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Camps where kids can be sick and still have a blast
Wigs for Kids
Medical breakthrough in Neurobolastoma
An alternative to traditional radiation
and more …
Dealing with childhood neuropathy
Neuropathy, which is nerve damage from chemotherapy, is common in kids who have faced cancer. The condition is very undertreated, but if you catch it early, the effects can be hugely minimized if not reversed and squashed completely. The nerves can actually heal, if you know what to look out for and what to do about it.
What do look for
Neuropathy in very young survivors can be hard to pinpoint because kids are great compensators and because unlike adults, they rarely get pain; rather they will have weakness in their ankles and hands. If you recognize the compensations, you can often minimize weakness while they are learning new skills.
“Watch for balance problems. And know that often the child will walk with what we call a foot slap where the foot slaps loudly against the ground. Or they’ll have a short step or walk on their toes because of weakness in their ankle muscles,” says Lynn Tanner, a physical therapist and rehabilitation clinical specialist in oncology for Children’s Hospitals and Clinics of Minnesota.
Also be aware that these children not only have less feeling and function in their feet and ankles, but in their hands.
Correcting the problem
If parents see problems with ankles and large muscles, they should get a referral to a physical therapist from their child’s pediatrician, general practitioner, or oncologist. An occupational therapist can work on hand weakness and fine motor skills.
“Through exercises done in session and others done at home that are more like games, kids learn to properly use their feet and ankles so they will not carry bad habits through life. They get stronger during and after treatment and are able to more easily run, jump, and overall gain agility,” says Lynn.
Physical therapy exercises focus on strengthening muscles and teaching correct motor patterns. For example therapists work with younger kids on taking the stairs with one foot on each step.
“We show parents how they can help their children, too, which could be having them hold railings while the parent holds their hand. And we walk them through exercises to do at home.”
Children may put a red sock on then a blue one to teach right and left and ultimately learn to do one foot on each step. This exercise accomplishes two things: strengthening muscles and teaching the brain and body to work together.
Gait training corrects the problem of walking toe first rather than heel first to prevent or correct flat foot and increase walking speed. It can be done on a treadmill, in a hallway, or outside.
Balance training focuses on exercises like standing on one leg for 10 seconds or standing on an unsteady surface like a couch cushion or air mattress.
Braces may be used at any age to correct abnormal walking or to stretch ankles.
“How long the braces are necessary varies. It could be two months to a year, but the good news is, it works great. The children we see end up with normal flexibility, good foot posture, and can keep up with their friends,” says Lynn.
Kids have homework, but it’s more like fun and games
It’s often something that takes very little time, maybe toe raises while they’re brushing their teeth. Or parents will be asked to put tape in the middle of the hall for their children to use as a balance beam to practice walking heel toe, or walking backwards each time they pass the tape so they get repetitive balance training.
Younger kids may walk across an air mattress while putting together a puzzle. The puzzle pieces are on one side of the mattress and they have to reach and squat to get them. This exercise is good for balance and strengthening.
Older kids may for instance stand on a cushion with their feet together while playing a video game.
“These kids can have normal abilities and strengths. If we catch the problems early we can continue to teach correct skills and avoid compensations,” says Lynn.
“If we catch neuropathy late there is still a lot you can do; it just takes a little more work because we are retraining habits.”
For more information:
Check Childrensmn.org beginning in late 2012. Parents will find signs of neuropathy, an explanation, and what to do. There will be pictures and videos with examples.
To speak to a physical therapist “one-on-one”
Lynn Tanner: 612-813-6274; firstname.lastname@example.org
Cyberspace hugs for kids with cancer
Cancer can be so isolating for kids, but they can turn to cyberspace for private websites, exclusively for them, to help them feel less holed up during treatment and beyond. Sites that are age-specific, and sometimes diagnosis-specific, help young survivors stay connected with their friends and make new ones.
These on-line communities bring on professionals, peers who are years beyond diagnoses, and or kids in the same place as them, to help them through their journeys. They share stories in confidence, on their own terms, leaning on each other through one-one-one conversations, discussion boards, or other forums.
Some of the sites offer activities beyond reading and talking, from cross word puzzles and games to contests. Some link to other resources, like a free, Pac-Man-like video game where gamers pump up their t-cells (survivor cells) and go after the bad guys http://www.cancergame.org/.
2bMe, for teens, has brightly colored tabs like About Face,Head Way, and Social Circles. In a few quick clicks kids get information on appearance, nutrition, and staying socially connected while staying safe. 2bMe has tips on makeup application during treatments and how to deal with hard social situations. Teens are gently reminded to slather on the sun screen before they go out; to stay away from salad bars and any open food. And they are encouraged by a voice and tone that typically works for them: “Don’t freak; it’s not forever.”
Starbright World is another “virtual hangout” for seriously ill teens; it’s to support them while they’re in the hospital or laid up at home. Siblings are invited to join in. Members tap into on-line chat rooms, contests, places to post photos and videos. They can ask each other the questions, like what does radiation feel like? Or what has made your headaches better?
Band-Aids and Blackboards has special sections for kids of all ages. Click on the home page and you’ll find three pond icons: one that leads to content for young children, one for teens, and one for adults. Tap on the backs of neon green frogs to navigate the site, beginning with a table of contents for an overview of offerings, a few of which are a glossary of terms, games, and “silly hospital pranks.” Kids are invited to tell secrets privately, or to share their story on line and invite others to write them.
The National Children’s Cancer Society also has an on-line community with multiple features enabling kids to share their personal stories, poems, photos – you’ll find great before and after treatment snapshots, high school graduation photos, a little bald head with a bright red kissy lip tattoo … Among specific site features are the child’s private page. It works like Facebook; other members can leave comments, usually a quick, personal “hi, how are you doing?”
In addition to their own page, kids can tap into forums to connect with the community at large, typically over diagnoses-related topics. It’s a place where kids can ask for advice. The community also has blogs for posting details of their personal journeys. And if members are so inspired, they can contribute regularly to the featured bloggers tab.
These are but a few on-line social hubs for sick youth. You may want to shop around for the best fit – the one that works to help your kid stay a kid through tough times.
On-line communities for children with cancer:
Teens in Canada
Young children and teens
Young children in the UK
Keeping kids’ playing and learning grounds level after cancer
School becomes a very different place once your child has cancer. Keeping them up to speed and “in the loop” are important—and it’s natural to worry about how best to do it. For your child the worries may go something like this: Will the kids forget me while I’m in the hospital or getting better at home? Will they tease me when I come back with no hair, or if I can’t run like I used to?
For parents the concerns may be the same—and then there are questions like is staying up with academics important now? How do I make sure he is pushed only as far as is healthy? What if she gets exposed to chicken pox or flu? This article will look at ways to keep children living as normally as possible, so they can be “regular kids”, while getting special academic, physical or health needs addressed on their way to better health.
Building a team
You’ve probably already seen it: this illness brings unknowns for everyone, even teachers and principals and most definitely your child’s classmates. So it’s a good idea to help them understand what’s going on with your son or daughter and to even make them part of the team. It helps for “outsiders” to know what to expect and how they can teach, play with, and support your child. This applies to both while they are out of school and once they’ve returned.
While your child is away from school
Notify the principal and or teacher that your child will be out for a while; estimated absence, and why (treatment, recovery from treatment, etc).
Chose an advocate to keep teachers and classmates up on what’s going on. This person could be a hospital social worker, hospital nurse or psychologist. Someone who knows school programs and policies, speaks well, and is very approachable.
Have “messengers”—maybe the advocate or you, if you have time—go into the classroom with pictures and to update on what’s going on. This messenger can even send notes from your child or audiotapes of him/her. And can tote assignments back and forth (lessons can be adapted).
You could have the school nurse or a member of your child’s treatment team give a presentation on what your child will look like, and anything else that may be different once she’s back in school. This person can answer questions.
You can invite the kids (usually through the teacher) to send class pictures, drawings, notes, to text or e-mail your child. And if he’s up to it, to visit him.
Time to to back to school
Make sure the school has records of your child’s health status, medications, possible side effects or other symptoms, who to call and when.
Be sure you are alerted if there’s an epidemic, like chicken pox, measles or flu, so you an seek immediate preventive treatment.
Communicate on whether your son or daughter will have physical or learning-related limitations tied to concentration, fatigue and other possible treatment effects.
If there will be limitations, make sure they are addressed. For instance, tell the school if recess and physical ed participation are options, if the duration has to be altered or other accommodations like adaptive equipment are needed. You may arrange for snacks or for rest time in a quiet place so your child can rejuvenate.
You may want to think about an IEP (individual education plan), a formal plan where special accommodations are put in place, like someone to help one-on-one, in or out of the classroom. You can arrange for more time for tests or to get from class to class. IEP’s can be adjusted as needs change.
Make sure the school understands any reservations or concerns your son or daughter has and that there’s a guidance counselor or some staff person your child connects well with he/she can talk to. This person can help kids with issues like how to answer classmates’ questions.
And know that some cancer centers have a formal school re-entry program to address many issues we’ve just discussed. If you have access to such a program, ask for the liaison to help you get a plan in place.
For more information:
Call American Cancer Society 800-ACS-2345 for printouts and outreach programs for teachers and parents. Canadians can find information through Canadian Cancer Society’s Cancer Information Service 888-939-3333.
Returning to school after cancer
Teens with cancer and school
School after cancer
Spreading the love to sick kids
Martin Mahkovtz is an interesting hybrid. Half Santa Clause-like character, half computer geek—and one hundred percent kid lover. He especially falls for the sick ones, which is why he launched LaptopsofLove. Through this grassroots charity, children in treatment for life-threatening illnesses can get free computers, completely customized to their personal interests.
“If a child’s favorite toy is Legos, we find child-safe links to Lego websites where they can learn to build things. And I would install 3-d art, because that’s what they play with. That’s what they visualize in their heads,” says Martin, a creative tinkerer, himself.
He’s recruited a small team of volunteers to assist with some of the bells and whistles, with two lead players being his close friends: web developer and graphic designer Dirk and Alla Salchow. Together they may put up to 100 hours into each machine—cleaning off the data, finding parts, then building it with the child’s favorite colors, favorite cartoon characters talking and singing and moving across the screen. And excerpts from their favorite movies. Kids from three to over 17 also get painless doses of age-appropriate math and English tutorials.
The LaptopsofLove seed was planted in Martin’s head 27 years ago, when his daughter was born with a rare disease, though he wouldn’t realize the concept until four years ago when another family trauma happened.
“My daughter was born in 1984 with infantile myofibromatosis. She had benign tumors on her lip, ribcage, arms, and legs. It was a huge shock when the nurse whisked her away, then hearing there were only 239 cases, and Rachel was the only one of them still alive,” recalls Martin.
“We were lucky. The University of Tucson Medical Center took care of us. They covered all Rachel’s medical expenses because at that time in life my wife and I couldn’t afford to.”
Then another blessing: within a few weeks, the tumors deflated after a biopsy, then completely disappeared.
Fast forward to 2007, when Martin’s three-and-a-half year-old grandniece was diagnosed with a brain tumor.
“Days after her MRI, Nora woke up from a 13-hour surgery with tubes inside of her, an eye turned inward, and Mom and Dad had just left because you have to sleep sooner or later. I remember how frightening it was for us as adults with Rachel, and I knew Nora had to be feeling scared and alone.”
With his niece still in bandages, Martin was tinkering with a broken-down computer given to him as partial payment from a client of his custom wrought iron shop. He rebuilt it into a machine that Nora could turn on as easily as humanly possible, to stay connected to Mom and Dad. And he threw in some perks.
He revamped an existing operating system to allow over-sized, animated icons to walk her through what she needed to do–call call Mommy and Daddy to talk, and even see them on Skype. She clicked on a trumpet to play her favorite songs. She tapped on a a mamma and baby elephant to watch animal and nature videos that soothed her.
“When a devastating illness and all that comes with it are put on a child, they don’t get to be who they are supposed to be. I want them to be a kid again. To smile and laugh and lose some of the worry. And truthfully, the gift is ours. It’s an honor when a family lets me into their lives so I can try and help,” says Martin.
To parents who want a computer for their child, you go through your child’s caseworker, doctor or nurse. The information you or your little one share is strictly confidential.
Also, anyone who’d like to help can donate a laptop or desktop computer, parts, technical expertise, or make a monetary donation.
By now the LaptopsofLove team has shipped over 300 computers all over the country.
“One day, if we can get the shipping donated, we can send even more,” says Martin.
For more information:
When six-year-old Bradley Stanton was diagnosed with a brain tumor last February, a stranger gave him a very personal gift that made trips to the hospital easier; actually he started looking forward to the treks. The gift was a necklace with his name on it, and little by little, Bradley added new beads with special meaning. Wood or plastic charms, each telling a snippet of his cancer journey. Every step of the way, Bradley, and by now, over 50,000 children with life-threatening illnesses, get new Bravery Beads as they forge on to better health.
For chemotherapy, children are awarded a multicolored bead. If they have a lumbar puncture, they get a fuchsia one. It’s balloons for their birthday; a daisy happy face for finishing treatment; and a gold heart for a central line, port or PICC, to name a few of the colorful symbols little survivors collect.
“The necklaces document and honor children’s very challenging experiences, enabling them to tell their unique story in a tangible, visual way. They become precious keepsakes, seen as medals or badges of courage”, says Darren Enkin, co-founder of the project that he and his wife, Corinne, started in Canada. The Bravery Beads project has since spread to almost all fifty of the United States, with new locations added monthly, and it will soon go international.
Kids wear their beads proudly around their necks, wrap them on their wrists, dangle them from their IV poles, and attach them to their toys.
To see these children light up through such difficult times is priceless, as are their stories, says Darren. In fact he’s compiling a book of many of their experiences to spread awareness of childhood illnesses and to help families in similar situations connect.
“I’m highlighting their journeys, their bravery, and how these keepsakes that tell of their milestones have helped them along the way. A little girl, Sadie, who made a set of beads for a gorilla she’d befriended at a zoo. He was going through a similar procedure. Parents whose daughter sadly lost her battle. Kamryn was laid to rest wearing her necklace. Mom and Dad had images of her unique beads tattooed on their wrists honoring her and her journey. For many kids and families Bravery Beads represent a celebratory slice of life, a way to wear their pride, and who these special children are, in the open.”
The Bravery Beads program is facilitated at hospitals, usually through the Child Life Department. But if your child is not being treated at a participating hospital and you would like to get involved, you more than likely can. Call 305-535-9097 to be connected with a program.
The program is supported through sales of Bravery Hearts jewelry at:
www.braveryhearts.com/shop.html, at special events at children’s hospital gift shops, and through private donations.
Kobey Pritchard has always been a funny, happy, confident kid, even after he got cancer and had to have one of his legs amputated. But being sick and with one less limb for running and climbing and biking meant having to learn how to hit the ground running all over again. And it meant getting comfortable around other kids, knowing that some of them were staring at him. So just after his diagnosis, when he was six and about to go off to summer camp, he had some reservation. The uncertainty didn’t last long though. Mainly because he was with other kids like him, some who he was already getting to know from the hospital where he went for chemo. Even his oncologists and nurses came out for the week-long party at Camp Heart Connection in Boone, Iowa.
“Leaving Kobey there was not hard; I knew he was in good hands,” says Kristie Pritchard, the now 11-year-old survivor’s mother. “The counselors were sending me pictures of my kid with lightning bolts and all these other crazy rub-on tattoos on his bald head. And they’re telling me stories that had me going, like how the kids asked him what happened to his leg, and he told them he was swimming in the ocean and a shark bit it off,” Krisite laughs.
The camp is free of charge for five to 18-year-old children with cancer, and another camp is open to their siblings. They’re welcome to come back year after year, and many do. It’s a safe, happy place where they see you can still have a good time when you’re sick.
Some are in remission and some are in treatment, which they receive at the campsite or nearby hospital, depending on their protocol. The activities can be individualized for them, too. Most of the campers manage to work up the energy to bike ride, do the zip line, swim … But even the few who are having a rough go seem to love being out in the open. It’s a chance to sit by the pool with the other kids, make friendship bracelets, or just kick back in their cabins with counselors, several who are survivors themselves and who let them know they will get through their treatments.
Kristie believes camp is why Kobey got back in the saddle, almost right away.
“After he lost his leg, he wasn’t sure what of his old activities he’d be able to do again. But he’s back on his bike; he’s riding it down hills with no hands and one leg. And he’s fallen in love with sports he’d never been into before that he was first introduced to at camp. They have a big rock wall. At first they weren’t going to let him go up it, but he had to try it. Now if there’s anything he can climb, he’s on it.”
Kobey, getting ready to pack up for the fifth year, has gotten into competitive swimming and baseball, and camp was his introduction to horseback riding. He’s still doing it.
“He went on a day trip to a farm a while back and had to be the line leader. He had to show every kid who hadn’t ridden the way,” says proud Mamma.
“Kobey was high energy and loving adventures before cancer. But camp has given him the confidence to stand up to the relearning experience, away from home, and with one leg. The nurses, the doctors, and counselors who volunteer their time are so into making it the best experience for these kids that they can. They make it so easy for them to want to do this.”
This year’s registration deadline is April 1, though if you call a few days late and there are openings you can still get in. Camp runs from June 12 – June 18. Sibling camp is August 14-20; the registration deadline is June 1.
For more on Camp Heart Connection:
For nationwide lists of camps for kids with cancer (most of which are free of charge):
Wigs for Kids
He was a successful hairdresser with a thriving business. He traveled all over the world to work with powerful presidents and gorgeous models. But Jeffrey Paul changed paths when his 15-year-old niece walked into his salon crying. She had leukemia, but it wasn’t just the illness that was tearing at her.
“Uncle Jeff, you know I’ve been trying to get on the gymnastics team all my life,” she cried. “My hair is going to be falling out when it’s time to try out.”
“I promised her that she would have hair,” Paul says. “And when you make a promise to a kid, you keep it.”
He started to research designing wigs for children and learned it was complicated, mainly because they’re smaller and more active than adults. How to keep it on their heads, how to make sure it still looked like real hair after it got wet were some of the challenges he had to overcome. He worked with doctors and prosthetics specialists to devise a child-proof piece, and his niece had a beautiful head of hair again, in time for her meet.
“She jumped off the apparatus that day, looked into the stands at us, pointing to her new hair, smiling. Tears ran down my face. I knew that God was taking me to another place in my life. The time was right for me to reach out,” says Paul.
His niece’s story spread through the community when a local newspaper picked it up – his chance to reach out to people in need.
“The day after the article ran, I received 500 wigs. But they were beyond repair,” Paul says. “People meant well, but they sent us wigs that had been in their closets since the 1950s.”
He and his wife kept going, investing to start a wig bank to help needy children and adults.
Shortly after, a flood that destroyed his salon nudged him into a major life transition – he opened Wigs for Kids www.wigsforkids.org. Through his business he custom designs human hair wigs for children and adults who lost their hair because of medical conditions. Each wig is made from natural hair, created from a mold of the person’s head.
You could say Paul has his work cut out for him – it gives him what he needs to know he’s done good.
“Children shouldn’t have to worry about how they look, especially when they’re in the middle of a health crisis,” says Paul. “We want to help them feel good about themselves again. And it happens. They look in the mirror and their eyes light up. To see that light in their eyes – that’s priceless.”
Medical breakthrough in neuroblastoma
A new experimental immunotherapy has bumped up the cure rate of childhood neuroblastoma by 20 percent. The study results brought drama to the 226- participant trial in 2009 –with investigators hitting the brakes to switch children in the control group from standard therapy to the new regimen. The discovery was the first medical breakthrough in a decade for this rare childhood cancer which grows in nerves cells in the neck, chest and abdomen. The way the new therapy works is by using a manmade antibody called ch14.18 to target the aggressive tumor cells, most commonly found in toddlers. Though some children become sick as infants or teenagers.
Two years following treatment, 66% of children had not relapsed, compared to 46% who received the standard therapy, retinoic acid. Lead investigator, Alice Y u, M.D., University of California, San Diego, believes there is as high probability the patients who are cancer- free are cured, as relapse usually occurs within two years.
“This is the first clinical trial to document that [the] combination of anti-cancer monoclonal antibodies with cytokines (natural hormones that help the immune system) is an effective anti-cancer therapy,” said Yu.
Beginning in 2011, the Children’s Oncology Group will run further clinical trials, combining the therapy with other agents, http://www.childrensoncologygroup.org/. One more step forward in the battle against one of the toughest childhood cancers.
More on neuroblastoma:
An alternative to traditional radiation
Proton therapy is saving tissue in cancer’s littlest patients while getting as effective results as traditional radiation treatments. And with minimal side effects. The way it works is by sending high-energy protons to a very specific area, with the dose going no farther than that spot. With more common radiation that uses x-rays, radiation continues through the body, affecting organs and tissues. The broad-reaching radiation has been an ongoing concern as 80 percent of kids beat cancer – and not so uncommonly eventually have long-term effects from high and long-term dose of radiation.
Proton therapy reaches the tumor with a pencil-thin beam that’s within one millimeter of accuracy — generating fewer side effects and improving tumor control. The technology may allow more aggressive treatment or treatment in sensitive organs, such as the lungs, bowel, or intestine, say the few radiologists who deliver this therapy.
Among pediatric cancers proton therapy has been used for are brain tumors, sarcoma and lymphoma. It is indicated for children requiring aggressive treatment with moderate to high doses of radiation. The most promising results in pediatric oncology have been in tumors of the brain, head, neck, spinal cord, heart, and lungs, according to specialists at M.D. Anderson’s Proton Therapy Center in Texas.
Specialists there administer the radiation daily (five days a week) for up to six weeks, depending on the tumor type. Patients may still have side effects, in particular from the organs and tissues adjacent to the tumor.
To learn about proton therapy for children and treatment locations: