What's Next?

I had no idea that I would be able to love something that scared me so much.  Speaking in front of large crowds was my hubby's thing....NOT MINE...And I was always safe in Rich's shadow.

But...
Telling my story...And helping to encourage others has become the most important thing....And I have found that the more I do it, the more my fears just slip away.

I want to do this more.  Get out there and talk about Neurofibromatosis.  It's a necessity!

2016 is going to be filled with speaking opportunities...And I am so excited for this!  The more we talk about Neurofibromatosis...The more people will accept and understand this condition!

What do I speak about...?

THRIVING!  My message is positive and uplifting, even while addressing serious complications caused by NF.

I speak about being a mother of 6 children, 3 of the children having an NF diagnosis...While also managing my own medical needs, having NF.

Living a life that is fulfilling and meaningful is something ANYONE can do!

If you or someone you know is looking for a speaker please contact me:

kristi.hopkins@gmail.com

SUMMER CAMP!

I couldn't sleep.  I was so excited.  My-First-EVER-Summer-Camp-Experience!  I tossed and turned -- Imagining what A WHOLE WEEK AWAY would be like!

I had just moved back in with my dad, after a LONG and nasty custody battle....And this sort of took my mind off what was happening....In reality, I barely thought of my mom after that.  I was 10 years old, and very confused about what was happening.  Maybe, that was the whole reason for sending me....

My husband called this....Going TO SOMETHING....To get AWAY from something....And I thought this was a perfect explanation.

I was getting away from courts, who demanded I be removed from my mother's custody immediately.  I was getting away from those first awkward moments of my dad's new wife...Who, while I was gone at camp, set up my room and bought me some new toys....since everything I had, was left with my mom.

The 'Outside' world didn't exist while I was gone.  I lived a life of MAGIC.  If only for a week.....

 

Now....It's MY kids' turn.  We have been blessed with a couple different Summer camps....All who accept children facing challenges, medically.  

Braden and Rachel attended camp at Round Up River Ranch....A beautiful place, that rests in Southwestern Colorado.....It's the most beautiful place.  I was lucky enough to have volunteered there a couple years ago.

Zip Lines, Rock walls, canoeing, fishing...and the most comfortable beds I have ever slept in!

This week, Bailey, Braden and Rachel are at a camp through the Children's Tumor Foundation....A camp for kids specifically with Neurofibromatosis.

A whole week jammed full of super awesome activities....A week where there are no doctor appointments, MRI's, blood draws....and....they can meet kids who have the same medical condition they do.

Every kid needs a break.  Every kid needs to experience a world that is outside of their own family.....A break from school, chores and video games.  A chance to LET GO and meet people....A chance to GROW UP and develop skills on their own.

And....Every parent....Also needs to learn to LET GO....and allow their children to experience a place where they are able to develop social skills that create confidence and a stronger sense of who they are.

A place to learn to THRIVE!

Thank you to Round Up River Ranch and Children's Tumor Foundation from the bottom of my heart...For giving my children the chance to experience the MAGIC of Summer Camp!

THRIVE ON!

4th Annual Denver NF Walk

Do you ever feel alone having Neurofibromatosis?  I know that there are times when I feel so consumed by everything we are going through....So alone and isolated with all that NF throws at us, that I forget that there is a whole community of NF families out there...Who are going through some of the same stuff we are!

September 9, 2012 was the 4th Annual walk for Neurofibromatosis Awareness. 

You may feel alone, isolated, afraid and angry...But it's only when you step out of those emotions, that you can see a world who suffers with you....And it's when you step out that those emotions and feelings are replaced with HOPE & HAPPINESS!

Social media, like Facebook and message boards are AWESOME....And I have nothing bad to say about them...I use them every single day!  But, if that's as far as you take "reaching out"...You are missing out on a world that is ready to embrace you, and all of the challenges you are facing.

REAL LIFE support groups are ALL around you!  

WWW.CTF.ORG is a great first step in finding a local NF group.  If you don't find one in your area....Contact CTF and ask about what it would take to start a new group.

ACTION and ATTITUDE

If you have the will and the motivation -- ANYTHING can happen!

 

THRIVE ON!

3rd Annual CTF Neurofibromatosis Awareness Walk!

The weather was perfect and the kids were all dressed in their walking gear as we headed to Littleton, Colorado for the 3rd Annual CTF NF Awareness Walk.  The walk took place at Clement Park and had a turn out of over 200 people!  Friends and and family members dealing with the diagnosis of Neurofibromatosis came out to show their support by taking part in the walk and also providing much needed donations, to help fund research.

"Team Thrive" had their NF green shirts on and sported  trendy blue/green hair!  Five of the Nine people in TEAM THRIVE are affected by Neurofibromatosis, including my 15 year old daughter, who is currently undergoing chemotherapy treatment for a brain tumor, caused by NF.

One of Bailey's doctors as well as Adam Foote from the Colorado Avalanche came to show their desire to learn more about Neurofibromatosis, the tumor based disorder that affects more than 3,000 births, each year.

After the walk, which was about a mile, family and friends shared a BBQ lunch and took park in the great items in the silent auction.  The total amount raised was over $20,000!

CTF Colorado Chapter Annual Picnic

  I LOVE connecting with other families who are dealing with Neurofibromatosis.  The connection these activities provide, is a vital part in how we cope with this disorder.

Today was the CTF Annual Picnic in Colorado and my family (all 8 of us)  piled into the van, excited to meet some new friends.  

Mr. Fun the clown/magician showed up and made all the kiddos laugh, with his jokes and great tricks!  

 Rachel was picked to show off some of Mr. Fun's silly tricks!

Thank you CTF, for another GREAT activity!  

Reaching Out-Neurofibromatosis Style!

Obviously, I talk a lot about thriving. Not just with NF, but also in the other challenges I faced while not even knowing I had NF.


Ten...heck even five years ago, I was in no place to be out in the open with my NF. I was still in serious denial about what was happening to and around me.

What I've come to realize is that the more I'm "out there", the more I come to accept my diagnosis - and even help others accept theirs. The key to creating a more positive outlook on my life with Neurofibromatosis was to become my own Advocate - to stand up for myself and my kids.

The Children's Tumor Foundation in Denver held the 6th Annual Gingerbread House Decorating Activity today. Bailey, Braden, and Brooklyn all attended with me, while Riley, Rachel and Riker spent the day rehearsing for our church Christmas Play next week. Rich, in his infinite wisdom, stayed home watching football - COWARD :)

What a wonderful turn out there was...and GREAT opportunity to continue to reach out to families affected by NF.

I met so many new people today, with all levels of NF. One woman and her daughter stuck out in particular. She talked about how long she had been receiving the CTF newsletter, but she had never gone to an event until today. Like me, she was prompted by her desire to give her daughter, who also has NF, an opportunity to relate to others her age with the disorder - to stop hiding at home and seek encouragement from others. What she didn't realize is that her presence was an encouragement to all of us as well.

When we as NF'ers stand out in the open, when we stand together, we can find the hope that seems so difficult to hold onto when we stay hidden behind closed doors.

In Thriving with Neurofibromatosis, I talk about having the right Attitude, and taking Action. Today, I did that, along with about 50 other people, and we had a blast. What can YOU do this week? Who can you encourage? Remember, the easiest way to cheer yourself up is to spread the cheer YOURSELF!

Thrive On!



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CTF Hosts The 6th Annual Gingerbread House Decorating Party

Sunday, December 5 · 2:00pm - 4:00pm

Colorado Academy, In the Campus Center (dining hall)

3800 S. Pierce Street

Denver, CO

Join us for a fun holiday tradition of the Colorado Chapter of The Children's Tumor Foundation. We will provide a gingerbread house for each child or young adult to decorate (ages 3 to 18). Adults willing to volunteer are also welcome. Please bring at least one bag of candy as decorating material (no peanuts/nuts please!).

Contact Catherine Laskey @ (303) 734-9942 or ilaskey@me.com to RSVP or if you have any questions. Hope you can join us!!

2nd annual CTF Walk!

I'm excited today...It's the 2nd annual walk to support cure/treatments for Neurofibromatosis. My kids are excited too and dressing in green and blue.

This cause means so much to me and I appreciate all the wonderful support my family has received....without the support, the cause would be kind of pointless.

To all my friends who are dealing with an NF diagnoses....I love you all! To those who do not have the diagnoses.....Please do me a favor and spend a few minutes learning about NF.

Go to www.ctf.org and see what me and my family are dealing with.

And it's not too late to donate to CTF via TEAM THRIVE!

http://www.active.com/donate/2010denvernfwalk/nfwalkKHopkin

God Bless!

Getting Ready For CAMP!!!!

Bailey is so excited for her very first trip to the CTF camp! She leaves on Saturday, and has actually been packed and ready, for over a week! LOL

The camp is in Salt Lake City and the intinerary was just amazing!

*Raging Waters *The Hogle Zoo *Boondocks

I know that this will be the time of her life...and she will meet some amazing people!

Bailey - Boo, have an amazing time at camp...take it all in sweetheart! Make sure to take lots of pictures so that you can come home and share them with us!

I will miss you like crazzzzzy!!

Interested in attending CTF camp next year? Go to www.ctf.org

Neurofibromatosis

Neurofibromatosis Awareness Month

This whole month has been filled with bringing forth awareness about a disorder that is not well known. Very few doctors I have come in contact know much about it, and friends and family know even less.

Many people with Neurofibromatosis, suffer in silence, their pain not acknowledged, their symptoms often ignored.

I often go to the doctor complaining of headaches. After an examination, one doctor gave me the diagnoses of migraines....but I knew I was dealing with something far more complicated than migraines.

It took several visits, for me to finally convince my doctor to refer me for an MRI. A week after my first MRI, I was diagnosed with NPH (Normal Pressure Hydrocephalus) and a Lipoma (brain tumor) I was also told that a small piece of my brain was coming down through my spinal opening.

If I was younger, a shunt would be the resolution to this problem, but both my Neurologist and Neurosurgeon indicate that a shunt surgery could do more harm than good.

Some statistics have stated that as much as 23 % with Neurofibromatosis also have some form of Hydrocephalus....Most go undiagnosed, until they are referred for a MRI scan.

For me, my hydrocephalus gives me daily "pressure" headaches. They never seem to go away, and often have peaks or times when my pain is not controlled by ANY medication. My vision and coordination is also affected.

Last year, I attended a SMALL NF symposium here in Spokane, where Dr.Judith Martin spoke. Not only did this "DR" compare living with NF to living with freckles or a large nose, she told everyone in the room, that a baseline MRI was not necessary for NF patients.

This information was not only WRONG, it was very offensive! Having Neurofibromatosis and having freckles is not the same-or even close. I often wish I was as THRIVING then, as I am now. I would have stood up and told this doctor off.

Also if my daughter Rachel, who is 7 yrs old, with NF1 did not have a baseline MRI, we would not have discovered the basal gangelia tumor, and many other issues going on in her brain, that were not symptomatic.

If not for me begging my Drs for a baseline MRI, I would have been left undiagnosed of my Hydrocephalus and brain tumor.

I have no idea where this doctor got her information, or the basis behind her beliefs, but it just goes to show you how misinformed so many people are about Neurofibromatosis. Even doctors do not necessarily know best.

NF Awareness goes far beyond family and friends. NF Awareness, must reach far further. Please, if you or someone you love is dealing with Neurofibromatosis, help by talking to people about it and ask questions!

www.ctf.org

May is NF Awareness Month!

There's no better way to kick off Neurofibromatosis Awareness month than to have a full schedule of MRI's, blood tests, Neurologists, Ophthalmologists, ENT's and full on stress! :)

'NF' has taught me a lot, most importantly....that you can count on NOTHING! Predictability does not exist, when you are dealing with ANY disorder, not to mention, one whose variability is so extreme, like NF.

I have had many doctors try to tell me what to expect, and how things will turn out, only to have it go entirely a different way. No doctor...I don't care how much schooling or training, should ever label you or throw you into a box. Each person should be treated according to THEIR needs, not some needs listed in a text book.

Take for example Bailey....14 yrs old, never had NF complications, except for learning challenges. Drs, had no reason to concern themselves (and I didn't either) that there was a tumor, silently growing on Bailey's auditory nerve.

Bailey's first MRI, would result in a scurry of doctors trying to figure out what kind of tumor this is...and trying to convince me that it's THIS, when I know for a fact it's THAT! Textbook rules do not work all the time, and I'm tired of doctors doing this to us!

Neurofibromatosis for me, would leave me undiagnosed until after 5 of my children were born. The massive symptoms I was having, was "All in my head"....Gosh if those drs would have just listened to me! We would find out, literally....It WAS all in my head! Diagnosed with enlarged ventricles, a brain tumor and hydrocephalus at 34 yrs old!

This is NF Awareness Month. Let's get the word out about this very serious, yet way under talked about disorder!

Neurofibromatosis 1

The most common features of neurofibromatosis are the skin lesions called cafe au lait spots. These are flat, smooth, medium to light brown irregularly shaped spots than can occur anywhere on the skin. Many people have one or two cafe au lait spots, and these are often called birth marks. If a child has six or more cafe au lait spots measuring at least half a centimeter (about a 1/4 of an inch), then he or she should be monitored carefully to see if he or she develops any more signs of neurofibromatosis. A second skin symptom is freckling that appears in places not usually exposed to the sun like the armpit and groin.

After the age of three, many children will develop Lisch nodules in their irises (the colored part of the eye). These can be detected by an ophthalmologist using a special piece of equipment called a slit lamp. These growths do not affect vision.

Another symptom of the disease is the development of neurofibromas, soft fleshy tumors just under the skin. Neurofibromas can also develop deeper in the body. A neurofibroma can be large and have many finger-like projections, called a plexiform neurofibromas.

Most people with neurofibromatosis do not develop neurofibromas until puberty. Because neurofibromas can occur anywhere in the body, there are many possible complications from them. Sometimes these tumors can become malignant (cancerous) or they can affect vital organs. One complication is the development of a tumor, called an optic glioma, along the nerve going to the eye that can lead to blindness, unlike the Lisch nodule. A person can have a neurofibroma without having neurofibromatosis. Many neurofibromas, however, are indicative of neurofibromatosis.

Deformities of the bone are also associated with neurofibromatosis. For example, children can develop curvature of the spine (scoliosis) or an enlargement of a bone in the arms or legs leading to a leg length discrepancy. Other bony defects can be bowed legs and thinning or absence of the bones forming the eye socket. A large head is also sometimes associated with neurofibromatosis.

Approximately half the people with neurofibromatosis have learning disabilities, including attention deficit disorder (ADD), ranging from mild to severe. Learning disabilities are about five times more common in people with neurofibromatosis than in those without the disease.

Neurofibromatosis Type 2

In Neurofibromatosis Type 2, there are not as many physical signs of the disease. People with Neurofibromatosis Type 2 do not have multiple café au lait spots, Lisch nodules, or bony deformities. They may have a few café au lait spots, however. People with Neurofibromatosis Type 2 have a kind of tumor called a neuroma or schwannoma. These tumors affect the nerves that are responsible for hearing and balance. The first sign of the disease is often ringing in the ears (tinnitus), hearing loss, or difficulty with balance when a person is in her teens or twenties. Although only one ear may be affected initally, eventually both ears will be affected in most people. About 90 percent of people with Neurofibromatosis Type 2 will develop these tumors in their lifetimes. These tumors can occur anywhere in the body.

In addition to schwannomas, patients with Neurofibromatosis Type 2 are at risk for other types of tumors, called gliomas and meningiomas, that are found in the brain. These tumors are usually not cancerous in that they are not likely to spread to other parts of the body, but they can cause significant problems depending on where they are located. People with Neurofibromatosis Type 2 are also at risk for a particular kind of cataract that makes vision cloudy or dim.

Please---If YOU or someone you love is affected by Neurofibromatosis, talk about it! The best way you can help, is to spread the word! Knowledge is power.....

Kristi--Always here, always fighting for treatment/cure!

IEP's and Tongue Twisters

Turn-it-Around-Tuesda

y

How Much Wood Could A Wood Chuck Chuck, if a Wood Chuck Could Chuck Wood?

Good Question...I honestly don't really care. But sitting in the the small group, at Braden's IEP meeting yesterday, I began to wonder how bright our supposed "leaders" really are.

Do people really ponder questions like a wood chuck chucking wood, then make up a funny rhyme about it?

Anyways....Sometimes at these IEP meetings I have no choice, but to 'zone out', because they can get overwhelmingly exhausting.

As we were discussing the modifications of behavior and social skills part of the IEP, Neurofibromatosis came up in the discussion.

We had talked about our 'condition' at the beginning of the year and I even gave each of the teachers a wonderful print-out provided by The Children's Tumor Foundation, that explained the 'NF child' in a very descriptive, beautiful way. (thank you CTF for this) But it seems this print-out got lost, and the teacher just wanted to ask ME, the mom, some personal questions about how NF impacts Braden's life. (I was thinking "hmm this meeting is supposed to be 45 minutes...The ins and outs of my son and the way NF is a part of that would never be explained in 45 minutes! Like a spider's web....delicate and complex").

The teacher's began to joke about Neuro-Fibro-ma-tosis, in a light hearted, very unoffensive way. In fact, I kind laughed inside of myself at their ignorance. "Wow, that's such a long word and hard to say." One teacher said. Another said, "Yeah, kinda like a tongue twister, try saying it 3-times fast!" "Neurofibromatosis----Neuro--fibro--moy....ohhh DARN.....That's sooo hard to say!!!", the teacher said. And me, being me, finally gets to say the response I have been waiting for ....since I began blogging (and Thriving)........ "Think it's hard to say? Try Living with it!"

The room feel silent. The playfulness was over. How does NEUROFIBROMATOSIS impact Braden's Life ? Let me sum it up for you. It makes him stronger (not weaker), He learns different than other children, so help teach him, he loves different than other children, but still needs the same encouragement, he is soft spoken, so listen better, he may need to be told over and over to do something...but eventually--He'll get it, so praise him!

NF impacts our lives in so many ways, but only negatively, if we allow it. We have chosen, as a family to keep as much bad out....and to seal in as much good as we can. We focus on the good times, the happy times, because we know, there will be plenty of bad.

We are constantly "turning it around"...and finding something good....Because in life that's what you need to do. If you focus on the bad---that's all you will get.

Whacky Wednesday

My daughter looked at me the other day, after I mentioned being a little scared for my trip to NIH. "Aren't you a little old to be scared of doctors?" she asked. I rolled my eyes at her and drew her near to me. "You can be too old for a lot of things, but you are never too old to be afraid." (quoting one of our favorite holiday movies 'Home Alone')

My inquisitive little 9 yr old daughter began asking questions about why I was going to a hospital "ALL the way on the other side of the planet"...

She knows about Neurofibromatosis, at least she knows her mommy and 2 sisters and brother have it...But I thought I would take this opportunity to teach her a little about the disorder. (I mean hey, that's what we are all trying to do here, right? And you never know, she may just grow up and be the person to discover a real cure for NF)

So I went to the handy dandy Netbook, and typed in WWW.CTF.ORG ( I love this site ) and read to her the definition of Neurofibromatosis. I was amazed at her understanding and praised her for wanting to know more about this lifelong disorder.

As I was talking to her about the tumors that mommy has (glomus tumors) I told her that they cause mommy a lot of pain. "The drs here don't know much about NF, honey so I'm going to a place that knows ALL about it."

"I thought Drs were supposed to know everything though...why don't the ones here know how to help you...?" LOL My reply to that question could go on forever....but, I simply stated that there are soooo many illnesses, and diseases out there and not enough doctors. Which is true.

"How do we get more doctors to know about NF Mommy?" (Dang this girl is smart!) I hugged her and told her, "We just keep fighting, keep talking, and we don't hide from what scares us." She just looked at me and said something that melted my heart...."You're the bravest mommy I know, I will miss you when you are gone."

Another person educated about Neurofibromatosis.....will you take the time today to teach someone about it?