Friday, August 14, 2015

Just Is

I often wonder if the doctor can feel the energy drain from the conversation when she delivers news and if that's the reason she says she is sorry.

There isn't anything to be sorry about, none of it is anyone's fault, it just is.

When it is, you learn.  You learn to accept, learn to cope, learn to adapt, learn to let go.

Today we received an email to call Cole's immunologist as soon as we were able, she had our news from Texas.

Nothing has changed.

The nk cells are still not working.  The hope was that maybe that would change, not so.  Researchers still are not clear on what the underlying cause is, so they have decided to rerun all of the genetic tests, not just on Cole, but the rest of the family as well.

There were markers on cd16 that the doctors are curious about, so they are exploring the possibility of further genetic tests for this particular strand, much like the stxbp2 tests that were run last winter.  First step with that is seeing if the insurance company will allow the test.  Since cd16 has a direct correlation with Crohns Disease and after the amount of tests that have been run on Cole to this point, our doctor feels there is a good possibility this test will be allowed.  Of course like all genetic tests, it will take more time.  Like before, we will wait.

Sadly, school cannot change its start date or wait for long.  As of right now, Cole will not be going to school.  Which also means the likelihood I can return to full time work outside of home is slim.

His doctor is running a few additional labs next week at infusion to see if there are any antibodies to the different viruses he is susceptible to with his nk cell dysfunction.  If there are any antibodies in his labs, it would indicate an exposure and a possible ability to tolerate that particular virus.  If this is the case and only if this is the case, we can discuss school, if not, he is home with me.

I am grateful for all his doctors are working on, as well as all the support from family and friends.  I know we are fortunate to have our healthy girls and for Cole to be doing as well as he is right now.   At the same time, I struggle with the feelings of sadness because there are so many milestones we are approaching that will be unfulfilled.

When we were young, Nick and I would sit and talk for hours about the dreams we had, the life we were building for our kids, how much fun it was going to be to watch them grow and find their passions.  Recitals, scouts, field trips, sleepovers, sports, family trips, you name it, we brainstormed all the possibilities.  What they might love, the things we were going to do.

 Never, never did we picture holding down our child as he screamed "no needles" or thought the tight knit friendships we had built would unravel because our new situation was uncomfortable for others.  We never pictured after years of tests, doctors still would not have key pieces of this puzzle to be able to focus on putting it all together.  Never did we think our other kids would have to face such harsh realities of life when they should be playing with dolls.

Yet, here we are.


Stuck in a place we surely thought was temporary.  I'm still hopeful that it's possible the next test will miraculously tell us something else, something that means we can stop taking turns on the sidelines, instead guiding Cole into the game too.

In the past four years, I'm not so sure I've learned to accept any of this, not sure I've been able to let go of all the dreams I have for my kids or myself for that matter.  I'm not even sure if I'm coping well or not, or if I'm merely treading quicksand.  I do know I'm trying hard to adapt to every curveball thrown at us, all of which I never could have pictured taking a swing at in the first place.

Wednesday, July 8, 2015


So Cole's Facebook page has kind of taken over for short posts.  I really have so much to update here, and will be a bit more diligent in doing so.  I have to thank you all for being so loyal as followers and really commenting a ton on Cole's Facebook page. :)

Yesterday we ran a few errands because the weather was miserable here again.  I'm a sucker for a clearance, and happened to see some Cars sneakers on the rack.  Cole was so excited...they are the perfect size for fall, just a little bigger than he is now.  He put them on, saw they lit up and exclaimed, "Yeah!!! My sneakers for school!"

School.  School is something we still don't know if he will be able to do.  School is something he asks to do each time we drop the girls off or pick them up.  This fall is supposed to be preschool.  I'm not opposed to having to homeschool, but as a former educator, there is a big part of me that would like him to have the school experience, academically and socially.

At his infusion two weeks ago, more blood was sent down to Houston.  Doctors are once again evaluating his nk cell function and hoping there might be a change.  For now, preschool is off limits, which makes me a little sad.  My girls both had incredible experiences in their programs, thus one of my big reasons for wanting the same for Cole.

Cole does have teachers that come to him.  Luckily, we have been assigned an amazing speech teacher and will be working with her again in the fall as well as an occupational therapist.  He loves to see his teacher and is not only excited about his time with her but demonstrating what he practiced with her once she leaves.  Far cry from the worry I had whether or not he would want to work with her, this summer he has been missing her!

Until then, as we start gathering supplies for the fall, I will keep my fingers crossed for Cole.  Even if he can't go to "school" he will have school, and I will do my best to create as much excitement as I can, even down to his new sneakers and his very own backpack only for school, not the hospital, just as he asked.