Hello to All and sorry for the delay in posting. Our journey has taken, yet another path. As many of you know, Bo has not been feeling well. He has been battling gout-like symptoms and not feeling like himself. Last week we finally made it up to Duke to talk with Dr. Palmer, our transplant doctor and look at some of our meds. He didn't seem overly surprised about Bo's "gout" it appears that the anti rejection meds have been known to cause problems. He has increased some of his other meds to hopefully elevate the swelling and pain. In the meantime we ran extensive tests on his joints, all came back clear. And we also performed a CT scan to check Bo's lungs. Bo's lungs are looking good, but this is where our path changed. When you perform the CT scan it is upper abdominal that shows all organs above the waist. Here comes the tough part, the doctors have found spots on Bo's liver and spine (bones)
Deep breath everyone, In and out....in and out...
It appears Bo has cancer on his liver and spine. At this time we are unsure if it the same cancer mutating and spreading or a different cancer due to the immune suppressants. Today we went up to have a PET scan and brain MRI. It appears to confirm what they "accidentally" found on the CT that there is cancer (nothing will be 100% until the biopsy is done, but we are pretty confidant this is cancer) Good news, he appears to only have it on his liver and spine. Since it was found accidentally they were afraid it might be elsewhere. Another bit of good news is that the spot on the brain appears unchanged...we are hoping that means no cancer there just some abnormality from everything he went through with the transplant.
I know this is a lot to swallow and trust me there are not 3 people (Bo, Addi and myself - along with family) that did not want to ever share this news with you, nor so quickly, but do know we are strong and fighting. After we spoke with the doctors they immediately started Bo on chemo, today to be exact. He is trying the last chemo he took that he responded to positively before transplant. We are optimistic that he will react in the same way. We will do this again in 3 weeks and then at 6 weeks perform another CT scan to see how he is reacting. While this continues Dr. Crawford is setting up for a biopsy and getting him established with Dr. Potti in charge of Duke's Genomic project. (I could write a novel on this, but in a nutshell they take the biopsy, study it and create a treatment plan specific to your DNA and Cancer. This takes a couple weeks to do, so in the meantime chemo)
I know this is a complete and utter shock to all. We have had a couple days to get over the initial shock, and I am always happier with a plan. As you can see Dr. Crawford and Susan are on it. We have options. As I have told many of you, "we are not "there'."
Please understand we do not have all the answers, more tests will be done and we will continue to work with our transplant doctor and oncologist together. We have been riding waves of emotions and are truly sorry to all that support and love us that this cannot ever be simple. But do know, we want you to fight with us, pray with us, hope with us and believe that We will all overcome.
Love to All
Christi, Bo and Addi
PS We would call everyone of you individually, but right now we are just holding Addi dear to us and enjoying life...