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!