Numbers

Myself and fellow editor Christy attended the 1st Annual Wilms Tumor Symposium, hosted by the Pablove Foundation last weekend.  I wish every pediatric cancer had this kind of meeting.  We as parents got to attend a medical conference with the medical professionals that chair the National Wilms Tumor Study Group.  As in the doctors whose names we have seen and heard since diagnosis. 

This crew included the one woman from Chicago responsible for reviewing the pathology reports and samples of every Wilms diagnosis in the United States.  Many families owe her a great deal.  Also in attendance the doctor who is the head of the group, the one whom often is the final vote in what treatment plan a child should be placed on.  To meet these people was a little intimidating, but exceedingly gratifying.  We heard from radiation oncology and about long term side effects.  We also heard from palliative and hospice care, they covered the whole spectrum of interactions and this disease.

What I want to share with you all came from a brief conversation with the man who reviews relapses and is compiling data on how, what, and where.  Relapse is important to me.  My son is a relapse data point on his charts.  I got to ask him things I needed to hear about how my son's cancer originally metastasized, and ask the hard questions about if it would have relapsed if we had followed a different protocol. 

At the end I asked him to confirm my son's event free survival rate.  I needed to hear that number again, to know my own team hadn't been softening the blow as they often do for parents.  he confirmed a range it was in, but no one could really know.  Then we had a conversation that I think eveyrone should have a chance to think about.

He told me, every child's survival rate is really 50/50, which sounds sobering, but in actuality they are either going to make it or they are not. One or the other.  All too often we get so caught up in, worried about which is more likely, but we can't know the actual statistic for our child.  each child is unique, their outcome unique.  Even if you tell a family the survival rate is 98%, somebody is that 2%, someone doesn't make it.  If you tell a family 25%, well, some do make it.  Survival rates are just a number, a statistic.  Good or bad, they do not decide if your child is going to survive this battle.


There is no survival magic eight ball.  Although he asked me to get one for him as well if I ever found one.


This conversation has marinated in me for some time.  It reminded me of a family who had been told their child was terminal, that the road was coming to an end.  They refused to ask or be told an estimate of how long their child had left.  They didn't want to be disappointed and feel robbed if the child didn't make it to the length they had been told, or feel they had rushed and crammed too much in when there was more time left to share. 

They just wanted to enjoy each day as a gift, with no expectation of how many more were to come.


Today I am thankful for today.  This gift of my son, of both of my children, of my family.  My son may live to pester me for car keys or he may not, but I have today, and no number can change that.