Donation time!

Dear Family and Friends,

On July 20^th, I’ll be running my second half marathon in honor of Ayla, my tenacious 3-year-old daughter who has struggled with Crohn’s Disease since she was 6 months old.  As of now, there is no cure for this debilitating disease and the current drug therapies carry many scary risks.  But in the two years that I’ve been paying such close attention to medical science, I’ve witnessed some tremendous strides in research that brings big hope to our family.  Much of the money that pays for this research comes from the Crohn’s and Colitis Foundation of America (CCFA), the foundation benefited by my half marathon. 

Ayla’s symptoms have included severe pain from hundreds of intestinal and oral ulcers, vomiting, chronic nausea, diarrhea, bloody stools, horrific body rashes, unremitting fatigue, and for a time, the inability to walk.  A cocktail of drugs, including Imuran (a chemotherapy), Remicade (an immunosuppresant) and antibiotics (a gut flora terrorist), have had her Crohn’s largely under control now for 8 glorious months.  We’re grateful for the state of comfort that her therapy regime brings, but we’re tremendously fearful of the accompanied risks of serious infections and cancer. 

Despite the absence of her Crohn’s symptoms, Ayla has still spent a tremendous amount of time in the hospital over the past several months.  After too many painful pokes to count, xrays, and a surgery to have her port-a-cath (central line) removed, we discovered she had pneumonia.  Her compromised immune system was definitely at the core of this illness, which is why we need better treatments and a cure for Crohn’s Disease. 

As the Team Challenge fliers boldly claim, last year’s half marathon was LIFE CHANGING.  On race day I was met at the finish line by my smiling, cheering, sign-holding family and friends.  The flood of emotions was tremendous and it brought me to tears.  During trainings, I connected with people who ran furvidly despite struggling with Crohn’s or Ulcerative Colitis.  They helped reframe my view of our situation.  I began to see that my family and I don’t have to live our lives as helpless victims to Ayla’s diagnosis, and fundraising for CCFA is a way to actively participate in finding a cure.  As Ayla’s mother, and an advocate for all those with these diseases, I am fired up to seek answers and find solutions. 

Please help me find a cure for Crohn’s Disease and Ulcerative Colitis by donating in whatever capacity you can, and by passing this request along to others.  Over 80% of your dollars go directly to research, and I assure you, big things are happening in genetics and microbiome research that will lead to a brighter future for Ayla! 

As you all know, this has been an unbelievably rough road for us.  The support that we’ve gotten from you, be it emotional, monetary, or culinary, has been THE thing that has gotten us through.  Our ability to stay focused (mostly) on silver linings is entirely a result of the love and support we receive, in all of its forms.  Please know that your donation is not only helping to find a cure, but it’s helping our family stay positive and strong, and we are INFINITELY GRATEFUL for that.

Your tax-deductible donation can be submitted on my fundraising webpage at http://online.ccfa.org/MenoReiner.  All donations must be received by July 8^th.

Steve, Jonah, Ayla and I thank you for your support, and wish you wellness beyond your wildest dreams. 

All my best,

Meno Reiner

Hospital Frequent Flyer

Although Ayla has had great relief from her Crohn's in the past 6 months, she certainly has not steered clear of the hospital.  In fact, we just returned home yesterday from a two night stay at the luxurious CPMC in San Francisco, and this was our fourth visit in 6 months.  

I am very public about when Ayla gets sick.  Our extended family and all Facebook friends know this well.  For one thing, it increases overall awareness of Crohn's disease, which is so important.  This disease is so widespread and yet so publicly underrepresented!  But my main intention for announcing Ayla's bouts with illness is to gather positive energy for a quick healing.  We ask, and our people are so generous with it.  It makes us feel loved and supported, and more importantly, it works for Ayla!  Her acute illnesses have been quick, and our stays at the hospital have become shorter and shorter.  We are blessed with SO MUCH LOVE, it's ASTONISHING!  Keep a lookout for writings in the sky: "Ayla Rae now accepting prayers, love, positive vibes, intentions, and meditations!"  

I would like to give a proper explanation for why Ayla is in the hospital so much, despite her Crohn's being under control.  She is on 3 pharmaceuticals to control her symptoms, two of which are immunosuppresants, which leaves her far more apt to pick up a bacteria or virus than a healthy child.  Once the bug gets in her, her illness is more intense, and seems to last longer (even abrasions take longer to heal).  One of Ayla's medications, Remicade, is administered intravenously every 7 weeks.  Two years ago we had a port-a-cath, which connects to a central line, surgically placed in her chest to make these infusions and her copious blood draws easier.  

Here's her "port" when it's not accessed at the hospital.  However, usually it doesn't have those three red dots on the bottom left.  Those were a result of an access gone bad.  Poor girl was very upset that day.

Like all other medical interventions, a port-a-cath comes with risks, and with this is it a possible CENTRAL LINE INFECTION = DANGER!  Anytime Ayla gets a fever of 101 or higher, we have to suspect a central line infection and take her into the hospital for testing and IV antibiotics.  

So now you might be able to imagine this cycle of madness: Immunosuppression + Central Line = Hospital Frequent Flyer.  

Can we please get some miles for this???

Unfortunately this last hospital stay also fell on her 3rd birthday.  Yep.  LAME!  But we did manage to squeeze in a sweet little birthday celebration before we realized she was sick... 

She enjoyed her party despite her lack of energy.  We were vaguely suspicious that something was off, but had no idea a 103.4 fever was around the corner.

Custom-made birthday crown for our SuperAyla!

And we did more celebrating in the hospital...where everybody knows her name (sung to the "Cheers" tune, of course).

Daddy brought in a large suitcase of gifts that had yet to be unwrapped before our rapid departure to the hospital.

We just got back in our cozy home yesterday.  Let's hope/pray/meditate/etc that we're here to stay for a very very very long time.

Kicking off the 2014 running and fundraising season

I knew I was taking a blog hiatus but I had no idea it would be an entire year! My last post introduced what would be my first of many fundraising efforts for CCFA and half marathon trainings with Team Challenge. Here are a few moments from last year...

Mile 5 on a hot training run last season

Upon seeing my superstar kiddos at the finish line with these signs, I cried of course.  My sister, hubs, inlaws, and neighbors were there too.  It was nothing short of fabulous.

My running partner was THE BEST!   

There is a tremendous difference in my state of mind going into this second year. I show up to training not knotted up in fear of my daughter's condition, or wrung out from the previous night's vomiting episodes. I am rested, confident, and fully grounded in a calm and happy existence because Ayla has had a six month stretch of AWESOME (with three "minor" exceptions). 

Feeling 100%!!!!!

About seven months ago, we discovered that in addition to her Crohn's, Ayla had a bacterial gut infection called Clostridium difficile (aka: C Diff). The poor thing was miserable. Excrutiating belly cramps, projectile vomiting, painful stools 12 times a day. She was wrecked. As was the rest of the family. We ultimately treated her with a "big gun" antibiotic called Vancomycin. Within 3 days she was on her way to being clear of C Diff AND of her Crohn's symptoms! When "Vanco" is used intravenously, it is a bigtime antibiotic with serious implications. But we're using it orally, and the drug does not get absorbed into the bloodstream so it essentially keeps her gut clear of the bacteria that have been wreaking havoc on her GI tract, without straining her other organs. Of course this means that she also has virtually NO gut flora, which also has its implications. But for now, this is what's working, and nothing until this point has given her relief like this. 

We have witnessed this child be reborn in a way. Ayla's development has now had 6 straight months of free reign. She laughs as she races her brother around the culdesac. Mind you, he's on a bike and she's on foot. And she keeps up! Her language development has soared. Our ability to communicate with her about how she feels and what we can do to help her is so much greater now. Her height and weight are right on target, which is truly a gift in the pediatric Crohn's world. Ayla and Jonah have been able to develop a "normal" sibling relationship now, instead of one revoloving around Jonah's sick little sister. 

I am entering this new fundraising and training season feeling charged, empowered, and excited. We don't know how long this drug will work for Ayla, so we feel more than ever that we've got to get a move on with this finding a cure business. Stay tuned for the soon to be released "ask" letter. Or, even better, train and run with me!!! 13.1 miles of running through the carneros valley vinyards to be met at the end with wine tasting, pool lounging, and celebrating. Anyone? Anyone?