Later Life

Rob, on Memory Pebble, has expressed his concerns about the future when his and Lauren's son Fergus is supposedly recovered from leukeamia. This has been a huge niggle at the back of my mind and now is the first time I am going there ...

As he quoted me, I'll quote him ...

"Even here, with a year of treatment to go, and no major scares to-date, and prognosis (hopefully) good, it's clear that we will never be the same family we were before all this. Which is not to say that something is ruined or damaged. Just that it's different. Our 3-year-old daughter is growing up in a world that is weighted, in some ways, toward her brother, toward her brother's illness and all the secondary bullshit that goes with it. And our son, already such a cause for concern--a unique, wonderful, sensitive boy--will be affected by this stuff in ways we will not see for years. Two questions among many:

How will this experience affect his relationships with his peers? Studies show that kids who have had cancer live more isolated lives, have fewer friends, etc.

How will these chemicals we pour into him affect him in the future? We've already seen that they have messed up his neuromuscular abilities (a physical therapist earlier this year said he had the gross motor skills of a three year old...he's six), but what about his brain? We see temporary affects of certain drugs when we give them (several days after his 24 hours of methotrexate he can get spacy and inattentive), and sometimes I think his drawing (while still prolific and wonderful) has become less precise over the last year.

But mostly I worry about the long-term affects from all these drugs, and I am particularly creeped out by what goes into his spinal column (currently he gets chemo in his spinal column once every 12 weeks). Studies have shown a higher incidence of learning difficulties among kids who have had chemotherapy in the past, and it breaks my heart to think of Gus, who knew the alphabet at 18 months and can read just about anything now, struggling to think, or to pay attention, or to remember, or to learn.

Finally, the thing that may never go away is this lingering low-level fear that the other shoe is about to drop. When does the fear of relapse or scary complications go away? After treatment finishes? Doubtful. After five years? Maybe. But my guess is it will always be with us, to one degree or another. Even those of us whose child is handling treatment well--has never relapsed, has never gotten an infection that couldn't be fought off--dread the day when the delicate balance is lost, and we spin into a nightmare scenario. Hopefully it will never happen. But on some level we always have to be prepared. It's life during wartime."

Until we die Rob ...

As a result, I went to the "Survivor" pages on Patty's Pediatric Oncology Resource Center (link on right) and just looking at the titles of her bibliography makes me depressed.

You will see me blog more on this, as I am also sure Lauren and Rob will. Slowly, I'll get through Patty's references and talk to our consultant ... but tonight this is depressing and I don't know what to say to Nanda ...

I'm scared.

P.S. Lucia, here's a new word to discuss - "survivor".