High Bilirubin and Skipping Steroids

Charlotte’s monthly chemo visit was last Thursday.  Sean’s time taking ObamaCare calls is over, but I had already taken the time off, so we both went with her to her visit.  After, the plan was to get lunch and a quick stop by the Salt Lake airport for a TSA interview I had scheduled.

The oncologist came in for our visit and checked Charlotte’s heart and lungs and asked how she was doing.  We talked about the horrible rash on her face…again.  It’s not like it’s hard to notice.  Dr. Barnett and I have been talking about it since before Christmas.  Dr. Barnett thinks the dermatologist may be in error in blaming it on the steroids.  The dermatologist I took Charlotte to in November said that it was classic steroid dermatitis.  He said that discontinuing use of steroids causes her to get the rash about a week after she stops steroids.  He said to use a calming lotion and said that after 2 weeks, the rash should clear.  However, since we are on steroids every month, it’s a perpetual recurring rash.  Sitting in the oncologist’s office, looking at her pink rash cheeks and forehead, the oncologist told us to skip steroids this month, to see if it helps.  Dr. Barnett assured us that skipping steroids shouldn’t affect her treatment.  Apparently, half the kids in the practice are on steroids only once every 3 months.  Dr. Barnett thinks this is where leukemia treatment is going to be going in the future.

When Charly was diagnosed, they asked us to sign Charlotte up to their “study” treatment.  They assured us it was the same medicine and treatment that have been used successfully for over 30 years, but they try different protocols to see which scenarios work best with the least amount of after affects. Sean said the insurance wouldn’t cover study treatment and refused to sign the paperwork.  Charlotte’s been basically in the “control” group, receiving the “standard of care” treatment for leukemia.   Over the past couple of years, I’ve heard a few clues regarding the treatment for the clinic’s study patients.  Here was another clue to what might have been. Apparently, half the kids in the study are receiving steroids less often than Charlotte. 

I admit, I’m thrilled to skip a month of steroids, and not too concerned about skipping them.

Usually, Charlotte’s maintenance chemo appointments have been quick – only an hour on average – but today, Charlotte’s port wouldn’t cooperate.  The nurse couldn’t draw blood from the port, which has happened twice before.  In these instances, they order TPA, a solution they put into the port, which takes at least an hour wait while it’s ordered from the pharmacist.  The nurse puts it into Charly’s port and then lets the TPA sit for 20 minutes.  Then, they check to see how the port draws and flush out the TPA.  THEN they can take a blood sample to check her counts and administer chemo.  The two times this has happened before, the TPA clears any blood clots that are in the port.  At 20 minutes, the port was still being stubborn.  They decided to let it sit another 10 minutes.  I got on the phone and cancelled my TSA interview.  Since the appointment went so long, they told us they’d call us with her blood results.  By the time we left the clinic, we’d been there for 4 hours.  We grabbed lunch and headed out to the airport.

When the nurse called the next day with Charlotte’s blood results, she told us that Charly’s bilirubin levels were high.  So was her ANC level, she was back in the 5300s….dang it!  The ANC levels would suggest an increase in her chemo.  However, the high bilirubin would apparently require stopping chemo for a while – to allow her liver to rebound from the chemo.  The final call…they are keeping her chemo at the same level, and they ordered home health to come to our house for a blood draw in 2 weeks, in hopes that her bilirubin levels will go down.

So – we are avoiding dark thoughts of liver failure and remaining calm.  I will admit to buying Tangerine and Carrot Juice popsicles and V8 juice for Charlotte.  Sean is pushing the cauliflower.  It's not like they recommended a diet change, but we both feel anxious about it.