We count the numbers of doses of Chemo Therapy. We count the number of times they have invaded our children's spines with Chemo. We count the number of days between doses. We ask them to recount when blood counts are high and when they are low. We count how many days before the end. We count how far from the end we are. We count.
We count to control and put some sense to our world and to feel like we have some control. We like "to know" what is happening, or might be happening or what might not be happening.
Our world does not make sense to there has to be some sort of mechanism to help.
Treatment is easy. It is set out, it has a plan. It has steps and goals and procedures. It has something called a Road Map. Not quite AAA but darn close. It lets you know where you are going and how you are going to get there. Then some are luck to have an Advanced Nurse practitioner that gives you great calendars and a key to the Road Map. Yes, there are bumps and count failures and lots of complications but it is a plan. It has a defined end.
101, 121, 314, 151, 617, 181, 920, 212, ___, ___
Being off treatment is a different story. I am sitting here, counting down the days before Mary-Elizabeth goes back to college and I don't know what to think or how to react.
Now what? Do we count the transplant for the magic 60 month count down? Do we just hold our breath and count until the next long term side effect appears? We know the leukemia she had is gone. Will there be something else to show up? When will it come? Will we recognize it in time? Will we ever feel safe again? Shall I count my questions?
Maybe I will count the days until the worry does not greet me first thing in the morning. Lots will tell me not to worry, she looks great and it has been a long time and she will go forth and thrive. What is missing for me is the trust. I trusted before and that got us 57 months off treatment and a relapse.
If you are sensing of a bit resentment and anger, very good. Yes, my child has survived her Double Cord Blood Transplant. But there is a price for survival. No one comes out unscathed.
Okay, get back from the deep despair and anger Sally Ann, You have to clean out your car and pack your child for college. You have to see there through surgery on Monday. You can do it. You have done it so far and you can make this last lap.