Let's Carpe the Hell Outta This Diem

Fact: 61% of children who received living donor liver transplants between 1997 - 2007, before the age of 1 year, have survived beyond 10 years, post-transplant, with the original graft. With medical advancements and technology, that percentage is improving with each passing year.

I look at this number and part of me, the bigger part, thinks: "The odds are in her favor." Another part of me cringes. The reality is that the odds of my daughter outliving me are less than 50%. The likelihood that she will need another liver transplant, someday, to keep her alive is high. There's also an increased likelihood that the medicine that keeps her from rejecting these transplants will cause a life-threatening side effect, like cancer.

For the first years of her life, we lived in "survival mode", not focusing on the future. Only trying to get through the present in tact. We have entered a new phase in which we are forced to see the repercussions of the procedure that saved her life. Not only the physical repercussions, such as a shorter life expectancy or scar tissue adhesions from invasive abdominal procedures that will require consecutive surgeries through out the rest of her life, but the psychological and emotional repercussions and delays in some areas of development. 

There is hope, though, through medical technologies and advancements. New therapies are being developed and tested that have the potential to even replace most of a transplanted organ's cells with the recipient's own stem cells, therefore, essentially making the transplant an actual part of the recipient's own body, completely eliminating the need for long-term anti-rejection medications as well as the risk of rejection. There is even speculation that, unlike stem cell transplants prior to transplant from a living donor's bone marrow to the organ recipient, transplant patients who have been on these medications for years may be able to benefit from these new advancements. 

While we hold on to this hope and pray that, someday, our fears will be a thing of the past within Kai's lifetime, the reality of today is hard to reconcile. The emotional strain and stress is becoming apparent and taking its toll. It can be depressing and often isolating, as much as we try to fight it.

Despite that, we must learn from this experience… this journey. To cherish every moment. To live in the present. To appreciate what is, here and now. It is echoed in many languages across many cultures: "Carpe Diem", "Joy de Vivre"…  Because, the reality is - regardless of our individual situations - that is all any of us has in life. And, there are no better teachers of this than our children.