Feeling Yuck! Day +14

This has been a rough week for Olivia (and for mommy). She feels terrible. There are brief moments over the last couple of days when I've seen a glimpse of my happy little girl but for the most part she's been very quiet and you can tell she's in a lot of pain. She is usurally able to tell me where she has an "owie" but she just lays in the bed and says "owie hurt" but can't tell you where. We've only left the room a couple of times compared to the hours we were spending outside the room just last week. The doctors say that this is the hard part, that things will start to look up soon. She's just exhibiting every single symptom of engraftment syndrome. The doctor on rounds this week on 5200 is Dr. Parikh. Olivia doesn't seem too fond of him and to be honest I wasn't really either but he's grown on me. He's so calm and rational and my lack of sleep and concern for Olivia are making me totally emotional and not calm at all. Dr. Parikh is also quite funny but I can't tell if he means to be or not. Talking to him always makes me feel much better. I found this little video clip of Dr. Parikh so you can see what he looks like, he's explaining his research interests are and gives some good background info on transplants for metabolic disorders (which is what Sanfilippo Syndrome is), here's the link http://nfctr.org/video/dr_suhag_parikh.php

Olivia has been running a fever all week and she's a little shaky because her body is working so hard to fight the fever. Along with the fever comes and increased heart rate and an increased respiratory rate. She's retaining fluid and her face is a little swollen. She's also has a runny nose and her eyes are constantly watering so it looks like she's crying constantly, with little tears just running down her face. She is still covered in her engraftment rash but the steroid creams that they've given seem like they're helping out. She also has a raging diaper rash and I'm going through an entire jumbo size tube of diaper rash cream every 2 days. Dr. Parikh swears that all of this is very normal, it is what is to be expected, that she is engrafting and it will get better. He said it's hard when patients engraft early because they are dealing with the side effects of the chemotherapy (diaper rash, sensitive skin, mucositis) along with all the side effects of engraftment (fever, rash, runny nose, watery eyes). He is also sure that the cells that are growing are donor cells as opposed to Olivia's cells returning (this is great news as this was the whole goal of the transplant, to replace her diseased and damage cells with new healthy ones). The more frantic I get about Olivia the more calm he remains and he's even told me twice in the last two days that we should be able to go home about 2 weeks after Olivia is engrafted. Of course I don't believe him but it's nice of him to say.

The only piece of good news is that Olivia's white blood cell count is continuing to rise! Today it's at .6 which means that we can now begin to check her ANC (absolute neutrophil count). The ANC represents the number of cells in Olivia's body that are mature enough to fight infection. Once Olivia's ANC is above 500 for 3 consecutive days then she is considered to be engrafted and we can begin to prepare to go home. Today Olivia's ANC is still below 500 but we're getting close!