Guest Post- Mesothelioma Awareness Day

Mesothelioma Awareness Day

I am all about AWARENESS.  Especially for Neurofibromatosis....But when someone contacts me, who has stumbled across my blog, asking for help with awareness for something they are dealing with I am happy to help.

I met Heather Von St. James through my blog.  Heather is a cancer survivor.  A true fighter and advocate for Mesothelioma. Please visit her blog - http://mesothelioma.com/heather

I have to admit...I don't usually blog about things outside of my world of Neurofibromatosis, but Heather's story inspired me so much, and her fight for awareness was familiar to me. 

Heather was diagnosed with Mesothelioma at the age of 36 - and given just 15 months to live.

Mesothelioma is an aggressive form of cancer that attacks the lining of the body cavity, specifically, the lungs.  This type of cancer is caused by Asbestos- (a fibrous building material that is used for insulation)  Research has found that breathing in the minuscule asbestos fibers over long periods causes physical and metabolic changes in the body, leading to certain cancers. 

Eight years after being diagnosed, and undergoing a life saving surgery, that required the removal of her left lung, Heather has beaten the odds, and is now fighting to give Mesothelioma a face.  

Awareness is very important, it gets people talking and helps people understand that while YOU may not be affected by something - You can STILL DO SOMETHING to help someone who IS.

Please go to http://www.mesothelioma.com/ to read more about Mesothelioma

Get Whipped 4 NF

The challenge was born on August 23, 2014

After seeing the success of the Ice Bucket Challenge for ALS...I KNEW that it was possible for SOMETHING to be done for Neurofibromatosis.  The NF community was begging to be heard and desperately in need of the kind of attention that was being given for ALS...Something I knew very little about...That is....Until people across the country began dumping buckets of ice water on their heads.

It's a phenomenon....Something simple, fun, fairly harmless....That took off!!  I watched in amazement when my sons karate school 'took on' the challenge, standing on ladders and filling buckets-- So simple!

I understand that the ice water dumped on you, is supposed to simulate what it is like for those living with ALS...and what their muscles and nerves go through, as the disease progresses....

But I couldn't come up with anything that would help someone understand what it is like for someone living with NF....Aside from the GREAT ideas floating around like using sharpie marker and coloring on your face...to get people to know what it's like to be stared at....To be different....

Now whip cream really has nothing to do with NF....Except, it is bringing people together!  The laughter and smiles I have seen, as this 'challenge' grows, is AWESOME....And if all this challenge does, is bring a few happy moments into peoples lives...Then I would say that is a successful challenge!

It's simple....If you haven't been 'nominated' ....Then START!  Simply video yourself - saying who/how NF affects your life....OR who talked to you about NF...Then SPREAD THE FUN!!!  SMASH--SMEAR--RUB--SQUIRT whipped topping all over your face!

Don't tell me that it doesn't look like fun......

Reggie Bibbs and Lou Congelio

 Meg Leaf

Tracy Grgeorash-Brennan

Manitoba Neurofibromatosis Support Group

Lyndon Demers

Manitoba Neurofibromatosis Support Group

FUNN!!!!

My Mommy

Bailey Boo

My daughter Rachel

My daughter Riley

CHANGE HAPPENS NOT BY WAITING FOR THE PERFECT TIME....

BUT BY DOING SOMETHING -- NOW!!!!!

Love Your Enemy

I was sitting at church on Sunday listening to a message, that I've heard a hundred times. "Love your Enemy". A message I have known about since forever....But since, I truly don't have "enemies" I usually do the 'ya-I'm-listening-but-not-really-hearing-you' thing.

But...Somehow, this message hit me differently this time.  Usually when people think of who their "enemies" are....They think of people they hate.  People who have hurt them in some unforgivable way.

Sure - I have people in my life who have hurt me...But, I began to think deeper-

What about THINGS?

Things and circumstances have hurt me far more than people.

I have something in my life that has caused hurt, bitterness, resentment, anger, pain, destructiveness and true hatefulness.  So- I think it qualifies as my enemy.

Neurofibromatosis IS MY ENEMY.  And loving it, is impossible.  Or is it?

When I began this blog 4 yrs ago...I truly despised NF.  My blog back then was called "Life in the Big Shitty"....and I blogged ranted about how horrible it was to have NF....and how my life was anything but good.

Hate doesn't feel good.  I never walked away from a blog post back then, thinking.."WOW...that was great...I hope someone reads it..."   The blog back then, was an outlet for how frustrated I felt.  Now... outlets for anger are great...Everybody needs them....But if those outlets are destructive...You will only continue to spiral downwards.

And that's where I was.  ROCK BOTTOM!

The thing about rock bottom....The only way OUT....is UP!

"Thriving with Neurofibromatosis" has NOT made me LOVE NF.  But it has made me accept it.  Thriving has given me a purpose...And I LOVE THAT!

THRIVE ON!

Neurofibromatosis Awareness Bracelets

I am so excited about the new bracelets that I created!  They are a BIG change from my blue/green swirly 'Thriving with Neurofibromatosis' bracelets....And REALLY cool!

1 Inch Black Silicone, EMBOSSED with Green lettering!

Trendy-And High Quality!

One side says THRIVE ON!

the other side says Neurofibromatosis

Now everyone can see what the bracelets say!!! 

Order Today by clicking the link to the left

USA Orders only!

Neurofibromatosis Awareness Bracelets!

These will be ONE INCH BLACK bracelets with the above lettering!

Order to the left

<-------------------------

USA Orders only (for now)

Pictures of Neurofibromatosis

I wanted to thank all my wonderful NF friends for contributing pictures to this slide show.  I hope this brings awareness to a condition that is WAY under talked about!

To parents of newly diagnosed children, the pictures in this video show people mildly affected (which is typical) and people with more severe issues.  No one can predict how severe or mild your case will be.  The best treatment for Neurofibromatosis is to find good doctors, who understand Neurofibromatosis and who also listen to your concerns.

Surround yourself with people who will support and accept you...

And NEVER let Neurofibromatosis be something that defines you. 

Why Neurofibromatosis?

"Why do you have those bumpies on you mama?" My 8 year old daughter wraps her arms around me.  "'Cuz I have Neurofibromatosis, sweetie." I tell her.  "I know you do, but WHY do you got that?"  I snuggle Rachel in close to me and look at her cute little face...Her sweet eyes, look back at me, through bi-focal lenses.

"God sometimes chooses the strongest souls....Ones that HE knows, can handle really difficult things, and He marks them, so that He can tell them apart from everyone else." I explain to her.

"Is that why I got these brown marks all over me?"  She asks me.  "Yes, sweetie.  And God marks everyone in different ways...Some people just have marks that are more noticeable than others."

"When I grow up...I want to be just like you, mama!"   "Why is that honey", I ask Rachel.  "Cuz your God marks are really pretty!"

I can't medically explain Neurofibromatosis to Rachel...Not yet anyways...But I can help her to believe that no matter what, she is wonderfully and beautifully made by God.

Blogging Through Chaos

This morning, my oldest daughter started High School. I watched as she headed into the GINORMOUS building. She looked so small walking towards the doors. I wanted to get out of the car and run after her. I wanted to bring her back home, where she would be “safe”.

But I let her go....

I headed to the grocery store to pick up milk and caffeine. Two MUCH needed items in my house! My mind was whirling and it was barley 7:30am. The kids at home would soon be awake and hungry...But I found myself taking my time.

This day held busy-ness. With summer still hanging around for 7 kids at home...Chaos loomed, pending my return from the bliss, I found in grocery store, being able to shop alone.

What's it like blogging through chaos? Let me tell you...It's a bit like.....

8:30 am....Ya, kids were sure hungry. 7 kids ate an entire box of those pancakes on a stick. The box says there were 10 inside...so where did the other 3 go? I guess Riker and Brooklyn were EXTRA hungry.

Two kids had an assessment test this morning. Seems Riley is reading on an 8^th grade level. She's excited...and wondering if THIS teacher will let her bring her Twilight series to school. Rachel's school got things confused and put her BACK in second grade....She wasn't too happy about that. Chaos? Ya I got chaos. :)

Both kids ended up happy with their teachers...and Rachel was put in the 3rd grade, where she belongs.  YAY!

I get back and see 5 kids rolling around on the floor complaining of “dying of boredom.” “That's impossible I tell them.” And I try to get back to my blog post. Chaos?

Lunch was a mixture of whatever the babysitting kids brought, mac-n-cheese and otter pops. And oh, I found the rest of the pancake sausage on-a-stick things...They were under the kitchen table.

Riker decides he wants to catch up on his summer workbook. “This is This...That is That”...He writes his “N's” and “D's” backwards....But reads REALLY well! I'm so proud! Brooklyn drips her otter pop across the kitchen floor...then Carter walks behind her, saying “COOL...blue footprints!” UGH! CHAOS! :)

I look at the time...I still haven't put make-up on! Did I go to the school like this? Really? I have to go pick Bailey up, and get to the dentist, with Braden and Riley. Thank GOD, this dentist sees our kids 3 at a time! The younger kids went Friday and got their pic taken to be a part of the NO CAVITY CLUB! Woo hoo!

I hit construction on the way to get Bailey...and the car is overheating again.

We show up at the dentist and the lady behind the desk says our appnt is at 3:00pm, “YOU are REALLY early!”, she tells us. Why did I write down 2pm?

What's it like blogging through chaos? Let me get back to you on that one....

Update on Chemotherapy

Bailey is officially back on chemo.

 

Last week, as we were heading to the 7th floor, of The Children's Hospital, Bailey and I prayed that her counts would be high enough to start back up chemo...Bailey stopped the prayer, smiled at me and asked, "Why are we praying for something that makes me feel so bad?  Why don't we just pray for this tumor to go away?"

So we prayed.  

"Dear Jesus--You know exactly what our hearts want.  You know how to dissolve this tumor.  We pray for a complete healing. Amen"

As our elevator rose higher and higher, I began to feel an amazing sense that everything was going to be okay.  The answers will come, as they come.  The treatment, while necessary, is not the thing that will cure my daughter....For I believe in a higher power.

Following Bailey's lead through all of this has been an amazing learning experience.  She has taught me to focus on the good stuff.  She says, "Chemo may make me feel sick...It may make me lose hair, but it CAN'T ever take away what's in my heart!"

Every Wednesday, as we ride the elevator up, to get chemo, we now pray a new prayer.  After all...God tells us to pray bold prayers, right?  Sometimes, it takes following the lead of a child, in order for you to see that some answers, to hard questions, are very very simple.

<A pic taken after 2 doses of chemo.  Bailey has lost a considerable amount of hair>

Bailey is now looking forward to High School!  The other day, we took a tour of the school, and walked through her schedule.  I can't believe my "baby" is heading off to high school...She seems so grown up! 

Bailey never questions Thriving with Neurofibromatosis...She just does it.  Does she have bad days?  Sure she does, but she isn't focused on them. :)

Are YOU Thriving Today?

Here We Go Again!

This week we re-start chemotherapy.  A three week break was nice.  The Vinblastine, although lower in dosage then the last treatment, has a harsh affect on Bailey's body. She has lost about 15 pounds, and also lost a considerable amount of hair.  She has mouth sores, and body aches.  Her skin is blotchy and pale.

I think these side affects bother ME, more than they bother Bailey.  I see my daughter transforming, it's scary.  But, she seems almost unaware of all that is happening...All that could  happen.  Maybe that's a good thing, I don't know.

The whole world of chemotherapy, is a strange one.  Anyone who has experienced any part of this world, knows what  I'm talking about.

It's like the moment you walk into the hospital and ride up the elevators, everything "normal" stops.  Your world morphs into something unrecognizable.

Life becomes all about numbers, and needles.  Good days and bad days.  High fevers and hospital stays.

Dealing with all this "stuff" is hard for even the strongest spirit.  Sometimes, I silently ask God what the point of all of this is.  Why Bailey?  Why now?  And when will we finally see the light at the end of the tunnel?

It seems like ever since 'Thriving with Neurofibromatosis' began...The whole basis behind it gets tested, over and over and over.  How can I keep up?  How can I keep my focus that the "light at the end of the tunnel", lives inside each one of my kids?

I guess the answer is to just simply do it....and as always THRIVE ON!

Who is Listening?

Communication is the key to better understanding, right?  I am typically clear with how I try to get people to understand what it is I am saying.  But there are some, who just choose to not even try to understand.

I was referred to an Endocrinologist to further investigate the NF tumors scattered all over my thyroid gland.  These tumors cause no pain, or obvious symptoms, but they are there.

I met with a doctor who is in his 70's.  I could tell right away this man was going to be the type I would have to stand my ground with.  The first words out of his mouth was something about fibromyalgia...."No, not fibromyalgia...."Neuro-fibroma-ma-tosis", I said nice and clear.

He looked very confused.  "You know there's no cure for that?  What exactly were you looking for me to do?"....Uh...gee Doc...Your job, maybe?

I know there is no cure for Neurofibromatosis.  But there is nothing I hate more, than being dismissed, like I am some leper, who just needs to go back home to hide.

Being robbed of hope, from someone who has known me for 2 minutes?  Not gonna happen!

First of all, if you have read any of my previous posts, you know that this kind of attitude from a doctor, doesn't fly with me.

After the doctor said that he couldn't help me....I got up and walked out the door.  He didn't examine me, didn't take any kind of history, or look at any of the MRI, Ultrasound notes....Just simply put no effort in trying to understand me at all.

Sometimes, it takes standing up, and walking away....to get you on the right path. The path to 'Thriving', takes effort...And I know I am worth the journey.  It's time to clear the path of its road blocks, and press on!

As Always--Thrive On!

Facing Mountains

I know how hard it is, to face giants.  To push against something, that is ready to crush you.  To, with all your might, go up against something that, seems, unwinnable. (is that even a word?)

I get questions all the time, asking me HOW, to stand up to doctors, who seem so unwilling to listen.  Doctors, who at times, seem to not understand the pain and frustrations that come with having Neurofibromatosis.

If you have come to this blog and are dealing with Neurofibromatosis, you have found someone who understands.  I am not a doctor, or medical professional...But, I am living with this disorder, and experience many of the same frustrations you do.

I didn't get to "Thriving with Neurofibromatosis" overnight.  In fact, there are days that I don't "THRIVE" at all!  But that bar is set....And it's something I try to reach for everyday.  Every time I face my mountain, THRIVING is my goal.

Every time I face a doctor who tells me that nothing can be done, or that I have to simply endure my pain.  Every time I face doctors who make choices for my children that I don't agree with...Or treatments, that seem to be doing more harm than good....THRIVING is my goal!

So how do I do it?  How do I stand up to the world of doctors who are obviously more educated than me?  Who seem to "know-it-all"...Doctors who wear the respected white coats, and have YEARS of experience.

First, you ARE your own health care professional!  It's important to remember this when facing ANY health care crisis.  YOU know your body and YOU know your children, better than ANY doctor.

It all starts with respect.  If you do not respect your doctor...FIND A NEW ONE!  I can respect someone, and still disagree with how or what they think...And respect goes both ways...If you feel you aren't being heard and treated well by your doctor, it's time to move on.

Another thing...Getting angry gets you nowhere...and can oftentimes leave you more frustrated than when you began.  I've been there and I know that people who don't listen, and who act dismissive of your pain, can leave you feeling very helpless, but anger only escalates this frustration and can increase your symptoms.

Two weeks ago, I faced a mountain.  A very respected Neuro-Oncologist, who was on-call while my 15 year old daughter was facing her own mountain, came into the hospital room with the results from the blood test.  My daughter's blood count had dropped 24 points overnight, and this doctor wanted to write up discharge papers and send us home.

My mountain was right in front of me, and I had no choice, but to start climbing it.  "I don't agree with going home...while her counts are still low." Is all I had to say to him.  I got the "Ya Buts...."  But the choice this doctor had made for us wasn't right.

I knew Bailey was better off staying one more night.  Confidence and respect can go a LONG way, and can help make your mountain climb easier.  It's scary, and intimidating, but if YOU don't make this climb...Who will?

I can't go in with you to the doctors office....But this message can!

Thrive On

This Is Where We Are

One week ago today, my daughter Bailey was laying in a hospital bed, with a 104 degree fever and a ANC count of 1.  A "normal" ANC count is above 1600.  Bailey was SICK.  I was confused and scared and didn't know exactly what all these numbers meant.


The new chemotherapy that Bailey was switched to had severe side affects.  Since Bailey's tumor doubled in size with the previous chemotherapy treatment, her doctor decided to use Vinblastine...a "faster and possibly more effective treatment". 


With her blood counts going down, her risk of infection went up....And that's exactly what happened, while she was at camp.


A doctor explained chemotherapy to me in a really good way.  She said that  chemotherapy was a smart bomb: It only targets certain types of cells, particularly those that grow and divide rapidly. That means it targets "tumor cells", but it also means that white blood cells, which are produced in the bone marrow and have a rapid turnover rate, can be damaged as well. 


White blood cell counts, sometimes called leukocyte counts, drop with most chemo drugs. Neutrophils, which are a specific type of white blood cell, are the most potent disease fighters. The doctor  referred Bailey's low white blood cell count as neutropenia. 

click here for more information 

Neutropenia

Bailey was discharged from the hospital with a blood count of 102, which was a BIG improvement from where she started.  While it is still considered low, a rising count is a GOOD thing.

Now I find myself panicking wondering if her low energy is related to a low count again....Does she have a fever?  How can I let her go to CTF camp and be so far away from me?

I am torn between keeping her close to me and basically putting her in a bubble....Or just trusting that she needs this camp...She needs to be a kid...She needs to experience the world, not hooked up to port IV's.

I am having a tough time explaining to people how serious this really is.  Some people think that because Bailey was discharged, that she is "cured"....That God did a healing and she is fine now...And while I do believe that God definitely worked in this situation, Bailey is far from cured.

Since Bailey is having so many bad side affects from this chemo, the drs decided to hold off on chemo, until Bailey returns from camp....Then, they said, we will go "full force" attacking this brain tumor.

FULL FORCE scares me!  Wasn't that what we were doing, when she got so sick?  Isn't FULL FORCE what brought her to 104 degrees and 4 days in the hospital? 

This is why I have no answers when people ask, "what's next?"  

We live in our "today".  We enjoy the days that Bailey feels well enough to swim.  We THRIVE in our "now"....And pray for our tomorrow.

Thrive On!

Neurofibrobromatosis Awareness Bracelets

I was surpirsed by FedEx today...My bracelets showed up early! I'm excited...they look pretty good! After my issues with this company, I was delighted when they offered to replace the WHOLE batch....and toss in a few kid sized bracelets.

My intentions with the printed bracelets was to get the message to "pop". The engraved ones were great, but I was afraid the message didn't show up enough.

Sadly, the printed ones faded within days, and I was left with many unhappy folks. I apologize for this, and this is why I am offering to replace any of the printed bracelets upon request.

The "new" bracelets have a slightly different look to them, but I really like them!

If you would like to order NF Bracelets, there is a link to the right (please be sure to pay attention if you are ordering internationally.

If you ordered the printed bracelets and you would like a replacement bracelet, please email me directly at kristi.hopkins@gmail.com

I am grateful to 24wristbands for going the extra mile and making a very happy customer.

We now have KIDS SIZED BANDS (limited number) so when ordering, please leave a note through PAY PAL, specifying the size of bracelets you would like!

Thank you for supporting Neurofibromatosis Awareness!!

THRIVE ON!

Un-Freaky Friday

If someone told you, your whole life, that the grass was blue and the sky was green, you would believe it, because you wouldn't know any different, right? Well that would be correct until someone came up to you and said "The Sky is really Blue, not green." You would start to question everything you have been told.

Yesterday Neurofibromatosis was featured on a top talk show that reaches millions of viewers, worldwide. Oprah has never been a favorite of mine. I feel she selects stories more to gain popularity than to spread awareness.

Mentioning "The Elephant Man Disease" and Neurofibromatosis, is not only "Offensive" IT'S WRONG!

http://www.oprah.com/oprahshow/Living-with-Neurofibromatosis

If had never heard of Neurofibromatosis before, and sat and watched Oprah's show, I would be led to believe 1) That ALL people with NF look the way Ana does (bless her heart) 2) NF is only diagnosed through a genetic connection and 3) NF is related to the "Elephant Man Disease"

If someone -- especially someone as well known as Oprah is going to cover "Living with Neurofibromatosis", what they really need to do is get a variety of guests and disclose the true facts of life with NF.

Hey Oprah, did you know that half of the 100,000 people living in JUST the USA with Neurofibromatosis, got diagnosed through a "Spontaneous Mutation"?

Did you also know that Neurofibromatosis is HIGHLY variable, affecting those diagnosed in MANY ways. With some people, you would never know they have NF, others are affected like the young woman on your show....with many many in between.

Lastly, Joseph Merrick had Proteus Syndrome, deforming and twisting his body, making him know as 'The Elephant Man'. If you and your producers had done proper research, you would have learned, just by 'googling' Neurofibromatosis, that it is NOT that same condition Joseph suffered from.

There is so much more the media can do to help spread the word and educate the world. I find it sad when NF families reach out to the media, only to have no response, because their case won't raise the ratings. But what the media fails to realize, is that, if they did a show, showing everyday NF families, it would not only boost awareness, it would in fact be a highly rated topic!