A terrible day, all things considered

Hi everyone:

Today was by no means a banner day, healthwise, for the O'Mara-Croft clan. Patty started the day vomiting profusely, and pretty much felt well below the weather for the balance of the day. I didn't want Patty to feel centered out, so I threw up in the O'Hare parking garage when I brought Colin for his flight back to Canada. It made me realize, to some small degree, what a nightmare it must be for Patty to feel this way almost every day.

This afternoon, Patty had her periodic appointment with Dr. Costanzo at Edward Hospital. We were told by the doctor that the nausea is a concern, both from a physical and psychological perspective. She suggested that if the problem persists or gets worse, Patty may need to be hospitalized 24/7 until she can be transplanted. This, of course, was not the kind of message we were hoping to hear. Patty has been prescribed Ativan to supplement her Zofran, based on advice Dr. Costanzo procured from an Edward oncologist. Please keep your fingers crossed that Patty can tame the nausea, because it would really be sad if she ended up imprisoned in a hospital.

Dr. Costanzo also seemed somewhat surprised when we mentioned that the University of Chicago Hospital was suggesting they would transplant Patty with a positive crossmatch if the Cytoxan failed to lower her antibodies. Dr. Costanzo expressed her worry that Patty might develop acute rejection episodes soon after transplant, and cautioned that there would be a greater risk of chronic rejection. She seemed to think that a VAD (ventricular assist device) of some form might be the logical next step. We asked the doctor how long Patty would be able to go without a transplant or other significant intervention, and she answered, "Not long." We'll keep you posted as we sort out what the next steps may be.

Patty will be undergoing her third course of IVIG starting tomorrow morning, so she'll be pretty much tethered for the next two days. On Friday, they will draw her blood again and test both her panel reactive antibodies (the number we really want to drive down) and her white blood cell count, which was still a bit low when it was last measured. We inquired about total body irradiation as an option for reducing antibodies. Dr. Costanzo had mentioned this as a possibility in a previous discussion, but today shared that it was really a last-ditch alternative because it dramatically increases the risk of infection.

We were sad to see Colin leave, after a much shorter summer than usual, and we miss Devin a great deal, because we have not seen him since Spring Break.

We took the three kids who live here to pick up their school supplies at Target this evening. Dennis Sobieski and Angela Zotos gave the kids gift cards to pay for the supplies -- thank you so much.

I'm sure there will be more to share soon, so I'll cut this message off before it reaches epic lengths.

Love,
Brian

P.S. What's the deal with the Sox -- I thought we were over the hump!