Day 397 - Let's see how the steroids treat us this time

     Steroid treatments have not treated us well in the past.  Typically it has weakened Evan's immune system, allowing for some of his previous infections.  We started the pills back up on Friday following his appointment for IV based drugs and spinal tap.  I spoke with the nurse practitioner via phone while Cristy was there and she said from day 2 of steroids until about two weeks after we should be more cautious.  Evan's blood counts looked great.  He had a much lower ANC, however it's the level the medical team has been striving to achieve.  This means that the dosages are probably sized correctly and having the desired effect.

Heading out to catch lightning bugs.

     The medical team has back and forth discussions about Evan quite often.  Knowing his medical history with steroids and how it's a fundamental part of his on-going treatment they are frequently torn between minimizing infections or risking relapse.  Interestingly the NP mentioned that the committee that oversees treatment durations is closely evaluating whether a 3 year treatment plan for boys is still necessary.  Girls with B-ALL only have a 2 year plan, while boys are 3 years due to their higher odds of relapse.  Because of Evan's history of infections I have a feeling the medical team will be following the findings and data extremely closely, granted we only recently passed the 1 year mark so we still have a ways to go either way.  

Nolan looks a little unsure in this photo.

     This morning Evan had a MRI appointment.  The purpose of this is to discover any lingering infections that we might not be aware of.  Results will be sent to the doctor this afternoon and I'd anticipate getting a call back with the findings in the next 48 hours.  Cristy and I aren't even sure which team is taking the lead on this (Infectious Disease, Ortho, Oncology), but my guess is ID.  I certainly hope nothing is found.  His body has been through its fair share of surgeries.

Wakey wakey

     Next week Evan has an appointment with the ID team.  His newly assigned doctor will give him a close look and recommend any changes to his medication plan, conferring with Oncology.  We still have an issue with his red skin and how it interacts with his chemo drugs.  I'm open to making changes, assuming the fungal lesions and pockets of mold are under control.

Passing the time at the clinic.