Monday, September 26, 2011

Assert Yourself!

I don't consider myself a very assertive person.  For most of my life, I have let people walk all over me.  Family members, friends, co-workers, doctors... heck, even my husband.  

It's HARD to stand up for yourself....Especially when you aren't confident with what you have to say.

I remember one doctor visit a few years ago, when I was talking about my hydrocephalus and possible shunt surgery.  I'll put it bluntly...The Dr. was a jerk.  She had wall around her a mile high and didn't seem to care one bit about my pain and suffering.

I was dismissed without any answers.  No solutions for my headaches, and surgery was simply "Too risky and not an option."  A quick "See you in a year"....and I walked out feeling WORSE than when I walked in.

So how do you get doctors to listen...REALLY listen to you?  Yes... there are rules to this, and if you follow them, I promise, you will have a great doctors visit!

First....Be specific. Instead of just complaining about your pain, describe it!  "The pain in my fingertips has been going on since 2009, and it REALLY hurts when...."  or "My headaches have been worse since 2008, and no over the counter medications seem to help."  The MORE specific you are, the better the outcome will be.

Doctors have a specific time allotted for each patient scheduled...But that does NOT mean that your time has to be cut short.  

Do NOT accept ..."See ya in a year." answers. 

Next...Keep it short. Bringing in 10 pages of your medical records is not helpful. No doctor can’t get through that in 10 minutes.  Going to the doctor, with a list of symptoms would be like taking a child to a candy store and telling them to pick their favorite candy, in 3 seconds....IMPOSSIBLE!

Try scheduling a few appointments, to talk about specific issues.  For example; I scheduled 3 appointments for myself in one month, with the same doctor.  1-to talk about tumor-related leg pain, 2- to go over the results from my thyroid ultrasound and 3- to refill important medication, and talk about side affects.

It can be overwhelming to have that many doctor visits, but trust me, you'll get a more positive and thorough result!

Know your family history, especially when it comes to genetic disorders.   Most doctors want to know  if what you are experiencing, can be tracked back to another family member.  A simple "family tree" of health related issues, can be a HUGE time saver, and I suggest you map one out, BEFORE your appointment.

Ask for what you want. “If you’re assertive and say, ‘I want to be checked for this, this, and this,’ without sounding too hypochondria-ish, doctors have an obligation to do so.  I went into the doctors stating the fact that my headaches aren't cured by simply Tylenol.  I asked for specific medication that was recommended by another doctor, and I got a prescription for it.  Know yourself...Know your needs...and present those needs confidently!  Which brings me to.....

  Don’t apologize. Think of your appointment as a business transaction!  I'm serious.  Doctors are paid to listen to everything you say.   None of this..."I'm sorry to bother you doctor" or "Do you think I should...."  That kind of talk will get you nowhere!

Understand what comes next.   Ask four questions after every appointment: What do you think of my  symptoms?  Are you ordering any lab tests? Why? And when should I expect to hear from you about the results?  Ask for any referrals or any other important information that you will need.

And last but not least...

Switch doctors (if you must). Don’t wait. Get someone new who really hears you.  It took me 33 yrs before a doctor recognized my Neurofibromatosis.  That's FAR FAR too long!  If your needs are not being met, find a doctor that will take the time to get to know you.  

I know for some, this isn't an easy process....But nothing worth having is ever "easy".  YOU are in charge of you...and no one will do it for you....

Present your new THRIVING attitude to the world, and you'll be amazed at what you get back!

Thrive On

Thursday, September 22, 2011

There With Care!

Early last school year, my daughter Riley, gave a quick presentation in front of her 4th grade classroom. She told the story of our family, and how her older sister Bailey was diagnosed with a brain tumor, that required chemotherapy.  Riley also briefly explained what Neurofibromatosis was...and how the disorder affected others in her family.

A few days later, Riley's teacher caught up with me on the playground of the school.  She quietly asked me questions about NF; what it is exactly, can it be cured, what treatments are available, why chemotherapy etc.  She then asked me if I had ever heard of a company called 'There with Care'....

When she explained what this company was, and what they do for people...I honestly blew it off.  I thought..."We aren't one of those families."  The teacher gave me a pamphlet, and told me that I should really look into signing up.

Over the next few months, we got word that Bailey's tumor had DOUBLED in size, despite weekly chemotherapy treatments.  A change in chemo, and countless complications from doing that followed.

One day, I was cleaning up around the desk, and the pamphlet the teacher gave to me months before fell to the ground.  I went to my computer and typed in the website  and began reading.  Countless stories of children and families dealing with cancers, or other life altering illnesses, filled my heart with so much sorrow.

As I continued reading, I realized that, we ARE one of those families.

Hospital stays, blood draws, port access, fevers, nausea/vomiting, hair loss, weight loss....We were dealing with something very serious, that not only affected Bailey, but the ENTIRE family as well.  So I began a letter to MaryBeth, the program coordinator.

A wonderful e-mail returned asking me for more details about our family and her offer of different things that could help our family.  Hesitant to accept, but graciously appreciative, I told MaryBeth I would call her about the offer she gave to our family.

Two days later SHE called me to check on our family.  I was emotional and stressed and she gently pressed me to tell her what was happening....I told her about our van not starting, and the mess of complications Bailey was experiencing from the chemotherapy.  She offered a quick fix for our van and told me she signed us up for a delivery of pre-made meals.

There with Care has truly been THERE with CARE.  A few days ago we saw yet another reason this company exists.   Our 2nd car, died...The fuel pump went out, and left Rich stranded a few miles away from home.  A gracious 'good samaritan' helped push the car to a parking lot and a friend drove Rich home... Then the worry about HOW we were going to get the car fixed followed.

There with Care came to the rescue.  They towed the car and delivered it to Wolf's Auto Care in Boulder. This auto place donates their time and experience to There with Care to help families who don't have many connections or options.

The car we take to and from chemotherapy was fixed within hours and given back to us.  I was so impressed with how quickly and wonderfully the issue was dealt with.

There with Care gives without asking anything in return.  They help because they see a need.  They give because they know it makes a difference.

Our family would like to show its heartfelt appreciation to this company for everything they have done!  You have helped us see that when help is needed, there are "Super Heroes" that come just in time!

This organization would not exist without donations and support from various contributors...So I would like to thank them too!  If you would like to donate in any way, please go to 

Thrive On!

Wednesday, September 21, 2011

Starlight Foundation!

Last Night, our entire family was invited to our very first 'Great Escapes' event, held by the Starlight Foundation of Colorado.  It was AMAZING!

We were greeted by a wonderful group of volunteers who welcomed us with so much love, and handed us bracelets that got us into ALL the events held at Boondocks Fun Center.  Pizza and drinks were provided as well as a back pack filled with school supplies, for EACH of my kiddos.

We had a blast...An all expense paid "ESCAPE", was just what our family needed...And we soaked up every minute of our night out!

These are the times to hang onto...The times when worry is miles and miles away.  Where chemotherapy treatments, MRI's, blood draw and endless doctor visits are the farthest thing from our minds.

Our family has been blessed by so many wonderful people...who have created AMAZING circumstances.  This is what LIVING and THRIVING is all about!  Giving...Receiving.  And graciously appreciating all that we experience.

Hang on to the good...And give good to the world, you'll be amazed at what it can do!

Thank you StarLight Foundation, for our "Great Escape"...And helping to create memories to hang onto!

The Hopkins/Archer Family!

Saturday, September 17, 2011

MRI News

Braden has Neurofibromatosis type 1.  His first MRI scan was in 2009 and the findings of that, were very typical of someone with NF: bright spots (UBO's), abnormal ventricles and "areas to watch")

We really didn't concern ourselves too much and did as we were told..."Watch and Wait and scan in a year."

So in December 2010, we went in for our "yearly MRI" and when the phone rang, before we even got home from the MRI, I knew something was wrong.

The MRI tech was confused when he compared the last scan to the one just taken...and asked me to come back in to re-scan him.

We had JUST gotten home, from a LONG....Sedated MRI, I was not about to turn around and bring my son in, to be re-sedated, and re-scanned.

Turned out, that Braden had a brand new Optic Glioma, on his left optic nerve, and several pelixform neurofibromas growing throughout his spinal cord.

It is VERY unusual for someone with Neurofibromatosis, to have new findings of an Optic Nerve Tumor, after they turn 8 years old....In fact, MOST doctors won't even scan an NF1 child, if they have had a previous "normal" scan, and have no obvious signs of issues.

But there it was.

A race to the Neuro-Ophthalmologist, for a complete vision screening was scheduled, as well as a meeting with the NeuroOncology team at the Children's Hospital.

After the vision screening came out "normal"...The meeting with the doctors, went as I expected..."Let's keep an eye on things...and scan Braden in 6 months."

So, we did as we were told...And Tuesday Braden had his 6 month follow-up MRI

Braden spent 3 1/2 hours in the tube as his brain and spinal cord were scanned.  The results showed growth of both the Optic Glioma and plexiforms...But as most of you with Neurofibromatosis knows....This does not necessarily mean anything.

As the doctors examined Braden and xrays were taken, it was also noted that Braden's scoliosis has gotten worse.

Physical therapy will be started in October, to help with strength and flexibly.

It's easy to become overwhelmed with all that is happening with our family, and this is why I stay very 'in the moment'.  I enjoy the small things in life, and try (sometimes fail) at letting go of the things that the things I cannot control.

Thursday, September 15, 2011

Say What!?

Have you ever said something, that you wish you could take back?  Put words out there that were insensitive, or just downright mean?

I have this neighbor, who approaches me, every few months, to try to sell me on her "special oils", that she tells me have cured, even the most aggressive of cancers.  "If you would just buy a few of my oils, I know your daughter's brain tumor would go away." she tells me.

Really?  Gee...If your oils cured cancer, then why the heck aren't you a bazillionaire, living in some mansion?  If your oils cured cancer...why isn't there a line around the block, ready to purchase your product?

The thing that people don't realize, is that Bailey doesn't have cancer.  She has a brain tumor, caused by Neurofibromatosis.  No oils, or special food, is going to take it away.  The only way to "cure" Bailey's NF, would be to have caught it before it reached her chromosomes....meaning, at conception.

But in saying that, it doesn't take away the fact that Bailey's brain tumor is very serious.  It's in a spot, where even taking a biopsy is considered too risky.  A spot that if it grows much more it could have a significant affect on her cognitive skills and personality.

My neighbor told me a few weeks ago, that I must not truly want Bailey "cured", because I have chosen to not purchase her oils.  *Hold me back*  I couldn't believe it!  I tried to explain to this woman, that her oils could not cure Neurofibromatosis...and she kept insisting they would.

I asked her, if she had any oils to cure down syndrome....or muscular dystrophy.  Her answer..."No, of course not."  She seems to think that NF is some kind of infection, and all I need to do, is rub some cream or oils on my skin and I will be "fixed"...Then maybe, just maybe, I'll live up to her idea of perfection.

I know that most people just want to help...They want to provide some "fix" for Neurofibromatosis....But what I would love, would be for people to stop trying to fix us.  We aren't broken...We aren't diseased ridden...We are wonderfully made, in the eyes of God.

Tuesday, September 13, 2011

Neuropsych Testing and Neurofibromatosis

Neuropsychological testing is an evaluation of a child's mood, behavior, personality, cognitive ability and over-all IQ.  The testing takes 6-8 hours and is performed by a licensed clinical Neuropsychotherapist.  Lucky for us, our doctor also specializes in children with Neurofibromatosis.

The testing includes various aspects of attention, memory, speed of information processing, language, visuospatial ability, sensory processing, motor ability, higher-order executive functioning, and intelligence.

Anyone with a Neurological disorder, or any type of brain injury should have this kind of testing done, not only to provide vital information to care givers and teachers, but also to provide parents with an understanding about how their child learns, so that they can find proper resources, as the child grows.

Common Questions

*Why should my child have a Neuropsych test done?
An accurate, scientifically based evaluation leads to personalized and more effective treatment, rehabilitation and life adjustments.  The test provides vital information about how your child learns...This information can be passed on to educators, who then can make school, a much more positive experience.

*Does Insurance cover this type of testing?
Typically yes.  Depending on your coverage and plan.

*How do I get the results of this test?
A few days after the test is performed, you will meet with the doctor, who will go over the test.  Your child, typically does not need to attend this meeting.  Any questions you have about the test, or specific questions about your child will be answered at this time.  Further testing, and/or treatments may be recommended. You will also receive a printed version of the test, in the mail about a week after your meeting.  Keep this in a safe place and make copies for your child's school.  You can request an IEP meeting, to go over the test with your child's teachers.

The results of this test can be quite overwhelming...So be sure to ask the doctor any questions you may have.  It may also be a good idea to prepare questions ahead of time, and bring a notebook, to jot down the answers to those questions.

Based on the results of our child's testing, here are some of the questions we had, for our doctor:

*What does the "overall IQ score" mean?
*What kind of future can we expect?
*Based on these results, what kind of job skills or training will be needed?
*How can we get the school, to help with the specific way our child learns?
*What types of rehab/therapy are available?

No matter what the results say, remember that, every single child is unique and special.  The results only define the way your child learns and how they process information. Low IQ scores, does not mean your child isnt smart...It just means your child learns, in a very specific way and the test results will help guide your child to the right kind of therapies and treatment...and is an essential part in finding ways to personalize their education.

If you have any specific questions, please feel free to contact me, or just comment below.

Monday, September 12, 2011

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!