Downs and ups

It's been a bit tough the last few days - the energy that Emma had those few weeks ago, at the last post, has dwindled after being hit weekly with the intense chemo regimen that is par for the course for this phase. 

She is now done the chemo/treatment part of Consolidation and is due to have the Bone Marrow Aspirate (BMA) this Friday, although it depends on her blood counts. If they are not where the team wants them to be, the counts will be reassessed Mon/Wed/Fri of next week. As mentioned, the results of the BMA are a major juncture in her treatment. It will either be MRD negative (a good thing) and she will continue to the next phase of the treatment protocol, called Interim Maintenance 1 (IM1). If it is MRD positive (not a good thing), she will get a round or two of something called Blinatumomab via her port/IV and we will be preparing for bone marrow transplant. This waiting is excruciating. 

Along with all of this, Emma had been feeling extremely fatigued, Sunday and then Monday for sure - so very tired. We went in to the Pediatric Medical Day Unit on Tuesday, thinking she may need a blood transfusion to perk things up, but the bloodwork did not show that she needed that. Then Tuesday night, she spiked a fever, so in to ER we go (in leukemia patients, fever is an emergency - their body/immune system cannot fight anything off, so need to get to ER and have antibiotics started and search for cause of fever immediately). She is still admitted, waiting on swabs and daily bloodwork to tell us what the plan is in terms of going back home. She is still very tired and nauseous - not able to eat much, which is a concern as she is a slight body type to begin with, she doesn't have room to lose and good nutrition is important for a body that is going through these intense chemo treatments.

On the positive side - Chris's sister/my sister-in-law/kids Auntie Ingrid has come for a visit!! All the way from Sydney Australia. So so good to see her and have her calm presence here. Poor Emma is doubly disappointed that she is in hospital and with such low energy while Ingrid is here, although of course people can visit. It is absolutely heartbreaking all the loss and disappointments and frustrations that are coming with this diagnosis and brutal treatment, coupled with the unpredictability of this type of admission/setback. Emma is feeling down, but I also know that once she starts feeling better, her true self comes forth with her wit and silliness, artistic urges and interactive energy. So we will wait this out until the better (or improved) days and hope that they show up sooner than later.