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Jessie Rees Foundation | Encouraging Kids Fighting Cancer to Never Ever Give Up

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OUR MISSION Help every kid fighting cancer to Never Ever Give Up! We fulfill our mission by CONNECTING with families, bringing AWARENESS to their stories, offering them a network of helpful RESOURCES and sending the entire family continual doses of ...

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Alex's Lemonade Stand Foundation for Childhood Cancer

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Everyone can help ALSF move one step closer to a cure for childhood cancer!

ALSF's Mission: To change the lives of children with cancer through funding impactful research, raising awareness, supporting families, and empowering everyone to help cure childhood cancer. Learn more about our mission.

ALSF Charitable Tax ID: 56-2496146

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Everyone can help ALSF move one step closer to a cure for childhood cancer! ALSF's Mission: To change the lives of children with cancer through funding impactful research, raising awareness, supporting families, and empowering everyone to help cure childhood cancer. Learn more about our mission. ALSF Charitable Tax ID: 56-2496146

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Best practices, tips and fundraising ideas for nonprofits

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Nearly 15,780 kids are diagnosed with cancer in the U.S. each year. Many organizations work hard to support affected families, touch lives, and ultimately eliminate childhood cancer and its devastating effects. But the cause is multi-faceted, and these social impact organizations must attack the problem from many different angles.

To honor Childhood Cancer Awareness Month, we've rounded up 10 organizations that are addressing this issue in unique ways. All of them provide a number of different programs, but we've highlighted the special initiatives that set them apart.

1. Ronald McDonald House Charities of Southern California

Creating a Home Away From Home

When a family undergoes a cancer diagnosis, the financial strain of staying together in another city can be incredibly difficult and overwhelming. The Ronald McDonald House Charities creates a "home away from home" for families so that they can stay near their hospitalized child, without the financial toll.

The Southern California chapter provides programs that each provide home-cooked meals, private bedrooms, child playrooms, and other special services to help families feel the familiar comforts of home. The Southern California chapter is also one of the few chapters across the world that operates a Camp Ronald McDonald for Good Times, a free camp for children with cancer and their families. All of these services aim to help families focus purely on the health of their child.

To learn more about RMHCSC, check out their website here.

2. Vs. Cancer

Focusing on Both Local and National Impact

Vs. Cancer is committed to saving children's lives by empowering athletes and communities to fund lifesaving childhood cancer efforts. While they have one goal-to cure childhood cancer-they are hurtling toward it from two different angles. They are improving the treatment and wellbeing of kids currently fighting cancer, while also funding pediatric cancer research.

Enter their half and half model. Of every dollar raised, 50 percent goes to a local childhood cancer hospital in supporters' communities, and 50 percent funds national research to find new and better treatments. In its first two years, Vs. Cancer rallied supporters to raise over 1.5 million dollars. In 2014 alone, Vs. Cancer's work has served more than 50 children's hospitals and 40,617 children.

Ashleigh Kincaid, Director of Marketing and Hospital Relations, says,

We are focused on funding every aspect of how a child beats cancer. Not only do we want to make a difference in the lives of kids who will be diagnosed in the future through research, but we also want to help the kids fighting right now, by funding essential programs at local children's hospitals.

Learn more about their work here.

3. Children's Cancer Recovery Foundation

Delivering Gifts to Children With Cancer

The Children's Cancer Recovery Foundation aims to elevate the mental, social, and emotional wellbeing of families undergoing cancer treatment. The organization heads the Bear-Able Gifts Program, the largest supplier of gifts to children with cancer in North America.

Each quarter, the organization's network of social workers and child life specialists can request toys and gifts for the children they serve, including board games, toys, coloring books, video games, books, and more. Volunteers prepare the packages for different age groups, which are then shipped to hospitals and oncology centers across the country. Thousands of children receive special gift packages every year.

Get more information about their Bear-Able Gifts Program here.

4. Emilio Nares Foundation

Providing Transportation to Treatment

For many families, one of the first major challenges is simply making it to the treatment facility. The Emilio Nares Foundation (ENF), an organization assisting families who have children diagnosed with leukemia and other forms of childhood cancer, tackles this issue through their flagship program, Ride With Emilio (RWE). RWE is a transportation service that ensures children make it to their treatment appointments.

Currently, RWE operates in San Diego County and Orange County. The program serves an average of 30 to 40 families in San Diego County per week, while RWE Orange County transports about 40 families every year. Between September 2013 and August 2014, RWE's vans provided 2,413 trips for patients and family members to their cancer treatments.

Heidi Cramer, Development Director at ENF, says,

It's unacceptable for a child to miss their cancer treatment due to lack of transportation. We won't stop until there is available transportation at every children's hospital across the country. We take for granted the fact that the majority of us can drive ourselves to a cancer treatment appointment. For the families we serve, it is a life-saving ride.

Learn more about ENF's impact here.

5. Go4theGoal

Offering Financial Support and Granting Wishes

Along with a cancer diagnosis often comes financial strains. Among its other programs, Go4theGoal, an organization improving the lives of children battling cancer, helps to relieve these financial and logistical difficulties for families. Within a day, they respond to requests for help with medical and household bills, travel for treatment, tuition assistance, and other needs.

To also help lift children's spirits, the organization grants wishes to help families create meaningful memories together. From toys, to VIP experiences, to special family trips, these fulfilled wishes provide children and their families the opportunity to share a positive experience during treatment.

Learn how you can get involved just in time for National Pediatric Cancer Awareness day.

6. Camp Kesem

Supporting Children Through Their Parents' Cancer

More than 3 million kids are affected by a parent's cancer, and their neglected needs often result in academic, social, emotional, and developmental issues. Camp Kesem addresses this problem by giving these children the extra support and attention they need-along with the opportunity to just be kids.

The national community provides one-week summer camp experiences for these children, complete with fun activities and designated "Cabin Chats" where they can share their experiences with fellow campers and counselors. Camp Kesem has 62 chapters across the United States, and each chapter is run by college student leaders at a university.

Explore the different ways you can take action for Camp Kesem here.

7. Lucile Packard Foundation for Children's Health

Providing Data and Research to Improve Children's Health

The Lucile Packard Foundation for Children's Health is the fundraising arm of Lucile Packard Children's Hospital Stanford and the child health programs at Stanford University School of Medicine. The foundation works to increase the priority of children's health and improve the quality and accessibility of children's health care.

One of their unique contributions to the cause is their easy-to-use resource, kidsdata.org. The website brings key children's issues to public attention by providing extensive current data and research on children's health in California, making it easy for leaders and policymakers to tap into data in their work. Whether they need to assess community needs, craft grant proposals or reports, or track progress, those who work on behalf of children can easily access data on hundreds of child health measurements.

Learn more about how you can support the foundation.

8. Pablove Foundation

Connecting Parents and Medical Professionals

The Pablove Foundation invests in innovative pediatric cancer research grants, educates cancer-stricken families, and enriches the lives of children with cancer through the arts. To inspire families and educate them about childhood cancer, the organizations hosts annual childhood cancer symposiums that bring parents and leading medical experts together.

At the symposiums, caregivers and survivors can attend for free to learn about specific, rare childhood cancers and treatment, connect with top pediatric cancer researchers, and meet other families who are going through similar situations. When understanding your child's cancer is a struggle, resources like this can help you receive the in-depth information and support you need.

Brynne Zaniboni, Marketing and Communications Manager, says,

For families of children diagnosed with cancer, navigating the field of treatment options is daunting, to say the least. We work to provide programming that is both educational and supportive to families and caregivers of kids living with cancer.

Take a deeper dive into all that their cancer symposiums provide, here.

9. Okizu

Providing a Childhood Camp Experience

Okizu 's mission is to provide peer support, respite, mentoring, and recreational programs to support all members of families impacted by childhood cancer. While they initially began by providing a normal life experience for children living with cancer, they quickly learned that every family member is affected in a unique way.

That's why for more than 33 years, Okizu has partnered with pediatric oncology treatment centers in Northern California to provide oncology, siblings, family, bereavement, and Teens-N-Twenties programs. These programs are built around a residential camp experience that gives children and families affected by childhood cancer the chance to connect with peers and get the emotional support they need.

Learn more about the different programs and camps they offer.

10. National Children's Cancer Society

Supporting Life Beyond Childhood Cancer

The National Children's Cancer Society (NCCS) provides emotional, financial, and educational support to families and survivors of childhood cancer. Among their various initiatives, the organization's Beyond the Cure program educates and prepares survivors and their families for life beyond cancer. An online information center, conferences, and free publications are all available for survivors to learn about the late effects of treatment.

In addition, NCCS awards college scholarships to survivors through their Beyond the Cure Ambassador Scholarship program. Forty scholarships are given annually, and the scholarship program has awarded more than $650,000 in scholarship money to childhood cancer survivors across the nation.

For more information about NCCS, check out their website here.

If you need ideas on how to celebrate Childhood Cancer Awareness Month, start here. These organizations are driving the cause forward, from many different angles. Join the cause and make an impact today.

Run Your Best Campaign Ever

Photo Credit:
Ronald McDonald House Charities
Vs. Cancer
Children's Cancer Recovery Foundation
Lucile Packard Foundation for Children's Health
Go4theGoal
Camp Kesem
Emilio Nares Foundation
Pablove Foundation
Okizu
National Children's Cancer Society

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10 Ways Nonprofits Attack Childhood Cancer

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Nearly 15,780 kids are diagnosed with cancer in the U.S. each year. Many organizations work hard to support affected families, touch lives, and ultimately eliminate childhood cancer and its devastating effects. But the cause is multi-faceted, and these social impact organizations must attack the problem from many different angles.

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Day to day life for a child with cancer can be very difficult both for the child and those caring for them. Parents and the patient can face many challenges and changes. At times parents may feel overwhelmed and unsure about what the future holds. Knowing what to expect and who to get support from can help the family cope throughout treatment.

Nutrition and diet

The physical and emotional side effects of having cancer and its treatment can cause several changes to a child's ability and desire to eat. Physical side effects that can alter a child's eating patterns may include:

Loss of appetite

Feeling or being sick (nausea and vomiting)

Bowel changes (diarrhoea or constipation)

Weight gain

Sore mouth

Altered sense of taste

Feeling tired all the time and not having the energy to eat

How cancer and its treatment affect a child emotionally may also affect their eating habits. Some children who are upset, frightened or anxious will not want to, or feel able to eat.

The medical team, including the dietitian, will work closely with the child and family to ensure maintenance of a good level of nutrition during their treatment.

For more information regarding eating well, please refer to:

Fatigue (tiredness)

Fatigue is one of the most common side effects of cancer treatment. It can be acute (short lasting) or chronic (long lasting).

It can be difficult to understand how tired someone having cancer treatment sometimes feels. Whilst a child may not seem to be doing much to make them tired, their body is working hard to fight the cancer and manage the effects of the treatment. Children can become exhausted and have no energy. Fatigue can sometimes carry on long after treatment has finished. Plan appropriate rest periods during the low energy times.

Children having radiotherapy to the brain usually want to sleep a lot. Doctors call this somnolence.

The following may help to manage fatigue and sleepiness:

Minimise the number of visitors at any one time (visitors are great but too many can be exhausting too!).

Offer food and drink regularly to keep up energy levels.

Allow periods of rest.

Encourage low energy activities such as reading, watching TV.

Help with activities of daily living (bathing, dressing, and eating) during very low energy times.

Avoid outings that require walking long distances/crowds and busy places.

Create a calm, comfortable and reassuring environment both at home and in hospital.

For more information about fatigue you can read the following:

Blood counts

Children with cancer usually need to have regular blood tests. This is to check their blood counts (red blood cells, white blood cells and platelets) are staying within normal limits during their treatment. There are three main types of blood cells:

Red blood cells - These carry oxygen around the body. If they become too low, known as anaemia, a child can become breathless, very tired and generally unwell.

White blood cells - These cells help fight infection in the body. If they become too low, known as neutropaenia, a child will be more susceptible to getting infections. This can be very dangerous when a child is having cancer treatment.

Platelets - These cells are important for blood clotting. If they get too low it can cause serious problems with bleeding.

Chemotherapy and radiotherapy can cause changes to all these blood cells which may lead to infections, bleeding and tiredness. Understanding blood counts, and how to prevent complications if they become low, is an important part of caring for a child.

Hair loss

Nearly all children diagnosed with cancer lose their hair at some stage from treatment. The amount of hair loss will depend on the type of treatment. Hair loss generally begins two to three weeks after chemotherapy starts. The hair may all come out overnight, or take several weeks. It can range from severe thinning to complete baldness and can include body hair, eyebrows and eyelashes. Hair will always grow back but it may look different.

It can be distressing and upsetting to lose hair. Using hair wraps, bandanas and hats can help a child until their hair grows back. Cancer Council Victoria offers a free wig service that some teenage children may want to use.

Mouth and dental care

Some chemotherapy drugs can cause mouth sores such as ulcers or infections. Radiotherapy to the head and neck area can also cause mouth problems. The child's doctor should be notified of changes in the mouth or throat such as:

sores

ulcers or changes in saliva or problems with eating and swallowing

red or white patches in the mouth

coated white tongue or

bleeding gums

Dental problems should be discussed with a child's doctor before seeing the dentist. If a child needs any dental work, the dentist needs to be notified that the child is having cancer treatment.

School issues

It is important for both the patient and parents to maintain contact with the child's school, teachers and school friends whilst having cancer treatment. Continuing to engage a child during treatment in learning may be challenging at times, but it is also an important part of recovery. Writing a letter or meeting with the Principal or key teachers at the school early on in a child's illness helps open the lines of communication. Visiting programs may be available to help educate and inform the child's school friends and teachers.

Stay in close contact with the child's teachers, use the teachers within the hospital setting and ask the child's friends to visit and do school work with them. All of this can help keep the child active in their education. Providing regular updates about a child's progress and possible return to school will be an advantage for everyone.

Depending on the child's age there maybe difficulties upon returning to school. Issues such as hair loss, weight loss, weight gain, speech problems, changes in appearance due to surgery, loss of concentration and the ability to learn as well as they could before may all be experienced. Fatigue can be an ongoing issue for many cancer patients long after their treatment finishes.

For more information regarding how schools and parents can support children receiving treatment for cancer please:

Physical activity

Children may not feel like playing, exercising or being active during cancer treatment. This is normal and usually for a good reason. Having cancer and its treatment is exhausting for most people, including children. They may be feeling sick, have a fever or low blood cell count.

Whilst it is important to allow children to rest where possible, it is also important to know when to encourage exercise. Prolonged inactivity can lead to feeling more tired and can lead to other problems such as muscle weakness and low mood.

Where possible, and when appropriate, encourage activity. Involvement in the daily routines of family activity such as cutting up vegetables for dinner, folding washing and playing games can help. Walking, bike rides and light exercise can have a positive effect during their treatment. Avoid strenuous exercise and always check with the child's doctor before doing any new exercise program. There may be days when all a child wants to do is sleep, other days they will be happy to be quite active.

Pain

Children undergoing treatment may have some pain because of the treatment or the cancer itself.

Why does cancer cause pain?

Pain happens when nerves detect damage to the body and send a message to the brain, causing the sensation of pain to occur. Pain is useful when it helps you avoid doing something risky, like putting your hand in very hot water. With cancer and other illnesses, it can alert you to the fact that there is a problem, like a tumour growing. Pain can also be experienced due to the effects of treatment. Pain in cancer can happen for different reasons:

a tumour can press on a nerve or affect the way an organ works

chemotherapy, surgery and radiotherapy can cause pain

nerves can 'carry' pain around the body, so pain can sometimes be felt in a place well away from the thing that is causing it. This is called 'referred' pain.

How does a child know how to describe how their pain feels?

For very small children watching their facial expressions, movements and the way they cry can indicate levels of pain. Older children will usually be able to tell you about their pain. It is important to find out where the pain is, the type of pain (burning, shooting, cramping, throbbing, stabbing, dull, sharp, constant, aching.) and what makes it worse (movement, eating, breathing) or better (changing position, resting, pain killing medications). Changes in behaviour, such as isolation, mood changes and loss of appetite can indicate a child is in pain.

For older children, asking them to rate their pain on a scale of 1 to 10 can be helpful. If their pain is mild - similar to a minor headache that you know will go away soon - they might rate it 1 or 2. The other end of the scale, 9 or 10, is very severe pain - and could be the worst thing they could experience. Always tell the child's doctor if pain changes suddenly or becomes more severe.

Small children may benefit from using drawings with facial expressions to communicate their level of pain. Some children may be afraid to talk about their pain or not know what words to use. Speak at an age-appropriate level to the child to find out about their pain. For example, 'is it just a little ouch like when you knock your hand on the table or is it a big ouch like when you fall down and cut your knee or much worse than that?". Children will find it easier to tell you about their pain if you give examples.

Baker FACES Pain Rating Scale, which can be used with children as young as 3 years old is also used with some children. It works in a similar way to using a number scale for the older child to rate their pain. Each face has an expression on it and a number associated with that expression. The faces are numbered 0 to 5 with 0 meaning no pain at all and 5 being the worst pain of all.

From Wong, D.L., Hockenberry-Eaton, M., Wilson, D., Winkelstein, M.L., Ahmann, E., DiVito-Thomas, P.A.: Whaley and Wong's Nursing Care of Infants and Children, ed. 6, St. Louis, 1999, p. 2040. Copyrighted by Mosby, Inc. Reprinted by permission.

For more information about cancer pain and its treatment:

Please note that the information on these international websites is about pain and cancer in general and not specific to children.

Caring for a child with cancer

Caring for someone with cancer can be very stressful, particularly when it is a child. The child with cancer may be experiencing distressing emotions about their cancer diagnosis, side effects from treatment and mood changes from the effects of medications. It is very important that carers of children with cancer look after themselves during this time. Having time out, a cup of coffee with a friend, and sharing worries and concerns with someone not involved in the child's care are useful strategies.

Cancer Support Groups are usually open to patients and carers. Support groups can offer the chance to share experiences and ways of coping. There are a range of support services for children with cancer and their carers such as home help and visiting nurses. These are provided by local councils and the Royal District Nursing Service.

Call Cancer Council on 13 11 20 to:

be linked with another parent by telephone.

be sent a carer's kit so that you can find out about financial assistance and other resources.

Play time for the child with cancer

Children love to play and it is often when they are at their happiest. Play remains very important for a child with cancer and should be encouraged throughout treatment. The following websites provide helpful ideas about play.

The Starlight Foundation has set up an online community designed for young people and their families living with a serious illness such as cancer. LiveWire.org.au

The Royal Children's Hospital has developed a list of educational apps and websites a patient can play whilst in hospital. It is arranged by age groups.

Practical and financial issues (finance, child care, travel, insurance)

Many children's cancer organisations also offer practical assistance.

Including:

Financial assistance: may be available for transport costs to medical appointments, prescription medicines, or through benefits or pensions - social workers can offer assistance

Home nursing care: available through district nursing, or the local palliative care service - usually the doctor or hospital arranges this.

Home care services: aids and appliances: contact the hospital social worker, occupational therapist or local council.

After treatment finishes

When treatment finishes, a range of emotions including relief, excitement, and apprehension can be experienced. Whilst it is a time of celebration, some people are surprised to find that they can be feeling a bit fearful too. Fearful about what the future holds, if the cancer will come back and of returning to everyday life without continuous hospital contact. This is all normal, it is important to get the help when treatment has finished.

Parents and carers may have some of the following questions after treatment finishes:

Frequency of check ups

What to do if a child develops a fever

Cancer and the impact of children learning

When to return to school

Who to contact for questions and concerns

When to get immunisations

Coping with fear of the cancer coming back

Travel insurance for the recovering child

For further information:

The Coming off treatment handbook has been developed by the Paediatric Integrated Cancer Service (PICS) to support families when their child completes treatment.

Late effects of childhood cancer treatment

Major advances in treatment over the past two decades have improved survivorship and because more children are surviving, doctors now know that some cancer treatments can cause problems later in life - have 'late effects' - on the person's health and well being. Watching out for these problems with long-term follow up care ensures that, if problems do arise, they are dealt with early.

Childhood cancer survivors are at risk of developing several possible late effects from their cancer treatment. This does not mean all children who have had cancer treatment will develop late effects. The risk will depend on several factors such as:

the type of cancer the child had

which treatments were given and the doses

the age when receiving the treatments

The following are examples of the main types of problems that can happen later in life after childhood cancer treatment. The child's doctor is the best person to ask about the possible late effects specific to the child being treated.

Heart or lung problems

Chemotherapy and radiotherapy can cause problems later in life with the heart and lungs, regular heart scans and tests are required.

Growth and development problems

Radiotherapy treatment can cause problems with bone growth.

Learning difficulties

Most children will not have long-term problems with learning after their cancer treatment. However, some children, especially those who have had treatment for a brain tumour, may have learning difficulties. They may need special attention at school to help them keep up with their studies.

Sexual development and fertility issues

Some treatments will affect a child's sexual organs and functioning in both girls and boys. This can lead to having an effect on sexual development and ability to have children (their fertility). Treatments that may have this effect include:

radiotherapy to the brain, lower abdomen/pelvic area

certain chemotherapy drugs

total body irradiation

surgery on the ovaries, womb or testes

Developing a second cancer

For a very small number of children who have a childhood cancer there is the risk they will develop another different type of cancer (second cancer) later in life. Having regular appointments with a local general practitioner throughout life is essential for all survivors of childhood cancer.
Information reviewed by: Cancer Council Victoria with assistance from The Paediatric Integrated Cancer Service (PICS), parents and staff from the Oncology units at both The Royal Children's Hospital, Melbourne & Monash Children's, Monash Health, Melbourne and OnTrac, Peter Mac Victorian Adolescent and Young Adult (AYA) Cancer Service.

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Day to day life for a child with cancer can be very difficult both for the child and those caring for them. Parents and the patient can face many challenges and changes. At times parents may feel overwhelmed and unsure about what the future holds.

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As Vanessa and I talked about the series she wrote for us last month on childhood cancer, we wanted to wrap it up with some tangible suggestions for how you can be an encouragement to families traveling this very long and very hard path. Vanessa delivered (as usual) and gave us 75 ways we can be a blessing. She rocks.
Were you glad for a break last Monday? For something lighter to read about than childhood cancer and survival rates and babies whose heart stop in the car. It's ok if you were. I was glad for a break too. There's only so much the heart can take. I didn't want to leave you all on such a sad note, though.

Last week, one of the 10 Strong mommas checked into the hospital with her little boy for a week long stay. He's fighting Stage 4 neuroblastoma and was there for a round of antibody therapy. On Sunday night she texted me that she was bummed because she usually brings her coffee pot from home when she knows they'll be there for awhile, but this time she forgot it. So Monday morning I took her my Keurig and some K cups and a mug. Because if being in the hospital with your baby boy for a week isn't enough, the horrible coffee they have there makes it almost too much to bear.

My little trip to the hospital to drop off a coffee pot got me thinking of all the kind things people have done for us while Brock was in therapy; big and small. I wanted to share them with you so that you can be a blessing to someone who needs it. I want to encourage you to encourage others. Cancer treatment is long and hard. For the first year of Brock's treatment, we weren't home more than 2 weeks at a time. Ever. We literally lived in the hospital for months and months at a time. That made it all but impossible to accomplish even the easiest tasks...getting the oil changed in the car, mowing the yard, going to the grocery store, buying Christmas presents. There is just not TIME for these things when one child is living in the hospital, one child is living at home, one parent is working, and both parents are trying to give their children everything they need. It's hard y'all, is what I'm saying. And it's long. Brock received chemo for 3.5 years. All of the help we got in the beginning was equally appreciated at the end.
YOU can be a blessing. Here's how:
1. Drop off a case of bottled water at the hospital.

2. Give a Visa gift card - something that can be used on gas, hospital cafeteria food, groceries, whatever.

3. Let your kids paint a picture to brighten up the hospital room.

4. Deliver it with cupcakes.

5. Take a home cooked meal to the hospital.

6. Take a home cooked meal to their house.

7. Text them to let them know you're thinking about them.

8. Stop and pray WITH them instead of telling them you will be praying FOR them.

9. Don't take a gift to the sick child without taking something equally as exciting for their siblings.

10. Mow their yard for them. Or, ummm...have your husband mow their yard.

11. Buy an extra bag of groceries while you're shopping and leave it at their house.

12. Show up after the kids' bedtime with a bottle of wine (if they're home) or a Dr. Pepper (if they're in the hospital).

13. Take lunch to the hospital. Many times it's just 1 parent and the child in the room and it's impossible for the mom or dad to leave the room and find something to eat.

14. Lend them your Keurig while they're in the hospital. Hospital coffee is the worst.

15. Bring K cups and a cute mug also.

16. Offer to take the healthy siblings on a play date with your kids.

17. Wrap their Christmas presents for them.

18. Give money. Treatment is expensive. Money always helps.

19. Send cards to the child and their siblings.

20. Talk to them about normal things - anything. It's exhausting to only answer questions about cancer and treatment.

21. Plant flowers at their house.

22. Do their laundry. Pretend you didn't see and touch and fold their underwear.

23. Call and have pizza delivered to the hospital.

24. When they tell you the diagnosis say "That sucks."

25. Don't say "I know everything will be ok." You don't.

26. Do you have an old laptop/iPod/iPad that you've been meaning to sell? Give it to them.

27. Buy an extra latte when you drive through Starbucks on your way to work and take it by the hospital.

28. Don't ever bring them a bologna sandwich for lunch. I'm just saying....

29. Do bring dessert.

30. Make them laugh.

31. Don't stop coming around just because you don't know what to say. Admit you don't know what to say and then just be there.

32. Cry with them.

33. Start a GiveForward fundraiser for them.

34. Get your friends together and pool money to hire a weekly cleaning service.

35. Take books to the hospital. For the kid. For the parents.

36. Drop off/pick up their dry cleaning.

37. Feed their dogs (or cats or chickens or goldfish).

38. Anonymously pay utility bills.

39. Take DVDs to the hospital.

40. Or buy them a Netflix subscription.

41. Put lights on their house at Christmas.

42. If you are a stylist and they are your regular clients, do their hair for free.

43. Stop by the pharmacy for them.

44. Don't ask "How's your child?" Especially if you're just passing each other in the hallway at church. It's too broad of a question and it's too hard to answer.

45. Do ask specific questions. "How's physical therapy going?" "When does the next round of chemo start?" "How did the last surgery go?"

46. If they have a blog, follow it. It's much easier on the family to post one update than to have to repeat themselves over and over and over.

47. Donate clothes or toys that your kids have outgrown. Every little bit helps.

48. When they go on their Make-A-Wish trip, enlist your church small group to clean, organize, and decorate their entire house without them knowing. Including buying them new furniture. (Unless they love their furniture. But ummm...we didn't. So this ranks at the top of the List of Kind Things people have done for us.)

49. Give an iTunes or Amazon gift card.

50. Clean the carpets in their house.

51. Take breakfast to the hospital.

52. Do anything and everything to make the healthy siblings feel special. It's hard being the brother or sister of a kid with cancer. Hard.

53. When they have an unexpected hospital stay, stop by their house and get clothes and a toothbrush for them.

54. Do not ever ask "What's his prognosis?"

55. Set up a Care Calendar for meals.

56. Organize a fundraiser (silent auction, spaghetti dinner, golf tournament, etc.)

57. Donate tickets to a sporting event for the child and their family.

58. Just spend TIME at the hospital with them. It gets lonely up there.

59. Create a gift registry for the child's hospital room. New bedding, pjs, robes, slippers, movies, cds, iPod dock, lamp, decorations. Some kids spend months at a time in the hospital and these things make a HUGE difference.

60. Take a cozy blanket to the hospital for the parents. Sleeping in a pull out bed with hospital linens gets old.

61. Send balloons to the hospital for the child.

62. Offer to take/pick up the healthy siblings from school/church/gymnastics/dance/karate.

63. Sponsor a pair of Peach's Neet Feet for the child.

64. Take a basket of snacks to the hospital.

65. If the program is not already at the hospital, request a Chemo Duck for the child. (They're FREE!)

66. Stock the parents' freezer with meals.

67. Give the child a nook (or kindle or ds or whatever they'd love).

68. Buy the healthy siblings the book Hi, My Name is Jack.

69. Change the oil in the parents car.

70. Offer to babysit, either in their home or at the hospital, so the parents can have some time alone together.

71. Offer to teach the mom a simple and portable craft (knitting, crocheting, etc.) It helps to have something to DO while you wait on labs/xrays/scans/rounds/surgery.

72. Organize a blood drive to benefit the child.

73. Give the family an outdoor play set. Public play areas aren't an option for kids in treatment.

74. Facetime with the child.

75. Say "I'm bringing you dinner Tuesday night." instead of "Let me know if you ever need something."

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I'm so honored that Jeannett let me use her space to tell you about my child...about my friends' children....about what we did to try to make a difference for other children through the St. Baldrick's Foundation. Our goal was to raise $50,000 for pediatric cancer research and I'm proud to say we surpassed that goal. It couldn't have been done without your help!
Life.Rearranged readers donated $2,700!
Thank you. Thank you. A hundred times, thank you.
And with that, sweet readers, we leave the series on childhood cancer on a note of empowerment. Cancer is the worst. Ever. Cancer in babies...has it's own category of awful that I'm pretty sure no word in the English language would suffice. But now you can be a Help. A Blessing. An Encouragement You and I may not be able to cure cancer, but we can help be a balm to the very tired soul of a mama. Love all of you.

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My Friend's Child Was Just Diagnosed With Cancer: 75 Ways to Help

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As Vanessa and I talked about the series she wrote for us last month on childhood cancer, we wanted to wrap it up with some tangible suggestions for how you can be an encouragement to families traveling this very long and very hard path.

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Published: March 28, 2013
Updated: January 25, 2018
By Jane Roper
When our five-year-old daughter was diagnosed with leukemia (ALL) last summer, our world was turned upside down.

Extended hospital stays, twice weekly clinic visits, the side effects of chemo and the constant possibility of unexpected hospital admissions mean stress and exhaustion for all of us - and looming in the background of it all is the unspoken worry: will our daughter get through this?

It's a hard time in our lives, to say the least, but the amazing outpouring of support from our friends and family has gone a long way to make it easier.

If someone you know has a child being treated for cancer, there are a lot of ways to help. Here are some tips and ideas based on our experience and that of other families we've met:

1. Don't just ask; do. It's nice to say, "Please let me know if there's anything I can do." But we love even more when people don't leave the ball in our court, but make a concrete offer: "I'd like to bring a meal, if that would help. When would be the best time to deliver it?" or "I'm free this Saturday night. Want me to come babysit so you can have a night out?"

2. Give a gift card. It may seem impersonal, but it's not. Having a child with cancer can be a major financial strain on families, between related expenses (parking, co-pays, take-out food, etc.) or a parent having to work less or not at all. Gift cards for household expenses like groceries, pharmacy and purchases at places like Target or The Home Depot can be a huge help. (Personally, I always appreciated Starbucks cards, too!)

3. Don't forget siblings. Cancer is just as disruptive to the lives of "well" children as it is to their brothers or sisters with cancer. Siblings grapple with jealousy, fear, anger and a host of other emotions. If you want to send a gift for the child with cancer, give something equally special to his or her siblings. Not only will the siblings appreciate it; the parents will, too-trust me.

4. Help later. While it's natural to want to help immediately after a child is diagnosed, don't forget that cancer can be a long haul. There may be months or even years of treatment and hospital stays ahead. And while cancer quickly becomes the "new normal" for families, the emotional and financial strains remain.

I was thrilled when, just recently-a whole six months after our daughter's diagnosis-a friend sent us a gift certificate to a gourmet Italian food store that makes amazing frozen entrees. There's nothing like pulling a delicious, ready-made meal from the freezer after a long, draining day at the clinic.

5. Say something. We are moved and appreciative when friends send gifts, make meals, etc. But we also love getting cards (especially darkly funny ones-but that's just us), emails, or even simply hearing "I've been thinking about you," when we see friends and acquaintances. It's a source of great comfort and strength to us to know that people are sending "good vibes" to our family.

Some friends kept their distance after they learned of our daughter's cancer, later telling us that they "didn't know what to say," or thought that just sending their thoughts or sympathies wouldn't be enough given the magnitude of our situation, so it was better to keep silent. This couldn't have been farther from the truth. We don't need to be handled with kid gloves just because we've got a sick child. If anything, we're tougher than ever.

Of course, all of the above are based on our family's particular preferences and experiences. But I'll go out on a limb here and say that if you're not sure how to support a family dealing with a childhood cancer, you probably can't go wrong with #5.

Jane Roper is the author of a memoir, Double Time: How I Survived-and Mostly Thrived-Through the First Three Years of Mothering Twins (St. Martin's Press, 2012), and a novel, Eden Lake (Last Light Studio, 2011). She received her MFA in fiction from the Iowa Writers' Workshop, and her writing has appeared on Salon, Babble, Poets & Writers, The Rumpus and elsewhere. Jane lives in the Boston area with her husband and twin daughters.

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Five Ways to Support Families Dealing with Childhood Cancer

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By Jane Roper When our five-year-old daughter was diagnosed with leukemia (ALL) last summer, our world was turned upside down. Extended hospital stays, twice weekly clinic visits, the side effects of chemo and the constant possibility of unexpected hospital admissions mean stress and exhaustion for all of us - and ...

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For example, children treated for brain tumors, a leading cancer in children, may experience seizures, weakness in the arms and legs, blindness, hearing loss, neuroendocrine effects that include growth hormone deficiency, hypothyroidism, abnormal timing of menarche and neurocognitive deficits. Other cancers and their treatments also have serious long-term effects.

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For example, children treated for brain tumors, a leading cancer in children, may experience seizures, weakness in the arms and legs, blindness, hearing loss, neuroendocrine effects that include growth hormone deficiency, hypothyroidism, abnormal timing of menarche and neurocognitive deficits. Other cancers and their treatments also have serious long-term effects.

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Childhood Cancer Research Challenges and Opportunities

An American Cancer Society Expert Roundtable Discussion

An American Cancer Society Expert Roundtable Discussion

Children with many types of cancer are far more likely to survive the disease today than they were less than half a century ago. Take for example the 5-year survival rate for those with acute lymphocytic leukemia (ALL) - the most common cancer in children - it stands at about 90% today, up from 57% for children diagnosed from 1975 to 1979. Similar jumps in survival have occurred for numerous other childhood cancers.

But some childhood cancers have seen little or no survival progress, and cancer remains the leading cause of disease-related death in children and adolescents aged 0 to 19. And, many of the treatment improvements that have led to better survival in certain childhood cancers are often largely ineffective in other, more aggressive cancers.

There is also growing recognition and understanding of the harmful side effects that survivors of childhood cancer often face later in life as a result of toxic treatments like radiation and chemotherapy. Researchers, health professionals, and advocates are making increasing efforts to address these and other quality of life issues - not just physical, but emotional and financial as well - that young people with cancer and their families face.

For experts in the field, the topic of childhood cancer evokes both enthusiasm about great progress and frustration with barriers they have yet to overcome. In this Q&A, we invited a roundtable of top childhood cancer experts to share their perspectives on what has been accomplished, what more needs to be done, and the unique challenges children, adolescents, and young adults with cancer - and their loved ones - face during and after treatment.

The expert roundtable:

Professor of pediatrics in the Department of Pediatrics at the University of California, San Francisco, School of Medicine. Shannon is a long-time pediatric cancer researcher and has made numerous breakthroughs in this area. He is also an American Cancer Society Research Professor

Director of pediatric palliative care at Boston Children's Hospital and division chief of the Pediatric Palliative Care Service in the Department of Psychosocial Oncology and Palliative Care at Dana-Farber Cancer Institute. Wolfe has devoted her career to helping children with advanced cancer. She is a former American Cancer Society grantee and was honored in 2013 with the Society's Pathfinder in Palliative Care Award for her pioneering work in this field.

Chair of the Department of Oncology at St. Jude Children's Research Hospital. Pui's research involves the development of "total therapies" for children with leukemia. Pui is also an American Cancer Society FM Kirby Clinical Research Professor.

Clinical research professor at Oregon Health & Sciences University. Bleyer conducts original clinical research in the area of adolescent and young adult (AYA) oncology. He is also a former American Cancer Society grantee.

Ching-Hon Pui, M.D.
Childhood cancer is arguably the most remarkable and rewarding story of cancer treatment in the last half century.
Five-year survival rates for many childhood cancer types have increased steadily. Similarly, cure rates for specific cancers have improved dramatically in recent decades, including for patients long considered at increased risk for a poor outcome because of their age or racial and ethnic background. St. Jude has demonstrated that with the right treatment and supportive care those survival gaps shrink and disappear.

While the causes of cancer in children, adolescents and young adults are still not fully known, genome-wide association studies (looking at sets of DNA in different people) and next-generation genome sequencing, for example, as conducted by the St. Jude - Washington University Pediatric Cancer Genome Project, have transformed our understanding of cancer biology and the genetic abnormalities responsible for cancers in younger patients. Work is really just beginning to evaluate if the genetic abnormalities driving cancer in adolescents and young adults have more in common with children or adults. In younger patients, evidence suggests that up to 10% inherit gene mutations that are a major contributor to their cancer. That susceptibility might leave individuals particularly vulnerable to developing cancer in specific environments. In fact, there is growing evidence that inherited genes help to explain some long-recognized racial and ethnic differences in the incidence of certain pediatric cancers as well as their risk of relapse.

Kevin Shannon, M.D.
There have been major advances in understanding the molecular basis of childhood cancers in the last few years.
We now know a lot more about the inherited and acquired mutations that cause pediatric cancers. On the other hand, although we know more about the gene mutations in some of the most advanced and aggressive pediatric cancers such as acute myelocytic leukemia (AML), alveolar rhabdomyosarcoma (ARMS), and stage 4 neuroblastoma, this increased knowledge has not yet been translated into new treatments. There have been some notable exceptions such as combining a targeted drug with conventional chemotherapy in children and teens with Philadelphia chromosome-positive ALL.

Joanne Wolfe, M.D.
Over the past 15 years or so, importantly, there has been an increasing awareness that we need to focus on the cancer experience and quality of life of children with cancer.
Over the past decade, for example, we have focused a lot on describing the childhood cancer experience. We have uncovered that there is a need for greater focus on communication and how we disclose diagnoses from the beginning to the end of the experience. We have been focusing on amplifying the child's voice and enabling them to report directly on their experience using technology, which kids are very proficient at, to help on a routine basis to report on their symptoms and quality of life.

What we have uncovered from the perspective of the child is a continued need to improve our approach to symptom management because they report high levels of distress. For example, over 50% of kids with advanced cancer report pain and that pain is highly distressing. Fatigue is another symptom that kids report with a high prevalence. We haven't really made very much progress in even thinking about the multidimensional aspects of the experience of fatigue or low energy in children with advanced cancer. But, we have found that simply the opportunity to consistently report on quality of life led to some improved quality of life outcomes, especially with regard to psychological well-being.

Archie Bleyer, M.D.
When I started my career, some 45 years ago, about 90% of children with cancer were dead in just a few years and now the survival rate is greater than 80%.
It did take year after year of hard effort, but the progress in childhood cancer has been a great medical accomplishment. And, there have also been great advancements for adults - those over age 40 - with cancer. The problem is for those in between - the adolescent and young adult age group consisting of those aged 15 to 39. It is not that there hasn't been progress, but in comparison to children and to older adults, this group lags behind. In the last 10 years, there has been improvement in survival for this age group, but in comparison to children, adolescents and young adults lag far behind - and they have actually flipped with children in terms of survival. Adolescents and young adults used to be better off than children in terms of 5-year survival rates for all cancers, but now the reverse is true.

Ching-Hon Pui, M.D.
Adolescents and young adults diagnosed with cancer have unique psychosocial and medical needs that are challenging to their developmental phase.
These include loss of emerging or newly gained independence, isolation from peers, concerns for future fertility, impact on academic and vocational goals, and threat to future health care and insurance access. The Society for Adolescent and Young Adult Oncology was formed to improve care and treatment of these patients through interdisciplinary research, education, communication and collaboration among health professionals worldwide. There is now a journal and annual meeting focused on this group of cancer patients. These efforts reflect the belief that patients between the ages of 15 and 39 are a distinct patient population within oncology.

Pediatric and adult oncology research and clinical agendas are now designed to focus on the unique biological, clinical, psychosocial, and survivorship issues of these age groups. Therefore, significant advances in adolescent and young adult cancer care will require a focused research approach.

I am particularly pleased that adolescent and young adult cancer patients are starting to receive some much needed and deserved research attention. For too long, patients in these older age groups were not routinely enrolled into clinical trials by the research community, which limited the ability to test new treatment options, but in recent years that has started to change. More and more adolescent patients are enrolled in cancer treatment protocols, so there is reason to hope that treatment outcomes should dramatically improve in the coming years.

Among patients with leukemia, older children and adolescents have historically had poorer treatment outcomes than younger children. The reasons for this have been poorly understood. Recent efforts have focused on the biological basis for these differences and have begun to identify important genetic differences between leukemia in adolescents and children. This will continue to be an important area of research across the spectrum of childhood cancers.

Joanne Wolfe, M.D.
Adolescents are going through enormous developmental and growth opportunities - from physical to psychological to social and sexual changes - and all that is disrupted when facing a diagnosis of cancer.
There is a lot to think about developmentally when it comes to an adolescent that is different from a younger child. They are in a period of aiming towards independence and the experience of an illness often keeps them very connected to their families, in ways that are of course beneficial, but also can limit their opportunities to explore life like healthy adolescents normally do. We have to be aware of that disruption as we are caring for adolescents with cancer and we need to figure out ways to smooth that over a little bit, fostering healthy development concurrent with cancer care.

I think we have to be more sophisticated about our interventions and strategically think about what is and is not going to work. For example, one of my mentees is working on an intervention aimed at enhancing resilience throughout the cancer diagnosis, especially targeting adolescents and young adults. The intervention is not only focused on the adolescent, but also on the family, because we know that empowering the entire family can lead to better psychological outcomes in all family members.

Archie Bleyer, M.D.
Not only are adolescents facing different challenges, but they also have different kinds of cancer.
Overall, they are facing an array of different obstacles. First off, being an adolescent is hard enough. For any healthy adolescent, that is the age of turmoil. Issues of race and ethnicity, drug use, sexual development, becoming educated, the challenge of finishing high school and getting accepted to college - it is the hardest time in life for almost everybody. And, then imagine adding a potentially fatal disease to that set of challenges. These adolescents are already challenged and you add the issue of cancer and the stigma it creates, as well as the potential loss of life, at a time when everything is compressed - you graduate, go on to college, etc., in such a few years' time - cancer is something that completely puts all of that at risk. So, the psychosocial development of adolescents is so different and their challenges are unique and inordinate.

They also face financial challenges. Fortunately, now with the Affordable Care Act, all children up to age 26 can stay on their parents' health insurance - so now they are much more hopeful of being able to get to the best care that they need. That has really helped with that challenge. Nonetheless, the challenges of finding a way to get education and become employed gets so much harder with cancer. Fortunately, we are making more progress in this group. Adolescents have had more progress in the past decade than young adults have in being placed on clinical trials. This has been a significant improvement - there has been a doubling or even tripling in the number of adolescents being put on clinical trials for cancers, which is the real hope for the future because their cancers are different and they need different strategies and clinical approaches. Unfortunately, for those older than age 18 and 19, there is no evidence that their placement on clinical trials has improved one bit since 2000. So, my concern is the gap may grow even greater in young adults.

Archie Bleyer, M.D.
New drug discovery is an obvious need for children, adolescents, and young adults.
Cancers in children, adolescents, and young adults are so different that each age group needs its own research effort. And, each cancer needs its own set of treatments - although we are learning that some cancers that seem different can be treated similarly. We need to find new drugs for these cancers - and do the clinical trials. That is where children have had the best outcome, because they have had the highest percentage of patients on clinical trials (more than half) - that is how we have learned which drugs to use to treat their cancers. Adolescents on the other hand have had much lower percentages participating on clinical trials (10%) - so we are missing learning about the drugs needed to treat their cancers.

The main problem is that the local healthcare delivery systems are not yet fully comfortable with clinical trials in the adolescent and young adult group. The health professionals aren't bringing it up as a primary need for patients in that age group. In children, they do bring it up early - they say: "We have a clinical trial for you." This doesn't happen in adolescent and young adult oncology. It is not just health professionals though; there is also the difficulty of trying to get the patients to a clinical trial. A patient has to go to a major cancer center. This is highly organized in children (numerous foundations and organizations help with this). And for an adolescent, who is mired in their social network, settled in their high school, etc., it may be harder for them to leave emotionally and physically in order to go where the clinical trial is.

The lack of clinical trials for this age group is also partly due to financial limitations. For the pharmaceutical industry, what is their motivation to develop agents for patients for whom they make little to no profit? The percentage of adolescents and young adults with cancer, although higher compared with children, still represents a very small portion of the total cancer patient population. The drugs companies see this, but, we need to overcome it.

We need to take the lessons learned in pediatric oncology and apply them to adolescents and young adults. I like to say that the transition between pediatric and adult medicine has created an artificial barrier. Now, we are asking doctors to take care of this overlap group. We have to overcome this artificial idea of children versus adults. We need to rethink and develop a new discipline of young doctors who can take care of adolescents and young adults. And, we as a society have to overcome the idea of someone turning 18 and suddenly becoming an adult. This artificiality is also hurting medicine.

Joanne Wolfe, M.D.
While the number of children affected by cancer is relatively small, the experience has a ripple effect not only for the child, but also for the family.
Some of our research, for example, has uncovered high financial distress, significant financial losses as a result of the childhood cancer, families going from being at middle income levels to poor directly related to their child's cancer experience. That ripple effect is huge. Among children who do not survive, there are long-lasting effects among parents including high risk of anxiety, depression, sick leave and related economic consequences. Bereaved siblings also have a high period of vulnerability, especially in the year following the child's death. Taken together, childhood cancer impacts on the immediate family and even the larger community to a very high degree.

As noted, there are many children who survive, but survivorship comes with consequences of the cancer experience and treatment. Some have long-lasting physical vulnerabilities like risk of heart disease or secondary cancers. Certainly childhood cancer brings with it opportunities for psychological growth, but some long-term survivors also live with learning disabilities and other neuropsychological long-term side effects such as post-traumatic stress disorder. These in turn impact on relationships, employment opportunities, and overall wellbeing. Due to this ripple effect, it is really important to recognize the need for funding to support research to improve not just cancer survivorship, but also the long-lasting effects that the cancer experience results in for the child, the family, and the larger community.

Ching-Hon Pui, M.D.
While great strides have been made in understanding and identifying the genetic basis of pediatric cancers, development of specific targeted therapies continues to lag.
Indeed, many recently identified specific genetic abnormalities are not targetable with current therapies. Much work is being done now to develop more targeted and novel therapies, and to determine the role of these genetic changes in tumor formation and treatment responsiveness. In addition, there is always a challenge to secure enough funding to conduct the comprehensive clinical and accompanying genomic studies in a large enough population to make discoveries in children with cancers, who make up only a small percent of all cancer patients. Because the pediatric cancer community is so well organized and interactive, the percentage of children with cancer being enrolled in clinical trials is much larger than adults, but cuts in NIH funding are limiting the science that can be done.

Kevin Shannon, M.D.
A major challenge is that many advanced solid tumors remain very difficult to treat despite intensive research.
Advanced solid tumors have remained problems in part because we have essentially maxed out what one would consider to be standard treatments such as chemotherapy and radiation. There have not been that many new chemotherapy drugs for childhood cancers in the last 15 or 20 years. And, there are going to be some tumors that aren't going to respond to these standard treatments and for these we need entirely new treatment paradigms. We won't stop using traditional approaches, but we need other approaches such as targeted therapies and immunotherapies.

Drug resistance in patients who relapse after an initial response to treatment is another major problem. Researchers are trying to address these issues by developing better preclinical models for testing drugs and drug combinations (both in tissue culture and in mice) and by investigating new treatment approaches. What we will see in the next decade is selecting tumors based on genetics. We will look at what mutations are present and apply the appropriate treatment. Initially, we will continue to use standard treatments, but over the longer haul we will be able to identify newer treatments that will allow us to back off on radiation and some of the more toxic chemo drugs that lead to late effects and second cancers. A lot will depend on improvements in precision (personalized) medicine and advanced tumor sequencing technologies, which will allow us to better understand what mutations are present and target therapy at them specifically.

Archie Bleyer, M.D.
The importance of adverse late effects is inversely proportional to the age of the patient when diagnosed.
The average age of diagnosis of cancer is 67. So, if the average survival is 10 years, then there is only a 10-year risk of late effects. But in children, they have to live with that late effect for their entire life and the same is true for adolescents and young adults. We have worked very hard on this problem, especially in pediatrics. First of all, we started curing these children in the 1960s and 1970s and now they are in their 40s and 50s and we have now started to learn from them because we have been able to follow them.

These late effects are every serious. First of all, there is the risk of developing another cancer. The treatments themselves have the potential to cause cancer. As we have learned that, we can replace or adjust therapies that cause cancer with less cancer-causing treatments. Hodgkin lymphoma and Ewing sarcoma, for example, have very high rates of second cancers. But we worked hard at finding out what causes it and either replaced the drug with a different agent or eliminated the drug because we found the group didn't need it. And, in Hodgkin lymphoma, the second cancer rate has dropped dramatically in young patients who originally had that type of cancer. But, we have not achieved the same in older children.

Ching-Hon Pui, M.D.
The Childhood Cancer Survivor Study (CCSS) and St. Jude Lifetime (SJLIFE) study have identified specific anticancer therapies that adversely affect childhood cancer quality-of-life outcomes.
These research initiatives have been instrumental in characterizing the social, demographic, genetic, treatment, and behavioral factors contributing to excess risk of late morbidity and mortality and informing health screening and surveillance recommendations for long-term survivors. The field of pharmacogenetics represents one important advance in understanding drug toxicities, particularly individual patient variation in response to chemotherapy agents like mercaptopurine and thioguanine. St. Jude has already begun to incorporate this approach into clinical care.

Kevin Shannon, M.D.
I think the ongoing efforts using DNA sequencing and other techniques to identify patients who have a favorable prognosis will lead to less intensive treatment and fewer late side effects.
Also, replacing genotoxic (genetically damaging) drugs and radiation with more targeted treatments is another promising idea that is in early stages. Many pediatric oncology centers are also developing programs to follow patients long term to try to recognize and intervene early to reduce adverse late effects.

Archie Bleyer, M.D.
The late effects issues in adolescents and young adults have not been studied as much.
There has been a response, though. In the U.S., there are people working on the problem - new programs and centers are springing up all the time. Indeed, it is very impressive what is occurring across the country. What is lacking is organization. The centers and institutions that have discovered how to deal better with late effects issues are not sharing information and collaborating. There is a national late effects program for children, but we don't have one for adolescents and young adults. That is going to happen, I just wish it would happen sooner than I expect it will.

Joanne Wolfe, M.D.
Research should be aimed at improving the cancer experience and long-term outcomes through the systematic development, evaluation and dissemination of interventions.
Many clinical trials are now aimed at modifying cancer-directed treatments to minimize long-term side effects and consequences. Then there are interventions focusing on the child as a person. These complex interventions might, throughout the course of childhood cancer treatment, enhance the resilience of the child and of the family and try to mitigate outcomes like financial distress or post-traumatic stress disorder. Throughout we need to continue to include the child's voice empowering them to be partners in figuring out the best ways to improve cancer outcomes.

Ching-Hon Pui, M.D.
We urgently need to develop therapies that will reduce the need for drugs and other treatments that are associated with long-term, adverse health outcomes.
There has been some progress on that front. In the field of childhood acute lymphoblastic and myeloid leukemia as well as non-Hodgkin lymphoma, improved use of chemotherapies allows us to eliminate the use of radiation and its attendant toxicities. Novel agents might one day make it possible to reduce the need for radiation therapy or carcinogenic agents for treatment of brain and solid tumors as well. To really address this problem, we need more effective, less-toxic targeted therapies. However, it will likely be decades before targeted therapies are developed for most childhood cancers, and therefore the use of curative combination chemotherapy will remain the mainstay of pediatric cancer treatment, and the challenge will be to use them more successfully and with less toxicity. To that end, our pharmacogenomics research is focused on identifying patients who are at high risk of specific toxicities of cancer chemotherapy, and develop strategies to mitigate these side effects and to improve quality of life without compromising the excellent cure rates for many childhood cancers.

Kevin Shannon, M.D.
Eliminating radiation and drugs that damage the DNA is perhaps the most important area of investigation to really address this problem by preventing it.
The key to late effects is like the key to infectious disease. The key to preventing infectious disease, like meningitis for example, is vaccination, which keeps it from occurring in the first place. In pediatric cancer, the key is developing drugs that don't cause the late-effects issues to begin with. In a couple decades or more we will be changing the drugs and treatments we currently use. That will be a big frontier, but maybe a little further down the road.

Archie Bleyer, M.D.
Perhaps one of the most exciting developments has been the ACA requirement that clinical trials have to be covered by health insurance.
This has eliminated the argument that the clinical trial will cost my family, my child, or spouse too much. So, support of clinical trials by the ACA as well as the ACA requiring insurance companies cover everyone regardless of preexisting conditions - that to me is as exciting as anything in the ability to improve research and getting at the basic issue of addressing how to treat different cancers in children, adolescents, and young adults.

Joanne Wolfe, M.D.
What is promising to me is that there is an increased focus on quality of life and the childhood cancer experience and the idea that we are becoming more sophisticated in how we are approaching this area of research.
For children and their families, treating the pain, symptoms and distress of cancer is as important as treating the disease. We are not presuming what is right or wrong, but we are testing interventions systematically and in a comprehensive way. We are now eliciting the voices of children and adolescents and through their direct feedback we can figure out ways to gradually and in a more nuanced manner provide a supportive environment for them during their cancer experience and beyond. For me, this is a critical area that needs to be continued and further developed so that we have a better understanding of how we can take care of these kids and their families. I would love to see a system where we are uniformly using similar tools across centers to track the childhood cancer experience so that we can then start building very comprehensive and effective interventions.

Kevin Shannon, M.D.
I think using molecular data to personalize care to increase effectiveness and reduce toxicity by giving more specific treatment is perhaps the most promising area.
Many targeted agents are in development or being tested in early clinical trials.

American Cancer Society news stories are copyrighted material and are not intended to be used as press releases. For reprint requests, please see our Content Usage Policy.

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Childhood Cancer Research: Challenges and Opportunities

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For experts in the field, the topic of childhood cancers evoke both enthusiasm about a story of great progress and frustration with barriers they have yet to overcome.

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St. Jude Children's Research Hospital Fighting Childhood Cancer | Part 1

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We visit St. Jude's for a look at the inspiring work they do to help fight childhood cancer. For more Channel One News updates subscribe to Channel One News: https://www.youtube.com/user/ChannelOneNews Visit the Channel One News Website: http://www.channelone.com Facebook: https://www.facebook.com/ChannelOneNews/ Twitter: @ChannelOneNews Instagram: @channelonenews Channel One News is the leading news program for young people across the country.

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The Leukemia & Lymphoma Society Children 's Video

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Are your children interested in making a difference in the lives of blood cancer patients? This short video features young cancer patients talking about how other youth can get involved in improving outcomes for blood cancer patients and children with cancer.

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Part One: How are children affected by childhood cancer?

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Part One: How are children affected by childhood cancer?

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Day to day life for a child with cancer can be very difficult both for the child and those caring for them. Parents and the patient can face many challenges and changes. At times parents may feel overwhelmed and unsure about what the future holds. Knowing what to expect and who to get support from can help the family cope throughout treatment.(www.cancervic.org)

Often times, children going through cancer will experience:

hair loss

fatigue

pain

nausea

low blood count

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Power of One Question: How are children affected by Childhood cancer? What are the biggest obstacles while battling? How can one person, a community, or the nation help support these children and their family?

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Power of One Question: How are children affected by Childhood cancer? What are the biggest obstacles while battling? How can one person, a community, or the nation help support these children and their family?