Why You should Advocate for Your Child

If you are in the paediatric oncology world, you are told again and again that you must advocate for your child.  We’ve also heard from friends (doctors) that while parents can be “pain in the ass”, those who advocate for the patients generally tend to get better treatment.  We know this all too well.  We research what we must and often ask questions even if it is an uncomfortable one.  Generally speaking though, for me, the problem is delivery rather then the message.  Oh well, we have ample opportunity to practice.

One opportunity just took place over the weekend.    As you all know, Maya’s been getting 5-azacitadine (or Vidaza) for the pass year or so.  This is a chemo that we’re  “comfortable”  with.  That is, we understand well, how Maya responds to it.  We are also very aware what it has done for Maya; Nothing short of a miracle, really.

As is the case, a few times a year, Maya gets a Bone marrow Aspiration / Biopsy.  This past weekend, BMA coincided with the chemo.  The events over the past few days went like this:

  • Thursday.  BMA.  I took a nice photo of Maya pushing Propofol by herself.  ( I will post the photos…)
  • We also started Vidaza. So, day 1 was administered.  No probs… went home.
  • Friday morning, Maya’s creatinine level was up around 130. Maya’s baseline is 35 ish.  Creatinine is a measure of Maya’s kidney function.  If creatinine is high, it means that Kidney is stressed.  This level of creatinine is very high and is not something we want to see.
  • Since Vidaza is known to be nephrotoxic, the team stopped delivering Vidaza and we were sent home.

Creatinine level of 130 is high, especially for a child with a single kidney.  This level of creatinine is not something that we were comfortable with.  But, we didn’t do anything about it.  I had a nagging sensation, but I didn’t make a big deal out of it.  I thought we’ll keep an eye on Maya over the weekend.  Both Indira and I were tired.  It’s been a long and stressful week. I was at work and I wanted to go home to relax. It was my mistake!   I should have called Indira. I should have insisted on follow ups over the weekend.  It could have been bad.

We got lucky.  When we checked the creatinine level monday morning, it was back to normal.  It was back to 34.   Because we had a BMA, both Indira and I went to the clinic for a meeting with our hematologist.  The salient points of our discussion were:

  • don’t really know what caused Maya’s kidney to become stressed.  It could have been several factors including infection, Vidaza etc.
  • We should continue on with Vidaza this week.  However, since there was an “event”, we will reduce the dosage to 50%.
  • We can engage the nephrology team, after this round is over.

Us:

  • We dont’ know what caused Maya’s kidney to be stressed.  What can we do to determine the cause?  By reducing the dose to 50%, we are making an assumption that the Kidney stress is due to Vidaza, which is unfounded.    After all, we’ve had approx 12 rounds of  Vidaza without such an event.
  • Whether we go 50% or 100% dosage is not a significant issue to me.  Again, Maya has not had any issues so far.  What is more important to me is to measure the creatinine level on a daily basis to see if there is another stress event.  Since I don’t believe Vidaza to be the culprit, I don’t expect creatinine level to be impacted significantly.  But we should track across the remainder of the week.
  • I think we all collectively dropped the ball this past weekend.  We all should have been more vigilent.  Creatinine level of 130 is sigifnicant.  Rather than having this current discussion, we could be having a discussion about dialysis now.  We got lucky!  We should have monitored Maya over the weekend to ensure that her kidney was working rather than take the unnecessary chance that we took.

So, yes.  We got lucky.  I felt anger towards myself as well as the sick kids staff.  We should have known better.  Sick kids should have known even more better.   This is why we need to be one top of what’s going on.  It drives me bat-shit crazy that no one wants to figure out what happened.  Instead,  just drop the dose and just carry on.  There isn’t even a feigned attempt to determine the cause. Well… what did we learn today?  Nothing.   What if we have another acute episode of high creatinine level?  Dont’ know.  The protocol says, if there is an adverse event, reduce the dosage.  This is exactly what was done.  No one gets fired for following the procedure.

Even though there are days when dealing with our daily stresses is overwhelming, adding a kidney failure would have made things worse.

An over sight here could have easily have meant that we need to deal with dialysis for Maya on top of everything else.  That would not have been good for anyone.  To extend the possible outcome, if everything went well, it would have meant a kidney transplant for Maya down the line.  It’s not something we would like to look forward to.