Resources and information for parents of children with cancer . . . by parents of children with cancer.

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Do's and Don't's

Parents of cancer kids often find it hard to talk frankly to family and friends. They find that some friends can't handle their situation and never call, they find that someone they hardly knew before becomes their best friend and helper. Family and friends in turn sometimes just don't know the right thing to say to or do for a cancer family. The following is a collection of posts on this topic.

Some ideas of things to do for cancer families

Clean their house for when they come home from the hospital.

Get them a gift certificate for DVD rentals.

Buy CDs for the child undergoing chemotherapy. Perhaps even get them a Walkman or Discman if they do not have one. Or, an MP3 player.

Puzzle books, reading books, and activity books, especially for the siblings. Many parents could use help with the other children.

A night or day of babysitting.

Take the parent a bag filled with things she thought they might need, such as note cards, nail care products, laundry detergent, magazines, hand lotion, an array of items. Just think to yourself, "If I couldn't be home for over a week, what would I need?" Then throw it in the bag.

If it's possible to get there, come and sit with the parent in the hospital on those long days when he or she is scared and bored and exhausted all at the same time. Bring a favorite food or a new magazine, and bring lots of news and stories to make them feel less left out of normal life. Hang out with the child so Mom or Dad can get a shower and something to eat.

If their treatment center is fairly far from home, phone calls (and gifts of those pre-paid phone cards so they can call out) can make them feel like they're still in touch with family and friends.

One really nice thing that a couple of people did for us was to send us prepaid phone cards. I had never used one before but it was truly a lifeline. Tracy's treatment was only 15-20 miles away but, it was a long distance to call home. Each time she went in for chemo we were there for a week. It was a hassle and expensive to go through the hospital operator to just to make a call home or have to leave the room to use a pay phone. My family is located all over the U.S. I truly believe my trusty phone cards kept me sane!

If the sick child is a teen, provide transportation so that friends can come to the hospital. Staying in touch with friends and having their support is REALLY important.

Enlist people to send cards and silly, fun things to the child and any brothers or sisters. A little fun and excitement go a long way toward alleviating pain and fear.

Find out what the child likes (some kids collect stickers, beanie baby toys, cool hats, pins, etc.) and help get a collection started if he or she doesn't have one already. It will provide something fun to focus on and then people will know what to send or bring when they don't know what else to do.

Commit yourself to be the friend of one of the siblings, someone the child can call on when he or she needs to talk or is feeling left out. If the child has brothers or sisters, find someone whose special job it is to give each of them attention, time, treats. They're scared and they're left out and they need people to take them places and listen to them and make them feel important. Be that person!

Find out if there are any special needs the family has, and try to coordinate a solution to their problem. Is there a child who is often home alone after school because one parent is at work and the other is at the hospital? Do they need help with transportation or a supply of meals on certain days when normal life is impossible because of clinic visits, diagnostic tests, etc.? Once you've identified an area of concern, work WITH the family to help them solve the problem. In particular, don't ever decide on your own to sponsor a large project like a fund-raiser or major house repair, etc., without talking with the family first. As well-meaning as many of these efforts can be, they may not always be serving the family's most urgent needs. Any supportive undertaking needs to be done in a way that respects the family's wishes and honors their privacy.

Be the "fun" friend who shows up at the hospital room or at home with bubbles, silly string, joke books, Marx Brothers videos, rub-on tattoos, whatever. Life is scary enough right now without having all the grown-ups walk in with long faces! It'll help Mom and Dad, too. (Author's note: One of our dearest friends showed up at the hospital with a roll of paper, painters' tape --the kind that doesn't leave sticky marks-- and a box or markers. She covered the walls with paper and each person who visited my son drew pictures for him, wrote jokes, left funny notes and signed their names. Of course, he wanted to draw, too! Distraction is the name of the game! )

When our son was first admitted into the hospital and we found out that he had cancer we were flooded with calls from well-wishing and concerned family and friends wanting updates on his condition, etc. We spent so much time on the hospital phone that we were not with our son as much as we would have liked. Our talking also kept him awake at times. Moreover, were losing a lot of sleep because of the phone ringing. So a friend came up with an idea that worked out great for everyone: she set up (temporarily) a voice mail box with our local phone company on our home phone (you could also use an answering machine). We designated someone to be the point person to update the message that got played when the phone rang and we were not home. As our son progressed through surgery, recovery, initial treatment, etc. the message got updated with the latest news. So caring people who called could learn what was going on without disturbing us. Our "point person" also listened to all the recorded well-wishes, wrote them on paper, and emptied the voice mailbox for us (otherwise it would fill to capacity). Not everyone would go for this approach, but it was a tremendous help for us.

Messages from cancer families

(What they want to say to you but probably don't.)

Don't take "no, we don't need any help" from a family as their final response...ask again. Don't say, "Well, call if you need something" - we probably won't call. We are not used to needing help from others and do not know (1) that we need it and (2) how to say yes. If you really mean it when you say you want to help, you must come up with your own ideas... such as "I'd like to mow your grass" or "I will babysit....(the younger sibling if any) this week-end" or "I will be snow-blowing your drive-way for the season." or "Let me stay with you son overnight at the hospital so you can get some rest." And if you make such an offer and we refuse, we may be refusing because we really don't need help like that at the moment, but please call back in a week or two and try again!

I think what most folks forget is that this is SUCH a LONG term family problem. Meals and help the first few weeks are nice....but we're dealing with stuff that will last 1 to several years. It's easy to fade out of the picture. Emotional support is CRUCIAL for the family. Just make a point to call, once a week or every two weeks. Parents of CK's lose some of their former friends and get distanced from their relatives. You are very right about letting people help, for their sake and yours. It is a humbling experience, but it works out for the best for everyone.

What to say to the parents?

Please don't say: "I don't know how you handle it, I just couldn't do it!" What are we supposed to do, shrivel up and die because our child has cancer? We aren't "handling" it because we are superior people, we simply have no choice. We have to protect our children. In fact maybe we are not "handling" it at all, it may be that we are a total emotional mess, but we have to save our kids so in the haze of hospital rooms and surgeries and toxic drugs put in our children's veins we focus on the important facts that we have to know - like focussing on the taillights of the car in front of you as you drive through the fog. And we may have a smile on our face as we talk to you, but that doesn't mean we don't cry in the nights, it only means that we are trying to make you comfortable so that you will keep talking to us.

People just don't know what to say...so they don't call. It's a horrible feeling to feel like you have the plague or something. We need friends that just call for no reason! Also we do have a life sort of besides JUST the child with cancer. Ask us about our other children, ask us how WE are doing. Ask us about our hobbies or work. We DO like to talk about other things besides, "How is [the cancer kid] doing?" It gets old after the 30th time at church or something!

I felt much more comfortable if people just dealt with it head on and acknowledged that something horrible had happened. I think it's the tongue-tied, awkward silence we hate, isn't it?

My friend's son was treated last year for medulloblastoma, and manifested many symptoms. He was not walking well, spoke very slowly, and was bald, etc. One rare time that the family all went out to a restaurant to eat, and he attracted his share of attention from people sitting around them, including the waitress. But in order to engage him, she remarked with respectful interest, "You look like you've had quite an adventure!"

The whole family was very appreciative of her remark. It was appropriate to acknowledge the child's condition, but it also put a positive spin on the whole situation.

Couldn't leave this one alone. When I was a young adult I was in an accident and had months of recovery. I looked and felt a fright. Although everyone is different, I felt much more comfortable if people just dealt with it head on and acknowledged that something horrible had happened. Unfortunately, the only people that did that were kids. Not one adult ever asked me what happened. They just averted their eyes and tried to get away. It was even worse when the casts came off and I was in a wheelchair. Then, I was treated like a pariah. People were so extraordinarily uncomfortable. I felt so different, so excluded.

So, I guess I'm saying, for me, saying something like "Boy, looks like you really got hurt," would have addressed the obvious and let us move on to other things.

I just loved the "adventure" comment [above], not only for the positive spin, but because it allowed the child to explain the illness or not. Either of the following would have be a graceful comeback, "Yeah, I have cancer and it stinks" or "Yeah, it's been tough." Those types of acknowledgements without pressure to explain are priceless.

Links to similar lists

On the Foundation for Children with Cancer site:

28 things you can do when cancer strikes

On Anne's rhabdomyosarcoma site:

webpages.charter.net/drshrink/helptips.htm

General Disclaimer

These pages are intended for informational purposes only and are not intended to render medical advice. The information provided on Ped Onc Resource Center should not be used for diagnosing or treating a health problem or a disease. It is not a substitute for professional care. If you suspect your child has a health problem, you should consult your health care provider.

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