Day +21

Hi Family and Friends,

Paul and I wanted to post another update as less than 24 hours after the "good news" post, Ellie had a setback.

On Friday afternoon, just as Paul was handing over to Marilyn, in fact, Ellie became febrile, which then continued throughout the weekend. Then, her oxygen saturation started dropping into the 80's and she had to be started on oxygen via nasal prongs. A chest X ray was ordered. More blood cultures were taken as well as viral swabs. Ellie continued to be very unwell over the weekend.

Fortunately, the chest X ray was clear (showing no infiltrates), but the team was confounded as to what was going on.  Due to the continued oxygen requirements and ongoing fever, on Sunday night and seemingly out of the blue, our Haem/Onc specialist called the rounding registrar and said to give Ellie a stat dose of IV steroids (methylprednisolone) citing that she may be experiencing an "immunologic reaction" to the engraftment.  Fortunately, at the time of writing this, which is 24 hours post the steroid dose,  it seems to have done the trick. Her temperatures have remained gone and she was able to come off the oxygen this morning.  The bacterial and viral cultures will be back in a few more days. 

This "immunologic response" is not something we had been prepared for. All of our worries have been surrounding GVHD, not a reaction to the actual engraftment.  But, now we know (because Paul and I go crazy reading journal articles on EVERYTHING we can find when something new is in our path) that Engraftment Syndrome (ES) is yet another scary thing that can happen, with life threatening complications and potential organ failure. I literally have the vision of tiptoeing through a minefield in my head. I should mention however, that we don't think it's ES as she only had 1-2 of the criteria that encompass the syndrome, but we will be vigilantly watching for any additional deterioration. And at this point, she's actually looking better, which is such a relief. However, today Ellie's counts dropped down, instead of going up so the team has run "engraftment bloods" as which will take about 2-3 weeks to get results back. This blood test is usually done on Day +28-30 but even thought we are only Day +21, the specialist wanted to check them today. This blood test identifies if the graft cells are present in Ellie's blood, which then officially confirms that the transplant has taken. So again, we are waiting with bated breath as to what is going on and when/if she can be back on track to go home.

Thank you to everyone for the lovely happy wishes regarding the engraftment. It certainly has bolstered us! But, we also wanted you to know what was going on since the last update. Love to all, K+P