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!

<3
The Hopkins/Archer Family!

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.

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.

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.

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!