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Feb 13, 2018 Latest post:
Sep 12, 2018
2/13/18 Update: We are hopeful that, 18 months after surgery #5, we are begining to see significant improvement. Keep the payers coming!
12/2016 Update: After Samanth's 5th open heart surgery, her PVS returned. She is back on Gleevec and we will continue to fight the good fight. The next step was for Boston’s team of Drs and surgeons to conference on Samantha’s case and make a decision on which surgery they would recommend for Samantha’s next step.
2016: Samantha is still doing well, and the team in Boston has decided that she is ready to have her Fontan redone. There was discussion on time frames and they feel that waiting another year would not benefit in any way that would outweigh the benefit of getting her oxygen saturation levels back into the 90’s. She is currently in a really good place health wise. She has put on some weight and grown a little since stopping the Chemo drug back in February. This will go a long way in her recovery ability. Therefore, we will be moving forward with surgery and the official surgery date is August 26th. This surgery will take place in Boston, which adds to the complexity of planning and carrying out this endeavor. Many of you will ask us to let you know what you can do to help… Since we do not know how long the recovery will take (best case, we are looking at a 4 week stay in Boston, but it could months), we will be temporally relocating our family of 4 to Boston during the surgery and recovery process. We have been very fortunate and truly blessed with the tremendous amount of support we have received from EVERYONE when we reached out for support in the past.