cancer

Coping with Grief: You Are Not Alone

For many years, the death of a child was something to be whispered about behind closed doors.  Not knowing how to react or what words to say, family and friends would simply ignore the tragedy, perhaps offering a simple, quietly worded “I’m so sorry” and then quickly moving on to the next topic.  Parents were told that “time heals all wounds” and “your child is in a better place,” but often didn’t feel comfortable sharing their grief, while even close friends and family worried about bringing up “painful memories.”

Grief quotes

Yet any parent who has lost a child knows that time does not heal all wounds, and grief over the loss of a child to childhood cancer cannot and should not simply be swept under the rug or ignored until it passes.  At the American Childhood Cancer Organization (ACCO), we believe that the lives of children who have lost their battle with childhood cancer should be celebrated.  We believe that grieving parents and grieving families should be invited to share their grief openly, because while grieving for a lost child never ends, knowing that you are not alone, knowing that you can talk about your child and his or her fight, his or her beauty and strength, can make it just a little bit easier to cope with the difficult task of living.

If you have lost a child to childhood cancer, there are many, many resources available to help you cope with this difficult, challenging trauma.  Whether through an online support community or a local grief support group, we encourage you to find a way to express your grief, share your story, and hear from others who are also attempting to cope with their grief.  While by no means an exhaustive list, the following online resources can help you locate online groups, in-person communities, and grief centers dedicated to reminding you that you are not alone and that help is available.

(https://www.inspire.com/groups/american-childhood-cancer-organization/):

Our online peer-to-peer support community offers members 24-hour access to other families who know what you are going through.  Focused specifically on childhood cancer-related issues, including bereavement, our Inspire community includes online discussion groups and personal journals and blogs, so you can read about others who understand what you are going through and share as much or as little of your story and your amazing child as you are comfortable with.

  • The Compassionate Friends (http://www.compassionatefriends.org/home.aspx). Developed specifically to provide support to parents and family members who have suffered the loss of a child.  Includes online support and resources, as well as local chapters and more than 660 meeting locations around the country.
  • Bereaved Parents of the USA (BP/USA) (org): A national, non-profit self-help organization dedicated to newly bereaved parents, grandparents, and siblings. Newsletters, articles, and brochures are available on-line; many states have local chapters with in-person support group meetings.
  • GriefNet (http://griefnet.org/): An Internet community of families, individuals, and children coping with grief. Members can access more than 50 email support groups, including many designed just for children.
  • The Centering Corporation (http://www.centering.org/): Offers resources, book, and magazines dedicated to helping cope with and manage grief. Includes a special listing of resources for loss of a child and loss of an infant.

Online and in-person resources geared specifically towards children coping with loss include:

  • The Dougy Center (dougy.org): A grieving center designed just for children and teens in Portland, Oregon, the Dougy Center also offers a wide variety of on-line resources, including books, DVDs, and activities, geared for children of all ages. Can make referrals to child-centered grief programs and support groups across the country.
  • Fernside (fernside.org): Online and phone-based support, as well as “how to help” booklets for parents and caregivers coping with the needs of grieving children.

The 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 and bereavement.  At the national level, the ACCO promotes the critical importance of ensuring continued funding into new and better treatment protocols for childhood cancer.  At the grassroots level, the ACCO is focused on the children: developing and providing educational tools for families and learning resources for children in order to make the lives of children and their families a bit easier and perhaps even brighter during this difficult time.  Many of our resources are available free of charge for families coping with childhood cancer.

For additional information on resources available through the ACCO to help you cope with the loss of a child to childhood cancer, please visit our website at www.acco.org.

For more information about the American Childhood Cancer Organization and how we can help you cope with the loss of a child to childhood cancer, call 855.858.2226 or visit:

Want To Read American Childhood Cancer Organization On Your Phone? Click the NoteStream logo: NoteStream

Dear ACCO Family,

The American Childhood Cancer Organization (ACCO) stands proudly at the forefront of the fight against childhood cancer, continuing our efforts to bring comfort and support to children with cancer and their families throughout their journey.
Our library of free learning resources is growing! Thanks to our donors, this past year, we delivered more than 45,000 individual items free of charge across the US! We are especially excited about the introduction of ACCO’s Medical Play Therapy Kit-a learning tool designed to familiarize children with the medical devices used during their cancer treatments. 

In the words of one parent, “My little Gabriel received his medical play kit yesterday! He loves it! What a brilliant idea to give our cancer kids back a sense of control, when there is so much they can’t control through treatment.” Another parent wrote to say, “For a patient like Liam, one of his biggest obstacles has always been overcoming the fear of his port being accessed. Thanks to your play kit Liam is finding fun and new ways of exploring the entire process of port activation. Thank you ACCO for our play kit.” We could ask for no better evidence of the importance of our organization than these powerful testimonials.

Awareness is building across the nation, and the world! The world sparkled with gold lights illuminating countless buildings during Childhood Cancer Awareness Month. Our 2015 Go Gold for Kids with Cancer® t-shirt campaigns raised more awareness than we could have ever imagined, with more than 12,012 shirts, honoring the names of 4,892 children who have suffered from childhood cancer, proudly bringing awareness of childhood cancer right into the heart of your local communities. Our new website gives families even easier access to our amazing wealth of learning resources, insightful blogs, and online support community, and through social media we connect more than 78,000 individual family members, survivors, and supporters with our ever-expanding ACCO family.

Our voice is spreading! In the US, ACCO participated in the writing of the Childhood Cancer STAR Act (Survivorship, Treatment Access & Research), which brings hope to tens of thousands of children on active treatment and to the hundreds of thousands of survivors through increased government appropriations. And our efforts do not end at our borders. Cancer remains the leading non-communicable disease-related cause of death of children in the world, primarily due to lack of access to quality healthcare and effective treatment options. I was proud to have served on the planning committee of the 68th World Health Assembly’s first side-event on childhood cancer, along with board member Dr. Greg Aune as invited speaker. ACCO will continue to represent the U.S. in global childhood cancer advocacy initiatives, including the WHO’s committee working towards a 2017 childhood cancer resolution. Our goal is to reduce global childhood cancer mortality 30% by 2030.
The ACCO is growing, thanks to you! To accommodate this growth, we will be looking for a larger space to allow us to more efficiently house and ship our resources across the country. Our mission won’t end until these learning resources and support are no longer needed. Only through the generosity of individuals like you, can we continue to impact the lives of cancer’s littlest patients. Thank you for your consideration to help raise awareness about childhood cancer and to help ACCO provide national and international advocacy, support, and essential learning resources to children and their families. 
 
Please consider a DONATION during this holiday season to further ACCO’s work towards reducing the burden of childhood cancer!
Because Kids Can’t Fight Cancer Alone®…our goal is to ensure that they don’t have to.
Ruth I Hoffman MPH, Executive Director
Click Here To Lean More about ACCO

Look how you’ve helped!

Look How You Helped ACCO in 2015!

The American Childhood Cancer Organization (ACCO) stands proudly at the forefront of the fight against childhood cancer, continuing our efforts to bring comfort and support to children with cancer and their families throughout their journey.
Our library of free learning resources is growing! Thanks to our donors, this past year, we delivered more than 45,000 individual items free of charge across the US! We are especially excited about the introduction of ACCO’s Medical Play Therapy Kit-a learning tool designed to familiarize children with the medical devices used during their cancer treatments.

In the words of one parent, “My little Gabriel received his medical play kit yesterday! He loves it! What a brilliant idea to give our cancer kids back a sense of control, when there is so much they can’t control through treatment.” Another parent wrote to say, “For a patient like Liam, one of his biggest obstacles has always been overcoming the fear of his port being accessed. Thanks to your play kit Liam is finding fun and new ways of exploring the entire process of port activation. Thank you ACCO for our play kit.” We could ask for no better evidence of the importance of our organization than these powerful testimonials.

Awareness is building across the nation, and the world! The world sparkled with gold lights illuminating countless buildings during Childhood Cancer Awareness Month. Our 2015 Go Gold for Kids with Cancer® t-shirt campaigns raised more awareness than we could have ever imagined, with more than 12,012 shirts, honoring the names of 4,892 children who have suffered from childhood cancer, proudly bringing awareness of childhood cancer right into the heart of your local communities. Our new website gives families even easier access to our amazing wealth of learning resources, insightful blogs, and online support community, and through social media we connect more than 78,000 individual family members, survivors, and supporters with our ever-expanding ACCO family.

Our voice is spreading! In the US, ACCO participated in the writing of the Childhood Cancer STAR Act (Survivorship, Treatment Access & Research), which brings hope to tens of thousands of children on active treatment and to the hundreds of thousands of survivors through increased government appropriations. And our efforts do not end at our borders. Cancer remains the leading non-communicable disease-related cause of death of children in the world, primarily due to lack of access to quality healthcare and effective treatment options. I was proud to have served on the planning committee of the 68th World Health Assembly’s first side-event on childhood cancer, along with board member Dr. Greg Aune as invited speaker. ACCO will continue to represent the U.S. in global childhood cancer advocacy initiatives, including the WHO’s committee working towards a 2017 childhood cancer resolution. Our goal is to reduce global childhood cancer mortality 30% by 2030.
The ACCO is growing, thanks to you! To accommodate this growth, we will be looking for a larger space to allow us to more efficiently house and ship our resources across the country. Our mission won’t end until these learning resources and support are no longer needed. Only through the generosity of individuals like you, can we continue to impact the lives of cancer’s littlest patients. Thank you for your consideration to help raise awareness about childhood cancer and to help ACCO provide national and international advocacy, support, and essential learning resources to children and their families. 
 
Please consider a DONATION during this holiday season to further ACCO’s work towards reducing the burden of childhood cancer!
Because Kids Can’t Fight Cancer Alone®…our goal is to ensure that they don’t have to.
Ruth I Hoffman MPH, Executive Director
Click Here To Lean More about ACCO

Gold Ribbon Hero A. Santana U.

“Reason this person is a Gold Ribbon Hero: This is my Son Santana. He was diagnosed with ALL 3 years ago on the 13th of November 2012, and he is so excited to hit this benchmark appointment (Last Spinal Tap). He only has two more Chemo pushes to go before he gets to ring the bell symbolizing the end of treatment. Hard to believe how far we’ve come. Throughout treatment, Santana has been so brave, and determined to “Win this fight”. He’s remained positive, and faithful, even in times of struggle. Through his tenacity, he has inspired so many people near and far, and I just know that God has something big in store for not only him, but our family as well.” – Homar U.

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When Your Child’s Cancer Treatment Ends: A Guide for Families

Coping with Normalcy: Life After Cancer Treatment

life after cancerWhen your child has been diagnosed with cancer, you focus your entire life on just one goal: beating this terrible disease.  But what happens when this goal is achieved?  Life just goes right back to normal, right?  Unfortunately, the return to “a normal life” after cancer brings about its own problems, its own difficulties.  Helping your child rediscover the joys of a “normal” childhood and adolescence and restoring a regular school and home routine brings its own, often unanticipated, challenges.  This blog will briefly review some of the major challenges you may find yourself facing after your child’s treatment is complete; for additional resources on this and other survivorship issues, we encourage you to visit our website at www.acco.org.

Heightened feelings of anxiety and worry, especially regarding your child’s health

Without the “normal” everyday contact with your child’s medical team, most parents find themselves surprised that feelings of anxiety and worry about their child’s health increase, not decrease.  What if the cancer returns?  How will I know if my child is struggling with late effects of his or her treatment?  Even coping with normal childhood illnesses can be difficult.  Be sure that you schedule, and stick to, regular follow-up visits and check-ups with your oncology team, and raise any immediate concerns about your child’s health with your pediatrician.  We also recommend participating in a survivor support group in your area, or through the ACCO’s online support group.

Restarting your child’s normal developmental stages

Parents of kids with cancer often find that cancer treatment causes delays in their child’s emotional and physical development.  Always being the center of attention, never having to leave Mom and/or Dad’s side, and coping with the pain and stress of the treatment itself can lead to emotional (and physical) regression for younger children and heighten normal feelings of rebellion in adolescents.  It is important to begin putting age-appropriate developmental milestones back on track quickly after treatment: setting and sticking to limits and boundaries, encouraging natural separation and appropriate levels of independence, encouraging acceptance of attention given to siblings and other family members, and helping rebuild your child’s (age-appropriate) social skills are especially crucial during this time.

Returning to school

For school-age children and adolescents who have missed significant amounts of school, returning to a normal school routine can be difficult.  Socially, many cancer survivors find it difficult to reengage in social activities at school and may initially have trouble rebuilding friendships outside the hospital, while academically, catching up on missed school work can be challenging.  Close communication between parents, teachers, and guidance counselors is always the best way to help your child get back on track both socially and academically.

Unfortunately, today’s available cancer treatments have been shown to lead to serious learning disabilities in some children, including (but not limited to) difficulties with sustaining attention, remembering visual information, reading comprehension, performing math calculations, handwriting, information processing, and planning and organizing.  If you are concerned that your child is struggling in one or more of these areas, request an evaluation from your school.  Under the Individuals with Disabilities Act, your child may qualify for special services through an IEP, or Individualized Education Program.  Be aware, however, that simply being “behind” due to missed school or lack of previous instruction is not a determining factor in eligibility for an IEP.

Find a support network

As always, the best way to cope with the many and varied challenges that arise as cancer treatment ends is talking about them.  If you find yourself struggling with restoring your “normal” life after your child’s treatment ends, we encourage you to find an individual counsellor or psychiatrist for you and/or your child, especially for school-age children and adolescents who can verbalize their feelings and emotions.  We also encourage you to participate in a survivors’ support group with other families who can help provide both advice and perspective during this happy, but challenging, time.

The 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.  At the national level, the ACCO promotes the critical importance of ensuring continued funding into new and better treatment protocols for childhood cancer.  At the grassroots level, the ACCO is focused on the children: developing and providing educational tools for families and learning resources for children in order to make the lives of children and their families a bit easier and perhaps even brighter during this difficult time.  Many of our resources are available free of charge for families coping with childhood cancer.

For additional information on survivorship issues, as well as information on obtaining our resources, please visit our website at www.acco.org.

 

For more information about the American Childhood Cancer Organization and how we can help, call 855.858.2226 or visit:

Want To Read American Childhood Cancer Organization On Your Phone? Click the NoteStream logo: NoteStream

Why is good nutrition so important for your child during cancer treatment?

The Critical Importance of Good Nutrition for Children Fighting Childhood Cancer

cancer and nutritionEstablishing good eating habits and enticing children to eat nutritious, healthy foods is an issue with which all parents with young children struggle.  For parents of kids with cancer, however, the challenges are even greater, requiring untold levels of patience and creativity to overcome.  Why is good nutrition so important, yet so challenging, for kids with cancer?  The fact is that many forms of childhood cancer, as well as today’s cancer treatments involving chemotherapy and radiation therapy, negatively impact your child’s appetite, ability to eat, and ability to process and store nutrients appropriately, making a healthy diet even more difficult to maintain at a time when your child’s body needs the energy and nutrients from a healthy diet more than ever.

If your child is undergoing treatment for childhood cancer and is struggling to maintain a nutritious diet, or is losing or gaining significant amounts of weight, we encourage you to speak to your child’s oncology team immediately.  They can offer important information about your child’s dietary needs, and may recommend working with a registered dietitian who can offer more tailored guidance on the best foods for your child, given his or her unique medical circumstances.  It is also important to share your experiences with other parents going through, or who have gone through, a similar experience, as they may be able to offer helpful hints around making eating easier and more enjoyable for your child during this difficult time.

Why is eating right so important for kids with cancer?

All children require more calories per pound than adults to ensure proper and healthy growth and development.  The bodies of kids with cancer bear an additional burden, however: they may require even more calories to provide their small bodies with critical energy to fight the cancer and heal damaged tissues.  Helping your child take in sufficient calories, along with much-needed vitamins and minerals, will help your child’s body stay strong, make your child feel better, and ultimately give your child’s body the tools it needs to win the fight against cancer.  Specific benefits of a healthy diet include:

  • Greater tolerance for treatment and its negative side effects
  • Improves healing and recovery times after treatments
  • Boosts immune system to decrease the risk of infections during treatment
  • Helps maintain a healthy weight
  • Encourages and boosts your child’s ability to keep up with normal growth and development
  • Gives your child more strength and energy
  • Helps your child feel better overall

Why is eating so difficult for kids with cancer?

Unfortunately, cancer itself, as well as many treatment protocols, can make eating a challenging task for many children.  Both cancer and its treatment often undermine a child’s appetite, alter his or her tolerance for certain foods, and even change the way he or she processes nutrients.  Cancer treatments involving chemotherapy and radiation often bring unwelcome side effects impacting both food choices and the ability to eat, including: pain, constipation, diarrhea, nausea, vomiting, mouth and throat pain, mouth sores, dry mouth, and thick saliva, just to name a few.  Helping your child overcome these difficulties in order to eat—and eat well—requires flexibility, patience, and creativity!

What can I do to help my child eat better during cancer treatment?

There is no right answer to this question, because every child is unique, with unique medical requirements, different sensitivities and cravings, and fundamentally, still a child with particular likes and dislikes, just like every other child!  There is no right solution to this difficult problem, and many families find they need to try multiple approaches, multiple times over the course of their child’s treatment.

  • Understand the critical elements of a healthy diet and your child’s unique dietary needs.
  • Be flexible, and don’t feel limited by “traditional” eating habits.
  • Remember that your child may require foods that are not traditionally considered “healthy”.
  • Don’t be afraid to try new foods, and new tactics.
  • Making eating fun whenever possible.
  • Keep your child hydrated.
  • Don’t make eating into a battle.

The 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 and bereavement.  At the national level, the ACCO promotes the critical importance of ensuring continued funding into new and better treatment protocols for childhood cancer.  At the grassroots level, the ACCO is focused on the children: developing and providing educational tools for families and learning resources for children in order to make the lives of children and their families a bit easier and perhaps even brighter during this difficult time.  Many of our resources are available free of charge for families coping with childhood cancer.

For additional information on our resources or information on how to obtain our resources free of charge, please visit our website at www.acco.org.

 

For more information about the American Childhood Cancer Organization and how we can help, call 855.858.2226 or visit:

Want To Read American Childhood Cancer Organization On Your Phone? Click the NoteStream logo: NoteStream

Gold Ribbon Hero Kamryn S.

“Reason this person is a Gold Ribbon Hero: Kamryn is a cancer survivor. Easter weekend of 2014 she was diagnosed with a wilms tumor (kidney). They opened her up to remove the kidney and found it had ruptured so they were on able to remove the kidney at that time. She then had chemo for 6 weeks. After that round of chemo she went to Sloan Kettering in NYC to have the kidney and tumor removed. She then went through more chemo and radiation. Kamryn was a tough girl through the whole process and always kept smiling and making other laugh. She is now cancer free. They do test every 3 months to make sure she is fine.

Last month a friends of her moms sister was diagnosed with breast cancer so Kamryn wrote her a letter telling her she can beat cancer too.

She is our hero.” – Pamela M.

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Gold Ribbon Hero Aracely G.

“Reason this person is a Gold Ribbon Hero: Aracely has been battling Pineoblastoma since June 1st 2015. She has currently been hospitalized for 171 days. She has endured 3 brain surgeries and 5 rounds of chemo. She is preparing to start radiation next month. We are so proud of her strength and we are grateful to be her family and stand by her side. She continues to amaze us.” – Kimberly G.

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Gold Ribbon Hero Ryder W.

“Reason this person is a Gold Ribbon Hero: He was diagnosed with Stage III kidney cancer on 12/19/2015.  He has survived radiation, chemotherapy, and removal of his kidney.  Through it all he showed us what the face of courage looks like; what the face of bravery looks like.  And he did it all with a smile on his face for everyone.  My grandson is my inspiration and hero.” – Nancy W.

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Gold Ribbon Hero Alicia G.

“Reason this person is a Gold Ribbon Hero: Why I’m nominating my daughter. In 2013 she was diagnosed with AML at the age of 13. After we found out of course we were devastated. She’s my baby I wished it was me not her. The doctors told us about a studied chemo that they wanted to try so we did. After she started chemo she contacted legionella which put her in the PICU. She was on life support for 3 months. We was not sure if she was gonna make it. She was fighting to diseases. Which after 139 days in the hospital she was our miracle child, she beat both and u got to bring her home cancer free. Then she relapsed thanksgiving last year 2014, but with the help of her older brother Jeremy she is once more cancer free. See she had to have a bone marrow transplant in February of this year as her brother was her donor. I am proud of both my babies, they are both my hero’s.” – Brenda F.

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