Then she handed over the camera for me to test out while she was off and running with the dogs, the way a 9 year old girl should.
Isabel has a blood draw tomorrow at Oakland Kaiser. It will mark her two years off treatment, though she technically finished in March. When a child goes off treatment for leukemia, the chest port is often kept in place in case of a relapse and the need for more chemotherapy. Isabel's chest port was removed when she was hospitalized just weeks before she was scheduled to stop all chemotherapy and finish treatment. Her chest port was infected with staph so Isabel went into surgery to have it was removed and ended her leukemia treatment a bit early while inpatient.
The next two years were the wait and see years, our fingers tightly crossed and every wish we made through a tunnel or on a hay stack were spent on wishing for the cancer to stay in our past. Isabel is not yet classified as EFS, or event free survival, but she is well on her way as it's been 4 years since she achieved remission.
Once Isabel reaches 5 years from remission, the chance of relapse is slim to none. The highest rate of relapse for acute lymphoblastic leukemia is in the first two years off chemotherapy treatment. When Isabel went off treatment, Alan and I met with the oncologist to help with the transition from patient to survivor. We talked about relapse as it was a very real possibility at the time. He said we would most likely go straight for a bone marrow transplant and since Gabriel isn't a match, she would need a MUD, or matched unrelated donor.
I couldn't fathom not worrying about it or even going a day without thinking about the chance of relapse. I would play out the scenarios of a second round of fighting for her life. I tried to imagine the terror of getting the news for the second time. It would be so much worse because now we'd know what we were in for and know exactly how torturous and horrifying childhood chemotherapy treatments can be, and this time it would be harsher with much more time spent hospitalized for the transplant. Her chances of survival would go down significantly. I was terrified and did not believe it would ever subside.
And now it's normal for me to go days, weeks and even months without considering the possibility of Isabel relapsing with leukemia. She's doing amazingly well and is a true success story.
