We had a fabulous Christmas in Seattle. My dad, stepmom and Melissa were able to fly in and we had a traditional Christmas dinner which was generously donated by the volunteers at the SCCA clinic. Every patient family at the Pete Gross House received a turkey, stuffing, mashed potatoes, pumpkin pie, rolls, etc. (Thank you so much SCCA donors and volunteers!) I’m normally quite festive during the holidays, but it’s been hard to get into the spirit this year. Luckily the holiday spirit kicked in in the nick of time and I had a lot of fun.

The only new issue is that my blood test is showing that CMV might be acting up. This is a bit complicated for me to explain, but here’s my attempt. Humans have all kinds of viruses and bacteria living in their body. Healthy immune systems make sure that these buggers don’t run amok. Unfortunately with a weak immune system, transplant patients don’t have this protection. CMV is a common virus that infects 80% of the population. It normally doesn’t affect anything, but can cause major issues for transplant patients. Cord transplant patients are more at risk because the cord blood stem cells I received don’t have T cells to fight off this virus. My doctors monitor the CMV activity in my body very closely to make sure it doesn’t flare up. Dr. Ram said that every single cord blood transplant patient he’s seen has always had to treat CMV, so I am not a unique case. I am on this IV medication called Foscarnet which is very taxing on the kidneys. As such, I have to get 2.5 hours of hydration before the medication and 2.5 hours of hydration post-medication to flush my kidneys. Basically it takes 6 hours for each dose. I have to do this twice a day! It is a job in itself – setting up the IV, switching the bags, etc. I have to do this for 7 days and if my next tests show a drop in CMV activity then I can lower my dose to just once a day. I’m just glad we can do this at home so I’m not stuck at the hospital all day long.

Other than that, things are going well. My counts are stabilizing so I don’t have to go in for transfusions as often. I still go to the clinic everyday for blood draws. My energy is great and my skin GVHD is practically gone. My doctors are slowly weaning me off of the steroids. I can’t wait to get off this stuff. I look like a swollen cabbage patch doll. I don’t even recognize my own face sometimes.

Take care!