Day 450 - And then there were two

     Yesterday Evan had his monthly chemotherapy/check-up at the clinic and we received some really good news.  The primary oncologist for Evan gave the approval to pull his Voriconazole medication.  This med had to be timed around eating, which caused scheduling issues for us.  We administered it at 6:00 a.m. and 6:00 p.m., meaning meals took place on the 7s.  Now we are able to eat meals at the times we wish without fear of impacting bedtime, appointments, school, etc.

     With the Voriconazole being pulled that leaves us with daily Mercaptopurine and weekly Methotrexate.  By pulling the Vfend I'm also cautiously optimistic that many of Evan's skin problems will start to clear up.  Our doctor noted that his chemo meds have a common side effect of rashes, but that typically hasn't been the issue for us.
     While Cristy and Evan were at his appointment yesterday Cristy called me on speaker phone and I was able to talk to his doctor.  Overall he seemed very pleased with how Evan looked.  His ANC was a little high (3.0), but we were told not to worry unless this persists for a few months.  If it did they would simply adjust his dosages.  Since children are always growing this is a common issue and one that they deal with as needed.
     Evan has a couple upcoming scans and appointments to verify that his fungal infections are either gone or have remained stable and Ortho is going to take a closer look at his ankle to see how the bone looks structurally.  Each day Evan continues to look better and we're so proud of the man he's growing into.  This is a time where we don't want to get ahead of ourselves and will continue to take things one day at a time.

Monthly infusion time.

     While on the phone with Evan's doctor I was able to ask about the CAR-T cell therapy.  On our current path Evan will not need it, but it comes with its own complications.  One is a dropping of blood pressure and another is fatal infections.  The procedure eliminates all blood cells, good and bad, before the re-programmed white blood cells are infused and have time to multiply.  The doctor estimates it will be about 15 - 20 years before the process is refined enough to make it a more viable option.  It's considered a last ditch effort in its current form, but I look forward to the day when it's the preferred approach.  I'm also hopeful it can some day soon be engineered to tackle tumor based cancers as well.
     I wanted to remind everyone that September is Childhood Cancer Awareness Month.  Despite our personal struggles there are families that have suffered much, much worse than us.  If there is anything you can do to help a family or organization, even kind words, it goes a long way in helping motivate and inspire those effected.

Our month of gold.