We were all thrust into high gear when Jack's biopsy in late November came to a halt after finding two tumors on his transplanted kidney. Fortunately, Jack's team was relieved and yet baffled to discover that these tumors were not as they suspected, PTLD (post transplant proliferative disorder) which often points towards cancer. It was advised that we still meet with Oncology and that we would regroup after the holiday giving everyone a chance to pause and consider our options.
Oncology has since suggested two mixed epithelial and stromal tumors, related to cystic nephroma. We understand this scenario to be very obscure, less than 200 reported cases (typically only expressing on an adult kidney in it's 4- 6th decade). Jack is the only patient in the pediatric nephrology group with this condition. Oncology's solution is to remove the tumors to eliminate the possibility of this becoming cancer. This would be a significant, complicated surgery due to the location of the tumors being near other organs. The Nephrology team advised against this plan as Jack would presumably land back on dialysis this year as it involves removing too much kidney tissue. Hence, the conundrum and the pause.
We head back to U of M on Jan 23 to repeat MRI and Ultrasound and hopefully work our way towards an answer. Our hope is that these tumors are not growing. Really, my hope is that they are shrinking. Is that possible? I don't know... but it seems to me that a n y t h i n g is possible. So, I'm throwing that out there into the universe. Keep your thoughts, good vibes and prayers around this possibility.
"How is Jack?" you ask. I always take that question to heart and think to myself... "well, what part of him?" I think the same thing when someone asks me this question. Our mind, our heart, our body all send off different signals. The beauty, the peace, the balance is when they all converge. (This is my daily, moment-to-moment project). So, he is amazing, outstanding, a perfectly healthy 12 year old boy who is doing every single thing he wants to do (minus unloading the dishwasher, taking 20 pills a day and + getting blood draws). However, on the inside, his labs are at times unnerving and there are two tumors on his kidney that don't belong. So, he's great.. but, he's vulnerable as we all are in any given day. I choose, most days, to set the lab results and tumors aside until there is something actionable I can do. Fear or love, it's a choice - a daily one.
I choose love.
He would want me to add "Go Vikings!" (whew!)
(and obviously he gets his moves from me. duh)
