June 21, 2016.

We've been home for almost a week and surprisingly, it feels like it's flown by.  We are still in a holding pattern while we wait for all of the pending tests, etc. that were sent out so there is no new information. 

The main question everyone is asking is, "how is Cole doing at home, and is he feeling better?"  Honestly, that's kind of tough to answer.  Of course being at home is always better than the hospital, and in general, I think he's doing ok.  But he's not our Cole that we know and we still have an unknown journey ahead of us.

The steroids have definitely set in and he's grumpy most of the time. But hey, who wouldn't be?? And he still has pain in his side from the 3 procedures & 2 chest tubes, and it radiates in his shoulder which seems to cause him the most pain along with his back.  He lost so much weight, weight that he didn't have to spare, so he is just bones so I think it makes it hard to move when you have barely any muscle left and his body is sore. It's just hard for him to get around and he moves so slowly. Just not the Cole we know.  You can literally see his entire spine, every rib, bones throughout his body, and I can literally wrap two fingers around his bicep. Breaks my heart to see him so fragile.

There are moments where we see the real "Colio" that we know, but they are few and far between. He recognizes that he feels bad and even acknowledges when he feels himself, and we see a small smile. It is still so strange to be in this house and not see him running around playing sports, throwing balls around and falling on the floor as he catches them, and just being active. This is not a kid that just lays or sits around, but that's who he is right now. And he does NOT like it.

I can't begin to explain the feeling of seeing your child in pain, and feeling helpless as a parent because you can't make it better or take it away. We comfort him, provide him what he needs, and just try to make him feel better as best we can.  Most of the time he just looks lethargic, with a glazed look on his face, or just sadness or pain.  It's incredibly painful to see, and I want nothing more than to take it all away, but I can't.  Anyone that knows me knows that I am very strong-willed, stubborn and tough. And I always need a plan.  I need to know what we are tackling, and then, LET'S GO 💪🏼    I think I'm as ready, as I can be, for whatever the diagnoses and treatment plan will be. 

Cole has continued to be as strong and tough as we know him to be. But, he's just tired..  Tired of the numerous pills he has to take, tired of his tummy hurting because he needs to poop, but then he's also hungry, tired of not being able to move around very well and it hurts, tired of the pain, and tired of having these tubies in his arm. I mean, people go home with a PICC line like no big deal, but let's stop and think about this for a moment.. This kid has a CENTRAL LINE in his arm with a catheter that goes straight to his heart. And WE are responsible for flushing it, taking care of it, and protecting it from infection. This. Is. Crazy. Stuff.

Let's not forget the fact that this is the first summer he's had to miss all of his sport camps that he loves to attend (football, baseball, basketball, & soccer camps), playing summer baseball on a team, swimming every weekend, and just enjoying activities and being outside. He asked when we can book our next vacation.. Well, I have no idea.  This is all the stuff Cole lives for so it's so hard to see him spend his summer this way.  I have complete faith that he will get back to these things, and return to the sweet, spunky active boy that we know.

I refuse to let my mind go to the bad place of thinking the worst..but I battle these questions inside... What if it is this rare, odd tumor(s) that people aren't familiar with, and what will that mean? And what if it's spread? What if it's cancer? What if he has to lose part of his lung because that's a very real concern for them? Will he be the same when this is all done??  It's so surreal that we are experiencing this, it almost makes me feel numb. To have a perfectly healthy kid that has barely ever been to the doctor, and to now go through this unknown medical experience. You really do think, "that will never be my kid."  Until it is your kid...

I cannot answer these questions and I have to keep faith and believe that God has a plan for Cole. I have to trust him in His hands and know that He will be with him through all of this. I can't fix whatever is going on in my child's body, so I must find peace and comfort in the fact that I KNOW the medical professionals, and God, will take care of my baby. 

"Cast your cares on the Lord and he will sustain you; he will never let the righteous be shaken." --PSALM 55:22