Author: sarambarton

One of the toughest things for parents, when a child is seriously sick, is to focus on engaging the child in activities. Why? We tend to think that children can’t and shouldn’t do anything when ill. They should conserve their energy and just focus on getting better.

But what happens to children who are seriously ill, especially if it’s cancer and the outcome is uncertain? Do we send them the wrong message by putting learning and fun aside?

What do children need to hear when they have a serious illness? That there is nothing we can do to help them? That they are destined to lie in bed and watch TV all day long or play video games? The trouble with that is they aren’t socializing in a meaningful way.

Children who are ill over a long period of time can sometimes lose their emotional connections to family members. Their illness and medical treatments can create a serious sense of isolation and abandonment for them. This can result in attachment disorder.

Even children who are confined to bed can still connect with family through games, play, and projects. You can still play “Simon Says” with your child, even if you just limit movement to the fingers, hands, and face. Your child can still play on his or her bed. Even sick children can create projects, books, and drawings. But to do that, they need parents that are willing to make the effort.

Sometimes parents get so bogged down by what cancer does to their child, they stop seeing what their child can do for himself or herself. If all you can think about is the cancer, you’re not living in the moment. You’re not empowering your child to play, to learn, and to grow.

If your child’s cancer care has him or her stuck in bed, make good things happen. Help your child stay connected emotionally and physically to family and friends. Don’t let cancer determine the state of your child’s emotional health. Be proactive. Give your child a chance to use this time to forget about what cancer has done and to just have some good, old-fashioned fun.

For more tips on helping your child during cancer, visit:
The Practical Caregiver Guides

DVD players are fairly inexpensive, and your loved one can also use one to watch movies. Many computers have built-in drives that will play these. Why not utilize them to help cancer patients feel connected to the “real world”?

You might be surprised at how easy it is for cancer patients to fall out of contact with family and friends. It’s easy to feel forgotten when the phone doesn’t ring as often and there’s nothing in your inbox or mailbox. Cancer treatment can be very isolating for your loved one. Making the effort to stay connected is important, and caregivers can really help by encouraging the extended circle of family and friends to remain in touch.

It’s hard for parents to see their child in a bed,overwhelmed by cancer and its treatment. So many times, families spend their days at the hospital, watching helplessly as their loved ones get radiation, chemotherapy, and even surgery.

Usually, the disruption to family life puts a tremendous strain on everyone. The child with cancer suffers from the side effects of the treatment and from the cancer itself. The parents suffer the emotional anguish and often physical burden of having a child seriously ill. And the siblings, too, find that childhood disappears in the midst of such a grave situation.

Sometimes the hardest thing to do during this time is to stick to family routines and traditions. If you’re familiar with hospital life, you know there’s rarely a schedule that goes right.

But parents can do some things to keep the family focused, even when a child is hospitalized. Whenever possible, stick to normal routines. If your child regularly naps in the afternoon, make that a quiet time. Tell relatives and friends that is not a good time to visit. Stick to normal bedtimes as much as you can. Half an hour or so before your child normally hits the sack, turn off the TV. Remind your child to brush his or her teeth. Read some stories together. Help your child to settle down for the night.

To many parents, it may sound strange to have your child follow routines when seriously ill, but the truth is it can provide a sense of security during a stressful time. Structure and routine tell your child everything is “normal” and that you’re still in charge of their lives in a positive way.

It’s also good for you. Sitting in a hospital, day after day, is emotionally and physically exhausting. When you keep family routines going, it allows you to have some control over your life. You’re making parental decisions for your child. The doctors and nurses will make the medical ones. As much as it is difficult for you to watch your child go through cancer treatment and deal with the side effects, you need some structure and routine as well.

Engaging your child in play is another way that parents can help their children. Play allows a child to release stress  and anxiety that builds up during the day. Whether you challenge your child to a game of cards or to draw a special picture together, you are showing your child you still believe in him or her.

Sometimes the hardest part of cancer treatment is to leave it behind for a little while and just have some fun. Laughter can lighten the heart and opportunities to learn and have fun can help a cancer patient feel more normal again. They feed the soul. As a parent, you still have power to help your child in very positive ways. Use it wisely and appreciate it for what it is.

For ideas, tips, and activities for children with cancer, visit my websites:

THE PRACTICAL CAREGIVER’S GUIDE FOR SICK KIDS STUCK IN BED
https://sites.google.com/site/thepracticalcaregiversickkids/

BARKLEY AND RUFFUS MCDILLY’S GUIDE — HELPING SIBLINGS COPE WITH A CHILD’S SERIOUS ILLNESS
https://sites.google.com/site/barkleyandruffusmcdillysguide/

It’s hard to know what to get a child who has cancer for Christmas. Often we forget that there are opportunities we can utilize to help the child stay involved with life.

Depending on the age of the child and his or her abilities to engage in play while under medical treatment, family and friends can actually choose from a wide range of toys and games.

Many children hospitalized will probably tell you they are often bored. It’s hard to be stuck in a bed for hours on end. If you don’t have the energy to go to the play room, or if you are isolated from other children because your immune system is down, you should still have the chance to play.

Travel-sized games are great for kids who are stuck in bed. They can be played on a tray table or a foam board that you buy at the local office supply store. When a meal comes, you just lift the light-weight board off and set it aside. These are also great for doing puzzles.

Never underestimate the power of a kit for a child cooped up in a hospital bed or at home. There are many award-winners that have been tested and approved by experts. If your child is a doll lover, you can find a cardboard doll house kit that your child can decorate. There are kits for making little purses, gardens, jewelry, memory tiles, and so many other things.

But sometimes even just simple gifts, like a deck of cards, can offer a child hours of fun. You can get fancy and find colorful illustrated versions of Old Maid, Go Fish, and even Uno. Cards don’t take up a lot of storage space at the hospital. They tuck into a drawer.

And there’s always Rubik’s Cube, the ever-challenging  3-D puzzle.

But sometimes there are simple little gifts that can mean a lot. Snow globes can be a wonderful bedside Christmas decoration when there isn’t room for a tree. It’s a magical wonderland of hope and promise.

Even when held down by illness, children are still children. If their bodies can’t provide them with adventures, bring the adventure to them. Give them the opportunity to exercise their minds.

For more suggestions and tips, visit my free guide, The Practical Caregiver’s Guide for Sick Kids Stuck in Bed:
https://sites.google.com/site/thepracticalcaregiversickkids/

What can you do with a cancer family website, to help support your loved one through active cancer treatment and beyond?

1. Keep family and friends in your loved one’s circle updated on the current situation. When you create a blog page, you or your loved one has the opportunity to communicate important information to those in the circle.

2. Give your loved one a chance to create a list of wishes, hopes, dreams, goals, or anything else that he or she needs. By sharing this with the circle, your loved one can find support and encouragement, and possibly even help.

3. Notify the people in your loved one’s circle of events and fundraisers that are undertaken on behalf of your loved one, or even family trips to special places.

4. Create a “contact” list of those people in the circle, with addresses, phone numbers, and email information. This can help when people want to join forces to help your family.

5. Share photos of your loved one, as well as anything else that matters to him or her. Maybe your loved one has favorite memories to be shared, or a special event. By creating a web page for this, the circle has the chance to be a part of your loved one’s life.

6. If your love one is undergoing a special treatment, such as a bone marrow transplant, the website can help your family and friends stayed in touch, even if you need to travel out of state for the care.

7. Create a family calendar of events that is accessible to the circle. This is wonderful when you need help with transportation, child care for the family when your loved one is having treatment, or even to notify your circle of social gatherings.

8. Have a “To Do” list of needs that your family is having trouble meeting during cancer treatment. If you have children, you may want family and friends to help them stay active while you are managing cancer treatments. Siblings often have a difficult time, and having the chance to get out with family and friends can relieve the stress and fill the gap. Parents of children with cancer and parents who are the cancer patients often don’t have the time or the energy to provide the kind of attention and activities children need. Let friends and family help by letting them know this is needed.

Children undergoing cancer treatment are often out of school for extended periods of time. A cancer family website could help your child remain connected to his or her social circle during absences. It’s really hard for children to be separated from their friends, but sometimes it’s necessary. Finding ways to help them through such times is very important for emotional support and for social development. You might create a list of books your loved one has read.

Whatever you do when you put together a cancer family website, remember that privacy can be a serious issue. You can restrict access to the family website, and I recommend doing this. You can also make the calendar accessible only to those on your list.

If you would like more ideas on family care-giving during cancer treatment, visit:
The Practical Caregiver Guides

In a perfect world, all cancer patients would be cured of this insidious disease and they wouldn’t have the side effects that come with surgery, radiation, and chemotherapy. But alas, cancer is what it is.

Is there too much pressure on cancer patients to cure themselves? In our effort to believe the impossible is possible, do we push cancer patients too much, to the point where they feel they have failed when cancer spins out of control? How can we help them to engage in their battle against cancer in a more realistic and honest way?

We know that attitude is a huge part of keeping a patient moving towards cure. If you believe that there’s a good chance you can be cured, you will undergo treatment and follow-up care more regularly, and that will keep you in better shape to get past the obstacles that stand in the way. But there is more to cure than just attitude. And that’s where setting realistic goals is important.

Do we ask an average athlete to compete in the Olympics? Or an untrained singer to sing a difficult aria? Or someone who is new to chess to play a chess master? The scales aren’t tipped in favor of those who don’t have what it takes. Most of us are not super-human and we don’t have super powers.

Perhaps we should be helping cancer patients to develop their strength in living life while fighting cancer. Cure does not come overnight, but over time, and in stages. If cancer is a mountain that needs climbing, cancer patients need the stamina, the skills, and the support to make it. The truth is that we often don’t always know everything that is going on in the body of a cancer patient. Cancer can hide out for some time before it is discovered.  If patients spend all their time and energy in seeking cure, don’t they miss the living along the way?

Like students who are pushed to be over-achievers, cancer patients can feel like failures, feeling anxiety over cancer treatments that may not succeed. Instead of living their lives and finding the joy in the moment, they worry that the cancer will win and they will lose. They put their “all” into the battle against a powerful foe, and in doing so, miss out of what really matters.

The truth is we all will die at some point in our lives. There is never enough time to do all of the things we want to do in life. But if cancer patients spend all their time wrapped up in the idea that they must fight and beat cancer, cancer controls their lives. It permeates every facet of their lives, every waking hour.

Not everyone was made to climb Mt. Everest. And many of us wouldn’t want to be alone at the frigid summit. The average person wants to love and be loved, to laugh and share, to enjoy what is most precious in life. If you are able to do that while facing cancer, you truly are a winner.

What do you give a cancer patient for Christmas that can improve self-esteem and provide a little confidence? For those patients with significant hair loss due to chemotherapy, a hat can be a fun gift.


Got a lover of sports teams? Why not get him or her a team logo cap? The wonderful thing about sports caps is they can be collected by non-cancer patients, too. That makes it even more appealing, doesn’t it? How many sports fans have a cap collection? It’s the kind of thing that can almost be addictive. In this day and age of Internet shopping, you can get apparel for just about any team that exists, whether it’s a local team or even a foreign one. If you throw in a banner or a mug, the cap suddenly isn’t just about cancer and covering up a bald head. It becomes a matter of supporting a beloved team. Kids who love NASCAR might also enjoy a logo jacket and a model car for their favorite driver, or a tee shirt that tells the world he or she is a NASCAR nut.


But what do you do for cancer patients who don’t wear baseball caps? My mother used to visit the gift shop in her cancer treatment center on a regular basis. She loved the “chemo cap” offerings in the store. There were wild, vibrant choices and dignified, classy choices. Sometimes there were even glittery choices, appropriate for wearing out in the evening. From turbans to scarves to caps, there were many attractive choices.


That’s something families need to understand about cancer patients. It’s tough to stand out in a crowd for the wrong reason. People want to be admired. When you walk into a room, you want people to think you look great. You don’t want them to think about the fact that you look too bald, too thin, too pale, or too weak to stand. Cancer patients have a tough time going out during the holiday season and being admired for looking good. That can negatively affect one’s self-esteem.


Hats and caps for cancer patients shouldn’t just be about covering up what’s missing. They should reflect the personality and style of each. If Aunt Mary is a wild woman, her chemo cap should shout this to the world. “Here she comes and she’s on fire, baby!” If Uncle Joe is a quiet, intellectual man who is dignified and distinguished, he’s not going to feel like himself in a baseball cap. Maybe he’s the type for a nice black beret. What if Eveleyn has a gorgeous dress for the family Christmas party, but nothing to wear on her head? A pretty velvet turban or elegant scarf might just complete the look.


You may think it’s not a big deal for cancer patients to just slap on a wig and be done with it, but the truth is there are many cancer patients who really don’t enjoy wearing them.


My mother had a wig. She wore it less than a week before abandoning it for a chemo cap. But after a week of wearing the same two caps day in and day out, she was very frustrated. That’s when I learned how to make her matching chemo caps and pants. She adored her coordinated outfits. Not only was she making a fashion statement by wearing vibrant prints, she was declaring that her personality had not been subdued by cancer. She was still in there in that body, and she was stronger than cancer.


The trouble with wearing the same chemo cap day in and day out is that you start to feel like it’s a cover-up, a hair bandage, if you will. Your wardrobe revolves around the limited number of caps you have. Having a week’s worth of chemo caps means you have choices of what you can wear. It lets you express yourself a little more.


But why not help a cancer patient have some fun? Why not buy a colorful hat or cap and embellish it? Why not add appliques, charms, buttons, and other fun things to decorate it? You can buy hats in department stores and sometimes even craft stores. There are stick-on appliques, iron-on appliques, and even sew-on appliques at craft stores. They usually just cost a couple of dollars. You can also find any number of charms, jewels, and other interesting add-ons. If Uncle Sid is a poker player, why not add some dice to a bucket hat? Or find a patch with a jack of hearts on it? It becomes his “lucky cap”. If little Mary Catherine is a fan of dogs and cats, why not decorate a cap for her with charms that reflect this interest? If Aunt Bella is a fan of bling, why not find her a chemo cap that glitters?


You can go online for these. Some are made specifically for cancer patients, so they won’t irritate delicate skin.There are websites that offer hats and caps for cancer patients. Headcovers.com is one:
http://www.headcovers.com/


There is a big selection to choose from, and that means that you can find something that really fits your loved one’s personality. Whether it’s a turban for your grandmother or a swim cap for little Jess, you can find a gift that will help your loved one feel more like everyone else, and that means he or she will feel better able to socialize with the rest of the world. Isolation is a terrible side effect for cancer patients. It’s lonely to hide away at home, feeling unattractive. Don’t let cancer control how your loved one celebrates the holiday season. Give your loved one the confidence to get out and get living.

For more tips on helping a loved one with cancer, view my guide:
https://sites.google.com/site/practicalcaregivercancer/home

The Practical Caregiver — Cancer: “I PROMISE NOT TO BREATHE ON YOU!”: “Oh, it’s cold and flu season! For most people, it’s an inconvenience to be ill, especially during the holidays. But for cancer patients, it …”

Oh, it’s cold and flu season! For most people, it’s an inconvenience to be ill, especially during the holidays. But for cancer patients, it can be devastating. Cancer treatment centers often inform patients when they are vulnerable, and it’s important for families to understand the risk posed by viruses and other threats to immune systems.

I remember being absolutely terrified when I went to visit an aunt who was battling cancer. I knew it was my allergies that had me congested, but I also needed to remember that she was very vulnerable to any kind of infection. I took precautions and worried through the entire visit. It’s hard when someone you love has cancer and you want to be there.

When my mother was actively being treated for cancer, her medical team would periodically warn us that she was particularly vulnerable. That meant we avoided crowds and cautioned family and friends to forgo visits if they were ill. But it didn’t mean life stopped for my mother. I still took her out and about, but I used some common sense. We avoided crowds. We took more drives, had more picnics, and explored the “unbeaten path”. We even went to movie matinees in quiet, little theaters, where there were only a handful of theatergoers.

There were times, however, when we had to tell people to stay away. My mother was the first to ask any prospective visitor, “Do you have a cold?” Every family invitation included that question. Very often, especially in the winter months, the answer was yes. Many a family gathering was called on account of illness.

At first, some relatives tried to be creative, because they genuinely didn’t understand the enormous risk of being exposed to viruses for a cancer patient. We often heard things like, “I promise I won’t breathe on you!” People offered to come and sit in the corner. They swore they would not hug and kiss my mother. All they really wanted was to spend time with her.

The truth is that cancer patients really need to be protected when their immune systems cannot handle the effort to engage in a battle with another foe other than cancer. And yet, cancer patients need socialization, don’t they?

Why not encourage family and friends to make video visits, through free service, like Skype? Why not encourage text messages, emails, phone calls, and even traditional cards and letters? Your loved one needs to know people care. It’s important to have a support system, and that your loved one is covered by it.

You need to be vigilant when your loved one is vulnerable. It’s a time to be protective.

Why should you make such an effort? Why does it matter? Your goal is to help your loved one have the best chance to survive cancer. Imagine how terrible it would be to put so much effort into the fight, only to lose to a common cold. Those complications are just not worthy of your loved one.

How successful were we at keeping my mother safe from colds, flu, and other threats? She was extremely lucky. She got through her cancer treatment without any problem. It was worth the effort. But there was also a positive side effect for the rest of us. Because we were so vigilant about hand-washing, sanitizing, and making sure to avoid bringing home viruses, we stayed a lot healthier, too. Not a bad way to live.

If you would like more tips on how to help your loved one through cancer, visit my website,
The Practical Caregiver’s Guide — Advice for Families Caring for a Loved One with Cancer:
https://sites.google.com/site/practicalcaregivercancer/home

The Practical Caregiver — Cancer: CANCER AND THE HOLIDAYS: “It’s hard to have cancer at the holidays. If you’re undergoing active treatment, sometimes the side effects are overwhelming. If your cancer…”