Friday Update

The day is not over yet and it is already too long. We started at 9am this morning and the best part of it was that we were able to visit with our friends Annie and Joe. After the blood draw this morning we headed to CVDL for replacement of Trish's Hickman with an apheresis catheter. It is essentially a Hickman, but the tubes are bigger (thicker) to accommodate the faster flow of blood during pheresis. We showed up on time for our 11am appointment, but Trish didn't get taken back till 1pm and started until 2pm.

We finally got back to IPOP around 4:30pm and she is still waiting to start her red blood transfusion. One of the reasons we were here at 9 this morning was because they thought that Trish may need platelets to bring her counts above 50 for the line placement. She was at 68 all by herself, so no transfusion was needed.

Her hematacrit (packed cell level or reds) was low though at only 27, so she is getting a unit of red now and may get two more on Monday morning if she is below 38, for ECP they want her at 38. So we will likely start our day early on Monday as well and the pheresis will last at least 3-4 hours, so it will be a long day as well.


ECP could very well be our "Lorenzo's Oil" magic cure or it could be a bust. The oncologists are pessimisstic and the dermatologists are optimistic. No one really knows what to expect. We just know that we have a lot of folks with strong beliefs behind us and a lot who have no belief who now finding themselves asking for divine intervention.

Dr. Meade has scheduled another transjugular liver biopsy (not fun) for Tuesday. The hope is that they can find a reason other than GvH for her elevated liver function and that it is something they can treat conventionally while Trish is getting ECP. Trish's nurse practitioner also mentioned that Dr. Meade is considering putting her on another immuno suppressant med while she gets ECP (likely Enbrael -- that medicine for psoriasis with the flying character trying to imitate superman in the commercial).

Trish is starting to be a little more than scared, as I know we all are, but she continues to be determined to give it her best shot. Again, thank you everyone for your continued support and prayers.