I have written quite a bit lately about how having a “terminally ill” child/loved one and that it is never far from your mind.  It isn’t in the front of your mind but it’s not far either.  Every day things happen that cause  you to remember your overall situation.  Driving past a cemetery?  Check.  Wondering if the upcoming event/holiday/birthday will be his last?  Check.  Wondering if any out of the normal behavior is from “symptoms” or the acts and mind of a 5 year old boy?  Check.  Hearing a story about children being sick or dying (of any cause)?  Check.  Praying for him at night, asking God (out loud) to keep him strong and healthy and then putting my hand on his back (nearish some of his tumors) and silently saying, “heal him”?  Double check…check.  It isn’t ever far from your mind.

On the completely other side of the spectrum are the days when his life hung in the balance.  Whether it be his original diagnosis and early hospital visits, the ravaging effects of chemo, the “minor” surgeries and procedures, the scans that revealed both great and not so great results, the broken femur, the collapsed lung, the fevers and emergency room visits, the stem cell harvest, the extended undetermined hospital stays, the hearing loss, the diet changes (remember the 0 fat diet he had to be on?  Still the hardest extended time for me.), the changing of his dressing for his broviac line, and the night that changed everything.  If you’ve been with us you know that on August 10th, 2011 he underwent surgery as a last ditch effort to get the tumors out.  Early on he lost a kidney and later he almost lost his life.  He was in a sedated coma for several days ended up in ICU for 10 days.

On that night and for the next several days several hundred people joined our “Pray (and more) for Trey” facebook page.  When I have posted recently on the depths of dealing with a “terminally ill” child my website has received as many as 412 visits in one day.  It is something people want to read, understand, or at the very least observe.  People have many different reasons for why they read but when things happen, more people get involved.  However, there is a third component to this battle against cancer/”terminal illness”.

This component has always been there but we have not written much about it.  Sure, when it is go time and he is in heavy treatment or grave danger it’s one thing.  The fact that his life is tenuous at best never being far from our minds is another.  Yet there is another burden that we bear.  It is the day to day inconveniences that this brings.  People can think that just because his life isn’t in grave danger…at this moment, that all there is are the “never far from your mind” thoughts/feelings.  Not true.  It does, though not greatly, impact every day.

How so?  Allow me.

1.  Every week he goes to the hospital on Monday for his experimental (and so far wildly successful) medicine.

2.  Every week he goes to the hospital for physical and occupational therapy on Tuesday.

3.  We always have to be careful around his “button” (medical access port on his upper chest).

4.  Our children are wondering where we are going on vacation this summer when, through some great benefits from our Make A Wish trip last spring, we had several great trips last year.  However, we do not have the outward resources nor do we have the same monetary situation we had a year ago.  Do we take them to the beach (we went to Virginia Beach last year but only for a day) and let the boy (and his brother/sister) experience a “typical” summer vacation?  We have explained that last year was an abnormality and that most people don’t get to go away every year…if ever.  Yet, how many “every years” does Trey have left?  Is it worth the $$ hit?  Are we just setting ourselves up for the same thing next year?

5.  People want to know, and I’m much more often than not happy to tell them, how he/we are doing.  It’s hard to know how much to say without taking up too much of their time but also give them a fair report. Either way, each conversation takes time in our day.  I AM NOT SAYING to not ask, it’s very nice that people care.

6.  Keeping Bella and Joe mentally and emotionally stable and safe given what they are going through and what they very well may face is exhausting if not maddening.

7.  There is a modicum of paperwork and administrative crap that we have to wade through from time to time that just blows.

So…when you think that we are going through life like everyone else, we are not.  When you think that we are wearing sack cloths and ashes, we are not.  Yet, just because the battle isn’t “active” it does always wage on mentally and physically.

We appreciate your involvement to whatever degree you are, in fact, involved.  All I ask is that you continue to apply what is working in your heart to your own life and allow our “ordeal” (to say the least) to be used to its greatest ability.

Trey keeps trucking on.  He is doing great.  He knows the buttons that each family member has and freely pushes them, manipulating us all to his great delight.  He and I went to 4 parks in 2 days last week (3 in one day).  He loves the warm weather and playing in the sprinkler and with the swingset.  He is doing great.  Thanks for checking in.