10 Things You Should Know About Childhood Cancer

Today is International Childhood Cancer Day…..

Everyday is childhood cancer day to us.  It never goes away.  I don’t get to wake up tomorrow and not know.

I see these “awareness days/months” and often feel…..what does it really matter?!?!  What BIG change are we going to see because of the publicity….for ONE day.  Childhood cancer should be every day.

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I decided to write this particular post last week, after being confronted by a family member.  At first I was upset about words that were directed at me.  And then, I was confused.  Upon further reflection I realized that maybe others are enduring the same negativity and nasty comments…..all while trying to keep their sanity and child alive.  So here are my thoughts….. take them as you may. Share them if you wish. And if you don’t like them, then don’t read them.  Easy enough.

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1. Childhood cancer is FOREVER.  Even when your child is done with treatment. You still always have the thoughts of cancer, in the back of your mind.  You see, Zayla went six years relatively healthy after her transplant.  Six years.  Wondering if that cold/fever is the leukemia returning.  Waking up from the occasional nightmare that it had returned.  Constantly thinking and wondering, when is that other shoe going to drop???  Because once you have walked down the childhood cancer path, your life is FOREVER changed.  You look at other “normal” families differently.  How can you not?  They have what you long for. Normalcy.

The day that we received the news that our daughter had cancer, was a day that my entire being changed. Forever.

2. Unsolicited advice about HOW I am coping, caring for, and raising my cancer child and her siblings is NOT wanted or needed. Unless of course you are an expert on childhood cancer and the living hell it impacts on the family and child…..kindly, shut your mouth!

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When I said that I am forever changed…..one aspect that is actually good that I have changed is my ability and willingness to deal with other people’s drama. If you feel that I have pushed you away, there is a reason. And just maybe you should look within for the answer. If the only thing that you can contribute to others is to talk about people or make others feel poorly about themselves…..then I have silently said to you….”Bye, Felicia”. Your issues are not my problem…..I already have enough warfare to navigate through. Not my circus. Not my monkeys.

3. As disgusting as this may sound, it was much easier to manage Zayla and her cancer when she was little. Now that she is a teenager it has become 1000 times more difficult. She notices the changes in others. She recognizes that she is different. And she knows that people avoid her. She also has seen many children pass away from cancer. As hard as it is for you to constantly be reminded of the cancer…..imagine being 14 years old and living with it!! You can sympathize and have empathy, but you never truly understand this unless you have walked this same path. Period.

4. Not all things happen for a reason. If you feel the need to tell a cancer parent that, please stop and reconsider. Not all things help to teach us some great epiphany of thoughts……sometimes, life just sucks and is cruel. There is no explanation that is going to make my heart not ache as to the why my daughter is battling a secondary cancer. None.

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This also goes for the catchy phrases of “God never gives you more than you can handle” or “you are so strong….good thing it happened to your family, others would crush”  NO!!! And yes, those words have  ALL been spoken to me or someone I love battling the same battles. These words are NOT helpful. They hurt. There are already horrendous ideas that travel through my mind of why this has happened. I don’t need further confirmation from those who feel they just need to say something or try to make us feel good. This is NOT the way to do it….some things you just can’t fix.  And that is ok.

5. The comments from others…..that maybe we shouldn’t be doing so many cancer benefits or relays ( which was like a slap in the face because everyone knows how much I despise relay) IS NOT caring or helpful. Seriously??!? You have the nerve to voice to a family that is doing everything in their power to 1. Save their daughters life, and 2. Bring HOPE to a very dismal situation. Kindly, keep your mouth shut!

Each family that endures childhood cancer reacts differently. Some can only do enough to get their child through this. Others, do everything in their power to raise awareness and money for research. Just because two different families react differently does not mean that either is “wrong” in their way of coping. Stop judging those who are in the biggest battles of their lives…..for their innocent child!

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6.  On to the good.  As much as I need to write, and share my families experiences….this is OUR journey.  Writing is very cathartic for me.  It’s like letting my heart bleed onto paper….and all in the hopes of making an impact on someone else.  In a good way.  A sense of peace often washes over me after I have journaled….as I read the words that my throat can’t choke out.  Peace.  Inner peace.

If you don’t like what I have to say…..kindly, keep it to yourself.  If I feel like spending a majority of my free time raising money and awareness for childhood cancer….support it.  Don’t insist that we are making our lives “too depressing”, always centering on childhood cancer.  We believe the opposite….we are being hopeful.  Without hope, there is nothing.  Nothing.

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7. More good.  All of the amazing people who can see past my moments of negativity and complaining….and pleading with the universe for what we all know I long for…..a  cure.

You!  You know who you are.  You are the one’s who quietly cry with us.  Don’t feel the need to say anything.  Just being “there”.  I am forever grateful for that.

You!  the one’s who go above and beyond to support our mission…..  I can’t list all of the amazing people who have impacted us…..the list is truly too long (and wonderful).  But, YOU know who you are!!  To the ones who support every crazy awareness and fundraising idea of mine…..to the one’s who hold their own fundraisers and share the proceeds with OUR passion.  I cannot thank you enough.  Ever.  Just please know that those moments of support are so helpful…..especially in the low moments.

Until the day that I die, I will forever be fundraising, and pushing awareness for children with cancer.  That is my life’s mission.  Forever.

8.  To those who may ask….what can I do?!?!  Support organizations that support kids with cancer.  Start your own fundraiser.  Ask your company you work for, or your local gas station or grocery store….get active!!  Ask for their support in raising money.  There are so many ideas that can be utilized….there just needs to be the action from others.  St Baldrick’s is coming up…..maybe get the local gas station to sell shamrock’s for a dollar…..all proceeds to go to St Baldrick’s.

The biggest compliment to the fighting children and their families…..those who are active in raising awareness and donations.  It shows you care…..that our mission is yours.  That children’s LIVES MATTER….

Here are other GREAT organizations that support childhood cancer research:

http://www.alexslemonade.org

http://www.cookiesforkidscancer.org

http://www.stbaldricks.org

http://www.noahslightfoundation.org

9.  To those who see us cancer parents out in public……please, please, please treat us normally.  Don’t stare.  Don’t whisper to the person next to you.  Childhood cancer is NOT a contagious disease.  My families pain and sorrow will NOT transfer to you upon contact.  If you see a parent of a cancer child in public, engage them.  Engage them in “normal”, everyday conversation.  Tell them how Johnny overflowed the toilet last night with another toy…..or Jane broke her arm falling off her bike.  Yes, we are the BIG white elephant in the room that NO ONE wants to become.  But, more times than not, we crave normal.

Or a hug.  Or just a kind, “I’m thinking of you”….. There have been many public events that I have felt very lonely.  Have noticed the stares.   Felt the whispers.  I may seem unapproachable.  Lost in thought.   But in reality, I am just trying to get through the day.  Without losing my sanity.  Keeping my emotions in check.  Not only for myself, but for my child and family.

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10. Finally, this whole childhood cancer journey basically sucks.  At times, I may be “good” and able to appreciate everything.  Other times, I am a mess…..even if I don’t look like it.  Please continue this dance with me……embrace the insanity.  Celebrate everything….good and bad.  Why waste a moment???  We are only here for a short time…..make the best of it.  Love hard, forgive quickly, and inspire often.  That is what I want to do……

do you??????

Peace……

 

 

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