Just Keep Going - Day 521

The more days that go by where things are well, the less I think about posting to the blog and thus you see the gaps of time getting further apart between visits here.  That may be a good thing, I guess, though the help that writing provides me in terms of re-centering focus from time to time is invaluable.  It is a good thing to put work down once in a while and just write.  As of late, we've been having fun and trying to achieve a niche with work, pre-school, and family time where the balance of all three brings needed stability.  So many things going on at school for me (my 15th varsity soccer season now underway), the kid's social calendar is growing which is such a wonderful sight to see, and Polly is working so hard with her practice as time between doctors visits and preschool commitments permit.  I can't say we've had an average fall season this year because I am not quite sure what average would be.  I don't think we do average, honestly.  There are a ton of things to be thankful for going on in our own backyard, so to speak, that life is never dull.  Certainly Ellie's continued good health and the blessings we count every time they interact with Polly's parents and my parents are brilliant reminders of HOPE manifested before our very eyes.  But a quick peek every now and again out of the front window, in the form of a conversation or update on Facebook or doctor's visit that hangs on blood results, reminds me of the battle still raging for us and so many of our heartfelt cancer world friends.  Sometimes it feels like the annoyance of a small rock in your shoe and other times it might as well be a hot poker to the eye.  Regardless, the thought provoking reminders do not go away.  Experiences, voices, desires, and day to day activities change so often with 3 year olds anyways that you just have to smile, try not to question much, and just keep going.

For the most part, Ellie has been handling her weekly chemo quite well.  Her blood tests never get drawn without a little nervousness from Polly and I but we see good news 9 times out of 10.  The danger this time of year is the cold season.  We have been very nervous about seeing how her increased activity through pre-school and various other events would match up with her still suppressed immune system.  I would say up until this past week everything has gone near perfect.  However, right after Thanksgiving she picked up a cold and runny nose.  Strange too because Timmy always is the first one to get sick.  This time is was reversed and while it was fairly short lived in him, hers grew into a nasty cough by the end of the long weekend.  Early Monday morning we were woken up around 5am by her calling for us in between frantic gasps for air.  It was the first OH SHIT moment we've had since last winter and the kind that just brings back so many of those fears you spend months finding a way to ignore or at least put into a manageable area where you can have a go at them when good n' ready.

We hadn't seen many signs of the severity of her cough that evening and so this being, if I remember correctly, the third time during the last year where we have gone to the ER unexpectedly in the middle of the night after being blind sided by something getting out of control very quickly.  You just can never be completely at peace....especially when the craving to be so is supremely prevalent during a streak of good days over many months.  Cue the hot poker.  

As Polly was spinning like a whirlwind trying to get things together to go out the door, I had Ellie in the bathroom with the shower on full blast to try to get as much steam into her as possible.  I'm thinking this is going to be a week long hospital stay at least and dammit why didn't we see this coming?????  She sat on the counter top looking at me, her chest still getting real big....and REMARKABLY she was calm.  Her eyes never left me the whole time we were in there which was strange because of how she and her brother move from activity to activity so fast that you cannot really say lengthy attention span is in their daily routine.  Her attention was focused directly on me and I am just trying not to let her see me scared.  Though her sentences were interrupted with breaths, she wanted to know if I was going to be here when she got home and if she could go out to breakfast after seeing the doctor.  So, my mind is going 1000 miles a minute trying to figure out how she is talking while breathing this terrible noise from whatever ailment within and now I am finding myself answering questions about breakfast.  What?!   This girl is amazing.  I hate that I am admitting this and probably wouldn't be doing so in any other forum other than my own words in this blog so please forgive me, but I have to be true to my thought process because the things you don't want to think about....EVER....exist. Heck, they are amplified at 5am because you are tired and stunned.  What if she goes to the hospital and doesn't come home?  I refuse to let that thought go any further because we haven't spent the last several months building strength along with the power of prayer, Faith, and immense HOPE to be our guides when adversity strikes. But, the emotion can get the best of you for a short while sometimes.  Ellie isn't old enough to know how she is doing it or why, but she gets it.

We talk in the coaching world all the time about dealing with pressure packed moments where you are tested  to your limit.  We use words like Poise and Discipline with a whole lot of attention to detail during the execution of a game plan or rather putting your best foot forward when its needed and knowing exactly what needs to be done.  And yet here was a situation where I was struggling to comprehend as quickly as my 3 year old daughter who was already seeing herself walk out of the hospital straight to the nearest Peet's Coffee shop for a muffin and milk.  It is a little ironic she is the one who was calm here, but in hindsight a sign of reassurance only she was capable of.  She gets this and.....she's GOT THIS.

Polly took her to the ER and called about a half hour later with much relieving news that things were OK.  Thankfully her lungs were clear....don't know how that was possible given the morning we had, but we'll take it.  Some possible Divine intervention at work right there.   The doctor called it a case of Croup, so we got some breathing treatment meds to use with Timmy's nebulizer (oh yes, twins share everything) and off she went to come home (following the required stop for food of course).  No hospital stay, no major complications this time as feared.  Disaster averted.  Thanks be to God.

There are battles being fought against leukemic blasts, chemotherapy side effects, flu viruses that are magnified from a weakened immune system, and the potential long term damage the toxic chemo drugs are doing to her body in general.  Even though we hadn't seen this sort of worry in many months, the few hours on Monday morning were enough of a reminder as to the magnitude of this world.  Parts of this whole thing are absolute hell.  But in the steam filled bathroom sitting on my counter top was Winston Churchill in red and pink 3T horsey jammies saying loud and clear, "If you are going through hell, keep going."  Ellie handles things with a grace all her own.

She is still fighting the cold right now and goes in for chemo tomorrow, so we are expecting her counts to have gone neutropenic (which will mean a hold on her 6MP for a week), but she is feeling a little better and we will continue to monitor with our thermometer in hand.  Now that we've gotten the shock to our system out of the way, we are ready for anything, trust me.  The ups and downs of maintenance therapy are still so much more manageable than anything we went through a year ago at this time (yes, despite the rare few hours of panic starting at 5am).  The facts are, she is nearly 16 months cancer free now and overall doing very well.  Again, Thanks be to God.

As always there is a Faith component to this that surfaces so often right after moments of distress.  We are praying and hoping so much for little Madeline's battle to keep on an upward trend only two months removed from a bone marrow transplant (BMT) and NEVER far from our thoughts are Justin Solomon and his incredible Mom, Jennifer, who are tackling complication after complication from his own BMT.  If they can do this, we can do this too.  Faith binds us together and cements a show of strength unparalleled in anything I have ever experienced prior.  Faith, in the form Ellie's determined eyes at 5am, is what we have and its ultimately all we need.  Just have to keep reminding myself of that and move on.  We're gonna beat this thing.....mark my word.