fightcancerlikeagirl

[fightcancerlikeagirl]

Black Coffee

A question I get asked all the time is this...”someone we know was just diagnosed with cancer, what should we do or say?”

When Naomi was first diagnosed, I remember actually getting a manual about what to expect, what to watch for, different definitions about different treatments, procedures, etc.  We referred to that a lot and as it attempted to be just that, a manual on childhood cancer, it was not complete because it could not fix her.  Manuals are supposed to give you step by step instructions on how to fix things.  The manual on how to fix your child from stage 4 cancer does not exist, and neither does the manual for what to say when someone you love is diagnosed with cancer.

Today’s world is all about opinions, options, and judgement.  Likes and dislikes, hearts and thumbs up.  Our ability to express our needs or wants is at the touch of our fingertips thanks to the latest and greatest in technology.  People in the service industry are now wired to bend over backwards to fulfill every single desire of ours because we have become spoiled with our 1/2 sweet, non-fat, light whip, soy milk, light caramel macchiato requests.  Or in my case, a venti white tea peach refresher.

Our wants have become our needs.  We are so used to getting what we want that we don't know what we need anymore.  We are so used to our opinions being included in every single day to day interaction that when it comes to a time when our opinions really don't matter, we don't know how to shed the ridiculousness.  We are blind to the line that separates needs from wants.

When someone you love is diagnosed with cancer, they have just one need and that is to live.  That is the only time that the line between need and want is perfectly in sync.  They need to live and they want to live.  That is their only focus.

So what can you do?  With no manual and no app, what can you do to help them achieve their need and want?  As difficult as it might be, you need to completely shed every single option, idea, like, dislike, thought, and action running through your mind.  You need to become a plain cup of just black coffee when interacting with them, like a blank slate.  Keep your ridiculousness to yourself.  You also need to be open to the fact that you may not be able to help or they don't even see your help.  Once you realize that this is not about you and how you can help them and feel good about yourself, then you are ready.

We are not engrained to become completely unselfish in today’s society as there is so much personalization in everything we do.  In order to truly serve someone we need to become the servant.  Put yourself on the other side of the counter and become the barista.  Become the unsullied.  Keep your opinions to yourself and just be there, open to anything.  In this case, the good of the one outweighs the good of the many.

This is where it becomes a delicate dance because the people you are trying to help either don't know what to ask for OR more commonly, will not ask.  If they want to blog about their journey and yell it from the rooftops...OK, yell it with them.  If they want to bunker down and not share anything....OK, build them a bigger shelter to keep them protected.  If they want to bath in potatoes and leeks because they read it on the internet....OK, get prepping some veggies!

Some of the most perfect moments in our unperfected time had no words involved.  The phrase actions speak louder than words is absolute truth.  A real hug from a village of care member with no words exchanged literally feels like they are trying to transfer their energy into you to refuel your tank.  Their body is saying “here, take a piece of me because you need it more than I do, and I will take your pain because I can.”  Those hugs are magical.

A True Prayer.  Once again, shed your own opinions and judgments, get on your knees and throw a Positive RAY (PRAY) upwards.  Also magical.

If you are waiting for them to ask you for help, I can guarantee you will be waiting for a very long time because that is them fulfilling your need to be asked for help rather than you fulfilling a need for them.  If you don't like the way they are handling it, once again that is you inserting your opinions onto them.  Stop that.  Shed your ridiculousness and become a true servant.  If you can't shed your opinions and become black coffee when interacting with them then you are doing more harm than good so one way you can help them is to get out of the way.  You have become a barrier in their tunnel vision to live.

Once you understand these things, then you are ready to become part of their village:

#1 - words are not needed.  Hugs are.

#2 - your opinions do not get to be a part of their journey.  Accept that or get off the road.

#3 - your help may go unnoticed and you need to be OK with that.  Because this is not about you.

#4 - keep your grief about the situation hidden from them as that is just adding to their journey.  Take their grief if possible, do not give them yours.

In short, in a world of fancy, become just plain black coffee.

[fightcancerlikeagirl]

1977 Monte Carlo

Hello blog, it has been awhile, which means life has been good.

I usually only blog when there is something literally bubbling out of me and apparently the time has come to empty my tank once again.

Local, Saskatchewan kids are still dying from cancer and they are children and families that we have relationships with.  I could have gone to 5 childhood funerals since starting this journey 3 years ago.  That is just the warriors that I know about.  There are more that I don't know about.

I never go to the funeral of a child dying from cancer.  Funerals are a place to find peace and I do not think I will ever find peace in that sort of environment.  I hope the families do and when they do, THAT is a true sign of Strength.

Speaking of strength, let’s look at the strength of a childhood cancer warrior who is dying.  The physical part of the body is filing with tumours, one mom described it as her child was gasping for air like a fish out of water.  Imagine the strength it requires to hang on when your body is rebelling against you.  Now imagine the strength it requires to make the choice to leave your parents, leave your family knowing that by making that choice, you win because you get to live in Glory while the cancer dies, finally.  That sort of strength or bravery is unmatched, especially when it is a child making that choice.

That choice is being made every 2 days here in Canada and yet childhood cancer is not a priority.  Every 2 days a child dies from cancer here in Canada and NOBODY knows that.  The very definition of evil in my head is to wreak havoc while people remain ambivalent.  If a gunman walked into a school and shot dead 180 children every year, people would know about that.  Oh wait, we do know about that because the news jumps all over that but a quiet gunman, picking our children off every second day remains a non-issue.  In fact, it is so much of a non-issue that the very gap or chasm in which we have to cross makes us on the knowing side question if it is indeed achievable.  But we keep trying because to not try makes us an accomplice to the gunman called childhood cancer.

Why the reference to the 1977 Monte Carlo?  That vehicle was my first vehicle and it was the most reliable vehicle in the college parking lot.  It would start in -40 degree weather and could seat 8 passengers comfortably.

That vehicle was also built more than 40 years ago, about the same time frame that many of the treatments used still today were channeled into childhood cancer treatments.  So picture this, you are 65 years old, newly diagnosed with breast cancer and you get to sit in a 2017 luxury sedan for your treatments but if you are a child, your vehicle or treatment of choice is a 1977 Monte Carlo.

As crazy as that sounds, that is the best picture that I can paint in regards to the realities of childhood cancer.  Make no mistake, between myself, my sisters, my mom, my cousins, and extended family, I know we will be sitting in that luxury sedan eventually but man on man, if I had the choice, I would love to give that luxury sedan to a child for a test drive.

I guess that is what we this village of care is trying to do.  Create a new vehicle for childhood cancers.  I am realizing quickly in the world of fundraising and advocacy that it is not about raising the most money but it is about making the money count the most.  Anyone will take your money and tell you what you want to hear but not all of them follow through.  Advancing research is more than just cutting the cheques, you also have to hold the institutions accountable to make sure that the research that you are funding matches your why the dollars exist in the first place.

Our why is for the kids that are still sitting in a 1977 Monte Carlo.  What is your why?

[fightcancerlikeagirl]

Our first #pediatriccancerresearch grant here in Canada! This is what we have been working toward for the past 2 years and it has become a reality! Children who receive doxorubicin as part of their treatment have to be closely monitored for 20 years due to the effects it has on the heart. This treatment goal is to release the chemo at the site of the Tumour Only, saving the cardiotoxic side effects ❤️. This little #villageofcare mission is to change the conversation for future childhood cancer families, and now we are one step closer 🙏. #kidsgetcancertoo #childhoodcancerawareness #chemotherapy #radiationoncology #rhabdomyosarcoma #stage4cancerthriver #takethattumor https://www.instagram.com/p/BoX5YasDzij/?utm_source=ig_tumblr_share&igshid=1e9qugar4a302

[fightcancerlikeagirl]

September 30th is the last day to visit @cityperkscoffee to have a delicious cup of @49th coffee and help move the needle on much needed #pediatriccancerresearch . Only 6 new treatments for #childhoodcancer have been developed over the past 40 years. This is not acceptable which is why Team Naomi and Team Roan are trying to do something about it. By the way, the butternut squash soup today was the perfect way to break into fall! #kidsgetcancertoo #villageofcare #coffeeforacure #makeitok #letsdobetter (at City Perks) https://www.instagram.com/p/BoVLyLEDlN9/?utm_source=ig_tumblr_share&igshid=940n1z9dqxbo

[fightcancerlikeagirl]

@cityperkscoffee has 5 days left for their coffee for a cure campaign! Team Roan’s momma Coralee is starting the conversation to change the conversation, and that is Not Easy! It has taken my hubby almost 3 years to be able to talk about it. This is kids getting cancer, Nothing about that is easy! Go grab a delicious cup of coffee and support the whole team at City Perks, because they are aware that #kidsgetcancertoo and they are doing something about it 💪🎗❤️☕️. #childhoodcancerawareness #pediatriccancerresearch #villageofcare https://www.instagram.com/p/BoMrZGWD26M/?utm_source=ig_tumblr_share&igshid=17r1thk7d07gy

[fightcancerlikeagirl]

Look at all those paper cards of #hope ! Remember to take your kiddos to @Flynn’s Forrest to burn off some energy and get their name in a card as 100% of the profits go towards #pediatriccancerresearch 😊. Love love love this little #villageofcare and what it can do when united behind one purpose. #changetheconversation #letsdobetter #makeitok #kidsgetcancertoo #saskatchewanrocks #childhoodcancerawareness (at Flynn's Forest Indoor Playground) https://www.instagram.com/p/BoIWXkXDPfx/?utm_source=ig_tumblr_share&igshid=1qgvv14ptdobu

[fightcancerlikeagirl]

The snow could not keep this crew away as our first ever bottles against the Beast is complete! Thanks to the families that lent us your children, your hands, your time, and your trucks 😊. 100% of the proceeds will go towards #pediatricancerresearch @alandersonssfs #kidsgetcancertoo #childhoodcancerawarenessmonth #rhabdomyosarcoma #stage4cancerthriver #villageofcare https://www.instagram.com/p/BoFjE2gDBXn/?utm_source=ig_tumblr_share&igshid=1dmkpnxz3fhv7

[fightcancerlikeagirl]

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A post shared by Team Naomi Get Well Now (@teamnaomi_sk)

Team Naomi is having a big bottle drive on Sept 22, from 1-4 at St Joes High School! We are looking for volunteers for sorting and driving. If you already have a large summer stash that you are looking to get rid of, let us know 😊. All proceeds go to #paediatriccancerresearch but you knew that already 🎗💪. Check out the event on FB, called bottles against the beast. #childhoodcancerawareness #takethattumor #stage4cancersurvivor #kidsgetcancertoo #villageofcare https://www.instagram.com/p/BnsLxqIjeuB/?utm_source=ig_tumblr_share&igshid=10uxwp2h2ssa1

[fightcancerlikeagirl]

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A post shared by Team Naomi Get Well Now (@teamnaomi_sk)

Day 12 of #ccam brings yet a new business to our #villageofcare ! Please welcome and support Flynn’s Forest as they are helping us spread the word that #kidsgetcancertoo🎗 The staff have created paper Flynn cards for your kiddos to sign and hang on the walls to show our local warriors that they are not alone 😊. It takes a village to battle the beast, no matter the age of the warrior. #cancerdoesnotdiscriminate #takethattumour #makeitok #letsdobetter (at Flynn's Forest Indoor Playground) https://www.instagram.com/p/BnoyiM9DZDG/?utm_source=ig_tumblr_share&igshid=1as013i6es07m

[fightcancerlikeagirl]

#canadaday🇨🇦 celebrations gave my warrior yet another reason to accessorize 😊. #thankful #smilesmatter #takethattumor #stage4cancerthriver

[fightcancerlikeagirl]

Today marks Naomi’s 3 year “crapaversary” also known as #diagnosisday 💔. She was so sick, eventually losing 40% of her tiny body weight. We were broken as a family unit. Fast forward 3 years and her cancer is still a shadow in this family, but it could have been so much worse. #takethattumour #kidsgetcancertoo #sciencerocks #pediatriccancerresearch

[fightcancerlikeagirl]

Naomi’s flag football team got a surprise when @brettboyko67 stopped by to talk football with the girls 😂. My hubby was pleasantly surprised when most of the girls knew what the NFL was considering most of them had never touched a football until this spring 😊 #takethattumour #villageofcare #girlsplayfootballtoo #smilesmatter

[fightcancerlikeagirl]

The world lost a true #childhoodcancerwarrior after a battle like no other. Marlow was stronger than her cancer and proved that time and time again when it kept coming back, but her cancer was stronger than the science currently fighting it. Zero new treatments for #rhabdomyosarcoma in over 40 years. This is why we support the #cc_tdi and the 100%Fund through @childhoodcancercanada Marlow was featured in the #terryfoxprofyle and @sickkidstoronto Please send waves of comfort and strength their way 💔 #kidsgetcancertoo

[fightcancerlikeagirl]

Naomi and her dad have made it to the voting round for #bestbalddad ! Please go the the Facebook page as outlined below to cast your vote 😁

[fightcancerlikeagirl]

Having a dad who helps to raise close to $200 000 for #pediatriccancerresearch makes this guy the #BestBaldDad in our books ❤️. Looking forward to taking these pictures every year 💪🎗😊 #kidsgetcancertoo

[fightcancerlikeagirl]

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A post shared by Team Naomi Get Well Now (@teamnaomi_sk)

Thank-you #science and thank-you #villageofcare ❤️. We love this province and this city! Pretty hard to beat this week 😊#saskatchewanrocks #saskatoonrocks #kidsgetcancertoo #thankful #pediatriccancerresearch #takethattumor #rhabdowarrior #stage4cancerthriver

[fightcancerlikeagirl]

Coming full circle with Troy Davies and the team at Medavie Health Services. It was 2.5 years ago that Troy first learned of our #warriorprincess at a school fundraising event with just a few #villageofcare members. Now we are standing with him and the team in front of 14 000 @saskrush fans, some of us looking a little more freaked out than others 😂. Wonder what the next 2.5 years will bring? #cancerdoesnotdiscriminate #kidsgetcancertoo #rushnation #villageofcare #thankful #saskatchewanrocks #takethattumor #stage4cancerthriver