Ugly week coming up and running progress!

Hello friends,

Well, we are getting double-whammied this coming week with Emily having her next chemo on Monday and Ally having scopes on Friday.  Emily's doctor is going to be giving her an oral dose of Versed prior to the infusion, in hopes that if we have a repeat of the usual occurrence of blown veins, that she will not have to be traumatized by the experience.  Now if they would just give Mom something...

Ally's scopes will be to determine if she has active Crohn's in her body.  The past month has been rough for her, as she has had daily diarrhea and blood in her stool.  This morning she asked, "Why is my stomach hurting ALL the time now??"  We are preparing for the worst but hoping for the best with the scopes.  Ally's body has a really interesting way of disguising when something is wrong...and in the past, Ally will have the same thing Emily has, but worse (this has been the case with pneumonia, it was the case with Celiac, and was the case with the genetic test done for Crohn's).  Ally needs to realize this is not a contest.  : )

In other news, my running has gone from deplorable to "not bad" lately.  Our first real group run was last Saturday, and I am proud to say I ran 3.5 miles without stopping.  The only person in front of me was Bob, who is doing the full marathon in December.  I was thankful to find a gal who I paced for the first mile at a speed I was totally comfortable with, and ended up running the last half right next to her.  Tomorrow we have a slightly longer run on tap, that apparently incorporates hills (insert sad face here).  All positive thoughts and prayers accepted!

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UPCOMING:

~ The CCFA Fundraising Event I had scheduled at Paint the Town on Thursday, September 13th has been cancelled (lack of interest).

~ The Kids Movie Night on Saturday, September 15th is still on for those who have RSVP'd.  Please let me know if you need my address, etc.  Checks can be made payable to CCFA or you can donate through the online site (on the right sidebar of this blog).

~ Our fundraising is still chugging along!  If you have not yet given, please consider it today.  Every little bit helps and we are trying to send kids to Camp Oasis (it's $1000 per child).

Thank you to all of our friends and family who have supported us so generously throughout this process.

success!!

Saturday, marked the 1st fundraiser for us! It was held at Froyo Earth, here in Spokane and it was a HUGE success!! Thanks in part to friends, family, the Froyo staff, & our church family.

It was a long, 12 hour day but at the end, I not only felt blessed to know so many awesome people, but I had the chance to meet complete strangers and tell them our story. Some misunderstood what Crohn's was, and only thought it affected elderly people which is not true. One lady has UC and can't afford her medications, and is currently out of remission. One guy didn't want to hear what I had to say and told yelled at me to sit down. So I did. One Dad came in with his son and asked me what Team Challenge is so I overwhelmed him with my story, from age 12 to present time, joining the Team Challenge program and raising money for kids like my nieces. He ended up giving me a $100 bill. Wow!!!!

Speaking of....To the gentleman who introduced himself as a Pathologist, if by some crazy chance, you're reading this, I want to personally thank you again, for your generosity. About 2 hours earlier, I was told to sit down and didn't want to be heard. But was given a 2nd chance, when you walked in with your son. You wanted to hear my story, my mission, and why this is my passion. You gave me the time and attention that other guy didn't. You gave me encouragement, and hope again. It's crazy to think that it takes just 1 negative person to ruin the momentum, the fire I had inside to share with complete strangers, but it did. Thank you for restoring that and for believing in a cause that is REALLY making a difference in the lives of so many Crohn's patients. Your generosity will not be forgotten and I look forward to dedicating a mile in Vegas to you!

my fundraising 'station'

family & friends packed the place the first 30 minutes. Totally awesome!!!

family = our biggest supporters, literally.

a cheesy self portrait in my TEAM CHALLENGE gear! :) 

our Care Group leaders sent this mass text out = so awesome. 

more friends & family

one of my dearest friends Linda came with her husband towards the end of the evening and it gave me the boost I needed to finish out strong! The after dinner rush was CRAZY and I was exhausted (as you can probably tell in this picture). They hung out with me for over an hour and I am so thankful for their support!! 

The store's total for the day was almost $1300 and with us getting 20% of that, I would say we cleaned up pretty good!!! Plus, with some other cash donations that day, online and in person, we raised a total of $600!!!

Our current total, to date is $6,325!!!

We're currently the #1 fundraisers in the NATION!!! 

THANK YOU ALL SO MUCH!!!! 

Our current goal is to raise $10,000 to send 4 kids to Camp Oasis ($1,000 each). If you haven't donated, we would love to have your support! Please go to our donation page to take part in our mission to find a cure for Crohn's & Colitis!!! 

and the winner is......

Stephanie Freeman!!!!! 

Congratulations Stephanie and we hope you enjoy Talus Rock as much as we do!!

Thank you again, Bruce & Heather Pedersen for making this giveaway possible! 

on a mission

I mentioned Camp Oasis a few posts ago and ever since then, it hasn't left my mind. The CCFA had the awesome idea of creating a camp for kids with Crohn's & Colitis, a place where they can go and be themselves, some with colostomy bags, some with puffy faces, and some even look 'normal.' But this is a place where all those 'weird' and embarrassing things aren't the focus, but instead it's what brings them together. Us Crohnies have a bond. No one really understands the 'uhhh I need a bathroom, NOW!' comments quite like a Crohn's patient. People laugh, tease and even go to the extent of breaking off a relationship because it's 'just too much for them to handle' but at Camp Oasis, none of that happens. These kids get to go for a week and have the experience of a lifetime! Like I said before, I wish it was around when I was a teenager. I'm sure the friendships I would have made would have lasted a lifetime.

I want this for my nieces. I want them to experience a place where they're accepted and not teased. Loved on and not abandoned. Treated like the sweet angels they are. It definitely doesn't happen at school among their peers. I learned that in middle school and high school when I was my sickest.

In the 3 short weeks Michelle & I have been a part of Team Challenge, we have become not just fundraisers, but a voice for the ones that are too embarrassed to do so. We've become advocates for 2 diseases that are debilitating, can be life threatening and quite unglamorous.

We've decided to raise our goal amount to $10,000 to give 10 awesome kids the opportunity to go to Camp Oasis for a week!! At first, I'll admit, it seemed daunting and too aggressive. But honestly, after much thought and prayer, I am convinced we, with YOUR help, can do this. Speaking as a Crohn's patient, I know how much a week at Camp Oasis would have helped my self esteem, outlook on life and would have given me hope that there are people (besides my mom & sister) that cared about my health. I can't wait to give Ally & Emily the chance to go to Camp Oasis, starting next year, and I'm even entertaining the idea of being a 'camp counselor' to live vicariously through them during the experience.

This new goal amount is not far off! We're already 51% there!!  I am confident we can do this!! Please dig deep into your wallets and hearts and give what you can to this phenomenal foundation. It's 100% tax deductible and goes straight to kids like my nieces, to give them hope and a future.

Here's a testimony from 11 year old Theresa in Pennsylvania that got to go Camp Oasis:

"IBD was pretty scary--at first. I was really shaken up when I found out that I had it. It turns out that it has a silver lining—you get to go to CCFA Camp Oasis!
CCFA Camp Oasis is a sleep away camp in Pennsylvania where you can see the stars at night. Did you know that most people can’t see the stars because humans produce so much light, we actually outshine the stars?! It’s remote but not THAT far from town. From where I live in New Jersey, it’s about a two-hour drive. It was easy to convince me to go once I found out that there’s a zip line, a pool, a rock wall, and TWO lakes! That’s not all; the activities there are the bomb! We get to go to cooking, where you make nachos and pizza bagels; last year there was a chocolate fountain!!! You get to stay in your own cabin with about twelve other girls or boys. Still not convinced? There’s a game that you play where you hit a ball around the floor with your hands and if you get hit at or below your knees you’re out. It’s pretty simple right? We call it gaga ball. You also get to do aqua; where you get pulled around a lake on a huge inner tube by a jet ski! Sure, you will get a little homesick, but your new friends can keep your mind off of it."

Infusion #2

Yesterday Em had her second Remicade infusion.  It went "better" than the last time, in that the first nurse only blew 2 veins and another nurse was able to place the IV on the 3rd try.  Once the IV was in, the infusion went quickly, and I think we only spent 2.5 hours there total - a huge improvement over the 7 hours we spent last time!!

She woke up this morning with a headache and said her tummy hurt but she still wanted to go to school, so I let her.  We'll see how long she ends up staying.  I suspect they will be calling me within a few hours to come pick her up.

One thing I have learned about myself is that the process of her having this chemo, in an oncology lab, with very sick kids all around, is that this is really, really hard.  As a mom, your job is to put on a brave face and be the pillar of strength for your child; they look to you for that strength.  But twice now, after I am all alone and the kids are in bed, I have found myself sobbing.  I'm trying to understand exactly why.  There is the obvious reason of hating this disease in my own child and wishing it would just go away.  I am angry at every drip of this nasty drug that goes into my child, suppressing her immune system, making her completely incapable of fighting off a simple cold.  I hate the effects (which thankfully, we haven't seen yet) that are possible with this drug, knowing that we could very well be the statistic that ends back in the oncology lab receiving chemo, but for a completely different reason: cancer.  I am angry that Remicade may end up being Ally's fate too when the disease decides it wants to be known in her body.

I didn't intend for this to get so sappy, my apologies!  I do, however, feel that it is important to be transparent during this process so you can see how desperate I am to find a cure.  This is not the way a 5 year old should have to live. 

There are currently seven $1M research grants going in Denver, being sponsored by the CCFA to find a cure.  THIS is where your money goes.  I want you to know, from the bottom of my heart, that YOU are making a difference when you donate to this organization.

Thank you to everyone who has supported us so far.  You can't possibly know how much this means to us!

Local Fundraiser Alert!!!

Local Spokane Friends & Family! Come out to Froyo Earth in the Valley and support the Crohn's & Colitis Foundation! It's an ALL DAY fundraiser and 20% of the proceeds will benefit the CCFA!

Thank you Froyo Earth for supporting our mission to help the millions affected by these debilitating diseases! 

    

My little Honorees!

In the process of getting signed up to support CCFA and run this half marathon in December, my girls were asked to be Team Honorees for the Rocky Mountain division of the CCFA!

You can see their link here!

Because of this, I get the distinct honor of attending all of the Team Challenge recruitment meetings and telling their story!  Public speaking is totally not my strong point, but its amazing when you are living the story every day how easy it is to tell.  Having the girls in front of all the folks who attend the meetings is huge too, because for those runners who don't have a connection to Crohn's or Colitis, it gives them a visual that they can work with.

We're using this ugly disease and turning it into something productive and good!