Making A Difficult Conversation Less Scary – There’s An App For That!

This post was sponsored by Celgene Corporation.  Personal opinions and thoughts are my own.

Breast cancer is an overwhelming diagnosis to face. Now, imagine having to go through it all with a child (or children) under the age of 8-years-old. It can be a lot for their little minds to process and can leave them scared. What do you say? Will they understand? Do you tell them at all? Well now, there is a new interactive app available that is designed to help parents have these conversations with their kid(s), and can help make it less scary for them.

The Magic Tree is a brand new, free app designed by Celgene specifically to help parents with children between the ages of 5 – 8-years-old to have age-appropriate conversations about mom having breast cancer. You can find more information on how to download the app here: http://magictreebreastcancer.com. What’s nice about this particular app is that there is a helpful discussion guide for parents that goes over each topic and provides guidelines for conversation. Included in the guide are possible behavioral signs that parents might recognize in their child’s reaction to their parent’s illness, as well as some helpful suggestions on what best to do.

Aesthetically, the app is a charming cross between a video game and a chapter book, which has a friendly and fun feeling, like many interactive learning games. When you open the app, The Magic Tree sits in the middle of the screen. There are noises from nature and cars driving by on the road behind the tree. Sitting against the rolling green hills is a house, playground, library and hospital. Each contain the four videos that are the “cancer” part of the app, each dealing with a different aspect of mom or dad’s breast cancer. Each also has a game that can be played after the video or at a later time.

The Magic Tree covers four main topics within the game:

Can You Catch Cancer?

The playground icon helps children understand that cancer isn’t like a cold or the flu. They can’t get it from someone else or being around someone that has cancer. Here is it also explained that they are not alone, that other people are also diagnosed with cancer, too. The video ends with the suggestion to head over to the house icon.

Is It My Fault?

The house icon tackles this question that many children, and sadly adults, often ask. The 1:45 minute video does well with explaining that cancer isn’t anyone’s fault and no one knows why it happens. Then the video encourages the child to help around the house (but not do too much), and that even though mom may not be able to spend as much time doing things as before their love hasn’t changed one bit. The video ends with the suggestion of heading to the library next to learn more about the cancer inside mom or dad’s body.

What Is Cancer?

The library is where cancer is explained in a 2:09 minute video with age appropriate graphics. The video helps children understand how the cancer started in the cells and how cancer that grows forms a tumor. The way to stop the cancer from growing is to visit the doctor and hospital often. The video ends with that segue, suggesting the hospital is the place to go to learn exactly what the doctors may do to treat the cancer.

How Do You Treat Breast Cancer?

The hospital is one of the longer videos, where such topics as biopsies, operations, radiation, chemo (and types of chemo) are explained. The video does a good job at showing what some of these procedures look like in a non-scary way. Side effects are also explained, like nausea from chemo, hair loss and exhaustion.

At the end of each completed chapter a prize is earned that goes onto the Magic Tree.

A game is included with each chapter because who doesn’t like a game? Two games are for two players and two are single player games. The game in the chapter, Can I Catch Cancer?, is geared around avoiding hugging the people that look “sick.” The other games are “just for fun” games. In all of the games there are no winners or losers, but at the end of each first play there is a prize earned that goes onto the Magic Tree. Children don’t need to worry, when the Magic Tree is full of prizes, just go into the Menu and hit the reset button and they can start all over to earn those prizes!

I really like the glossary, with all of the words that may be difficult for children to understand. What I like most about it is that it’s also in audio format so the child can go through the glossary on their own and have each word and definition played back to them.

The team at Celgene really put thought and care into considering the needs of the parents, too. There is also a discussion guide for parents and a “selected resources” section. Inside that tab is a list of organizations that have information for how to talk to children and information on breast cancer.
What I really appreciated most about this app was that in each chapter there was a consistent message of having open dialogue between parents and children. Children are encouraged to talk to their parents about their feelings and how they feel about mom or dad having cancer. It’s important that children feel comfortable asking questions and being able to open up about how they are feeling when a parent is sick. The encouragement from this app is just as important as the explanations it gives for cancer.

The app is available for free download now on iTunes and for Android via Google Play – you can find links to download it here: http://magictreebreastcancer.com. Download it, give it a whirl and if you know someone with breast cancer that has children aged 5 -8-years-old, tell them about this app!

The Best Surprise

It’s not often I log onto Facebook and get a wonderful surprise. Many times its filled with not so good news about friends reporting on test results or finding out another has died too soon. But today isn’t one of those days.

Today I found out I was put into the company of some pretty amazing bloggers and named along with them one of the Best Metastatic Breast Cancer Bloggers of 2015 by Healthline. EEEK!!  I’ll be honest, I’m freaking out a little bit.

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http://www.healthline.com/health-slideshow/metastatic-breast-cancer-blogs#9

When I started my blog after my diagnosis, my purpose was to document my illness – good, bad and ugly and to have something my son could go back and read for when he was ready. I also hoped that if someone learned something from my experiences or was able to feel like they had someone in their corner it would be worth it. I also believe in being as transparent as I can be so, when I can, it all gets put out there.

I want to thank whoever is responsible for adding me to this list. I’m absolutely and truly honored. I’m thankful for those that read my blog and those that comment. This honor makes every last word I’ve ever written worth it and I’ll continue to keep writing for as long as I can.

Xoxoxo ~ Susan

15 Days In And I Already Want A Do-Over

I’m not going to lie. The end of the year was rough. There was what felt like, an unprecedented number of deaths in my circles. So, when January came a knockin’, well I was all too happy to close the books on 2015.

But it didn’t stop. The deaths and bad news just keeps coming and it’s becoming too much. I’m afraid to open my Facebook or Twitter because I know that there will be more bad news.

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I’ve been feeling very much like I’m in a similar situation as the movie The Hunger Games. Any one of our names could get called for the last fight of our life. It’s just a matter of when – not if. Every time I hear another beautiful, strong advocate had her name called I wish the same wish – that I could give them more time. More time with their children. More time to give hugs and kisses. More time to read stories. More time to say “I love you”.

Then I begin to wonder when I’ll hear my name called out in the crowd. When will my time come when things go sideways and I have to be stronger than I’ve ever been and make decisions I’ve been hoping I’d never have to make. It scares me because I’ve watched the health of my sisters go from NED (No Evidence of Disease) to being out of treatment options and taking their last breath in a matter of months.

When will people notice? When will people begin to care? When will there be outrage and anger for all the children that will grow up without their Mothers?

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Every day I yell and rant hoping that someone listens. Hoping that someone helps us. It can be very discouraging when the bad news keeps coming but I won’t stop. I can’t stop. I will keep yelling, ranting and making noise until someone hears us, until someone listens

A Letter to My Son

Dear Son,

You just turned 16.

It seems like I blinked and you went from a curious toddler to a handsome, bright young man with such a bright future within your grasp. I’m so excited for you and can’t wait to see what path you choose for yourself. I’m confident you’ll choose wisely.

There is so much I want to tell you but I know how much you hate ‘mushy’ letters. This will not be one of those. This includes important things to remember for when you choose a partner to share your life with.

You’re probably shaking your head at me because of how things didn’t work out with me and your Father. I may not seem like the best person to be doling out advice but I have a very unique perspective that I didn’t have before.

Obviously, you’ll want someone who loves and respects you. You’ll want someone that you can laugh with and share memories with. Everyone does. You’ll also want someone who drives you a little bit crazy with the particular way they do things. It’s OK. It will remind you of why you fell in love in the first place.

You’ll want someone who shares some of your interests. It’s OK if there are some differences. If you both liked all the same things life would be boring.

Now pay attention because this is important. This is something few are told and even less consider when choosing a partner…ready?

Be very, very certain that if you or your partner ever have a significant health issue that both of you will be committed to each other. That you’ll support each other emotionally because that’s so important. Neither of you can ‘check out’ emotionally because things get scary. Be sure that you’ll both dig your heels in and support one another. Don’t be so selfish that your feelings become more important than her’s regardless of who is ill.

If one of you has a medical issue, there may be days of moodiness or frustration or anger. You’ll both have to be strong enough to not take it personally. Believe me…it will be hard; maybe even harder than the illness itself.  But if you can’t do this, your relationship won’t survive.

You both may have to do difficult things for the other person, like administer shots or learn how to give nutrition thru a feeding tube.

You’ll have to understand that there may be days where one of you may be in pain or nauseated to the point where leaving the house just isn’t an option. Don’t harbor resentment. This isn’t being done “on purpose”.

You or your partner may talk about difficult topics like death or end of life decisions. You both may not want to talk about it but the conversations need to happen. Neither of you can shut down on the other. Have the hard conversations when the opportunities present themselves because if you don’t you’ll wish you had when it’s too late.

I don’t mean to be depressing but these are things I never considered. I always thought it never could happen to me. But as you, know it did. Learn from my life.  Be thankful you have this to learn from.

I pray every night that you will be spared from having any significant illness and I pray whoever you share your life with will always be healthy. That neither of you will have to be a caretaker to the other. I want only the best for you in all things.

So, for now, tuck this letter away in a safe place and when the time comes and you’re considering marriage, pull this back out and read it again. Really. Read it.

Love you to the Moon and back,
Mom
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