Thursday, May 2, 2013

Minimal Residual Disease

What. A. Week.

A simple half day appointment and spinal tap turned into a 3-day stay in St. Francis.  So here's the best way I've come up with to explain MRD and how it affects Ben.

The first phase of treatment is Induction.  If you were to give us a letter grade on how induction went, we would get a "D-".  Technically we "passed" and are in remission, but we have to take the remedial courses now.

When diagnosed, Ben met the criteria for Standard Risk.  There is also High Risk and Very High Risk.  Because of his MRD, he is now considered in the Very High Risk group.  What this means is that he has a much higher probability of relapse and lower chance for a cure.  The numbers vary, depending on what study you're reading.  Here's another way of looking at it:

Notice how you have to be less than .01% and we're at .4% meaning ours is particularly high (meaning our cure rate is that much lower).

So we're now receiving a daily oral dose of chemo, and he will be going to St. Francis to get chemo through his port a whopping FOUR times per WEEK!

Here's the thing.  They are going to kill his immune system.  Kids who die of leukemia usually die from infection or organ failure, not actual leukemia cells in the blood.  They can kill the cancer.  The trick is not killing Ben.


  • Classified as Very High Risk
  • Lots more Chemo at Lots higher doses
  • More intense side effects
  • Lots more risk for relapse (relapse = lowest survival rates)
  • Higher chance a bone marrow/stem cell transplant will be needed
  • Even greater chance of infection and organ damage
  • More frequent clinic visits and hospital stays (we anticipate at some point being admitted for a month or two).
  • We were removed from all clinical trials, because we are no longer eligible.  (I don't know why this one in particular is bothering me so much.)
In other words:
Damnit. This is shitty.


We had a pretty incredible experience last Thursday.  First of all, Mike works for Phillips 66 and I work for OakTree Software on the ConocoPhillips Windows 7 project.  I left my job of 7 years in July; Mike left his job of 5 years in September.  We're both new to this organization.  So when our colleagues, supervisors, and work acquaintances learned of Ben's diagnosis, we were gratefully surprised by the outpouring of support.  Most of them have known us for only a few short months!

Mike's dad has worked for the company for decades (sorry, Richard).  As he passed an old friend in the tunnels a few weeks ago with his freshly shaved head from the Bald for Ben night, I doubt he would have ever guessed the chain of events that would take place.

Rob learned about Ben, about us, and about what our family was going through.  He took action!

Rob auctioned off swipes of the clippers on his hair!  When he first started, we all suspected he might raise a couple hundred dollars.  Instead, he raised a couple THOUSAND!  Plus additional donations to St. Jude's in Ben's honor!

His generosity and the generosity of his team and co-workers has enabled us to purchase this for Ben, who in a few weeks as the intensification phase begins will no longer be allowed to go to the park for risk of infection.
Big Brother Ethan is pretty stoked about it, too!

The remaining donations will go towards his medical bills.

Strangers to us, did this for us.  We're unceasingly in awe of what people have done in support of our little boys.