Thursday, September 27, 2012

Small Things

You may never realize the impact even the smallest of actions can have on someone else.

To the those of you who have been there for us this past week, thank you.  You just don't know how big the regular conversation over coffee or the phone call really is.

Today, try to do one small thing for someone else, just one.  After all, it is all the little things that add up.  I know exactly how I am paying kindness forward today, do you?

Wednesday, September 26, 2012


The past few weeks have literally been jam packed, like a tennis match, bouncing from one end of the court to the other.  Finally, we are falling back into the familiar swing of routine, a sort of comfortable predictability for the time being, at least until the next shoe drops.

Both girls have settled into their classrooms, loving their teachers as well as being with old and new friends.  Second grade is bringing new challenges to the table for Paige, while kindergarten is exactly what Gwyn had been hoping for.  Honestly, we couldn't ask for a better start to the school year!

We are still working to combat Paige's night terrors and migraines.  Luckily, nothing related to her ailments was found during her neurological assessments.  Nevertheless, last week we had a night where she was up every twenty minutes.  The next morning, she didn't remember any of it.  I, on the other hand, was beat.  I'm shocked she does not wake up exhausted!  Now we are trying yoga before bed as a way to relax her body and mind.  I am hoping I reap the same benefits she does.  Nothing eludes sleeps more than when worry wrestles with your head before bed.  Much like me, Paige cannot tone down the thoughts from her day when it is time to sleep, instead whatever concerned her during the day continues to stalk her mind in the evening.

In terms of Cole, we are in a calm period until next week when the cycle of appointments begins once again.  Ultimately, we did sign the consent in order to place him in the nk cell study.  Our hopes are that this will provide not only us and our doctors with pertinent information as it becomes available, but that by being a part, we are able to provide information that can help physicians of other patients who are also plagued with issues like Cole's.  Some where, some time, I know there will be another family, like us, facing a journey and choices beyond anything they ever imagined, turning their lives upside down, their paths far off course.  My biggest hope is that the researchers are able to make progress from what they learn from Cole, that his cells can be the difference for someone else, that something good will come from all of this.  For now, we wait for the next piece of news, enjoying every second of play until we are faced with our next steps, hoping we travel the right trail, even if it is an uphill climb.

Thursday, September 6, 2012


Very quick update, both appointments went well today.  More details to follow when I have time to delve into details.  Thank you all for your kind thoughts today.


While I'm anxiously awaiting both Paige and Cole's appointments tomorrow, my thoughts can't help but drift elsewhere.  Despite where we are in our journey, despite the good days and the bad, I try to remember that there are other people with similar struggles, some that may be much harder than ours.  I can't help but think of other kids, of other families, dealing with their medical mysteries and odysseys, especially one family across the country.

One night I happened to check the feed from a Crohn's forum I follow on Facebook. There I found a post from a parent sharing the latest findings regarding their son's IBD and IL-10 studies.  My scanning became focused as soon as I realized these were the studies our gi physicians had discussed with us and our immunologist had been looking into.  Immediately I sent a message asking the writer to please contact us.

Within days, Mason's father sent me a message explaining their situation as well as their willingness to help us if they could.  Not long after, Mason's mother also reached out to our family, offering to talk anytime.  She did this even though she is sitting beside her son as he regains his strength from his bone marrow transplant.

Social media has given me an opportunity to not only share our experience but connect with someone who has traveled in our shoes.  We have been able to cheer for Mason through his Facebook page and connect with his parents through the messenger.  I am asking you all to please, keep this family in your prayers.  Mighty Mason and his family have endured quite a bit on their road.  Their journey has touched my heart, and their strength and kindness inspire me as my trek with Cole continues.  Please take a moment to let their story touch you too.

Tuesday, September 4, 2012

New Year

The air in this house is electric this evening.  After one unforgettable summer it's time for school.

Both girls struggled to fall asleep tonight.  Before I went in to retuck them for the third time it was funny to listen to them chatter back and forth about school.  Paige was giving Gwyn the rundown about what to expect on the first day of kindergarten from a kid's perspective.  The sisterly talk between them was just really sweet.  When I went in to get them settled, Paige confided that she had some second grade jitters.  She just was so worried that her teacher would not be nice and the homework would be hard.  For a second I almost laughed, yet both are valid concerns for a seven year old to have.  After the reassurance that teachers really are nice if you do your job as a student and the fact that her mean mommy made her do tough homework throughout the entire summer so how could anything from school be that bad, she was reassured that second grade would be just as awesome as first grade.  Not long after, both girls finally drifted off to sleep.  

Like them, I've struggled to fall asleep the past few nights.  Even though I have been tired, even fallen asleep on the couch, when I have gotten to bed, I have just lied there, awake.  Then, I don't know if this has happened to any of you, but once I'm out cold, I've been trapped in one of the most exhausting dreams.  When I'm worried or stressed, I usually have one of two dreams, either the restaurant dream, where I am working, totally slammed, and just cannot keep up with what is going on.  The other is the back to school dream, where I'm just frantically trying to get everything ready.  Lately my dream is different, I have been juggling Cole and all his gear at the airport before being bounced like a super ball from appointment after appointment.

Perhaps my panic dream has changed because of where I am these days, or because of what is ahead.  While we knew we might be headed somewhere else, now that it is finally in motion the entire situation feels surreal.  Late Friday, we received a call from our immunologist's office.  They had finally heard from the expert in Texas regarding Cole's tests.  He wanted to look at Cole;s blood himself and was sending us a consent form of some sort, we were to read it, then, come in to discuss and ready to sign in a few days.  Unfortunately, the fellow could not share any additional information with us as she was merely calling to let us know it was on the way and to clear our schedule for a particular time.

Throughout the night and next morning I restlessly checked my email, digging through messages as if I were looking for treasure.  Finally, I decided to check once more before heading to bed.  There it was.  Due to the rarity of Cole's condition, he's been invited to join a study regarding his nk cell deficiency.  A great deal of this test will look at the various pieces of Cole's DNA in order to understand the variables in his genetic code causing his condition.  Luckily, from what we understand, the researchers will look at all aspects at this level that could be related to nk cell function and share necessary findings with our physician.  We will not have to wait for approval for various studies, just the information.  According to the consent, we will have to travel, however we don't know when or for how long.  Yes, we have a few questions, but our boots are on, ready to hike down this new fork in the road.

Pathology does not lie, so I know Cole is not 100%, yet at times I just don't believe all of this.  More than ever, he has seemed just like my other kiddos, normal.  Receiving the consent just reminded me of his reality, that no matter how typical some of our days are, he is one special little boy.  I'm hopeful that this new path will not only give us answers and options for Cole, but hope these researchers learn enough to make a difference for some other kids and their families so their journey is a little lighter.

It's going to be a week of many beginnings here.  Each one is full of promise.  I'm ready for them all to be outstanding!