Friday, February 28, 2014

Favorite Fridays~Mt. Horeb, Relay for Life

The last weekend in July in Mt. Horeb is one of the best weekends of the year...It's Relay for Life, a fundraiser benefiting the American Cancer Society.
Once Evie became a cancer survivor, I knew that we would participate in order to give back to this amazing community what they gave to us during Evie's battle with cancer.  Mt. Horeb, as a small town, gave our family love, support, and a light in the darkness.
A fundraising walk, which includes walking through the night, the Mt. Horeb Relay for Life continues to be one of the most successful, per capita, in the nation.  
I'm honored to have served on a the committee a few years back, and our family team, Evie's Green and Speckled Frogs, raised well over $30,000 in 6 years of participation.
Relay was always exhausting and always rewarding.  Each year, as we would take down our tents, and pack up our campsites, I would think, "I'm not going to do this again; it's just too hard."  But, after I would catch up on sleep, rehydrate and shower; I would remember that the benefits far out-weighed the costs

Our Relay often included a fireworks display donated by Thundercat Pyros to honor the memory of someone they lost to cancer.  That display was just as large as the Rhythm and Booms display in Madison for the 4th of July; yet you didn't have to park miles away, and usually you could easily see it from the comfort of your own home if need be.  

Here are some of my favorite Relay memories from 6 years of Relay:
  • Evie and her buddy Isaac leading the survivor lap.
  • When our family would come from a distance: my mom, sister, cousins and their husbands from MN, and Jeff's brother, our sister-in-law, nephew and neice from ME; Jeff's cousins, aunts and uncles driving in from Madison.
  • The Relay that I walked, literally, through the night for the first time and then went to the grand opening of the American Family Children's Hospital the next day.
  • When Julie, our committee chair, played Judge Julie and convicted cancer, and one of the police officers in town cuffed cancer, put in the squad and drove him away...
  • My mother-in-law winning the Dale Arneson award for her many, many years of dedication to Relay (long before Evie even came into our lives).
  • When First Choice Dental sponsored our team and we got their logo on our shirts.
  • Our fundraising fun:  selling Brats in the Lot at Kalscheurs/Millers, Jeff's poker tournaments, my Evie's Courage Cards, Erick and Amy's Keg for a Cure.
  • Walking through the night and talking to different people along the way; sharing our stories of why we Relay.
  • The breakfast, generously served and donated by the Bender family, on Saturday morning.
  • The luminaries; always beautifully decorated, always meaningful, always glowing through out the night, lighting our way as we walked in the darkness.
  • The Luminary Ceremony; hearing the names read over the sound system at Grundahl Park...counting how many times I would hear Evie's name, Jim's, Isaac's, Ellen's, Gladys's...overwhelmed by the love of one community.
I could go on, and on. 

Our family hasn't been to the past few Relays because it has fallen the same weekend as WAGR Weekend (and you CAN'T miss that once you've been THERE)...I wish that I would have know that our last Relay would likely be our LAST Relay.  

Still,I know that every last weekend of July, my heart will be in Mt. Horeb; walking a path that is aglow with candlelight and paved by the sweet dreams for a cure.


Wednesday, February 26, 2014

WAGR Wednesday~Why Care that We are Rare?



This week, for WAGR Wednesday, I thought I’d highlight the fact that Rare Disease Day 2014 is this Friday, February 28th.  But what does that mean?  Why is Rare Disease Day important? 

Prior to having a daughter with a rare disease, I probably would have asked the same question.  I would look around at all the diseases that exist, (just talking about the different types of cancer can boggle the mind), and I would think, Why is RARE disease so important that we have to take a day aside to recognize it?”

It’s more than the fact that for the first few years of Evie’s life, whenever we had to run to Urgent Care or the ER where the doctors didn’t know her, I often felt like the side show at a circus: 

Step inside and see the girl with no irises!
Can you believe it folks?  She’s shows no facial expression because she can’t smile due to the neuropathy from her chemotherapy! 
Look at this, Ladies and Gentlemen; she has a temperature of 97.1 degrees Fahrenheit AND has a raging case of pneumonia!

It’s more than the fact that we had to wait for months to get her approved for Medicaid because they had to research WAGR Syndrome before approving her; AND we had to go through a court of appeals AND have Disability Rights Wisconsin argue on her behalf to get her into a county assistance program, because it’s hard to prove certain things when there is little documentation regarding the extent of the “effects” of WAGR.  

The importance of Rare Disease Day extends far beyond those reasons.   

Rare Disease Day is important because there is very little money invested in the research of, and treatment of rare disease.  Big pharmaceutical companies aren’t non-profit businesses; so why would they think it’s important to create a medication for a small population of people worldwide?  It’s also hard to convince the doctor, who needs some publications under his or her belt, to spend time researching a disease that would be difficult to recruit participants for, would be costly, and would not likely lead to mind-blowing revelations regarding the general human race. 

Rare Disease Day is important because ALL of the rare diseases combined become a unified voice of clarity.  

We ARE important.
We CAN make an impact.
We DO matter to the general population, because the RARE genes that make up RARE disease hold the secret answers to the medical questions which have baffled scientists and doctors for ages. 

For example, the research on WAGR/11p Deletion Syndrome that has been taking place at the NIH has already yielded amazing results like identifying and reinforcing the knowledge of the correlation between obesity and the deletion of the BDNF gene (accessible at:  http://www.wagr.org/obesitybdnf.html).  
  
The research has also shown that many people with WAGR/11p Deletion are missing, or have an under-developed pineal gland, which produces hormones that help regulate sleep.  Knowing that there may be a decreased release of melatonin (one of the functions of the pineal gland) in persons with WAGR/11p Deletion, and that oral melatonin supplements can help them sleep is critical in enhancing their lives.  After all, chronic sleep deprivation isn’t fun for ANYONE!

So, to help show law-makers, researchers, and large pharma companies that rare disease IS important and serves a larger population than they seem to believe, we celebrate Rare Disease Day.  To help our communities, friends and relatives understand that; yes, we have valid struggles, and yes, we have justified hope…we celebrate Rare Disease Day.  To help our rare families around the world feel connected to others; to say, “You are not alone,” we celebrate Rare Disease Day.

Finally, to help me live out MY passion; which is making a difference in this world~to this world; to show the world that BEAUTY can be born from HEARTACHE

...I will CELEBRATE Rare Disease Day…

Will you?

Tuesday, February 25, 2014

Guest Blogging Day~

It's another day of guest writing for Comfort in the Midst of Chaos.  Please visit there to read my piece titled Take Rest in the Cave, as well as the contributions of the other talented writers with whom I'm blessed to write.  Tomorrow, right here, it is WAGR Wednesday...I'm going to write about Rare Disease Day 2014, and why it's important to recognize and celebrate the day on behalf of all our families with WAGR/11p Deletion Syndrome and other rare diseases around the world.

Monday, February 24, 2014

Words from a Lunatic who Believes


Yesterday in church, the sermon was about Jesus healing an official’s son.  This passage has never quite affected me the way it did yesterday.  I felt suddenly impassioned and inspired, like a lunatic, to show the faith of the official~to show the faith that he had when he took Jesus at his word… 
When the man heard that Jesus had arrived in Galilee from Judea, he went to him and begged him to come and heal his son, who was close to death.

“Unless you people see signs and wonders, Jesus told him, “you will never believe.”
The royal official said, “Sir, come down before my child dies.”
“Go” Jesus replied, “your son will live.” The man took Jesus at his word and departed.
John 4:47-50 NIV


Having recently read through our Caringbridge journal from when Evie had cancer, I realized that, I kind of DID show faith like that back at the time of her diagnosis as her doctors sorted through the information they were gathering and tried to determine the appropriate course of action for treating Evie.  Below is my entry from September 23rd of 2005…I have left it as the original as I don’t want to add words to it even if just to correct any grammatical errors.

I know that the prayers being lifted up on Evie’s behalf changed the landscape of her treatment and battle with cancer.   

When all the outrageous circumstances surrounding it are considered, I can almost hear Jesus saying to us in the hospital:

"Go, your daughter will live…"

Chapter 2-- In Which Evie goes to the Hospital and has Nothing much Done...(A Pooh Tale)

Well, after reading all of the entries and prayers and scriptures, I have no doubt that there was some divine intersession that took place today. Literally as the baby crib was being wheeled out, and as we followed the nurses who were taking us to pre-op out of the room our surgery was delayed. I have chills right now again thinking of the prayers that were being lifted up and how this struggle was taking place at that very moment.

The oncologist and the urologist have not come to confident conclusion on how to best treat our little Evie Jo. One would like to biopsy her tumor first and then after deterimining it's stage due chemo to shrink it and then do a partial removal of the kidney. The other wants to do the full removal and follow up with chemo. 

I cried--I was already to the "the-room-is-spinning, I'm-going-to-throw-up, our-baby-is-going-to-be-cut-open" point. So I prayed quickly, "Lord what do I do?" and He said, "call Kelly." (For those who are unfamiliar, Kelly is one of our "go to" gals for WAGR syndrome. Thank you, Kelly, for being an obedient servant to the Lord's calling for you.)

Kelly gave me good, no, great questions to ask the doctors. She also gave me good advice medically, spiritually and personally. So, I went back into the room well armed with confidence and we talked to both doctors again. 

Ultimately, what Jeff and I decided was that as difficult as it was to the put the brakes on when we were rolling down a yucky, but decided course of action, we couldn't deny the "God-incidence" that on the same week as our baby was diagnosed with Wilm's Tumor, that there was a fantastic meeting of the minds in Vancouver where several of the doctors who have operated on our WAGR kids to remove the Wilm's are. Dr. Puccetti, our oncologist, wanted to confer with several of them before deciding our course.

So, praise God, we are home. We still know that our little Evie has this cancer in her, so we are asking for the covering of prayer to protect her and get her ready for her surgery next week. Evie was so funny because she was so hungry and we were talking and talking to the doctors and she was yelling at us so I finally said, "can we please give her some cheerios and get that IV our of her foot???" She was very content to sit and eat her cheerios, and wave at us as we discussed the fate of her Wilm's Tumor and how we will ultimately destroy it. :)

As we drove home, my mom sat in the back seat calling people, Evie was waving, and I was listening to the radio. The song "Held" came on and Natalie Grant sang, "Can you not wait for one hour for your precious Savior?" I thought, yes, we can wait. Lord if you are using this time to do an incredible thing, than we will wait. Those prayers that interceded on our part literally changed the course of Evie's life and our lives this aftermoon. 
 
I have called our church and asked to have a prayer meeting on Sunday afternoon for Evie and they are arranging it, I figure, God gave us time, so lets get some good praying done.

Meanwhile, we're back at home. Evie is a happy little girl and we will be happy to be sleeping in our beds tonight. 

I plan to call the doctors on Monday to check in and see where we're at. Keep praying--obviously God has something fantastic He's working on and just needed a little more time :)

Love you all, Tammie, Jeff and Evie

I recall people saying, "Oh, it will be a long weekend for you at home..."  But it wasn't. 

God was working, God was moving...I had an unexplainable peace, a belief that things would be fine.   

And, look, they are...

I have that same peace with our upcoming move to Reno.  It's mind-boggling, and unbelievable to me that we are uprooting everything here, leaving all the familiar faces, and places~but Jesus is saying, "Go...you are to Go West...I have a great adventure for you there..."

So Jeff and Tammie took Jesus at his word, and departed...

Friday, February 21, 2014

Favorite Fridays~"It's a Great Day for Hockey" (Badger Bob Johnson)

Tomorrow afternoon, at 4 o'clock, we'll see the puck drop at a Badger Hockey game for the last time...at least the last time holding our season tickets.  No doubt about it, one of the things I will miss the most about living in Wisconsin will be Badger Hockey.  
I had never been to a hockey game until I started dating Jeff.  We both lived in Milwaukee; I was a graduate student, and he was a producer for the weekday morning news.

Hockey was in Jeff's blood...for as long as he can remember, he and his brother would each get a night~if I recall correctly, I think Mike had Friday nights with Dad and Jeff got to go on Saturday nights.  Jeff and Mike grew up playing hockey, being driven to Madison in the wee small hours of the morning since there wasn't a team in Mt. Horeb.  The basement of the house in which Jeff grew up was nearly floor to ceiling Badger; and the majority was Badger Hockey.

I fell in love with the game the minute I stepped into the Kohl Center for the first time.  The roar of the crowd, the thunder of the Crease Creatures, the anthems from the UW Band...the atmosphere was one of magical excitement.  
So here are some of my favorite memories and Badger Hockey traditions that will never fade...

When I first started going to games, I didn't understand that we were to shout "SIEVE" at the opposing goalie...I thought we were shouting "Steve"...the name of a player...  That's a classic "Tammie-ism" that goes down in Section 203 history.

Another great memory is The Blue Line Club~before it became outrageously priced.  It was the only place to order an "adult" beverage, and we'd go down to the club in between periods and usually would stay well into the subsequent periods.
A Badger Hockey staple is The Count...Phil, in his white sweater, at all the games: 1, 2, we want more...Evie got to hold the "2" sign when she went to a game with us...Here's the video!
Five goals by the Badgers at a home game means free custard from local Culver's when you give them your ticket.  "We want ice cream".

We had our own "personal" game which made the season an awful lot of fun.  Choosing "My Guy" for the new year...Shane, Angie, Jeff and I would choose our freshman for the year and yell, "That's my guy!" when he would score. 

There was a special year that a young fella named Justin Schultz joined the team and we all wanted him for "My Guy" so we just decided to call ourselves "Schultzy's Section..."

I'll never forget being at the Frozen Four in Milwaukee when we won the National Championship game at the Bradley Center...FANTASTIC.  Magical.
We had our own "pre-game" traditional dinner at Jordan's Big 10 Pub...greatest pre-hockey food Evaaahhh...and the best staff.  Pub chips and Strongbow...I still can't believe they never added a sandwich to the menu called "The Shane."
Then there was the game where we met Blake Geoffrion; our first Hobey Baker award winner.  (That's the Heisman Trophy of hockey, for those who know even less about hockey than I do.)

To make the hockey games even more fun, we finally "met" the folks who sat behind us in Section 203.  We  REALLY met them for the first time when we all were going to the Frozen Four in Detroit...sharing that experience together, and all the games thereafter just made me love hockey games even more because our fun had become even "funner" (couldn't believe it was possible)!

My friend Vicki and I took a road trip to St. Louis for the Ice Breaker Tournament one fall.  That was a ton of fun, until a waitress asked if we were at the game because we were a parent of one of the players.  What?  Really?

Our Hockey Christmas parties and white elephant gift exchange were truly a blast.  Maybe we can talk our friends into planning the parties for a weekend we're able to come back for a game.  

We took many road trips over the years:  St. Cloud State, Detroit (Frozen Four), Milwaukee (Frozen Four), Minnesota, Boston...

A few seasons ago, one of us came up with the idea of officially dubbing ourselves the Real Housewives of Section 203.  However, we actually get along, unlike the "Real Housewives" on "The Real Housewives". 
A couple of years ago, the "My Guy" game turned into full Fantasy Teams; and Jeff's been kicking our butts since day one.
Last year, Evie went to her first Badger Men's Hockey game. (Click that link to the video; Jeff did a phenomenal job of capturing the event, and documenting the family history of Badger Hockey).  Evie had been to see the Badger women play before, but the crowds and noise of the Badger Mens' games were something we had to prepare her for.  She got hooked!  She will be with us tomorrow as we sit for the last time in Section 203, (officially).  
How will I explain my tears to her, other than that these games have been more than a sporting event to us~they have been a part of Jeff and I through good times and bad. 
Badger Hockey has a phenomenal history...a legacy...more than a game, more than a team...

Our Saturday nights in Reno will be difficult come October...but it will always be "A Great Day for Hockey."

Wednesday, February 19, 2014

WAGR Wednesday~Four Pics, One Word

Have you ever played the game Four Pics, One Word on your smart phone or device?  It's pretty addicting and quite the mind-bender.  The object of the game is to find the one word that each of the four pictures has in common.
As a response to Rick Guidotti's Positive Exposure project, I thought I'd do my own version and  incorporate a little bit of Four Pics, One Word...
You see, whenever you start searching "WAGR" or "11pDeletion" on the internet, you get bombarded with medical literature, and that medical literature does NOT paint a pretty picture of WAGR, (neither do the medical photographs.)  
That's why I love Facebook so much; I can bombard MY page with the beauty of Evie; of her smile, of her dimples, or her glowing joy.  THAT'S what WAGR Syndrome is 95% of the time. 
So, here's what I'd like to do.  I'd like to challenge those out there, who are up to the task, to put together their OWN Four Pics, One Word~WAGR collage.  I'm posting the one I made for Evie here.
  
I used the smart phone app FrameURLife ~ it's a free photography app, and there are a multitude of others to choose from. You get the app, upload the photos from your phone or device; you can edit them and add text to them, then share them on your Facebook page, e-mail them; so on and so forth.

Let's show people today what WAGR really looks like the majority of the time! 

Tuesday, February 18, 2014

Guest Blogging Day~Comfort in the Midst of Chaos

My post for today is as a guest writer on the blog "Comfort in the Midst of Chaos".  I'll be back tomorrow with WAGR Wednesday: A Challenge to my Fellow Zebra Families.

Monday, February 17, 2014

Reflecting on Some Deep Dark Nights


As time goes by, I remember less vividly the details of life when Evie had cancer.  I think it’s a defense mechanism that God has built into our systems, a way for us to recover from difficult periods in our lives.   But I also find that reading my journal from that time provides me with a healthy perspective on life, and reinvigorates me in my walk of faith and in my relationship with God. 

Because I kept a Caringbridge website updated for our friends and family when Evie was sick, I have a great resource that takes me back to those “too-many-late nights” and over-tired days.  I read through much of the journal the other night while riding in the car to MN.  It was wonderful to read through and “feel” my faith during that time.  Here is one of my entries from the first few weeks of Evie’s treatment:


Written Oct 11, 2005 8:06pm
Then we will no longer be infants, tossed back and forth by the waves and blown here and there ... Eph 4:14

We are indeed becoming stronger because of what we are seeing. I realized today on our way into the clinic for another blood draw that we would never become better people if our battle with cancer was an easy one. If this went too smoothly, we would l never be "in the fire" and change from the experience.

Endure the pain, or stay the same....

So, Evie had a good day. We are still keeping up on the morphine so she continues to drink from her bottles and eat. She seems to want to do more baby food again than adult food. I think the textures are hard for her to swallow due to the soreness of her throat from the chemo. But she ate her dinner well tonight and after her bath was ready for bed.

Her hemoglobin was on the increase, so she did not require a blood transfusion today.

She was hilarious at the hospital...the minute the elevator door opened and she saw people she started waving...she never really stopped until I put her in the car to come home.

Tomorrow she and I will hopefully enjoy a relaxing day at home, then Thursday she has chemo and Friday an eye doctor appointment. I'll have to call the eye clinic ahead of time and see if we can bypass the waiting room since she will be susceptible to germs.

Take care, everyone!

Love, Tammie, Jeff and Evie (who cut a new tooth today! that makes 9!)
Sometimes it's just really good to look back and to see how far you've come...


The faucet hasn't dripped in months...

Nori and Jinx at our hotel at Lifest Five months have passed, We've seen it snow, We opened gifts,  We miss you so. We t...