How to tell your kids when a loved one has been diagnosed with cancer or other serious illness

It is hard enough for us adults to have to deal with bad news that affects ourselves or a closed loved one. But it can be even harder on the adults if they have kids they need to inform that mom or dad, or grandma or grandpa or uncle Joey are seriously ill. In this blog article I will describe the when, why and how to tell kids these things.

Should I tell my child that Uncle Joey has cancer?
Absolutely you should tell. There has been much research on this topic. If you are not honest with your child about this, how can they trust you when they have tougher questions later on? Kids are also very perceptive and smart. It is hard to hide things from them, and they will hear things you think they can’t. It is much better to tell them directly and be open about it. Dont’t make up words or try to soften the blow too much. Use the actual word for cancer, e.g. leukaemia, lymphoma, breast cancer, brain tumor etcetera
When should I tell my child that a family member has a serious condition?
The sooner, the better. As soon as you know, you should tell them. It might explain to them why mom or dad are sad or are away from home more. You may get more snuggles and kisses, which is a great cure when you are feeling sad.
How should I tell my child that grandpa has an aggressive form of lung cancer?
You should tell any kids of any age, but the details of what you tell them, differs per age. Under age 8 yrs, basic terms and a very brief summary are usually enough. Between 8-13 yrs they may want more details or maybe even see pictures. Teens might want to read articles or books about it.
There are some good references out there that can help you (see this link)
These are the things that I would include:
  • that grandpa has cancer and it is located in the lungs
  • a short summary what next steps are (e.g. surgery, chemo, radiation)
  • what this might mean for the kids themselves in the near future and longer term (e.g. being picked up by others, more play dates, understanding why mom and dad are more emotional etc)
  • remember that kids still believe in magical world. make sure they understand they did NOT cause the cancer to occur (e.g. say something like “Doctors tell us nobody understands how the cancer gets there, but we DO know it is NOT caused by someone else”)
  • you can NOT catch cancer; it is NOT contagious like a cold (please give grandpa lots of hugs, he could use them)
  • please reassure your child that they may ask you questions at any time
What do I say if my child asks me if mommy is gonna die from the breast cancer she has been diagnosed with?
This is probably one of the hardest questions to deal with. It is already hard and painful enough for the adult to think about death in relation to the illness, let alone having to deal with answering this question. As much as you may want to reassure and say that “everything will be alright”, you cannot say this as nobody knows the answer to the question. Probably the best way to try to answer it is by not saying “no”, but rather “the doctors are gonna do everything they can to get rid of the cancer; what can help mommy is giving lots of hugs and writing cards/drawing pictures”, etc.
Bottomline:
  1. Be honest when it comes to telling your kids about the diagnosis
  2. Make sure to reiterate cancer is NOT contagious
  3. Ensure that your kids understand they did NOT cause the cancer to occur
  4. Answer questions honestly without being too blunt
  5. Invite the kids that they can ask you questions about this at any time

Not Vaccinating has Side Effects too: the impact families who DON’T vaccinate have on families that CAN’T

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I have been following the situation around the rise in number of cases of vaccine-preventable diseases closely over the past few years, and I feel strongly it is time I summarize my feelings about this now.

In the past few years we have seen small epidemics of whooping cough (2010 and 2014 in California, and 2014 in Alberta), measles (2014 in Alberta) and more recently measles in Disneyland around Christmas time 2014 with ongoing new cases still in January 2015.

I have been practicing as a paediatrician for 10 years. In these 10 years the number of parents that are indicating they wish to postpone/change their child’s vaccination schedule or to not vaccinate at all, has grown. Let me be very clear in saying that it is still a small minority that do this, however the impact their decision has on not only their child but the entire community as a whole, cannot be underestimated.

The recent measles outbreak in North-America which was mostly related to an infected patient at Disneyland in California has reminded the world again how contagious measles are (1 measles patient can infect 15 others) and how people who are advocating against immunizations (the “Antivax movement”) are largely to blame for this.
Is the notion of groups choosing to not vaccinate new?
NO, it is not.
For many years there have been groups who choose not to vaccinate based on their religious belief (I freely summarize it as “it is in God’s hands”). I always maintain that the only thing that is hard to argue with is religion. Nobody can show them proof that God is asking them to vaccinate just as much as they can’t show proof God is saying to not vaccinate.
Those groups have maintained such a stance for many decades and in fact it did not cause too many outbreaks because the other people around them were vaccinated. This is called “herd immunity“. Herd immunity is effective for those unvaccinated ones if the percentage people getting vaccinated is roughly 93-94% or higher.
Unfortunately the Antivax movement has caused the percentage of people to be vaccinated in some provinces in Canada and  states in the US to fall to as low as 85%. This is causing a rise in the number of kids sick with vaccine-preventable diseases.
Why do you make a difference between somebody choosing not to vaccinate based on their religion versus any other reason?
What I do have a hard time accepting, is people that choose not to vaccinate based on information not supported by medical evidence. They can’t show me evidence that backs their claims while I can show multiple evidence-based facts that clearly show the benefits of immunizations. I do not stand alone in this. My claim is factual and is supported by the World Health Organization, Centre for Disease Control, Health Canada, American Academy of Pediatrics, Canadian Pediatric Society, and many more.
How did we get to this vaccine-hesitant frame of mind in some groups?
A. The first one that had (and in fact still has) a major impact on people’s choices to vaccinate, is the study by Andrew Wakefield in 1998 in which he claimed there was an association between MMR vaccine and autism. Please note that I did not post a link here as the study has been retracted because of fraudulent research, false claims and questionable ethics (to put it mildly). At least 20 other studies have looked at that relationship after Mr Wakefield’s study, and none have found any causal relationship between MMR vaccine and autism. I repeat, there is NO evidence between MMR vaccination and autism. If you are interested in reading more on that story, a very detailed and excellent job was done by Brian Deer on this, which you can read more about here.
B. Then there are celebrities who are not medical doctors, but have a strong opinion for which they are receiving a platform. One of the more vocal celebrity advocates would be Jenny McCarthy who claimed that vaccinations caused her son’s autism. Amazingly she was given a large platform in the media even though there is no scientific evidence backing her statement. Jenny McCarthy is an expert on her son, but she is not a medical expert.
C. A journalist who normally tries to balance both sides of the coin on any topic, and who famously had her own colonoscopy aired (which actually increased people getting colonoscopies done by 20% !) got into some heat after tackling the issue of vaccines. Katie Couric did a segment on HPV vaccines and had such a skewed anti-vaccine portrayal of the matter, that she needed to issue an apology after.
D. Then there are those that believe offering a postponed (no medical evidence for that) or an alternative vaccine schedule is the better way to go. If you are considering such an alternative vaccine schedule I would suggest you read this excellent rebuttal to Dr Sears’ alternative vaccine schedule, written by 2 physicians and published in the Journal of Pediatrics in 2009.
So what have the combination of all these “incidents” led to?
A decline in vaccination rate, a decline in the percentage of vaccinated people needed to get herd immunity. And what has that led to? A resurgence of diseases that are vaccine-preventable and are now reminding us of how contagious they are.
Two stories that show the impact of not vaccinating:
Dad (and fellow pediatrician) Dr. Tim Jacks wrote an excellent piece on how a recent exposure to measles has affected his family (they have an immunosuppressed daughter undergoing chemo treatment for leukemia and a 10-mth old baby boy who has not received his MMR vaccine yet). You can read his article here about the impact parents who DON’T vaccinate their children have on parents who CAN’T vaccinate theirs.
The world-famous children’s books author Roald Dahl described in a letter in 1988 how he felt about vaccine-preventable diseases after he lost his 7-yr old daughter to measles in 1962.
Sometimes cartoons can be very impactful. New Yorker cartoonist Emily Flake tried to depict it as follows: daily-cartoon-150202-measles-1200
So where does that leave me, a community pediatrician seeing primary care patients (this means healthy babies too) as well as consultations (some of which are immunosuppressed children, premature babies and babies with complex congenital heart disorders)?
What should I do when a family indicates they do not wish to vaccinate?
And how do I protect my patients (both the vaccinated and the unvaccinated)?
This is not an easy question to answer, but I will attempt to do so.
First and foremost I strongly believe all kids should be vaccinated according to their regional vaccination schedule. This is supported by medical evidence over decades of research (as per WHO, CDC, Health Canada etc). It is also important to note there is still ongoing research into vaccines we give and any potential adverse events they might have.
I will always ask a new family if their child is uptodate on their immunizations. If they answer that they do not vaccinate I open the dialogue as to why they don’t. I will then give them the data on benefits of vaccinating, what the medical evidence is and what the most common side effects are. I will give them this handout by the Canadian Pediatric Society (CPS) and I will encourage them to read it at their leisure, and that they can come back with questions about this any time.
There are some colleagues who will discharge families if they don’t vaccinate and/or not accept families that don’t vaccinate. Whereas I understand where those physicians are coming from, I feel I have both a legal and moral obligation to the parents and their children to continue to serve them. In 2007, the CPS published an excellent article on the legal aspects of this.
Personally, I feel I need to protect ALL my patients, those who are vaccinated, those who are not vaccinated yet, and those whose parents chose not to vaccinate them (after all, it’s not the kid’s fault).
Some have suggested to have a separate waiting area for unvaccinated kids. Not only is that physically impossible in most existing community office spaces, it also increases the chance that one unvaccinated child with a vaccine-preventable disease will infect the other unvaccinated children who are in same waiting room. For that same reason I would also not schedule them at an “after-hours time slot”.
So what have I done and what will I continue to do? I will continue to keep the lines of communications open with my patients and their parents. The CPS published a guide for health providers how to work with vaccine-hesitant parents. I will do my best to educate them on vaccines and encourage them to do it. I will try as best as I can to protect ALL my patients. I will ask those parents of unvaccinated children to remind my staff on the phone when calling in with fevers and rashes that their child is not vaccinated. In those instances, I will put the kids into an exam room immediately and if clinically suspected or confirmed , not use that room for the rest of the day and disinfect it.
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Here are 6 take-home messages I would like to leave you with:
1. Vaccinating your child is important and proven to be of benefit and is safe (supported by medical evidence). Saying your child does not need vaccines because he is always healthy, is like saying you will not wear a seatbelt because you will not be in a car accident.
2. Vaccinating your child is an important civic duty and contributes to a healthy society. It is important to remember that we are not only protecting the patients we are vaccinating, but also those who cannot be vaccinated.
3. As a physician, it is important to keep the lines of communication open with your patients. Sometimes it takes multiple visits, questions raised and answered for vaccine-hesitant parents to come to the realization that indeed vaccines work and are safe.
4. Everybody, and I mean EVERYBODY (vaccinated and unvaccinated) should stay home if they suspect they have a communicable disease and call a healthcare provider for further advice. This helps to keep these cases from evolving into an epidemic.
5. Just because celebrities might be people you see/hear a lot of in the media, does not make them medical experts overnight. 
6. It is my hope media will cover the horrible effects the Antivaxers have caused just as much (or more) as they have covered the false claims.

The gifts we give our children

Remember when you were a kid and your parents would tell you stories about what life was like when they were children? This blog post is about bringing back those times.

tvI remember my parents telling me how one of their friends’ parents had one of the 1st television sets in their village and everyone would go over there to watch the news. I remember my parents writing letters, real letters, to their parents who lived overseas and it would take 3 weeks for them to get a reply back. Calling them would be too expensive; at the time it would cost about 5 dollars per minute so that was only reserved for special occasions.

 

ipodWhat is life like for our kids in 2014? They have access to iPads, iPods, computers, Video-on-demand, FaceTime, Skype etcetera. Sure, it is nice for the my parents, now as grandparents, to see our kids via webcam or Facetime. And yes, it is nice that the kids can be entertained with apps on the phone or iPod while waiting for a delayed flight. But what did we used to do when we didn’t have all of that?

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We would talk as a family, we would play games (think of a country that starts with a B, take last letter of that country and that will be the first letter of an animal, etc), we would look at license plates and note what country (in Europe) or province (in Canada) they were from. We would play cassette tapes in the car or listen to the radio. We can still do these things with our children, well maybe not listen to cassette tapes in cars. And I know families that make an effort to do so.

In my opinion it is important to keep a kid’s mind occupied and challenged by for example stimulating kids’ imaginations by playing pretend, being physical by playing outside, biking, skating and walking to name a few. Playing in the sprinklers outside in the backyard on hot days is so much fun, even for adults. Board games are a great way to spend quality time as a family while also developing strategic minds. It is important for kids to put away their electronics, but also for the parents to put away their smartphones during that time !

When it comes to possessions, a lot of kids these days have all they could wish for. Between Holiday Season, birthdays, gifts from grandparents and visiting friends it seems they constantly receive presents. Do they really need more? What about teaching our kids about those kids and families that are less fortunate? I have heard of some great ideas of gifts for birthday parties or gifts parents can give their own children. Some kids’ parties suggest to bring 4 dollars for the birthday kid: 2 dollars for the child to buy a gift for themselves, and 2 dollars for a charity of their choosing. Other families ask for donations to a good cause in lieu of a birthday gift.

The most original gift idea I have heard a parent give their child, is by one of my daughter’s friends’ parents. They give their children 10-15 coupons for their birthday. Each coupon may only be used once, and when given to the parent has to be honoured without question. Examples of these coupons are “stay up 15 minutes later”, “go for dessert with parents WITHOUT the other siblings”, “go to movie with mom” just to name a few. And all their kids are excited and look forward to their birthday coupons.

Writing this blog article makes me realize I sound like my parents/grandparents did when I was a child, talking about how it used to be. But looking back now, I think that was a great time. With all the amazing and wonderful things all these new technologies have brought, we have to remember not to let the “old ways” die. A game of “Sorry” or “Monopoly” are still a lot of fun! In the end, apart from the physical gifts the children of this generation seem to receive a lot of, it is our duty as parents to give them the greatest gift of all: becoming a decent human being. Teaching them the gift of respect, of appreciation, of family values and the gift of giving.

 

Dr Raffi’s suggestions for gifts we can give our children:

1. More real games, less computer/handheld games

2. Have kids write real letters to their classmates, grandparents, siblings

3. Kids birthday ideas: in lieu of gifts, donate to charity

4. Try “Birthday Coupons” as a present for your child

Putting family first

I know it has been quite some time since I last wrote a blog post article. I have been quite busy at work and at home. I will do my best to try to write some more again. Today’s blog post is not about diseases or prevention thereof, but rather about priorities in life. priorities

With all of us having busy lives, we sometimes tend to forget to cherish the little things in life. This blog post is just to remind us of some of the important things in life.

 

Moral story:

 

“SON: “Daddy, may I ask you a question?”

DAD: “Yeah sure, what is it?”

SON: “Daddy, how much do you make an hour?”

DAD: “That’s none of your business. Why do you ask such a thing?”

SON: “I just want to know. Please tell me, how much do you make an hour?”

DAD: “If you must know, I make $100 an hour.”

SON: “Oh! (With his head down).

SON: “Daddy, may I please borrow $50?”

The father was furious.

DAD: “If the only reason you asked that, is so you can borrow some money to buy a silly toy or some other nonsense, then you march yourself straight to your room and go to bed. Think about why you are being so selfish. I work hard everyday for such this childish behavior.”

The little boy quietly went to his room and shut the door.

The man sat down and started to get even angrier about the little boy’s questions. How dare he ask such questions only to get some money?

After about an hour or so, the man had calmed down, and started to think:

Maybe there was something he really needed to buy with that $ 50 and he really didn’t ask for money very often. The man went to the door of the little boy’s room and opened the door.

DAD: “Are you asleep, son?”

SON: “No daddy, I’m awake”.

DAD: “I’ve been thinking, maybe I was too hard on you earlier. It’s been a long day and I took out my aggravation on you. Here’s the $50 you asked for.”

The little boy sat straight up, smiling.

SON: “Oh, thank you daddy!”

Then, reaching under his pillow he pulled out some crumpled up bills. The man saw that the boy already had money, started to get angry again. The little boy slowly counted out his money, and then looked up at his father.

DAD: “Why do you want more money if you already have some?”

SON: “Because I didn’t have enough, but now I do. Daddy, I have $100 now. Can I buy an hour of your time? Please come home early tomorrow. I would like to have dinner with you.”

The father was crushed.

He put his arms around his little son, and he begged for his forgiveness.

It’s just a short reminder to all of you working so hard in life. We should not let time slip through our fingers without having spent some time with those who really matter to us, those close to our hearts. Do remember to share that $100 worth of your time with someone you love. If we die tomorrow, the company that we are working for could easily replace us in a matter of days. But the family and friends we leave behind will feel the loss for the rest of their lives. And come to think of it, we pour ourselves more into work than to our family.

- Author Anonymous

 

Enjoy your kids, spouse, parents etc. Make the time to actually be there mentally when you are there physically. Try to keep work at work. If you truly need to work at home, make it a point to do so after the kids are asleep. But ideally try to plan your day such that you leave work at work. Your kids and spouse will love the attention, and you will feel even more enjoyment from them! family

18 Things Parents Want Providers to Remember

As a Pediatrician I often see kids (and parents of kids) who have some kind of physical or mental disability. It could be anything varying from cerebral palsy to seizures to trisomy-21 to a child with Autism Spectrum Disorder to name a few. I see them for a short time in my exam room, and I try to imagine how difficult it sometimes (or always?) must be for the families. But nobody could summarize it better nor put it in a list better than Amy Kelly, mom of Annie who was diagnosed with Autism Spectrum Disorder when she was 2 years old. What Amy has written in 18 points is so clear and conveys beautifully what a parent of a child with a disability experiences every day. Would it not be great to include a copy of this 18-item list for every new medical graduate along with their diploma?

I am posting her “18 Things Parents Want Providers to Remember”. It is an eye-opener for any healthcare provider who sees children with any form of disability as well as any family member or friend of these kids.Family_Portrait_

 

18 Things Parents Want Providers to Remember

*Written by Amy Kelly, mother to Danny, Annie and Ryan Kelly, Devereux PA Director of Family Services, LEND Fellow – Children’s Hospital of Philadelphia & Autism Speaks Autism Treatment Network National Family Advisory Co-Chair”

1. No parent wants their child to have a disability.

2. We are doing the best we can. This is really hard painful work. It is hard to see our children suffering and not able to understand the world like most people do.

3. We are experts on our children. 

4. We know them very well. Listen to us.

5. Don’t promise us things you can’t provide, or promise us that others will provide them.

6. It is hard to tell our story to the outside world. Be gentle with us.

7. We are grieving for lost hopes, dreams and ideals that haven’t or won’t be reached.

8. We are tired and sleep deprived. We are exhausted.

9. We are isolated. There aren’t many people who understand, and if they do, they are tired too.

10. Don’t ask us to tell our story in front of our children.

11. We carry a huge burden as the reporter of what is happening with our child.

12. If you say you will call us, call us. If we leave a message, call us back.

13. We will often compromise more than we should.

14. We are competent from experience.

15. Don’t finish our thoughts and sentences. Don’t assume you know what we feel. Please take the time to ask us and let us talk.

16. Don’t forget that this makes us incredibly sad. We are grieving.

17. Experiences like raising a child with a disability means we find out who our real friends and supports are. It means we often have to grieve the loss of someone who we thought was there to support us.

18. Boundaries are critical to observe.