Cole Update: (writing from St Louis!!!) Cole is doing great and weve pulled off a long anticipated visit home! Thanks to Wings of Hope we flew back to STL yesterday to spend the holidays here! While only staying one week, this trip is miraculous. A recap for those who arent clear on our tumultuous journey to get to this point. After Coles liver resection in Nov 2013, he struggled with numerous complications, including a bile duct leak. After trying to make the best of liver drains and stents for the first six months of 2014, an MRI in June revealed a portion of his liver wasnt draining bile at all and we decided that Cole would undergo a second major surgery to attempt to revise the liver surgery and fix the bile system. We had HOPE that surgery would fix everything and get him back to school and soccer and living fully as he had been despite having cancer for so many years. That surgery at end of June 2014 was nearly the end of Coles life. There were many unexpected complications in the OR and Cole almost didnt make it out alive. The days and weeks after he was very critical and not expected to survive. He defied, as is his m.o., and went back into the OR four more times in the first week to complete the repairs, now just trying to save him, if they couldnt fix him. He remained in PICU for about a month and had many post surgical life threatening complications, including bilateral pneumonia, collapsed lungs, pleural effusion, all which he wasnt expected to survive. He had multiple chest tubes, bronchoscopy and a vats procedure. He had three holes in his belly that had become fistulas, draining food and fluids everytime he consumed anything and even when he didnt. He went weeks without being able to eat, and all attempts at a feeding tube created more problems. His body was and still is given nutrition via iv. Defying every expectation, after 86 days in the hospital, #ColeStrong prevailed and he was discharged, but his liver irreparably damaged and his health very frail, and wed learned that a tumor in his spleen was growing. Wed gone to such lengths to try to get him cancer free and it was in vain, because now his body is too weak to endure further treatment for this newly discovered tumor. After all hed been through, we knew his only chance at surviving with any quality of life would be to remain in Charlotte in the care of the team that had fought so hard for him. At the end of October Cole developed sepsis from a bile blockage in his liver, which was now no longer functioning well at all due to the damage and scar tissue from the surgeries. He returned to PICU for the 5th time in six months, and we were told the sepsis accompanied by kidney failure and ARDS (lung complications) would be fatal. They were wrong. Cole recovered. At the end of November Cole asked to come home to visit for his birthday, but decided against it when he learned that we had no expectation he could survive the trip to make it back. He asked instead to try to come for Christmas, and at that time his health was so fragile none of us really expected hed be alive by Christmas. We were wrong again. A new liver drain placed early December miraculously helped turned things around, and Cole has improved and regained strength to the point that he was healthy enough to make this most important holiday trip. Being home today is truly a miracle, as no one even expected Cole to be survive through the many ups and downs of the last six months. While he still has two external drains coming of his liver, two ostomy bags on his abdomen that catch the leaking intestinal contents from his fistulas, and requires 16 hours a day of TPN nutrition, hes here still living, smiling and making the BEST of every day. Hes now regaining strength, hes walking more, hes eating more, and we have HOPE ALWAYS that hell continue to defy and overcome. I hope this long rambling helps you to better understand that being home, and giving Cole the chance to see his friends and family is the BEST gift ever. This is the most important Christmas ever, and maybe Coles last. The only thing we know for sure is that Cole defies all expectation, so thats the expectation we hold onto, that hell continue to. Thank you for praying and cheering him along through it all, thank you for the generous financial support that has helped us so much, and thank you for never allowing us to feel alone in this fight. We have so much to be thankful for, and so many reasons to fight, the main one being, its what Cole has chosen. Though life offers him no promises, he chooses to fight for every day. Though Cole knows fully the challenges that he faces, he would rather die fighting than give up. And despite everything, thats why I believe hes #StillWinning!!! #ColeStrong Merry Christmas Coles Team. May your holiday be as blessed as ours.
Posted on: Tue, 23 Dec 2014 14:06:01 +0000
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