Tristan Chidester, one of the most awesome boys I know, was recently diagnosed with a rare bone cancer called Ewing's Sarcoma. In a matter of days his life, and the lives of his sweet family, have changed drastically. They are so overwhelmed with every thing that is Cancer, it has been almost too much for them to bear. I asked Tiffany, Tristan's angel momma, how I could help her. Her answer was a short one because this is all so new to the Chidesters. Tiffany said that she is most comfortable when people just ask how Tristan is doing. If she feels like talking about it, she will. If not, then she hopes that people will understand that she is just emotionally overwhelmed at the moment.
All of the Chidesters' friends and family are desperate to know of ways that we can help them. Trish, a dear friend from our neck of the woods, sent me a link that explains the do's and don'ts that a mother of a child with cancer wrote.
http://www.ped-onc.)org/cfissues/dodont.html
Do's and Don'ts
(Written by a mother of a child with cancer.)
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 focusing 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.
To the Chidester Family, we are here when you need us. You are braver than you realize. I am so proud of all of you for the courage and love you've shown us over and over again.
We love you, Tristan. We are very sorry that you feel so sick. You are one tough guy. We just want you to know that we are right behind you all the way.
Tristan's blog:
http://tristansbonecancer.blogspot.com/
Tristan & Tanner