Brenna's Story

Brenna's Story:

In April 2013 Brenna limped off the school bus with a swollen knee. We figured it would get better quickly with lots of TLC and a little Advil. A visit to the clinic said to give it two weeks. In Mid May 2013, the knee was still so stiff and swollen we had to carry Brenna as it was too painful for her to walk. Another visit to the clinic, and an MRI found excessive fluid on her knee. In June 2013 Brenna had an aspiration of the knee and the fluid was sent for biopsy. The suspect was Juvenile Rheumatoid Arthritis, or JRA. In July 2013 we met with a pediatric rheumatologist at the Mayo Clinic where her diagnosis of JRA was confirmed; specifically, polyarticular JRA, meaning arthritis in at least four different joints. Brenna has inflammation in her toes, ankles, knees, hips, wrists, and fingers. We also learned she has Uveitis, an inflammation of the cornea. Since the diagnosis, we have battled painful flares and stiffness in our 6 year old daughter, plus almost monthly 800 mile round trip treks to the Mayo Clinic in an effort to find a medication that can stabilize her symptoms. JRA impacts Brenna’s mobility. At times it makes movement painful. Sometimes we have to carry her. It causes her to miss school quite often. It even makes simple tasks like writing very difficult.

Tuesday, September 30, 2014

Koo Koo Kanga Roo Dance Party!


Its official!  Koo Koo Kanga Roo is coming to Thief River Falls!  They will be here for a DANCE PARTY on Tuesday, October 28, 2014 at Challenger Elementary School Gymnasium.   The cost is $5 in advance and $8 at the door.  Tickets are available at Hugo's in Thief River Falls.  

I saw these guys perform last summer at the Juvenile Arthritis Conference in Keystone, CO and all I can say is, "WOW!"  Their shows feature high energy dancing, lots of sweating, and the occasional parachute.  You don't want to miss this concert.  

And did I mention that all of the proceeds from this concert will go to the Arthritis Foundation?

Here are some links to their videos-  They are outrageously hilarious and over-the-top fun!

Cat Party



Dinosaur Stomp



Awesome Rainbows


Bestest Friend


Fanny Pack



Ninja Training



Unicorns R Real


Wiggle It!




and here is a link to a playlist of their videos!  Enjoy!  See you at the concert!

Wednesday, September 17, 2014

A tough start to the school year...

Juvenile Rheumatoid Arthritis is one of those diseases where it just seems you never know what's next or when a flare up may happen.  Sometimes a flare up will hit and disguise itself.  That happened to Brenna a few days ago.

School started here a few days ago and, like most families, we were busy getting the kids ready for their first day.  We had been to open house and Brenna met her new teacher.  Of course, "new" didn't mean Brenna had not previously known her teacher.  Several of Brenna's older siblings have had the same teacher and Brenna has known her personally for years.

All the same the first day of school came and Brenna, uncharacteristically, appeared"nervous" and had an upset stomach.  She vomited several times from what we thought was anxiety so we kept her home to rest.  She proceeded to have an upset stomach most of the day and went to bed early. The next morning she woke up and the upset stomach was gone, however, it was replaced by a rash and severely swollen joints.  Toes?  Check.  Ankles?  Check.  Knees?  Check.  Hips?  Check.  Fingers?  Check.  Even Elbows.  And, they were all hot to the touch.  She added, "Daddy, they feel all hot inside."

It seems she started to flare but it presented in a new way so we didn't notice.  By the next morning it was obvious.  We took her to urgent care where they found she had some sort of infection which seems to have made her joints act up.  Her temperature was normal, but every joint and surrounding area was swollen, red, and sore.  Even the pads of her feet.  She didn't want to move.  It was heart breaking to watch.  Two days into the school year, she had not been there yet.

Back to the doctor visit.  Of course, to diagnose the infection she had to draw blood.  Most 6 year olds are scared of needles and Brenna is no exception.  Scared to death would be an understatement.  We were lucky because instead of using a needle, the lab tech only had to do a finger prick.  That is, instead of 2 nurses, Jodi, and I pinning her down for a blood draw, it only took Jodi and I to restrain her for a finger prick. By restrain, I mean bear hug her on my lap while we held her arms and legs in place so she wouldn't frantically kick or flail her way out of the room.  Sadly for Brenna, blood draws are quite common for JRA patients.  We go through this every time she has lab work.  Its the only way to check inflammatory markers, etc. This sweet little 6 year old girl gets to have a panic attack, shriek at the top of her lungs in mortal fear, and wonder why her family members have to hold her down for all this.  It makes me tear up thinking about it, and for those of you wondering, I am typing this with tearful and dripping eyes.

Seriously, friends, this awful disease, JRA, affects 300,000 kids in the USA only and all forms of arthritis affect of 50 million (yes, MILLION) Americans!  We have to end this!  No one, let alone kids, should need to go through this!  Please do what you can to help end this disease's reign on terror in our kids.  Learn more about it at Kids Get Arthritis, Too! and please, donate to Brenna's Jingle Bell Team where all the money raised goes to find a cure to Arthritis.  Please donate or join Brenna's team here!

We left the clinic with a very sullen 6 year old.  The bright spot came trying to cheer her up.  Nurse Deb gave her a stuffed bear with a band aid on it-  just like she had on her finger.  Thank you, Deb!  You stopped her tears.

"Do you want some ice cream?"  we asked her.  Thank you, Dairy Queen, for having the Double Fudge Cookie Dough Blizzard on your menu.  It brought a smile back to her face.

Tuesday, August 26, 2014

Garage and Bake Sale!



This last weekend our Jingle Bell Team got together and held a garage and bake sale.  Our three stall garage was plump full of shoes, clothes, furniture, and lots of household goodies.  In addition, Brenna, her mother, and sisters made many different yummy treats for a bake sale.  They made S'mores-on-a-stick, Rice-Krispies-on-a-stick, Fruity-Pebbles-on-a-stick, chocolate/ butterscotch cookies, and chocolate/ peanut butter cookies!  Brenna and Allanah were super-salesgirls, too!  Of course, the treats went fast and we even had facebook requests to deliver in town!  The best part of the sale was that we raised several hundred dollars for the Arthritis Foundation!  Thank you for your support, Thief River Falls!













Saturday, August 16, 2014

Meeting with US Rep Colin Peterson (MN-7)

Recently Brenna met with our US Representative, Colin Peterson (MN-7) in Thief River Falls.  She was able to share her JRA story and how it affects her day to day life.  Rep. Peterson spent a half hour listening and learning.  He was very interested in her story and compelled to help.  Based on our prior conversations and this meeting, he confirmed for Brenna that he had joined the Arthritis Caucus and co-sponsored H.R. 460, The Patients' Access To Treatments Act.  This bill in essence ends health plans from putting drugs into a "specialty tier" where copays are often 33%-50%.  Instead, they must be treated like any other brand or generic drug.  This would make medications, therefore treatments, much more affordable to anyone on a "specialty" drug.  Thank you Representative Peterson, for taking the time to listen to Brenna!  We appreciate your support and hard work to help your constituents!  A copy of Rep. Peterson's newsletter discussing his meeting with Brenna can be found here.


Tuesday, July 29, 2014

2014 Jingle Bell Run/ Walk in Fargo, ND






 Well, its official!  Brenna is registered to walk in the 2014 Jingle Bell Run/ Walk in Fargo, ND.  This will be her 2nd Jingle Bell and she is super excited.  The Jingle Bell helps create awareness and raise funds to find a cure for Arthritis.  This year Brenna is hoping have a huge team.  Will you join in?  You can register here.  For those of you that can't literally join us in Fargo in December, have no worries!  You can join us "virtually" and enjoy the Fargo Jingle Bell from home in comfort of your pajamas!  Lets Walk and Run together to find a cure.  Or, if you prefer, you can make a donation to Brenna's page here.