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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Thank you.

They say “it takes a village to raise a child.” and that is very true. We are so blessed with family and friends that are quick to lend a hand, keep an eye on the house, help with CG, cook a meal, watch our dogs, and send up prayers. Each one means so much. The outpouring of love is always appreciated. Thank you everyone for the thoughts and prayers. We have made it home safely. I’d like to ask everyone to continue praying for Chance as we are waiting on some important news. I know I ask a lot, but God is still working miracles and I’m still believing in ours. Just add him to your nightly prayers or your prayer chain, or both. Just please don’t forget to add him. From our family to yours, thank you.

Recent update on Chance

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A special thank you to every single person that prayed for us over the past few days. When I ask for prayer for my children, I can assure you that I genuinely need the prayers. Wednesday morning Chance went in to see his pediatrician after waking up with almost no voice. We learned he had a small lump in his throat. Friday morning Chance had an emergency checkup with his doctor/specialist. Words can not describe how scary all of this has been. I’m woman enough to admit that I have been beside myself, crying and a complete nervous wreck. You never know true fear until it becomes your child. More prayers went up Wednesday night than I could count. I was told by our Pastor and our family that The Lord would take care of it and not to worry. Well, he did just that. The lump is benign and shrinking on its own. Praise the Lord! His doctor, with the help of God gave us the answers we needed. It came with a relatively simple explanation. The scar tissue from his previous surgeries (12 to be exact) is pushing against his voice box and vocal cords causing it to loose sound. We’re hoping to meet with a reconstructive surgeon in the next few months and have it repaired. Until then, we push on. We pray and believe that God is in control and Chance will receive the healing he needs. In the years we’ve been battling this, numerous times we’ve been on the brink of finding a new treatment option only to find out Chance is not a candidate. Recently there have been some positive results coming from UAB in Birmingham. We were told Friday that Chance may have an opportunity to meet with a highly ranked doctor there and actually have a shot at trying his treatment plan. In the weeks that come I am asking that everyone please pray for my baby boy. He needs and deserves his miracle and I believe it is coming. From our family to yours, thank you. From the very bottom of our hearts. Thank you.