Home Sweet Home

We came home yesterday - YAY! I am so glad to be back. Now, if I could just get Jenna to sleep at night again :( She seems to be having some difficulties of her own lately, but I think she'll be okay. If it wasn't for the seizures, I don't think I'd worry as much, although she hasn't had a major one in over a year.

We have an action plan for Cohen, though, which made me feel much better coming home this time. The hematologist is back on board and he is probably going to perform a bone marrow biopsy. Cohen's ANC (Absolute Neutrophil Count) has reached some all-time lows. As I understand, the normal numbers are as follows: 1000-1500 =mild neutropenia (slightly higher risk of infection than normal); 500-1000=moderate neutropenia (moderate risk of infection); 0-500=severe neutropenia (danger!)

Cohen's numbers went like this: Sat - 400; Sun - 207; Mon - 2400 (YAY - he looks great!); Tues - 1170; Wed - 760...

A great big bell curve. We were released with him at the moderate level, and I worry that he is not through dropping again; he was on a downward trend so it seems a logical concern. We are told to be careful - no crowds, no shopping carts with germy residual... We see the hematologist within the next week and he will test Cohen's blood again. Then there's my two other kids - Hannah who wears her infection on her skin, the most convenient place to "share" with others, and Jenna who attends school and catches whatever's going around then comes home and drools and bites her hand and touches things around her, including all of us. How do I keep things from spreading through our household? From spreading to Cohen?

I went back through Cohen's medical records and I found a few instances where his Granulocytes had dropped quite a bit, one that was even flagged LP, which I think means "Low Panic" - as in danger, alert! I didn't even know this happened, but this was in January, his last visit to the hospital when he had the abscess in his chest wall.

I don't know what all of this means yet but it is so frustrating to not know. Maybe this issue with white blood cells will resolve itself and not become part of whatever is challenging him so much. My heart goes out to the millions of parents who have gone through this discovery process and found themselves with a neverending stream of questions and the desperate search for answers, for a way to help. I want to take his pain from him and I want him to be happy. Last night was great. He looked so thrilled - and relieved! - to be home again. He is doing well, walking all over the living room (his IV was in his foot, so he was a sitting duck for a few days), and I am so thankful we are all home together again.

RIP Daisy

August 9, 2002 - March 24, 2008

Little princesses can have wings...