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My wish is that I am remembered,  not for all that I have but for all that I gave.

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Time Hopping….Updates.

Seeing his small face and sweet smile is like taking a sledge hammer to the walls I’ve built. I have learned not to get your hopes up. To be optimistic. To pray. To believe. To never give up. To hold on and to stay strong, but never make an assumption. Life changes so quickly.

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People say all the time “I don’t know how you do it”. Truth is, I don’t have a choice. This is life for me. For us. Waking up, packing up, loading up, and driving. Only to wait and hope that they may know something new. It has become the norm in my life. Not easy, just normal. Chance was very young when he got his diagnosis. Things have just kept moving after that. Not to say life hasn’t been amazing but it just kept going. Life has a way of doing that. You wake up one day and it’s been four years. Familiar with the app “time hop”? Me too. Just this morning a picture from three years ago came up and it was of Chance. Small, still had baby fat on his cheeks, eating a donut in the hotel room the night before a surgery. It’s weird how that happens. Seeing something and going back in time. I remember each doctors appointment. Each visit, and every surgery. I try to push certain things into the back of my mind. Not as though they haven’t happened, but to make it less heart breaking. With each trip, and each surgery he becomes more agitated, more upset. It gets harder.

 

We are looking at number 15 in the very near future. It was supposed to be on the 29th of December, but it has been postponed until they get the new machines in. To give an update of all recent events, we’ve ran into some other seemingly “small” issues. After several kids in his class came down with the flu, the instant he ran a fever went to the local ER. No flu, no strep, everything was normal. A chest x-ray showed us a small lesion in his lung. Of course the first question was “how did this happen?” followed by “what do we do now?”. The answer was simple, find another doctor to answer them and so, we where on the road again. This time we found ourselves in Pensacola at the Numours Childrens Hospital.

 

 

 

Hands down, the most family oriented hospital I’ve ever been too. We felt safe and comfortable the moment we opened the car door. After meeting the doctor and running several tests, we where told that the “lesion” is easier explained as a hole. We where home bound. Happy, and hopeful that two weeks of medicine and a follow up would show that it is gone or at least shrinking. Fast forward, that’s been a month ago. Just got the call yesterday that it (the hole) is still there. I’m unaware of any details other than “it is still there”. They’ve asked that we come back. I’ll be leaving Sunday afternoon to make the drive back out. Obviously, I’m unsure of where that leaves us.

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Once these new findings are discussed we are still looking at the surgery for the 13th of January. In some way I feel like we’ve made no progress, other times I feel like we’re making leaps and bounds. There are so many new findings in the medical world every day. They have come up with a new treatment option and seem optimistic and genuinely hopeful that this will make a difference. Still no word on a “CURE” but hey, progress is progress. I appreciate all of the love, support, and prayers that have been sent up for Chance, and for us as a family. I ask you to continue your thoughts and prayers as we move forward in our journey.

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