Tuesday, June 26, 2012

NF Brain

I have heard it before...MANY times actually, "Your child has a very typical NF Brain."  The first time I heard this, I actually felt offended. This was mostly because I had no idea what this statement meant...AND I had doctors in my life, that failed miserable at explaining it.

In short "NF Brain" means the findings in the MRI were "normal" for those living with Neurofibromatosis.  Normal is the word you need to focus on.

People with NF have all kinds of "normal"  things that can appear in the brain...

* “Unidentified bright objects” (UBOs)  Have been noted in 93% of children and adults with NF1
Basically these have been explained to me as being "birth marks" in the brain.  They are                      harmless and do not need special care or monitoring.  
Some of the UBO's noted in previous MRI's for my children with NF1 have actually "disappeared".

*OPTIC PATHWAY "abnormalities"  This is NOT to be confused with Optic Pathway Tumors (which affect about 20% of children with NF1)   Out of my 3 children who have NF1, One has an Optic Glioma....The other 2 have other issues.  

Braden's Optic Glioma was diagnosed when he was 13 yrs old.  This tumor, does not affect his vision and is being monitored.

Rachel's "NF Brain" showed Optic Pathway narrowing and DOES seem to affect her vision.  The Drs call Rachel's issue as "hypoplasia"....Which is basically an underdevelopment of the pathways.  Drs. tell me this is a "normal NF Brain" finding.

And..."abnormalities" does NOT necessarily mean something is WRONG....Abnormal just means that compared to someone WITHOUT NF, the finding was...different.

*Gliomas  The most common are gliomas in different portions of the brain, including the brain stem, and the cerebral cortex (the area of the brain in charge of language and information processing).   The treatment depends on the location of the tumor, how fast it is growing, and what symptoms it is causing. In MOST cases, observation alone is the appropriate first treatment. In other cases, removing the tumor through surgery.

I personally am living with a Glioma, requiring monitoring, but no treatment.

*Enlarged Ventricles  / Underdeveloped ventricles  I have enlarged ventricles, which I was told by 3 Neurosurgeons was VERY TYPICAL for people with NF1.  

Rachel, who is 9yrs old has underdeveloped ventricles.

All of these "normal" findings lead up to A LOT of complications for those living with Neurofibromatosis....The most common are:

Neurological problems. Learning difficulties occur in up to 60 percent of NF1 cases and are the most common neurological problem associated with NF1. Uncommon neurological complications associated with NF1 include epilepsy, stroke and buildup of excess fluid in the brain (hydrocephalus).

Visual difficulties. Occasionally in children, the optic pathway tumors cause vision loss.

 Always ALWAYS ask questions about the MRI findings.  There is no question that is too "stupid" to ask.  If the Dr. is using a bunch of medical terms that you do not understand...ASK HIM to slow down and to explain the findings in a way you CAN understand.

All too often Drs get away with spewing off a bunch of medical gibberish -- leaving the patient not only feeling overwhelmed, but also very confused.  It is very important that you leave your appointment feeling confident that you understand your results.

"Normal"  "Abnormal"...It's all relative, isn't it?


Sunday, June 24, 2012

Kristi Can't Handle the Tooth.

Hi, this is Rich - Kristi's husband. I have pirated Thriving with NF today because Kristi is in pain, needs help, but frankly, doesn't want to ask.
In late 2010, she had a root canal started, which ran up a bill of $800 that, with the issues that came up with Bailey just weeks afterwards, we were never able to pay. She has been living in pain with a temporary filling since that time. Now that filling has fallen out, leaving her in excruciating pain, without any way to pay for the rest of the dental work.

Her dentist won't finish the work until we pay the $800 in collections, and come up with an additional $800 - won't even accept payments at this point. Even with occasional bracelet and book sales, we rarely make our budget each month (and I understand it's a struggle for most of Kristi's readers as well -
we're not whining, just stating the facts for those that think Kristi gets wealthy off these products). Coming up with $1600 isn't an easy thing to do in this world of SSI, medical issues, and overall economy, as most of you know. A few dollars from a few friends is the only solution I've been able to come up with to solve this problem before Kristi's pain becomes completely unbearable, and potentially turns into an infection, leading to even more drastic medical issues. 

My hope is to raise $1600
this week to get Kristi out of pain as soon as the first week of July. That's 160 people giving $10 to her cause. In return, Kristi is preparing to record her book, Thriving with Neurofibromatosis as an audiobook (no fancy studios, just her, her computer microphone, and me editing on my computer), and I'm going to offer everyone who donates at least $5 a free copy of the audiobook when it is complete, no later than August 31st. 

Kristi feels like crap right now
- she knows I'm doing this, and she feels awful about asking you to help her. So do I, frankly, but I feel worse about watching her in pain, knowing I simply can't come up with the money right now with the tenuous medical situation Bailey (not to mention Rachel and Braden) are in, so I'm sucking it up and humbly asking anyway.

Kristi is still Thriving in heart, but Thriving doesn't always mean life is perfect, or that the bank account is full.

Will you help?
Hit the donate button below:
and help Kristi get this taken care of once and for all. We're capping donations at $1600 - and I'll keep people up-to-date, and make sure we get pics of her at the dentist when this is all said and done.

Thank you for whatever help you can give - if not in dollars, in positive thoughts and prayer - Kris needs it all at the moment - and knows you do as well.
Keep Thriving.


Thursday, June 21, 2012


"Close your eyes...Hold VERY still, and dream a fantastic dream!" 

This has been the LONGEST week in history, I am SURE of it!  When we got the Rachel news, that her eye site had changed "dramatically" since her last visit...It was like we were holding our breath, waiting for the next step.

I KNEW an MRI was going to be ordered (a VERY normal thing when you live with Neurofibromatosis) But the waiting and waiting and WAITING had cut my fuse VERY short.  All the "i's" must be dotted, all the "t's" must be crossed. (of course, I get it)

Thursday couldn't get here soon enough....I just wanted the MRI to be over with, results to come in and for us to do SOMETHING.

Rachel was SOOOOO excited for her MRI.  Alone time with mommy, a special treat after...and in HER words, an opportunity to be like Alice in Wonderland! ( I told Rachel she was like Alice, when she did her very first unsedated MRI...and it stuck )

I've learned a LOT from my kids, when it comes to living in the NOW....They have taught me to focus on the good, and worry about the bad, when or if it comes.

The MRI results MAY show nothing....or they MAY show something...What I focused on today, was that my little girl wasn't worried at all....And I took HER lead!

Therefore do not worry about tomorrow, for tomorrow will worry about itself. 
Each day has enough trouble of its own.
Matthew 6:34


Thursday, June 14, 2012

Camp WapiYapi

Wapiyapi is a Colorado based nonprofit organization that offers a community of hope and support to families affected by childhood cancer. Wapiyapi hosts free summer camps and year-round family retreats to provide a respite for children with cancer and their families. 

Yes...We "qualified" for a "cancer camp".....This made me both excited and uncomfortable as the kids prepared for their week long stay in Estes Park, Colorado.  But when we got there...I saw anything but a "Cancer Camp."  

I saw happiness, joy, hope,  and acceptance, all wrapped up in a wonderful place called WapiYapi. 

Riley and Lauren (camper companion)

I was good and did not contact the kids at all, while they were gone...And when I picked them up, the two could not stop talking about the endless fun they had that week.

Riley was in tears...When she reminisced about the last 5 days....
"I had sooo much fun...I never wanted to leave!"

 This chipmunk climbed up onto Bailey's lap...Just for a snack!  Brave lil thing!

Summer Swimming!

I love Summer days, when the hustle and bustle slows down enough for us to go to the pool.  The pool is where EVERYONE feels good...and the pain, nausea, frustrations, and anger all just melt away!

 Brookie even learned some swimming!

Riley looking adorable!

The other kids were busy swimming around, avoiding my camera...LOL

Tuesday, June 12, 2012

When Things Go Wrong, As They Sometimes Will.....

Today we drove to the Children's Hospital for the 3rd time this week. (Is it REALLY only Tuesday?)

 Today's visit was for Rachel, and a check-up with the Ophthalmology department.  My frustrated mood from the morning, plummeted even further when I watched as Rachel was unable to read the letters that reflected on the wall 10 feet away.

She tried so hard.  Squinting...and squirming in the over-sized chair.  She started reciting letters.  

E?---F?---S?---L?...But those weren't the letters on the wall.  Another set of letters.  "You're doing great Rachel!" the Dr. turns her swivel chair towards my brave girl  (who seems to think she guessed all the letters on the wall right!  And a sneaky sense of "wow-ment" fills her eyes)

The Dr. walks her swivel chair close to me and asks me if Rachel could be overly tired today.  "No...I don't think so." I responded....In my head I was thinking that I just wanted to tell her "YES!", in hopes of giving a reason for the sudden decline in Rachel's vision.

But THAT reason would be too simple.

The doctor told me that Rachel's eye exam has left them stumped.  In the Winter of 2009, we were told that Rachel would be "legally blind" by the time she was 10.....A year later, we got THIS NEWS .  An amazing and wonderful thing for our family to hear.

The scans since have shown "stability"!  
A simple word...But one that causes joyous excitement in our world.

But today...We didn't hear "stable".  
We heard our doctor tell us that Rachel's vision has worsened since the last visit. 
This visit was like witnessing a car wreck...And I felt that helpless feeling that is all-too-familiar.

I wanted to scream.  I wanted to fight against the reality that Rachel may face blindness one day.  There is no "jaws of life" that can free us from this possibility...And as angry and helpless this makes me...I have to remember who is control of this situation.

Rachel tells me as we skip down the hall, after the appointment ..."Did you know that people can see things with their hearts?"  "How do you know?" I ask her...."'Cuz Mama, when I close my eyes and it's all black....I can still see how much you love me!"

My God.  
How can I possibly be angry?  How can I question?  How can I ever doubt?


Monday, June 4, 2012

Let the Summer Begin!

Summer is off to a GREAT start!  Yesterday Rich and I drove a couple hours north to drop Bailey and Riley off at camp...The whole way there, the girls told us how excited they were to be going to camp.

I am excited too!

When we got to the camp grounds, I immediately thought of MY first time at camp.  The layout of the cabins was very similar to that of Camp Rainbow...and I began wishing I could just stay with my girls and relive some of my memories.

Like Camp Rainbow, Camp Wapi Yapi is for kids going through cancer treatment....and their siblings.  Just the fact that Bailey qualified for this camp made my stomach turn.  But, as a family we chose not to focus on WHY Bailey was going...And simply chose to focus on the fun she was going to have while she was there!

The girls said their goodbye's ...Pushing me to "GO ALREADY!" and hinted for me to stop embarrassing them with my sappy hugs and kisses. :)

We were a few minutes away from a famous building that I have soooo wanted to see, since we moved to Colorado, so Rich full filled a 'bucket list' item and drove me to the Stanley Hotel.  The hotel that was featured in the Stephen King movie 'The Shining'.

I learned that this was where Stephen King got the idea for the book...And also learned that the movie wasn't filmed exclusively there....A different hotel was used for the inside shooting of the movie...But it was still way cool to visit this place!

So with Bailey and Riley gone to camp, this gives ALL OF US a break from the worry of chemo, MRI's and the dread of waiting for the next round possible bad news.  A time where fear takes a backseat...And Swimming, slip and slides, and popsicles drive us to a place of happiness.

The worry is there...and whirls around me all the time....But summertime is here and allows for a break in the worry, as I watch the smiles on my children's faces.

Thrive On!