Lorenzo Acciai

All of our lives we have been taught to use problem-solving questions: How? Why? When?  Where? They have no weight, no meaning on the hematology/oncology ward. One quickly learns that there are no answers and no givens, no reassurances, just moving forward as best one can, trying to stay alive, trying to keep joy and optimism in the life that is so radically altered—and in the case of a beautiful, vibrant, athletic 19 year old, it is a challenge and a heartbreak.  For nine months he underwent an intensive pediatric chemo protocol, which although grueling, he did well with. Leukemia was a difficult thing to deal with, but he was going to do it with courage, beat the cancer, and get back to his life--we heard many heartening stories like this. We finally went home to Italy after nine months, filled with joy and hope for the future. Friends, fishing, dancing, running, biking, laughing…  But within 3 weeks he felt something in his eye, which tests showed were leukemia blasts in his cerebral spinal fluid—a relapse.  Stunned, shocked and tearful we returned immediately to UCSF to start heavy chemotherapy again, this time with total body radiation, and the search for a bone marrow transplant donor.

Nothing can quite prepare one for the vast implications of a bone marrow transplant. “You will be more tired than you have ever been, for at least a year”, “there will be many ups and downs, steps forward and back”…..we heard it, but could not fathom how all encompassing the process really is: physically, mentally, psychologically.  We thought we had been through hard times with the first chemo protocol, but it was nothing compared to this.  No matter how careful one is, the body and its new graft will work in unpredictable ways.  Some people sail through, which is what we (he was young, in great shape, good attitude) were planning to do. However, in Lorenzo’s case he became very, very ill with many layers of problems:  days of diarrhea, vomiting, loss of balance from no feeling in his legs, allergic reactions to transfusions, allergic reactions to medications…he was being nourished by an IV diet, which then gave the need for insulin shots.  The high dose steroids gave him sleeplessness and rolling hallucinations.  We were 90 sick, exhausting days in the hospital.

Getting out of the hospital is all one wishes for, but then once out, life is overwhelming in a different way. Suddenly, we were responsible for the things the nurses kept track of--complicated timing of countless medicines, taking temperature, testing for blood sugar, giving IV infusions, keeping everything scrupulously clean, cooking special foods, making sure he eats, drinks, washes, poops, exercises, (none of which he felt good enough to do). Like having a new born, but much harder, bigger, heavier, more complicated and needing to be reasoned with.  Trying to wake him to cajole him to do these things was in itself an effort. And the steroids had so completely wasted his muscles, the immune suppressants brought on such shaking that he was like a bowl of jello—everyday tasks and pleasures became herculean efforts.

Healing was slow. We were helped immeasurably at UCSF, both as inpatients and outpatients, by understanding doctors, nurses, pharmacists, staff, physical therapists, psychologists, dieticians…   We could, we were invited to telephone for helpful answers when needed.  The patient, cheerful support was incredible, what we call “the golden net” of care.

And here we are, at 218 days from transplant. Things are not as imagined, but slowly getting better. Still on lots of medication, his cognizance and humor have returned; we’re working on strength and stamina. He just had another light bout of GraftVersusHost Disease, but was able to handle it out of the hospital. Knowing that it is now a chronic condition is sobering. Some things have gotten easier, others remain a challenge. When people refer to adjusting to the “new normal”, I realize we are still trying to figure out what that is.  Worry about his getting sick again is always in the back of our minds and can make life a fearful place at times. Dust, food , water, people, sunshine, crowds-- thinking twice before doing most anything.  Sometimes I hope the day will come when this is a memory instead of a way of life and the definition of a personality.  I hope one day I will worry less.  But the important thing to remember, the miracle is that HE IS ALIVE!  My marvelous son is here with us.

In these months of struggle we have discovered a new world shaped by healthcare workers dedicated to helping, healing and saving people whose lives have been changed by a diagnosis. And because of this, because of them,  because of the second chance Lorenzo has to live a full life, we consider ourselves the luckiest people in the world.

Lisa Apatoff (Lorenzo's Mom)