Monday, August 29, 2011

Crawling Back In and Then Back Out

On August 1st, labs were drawn to check the function of William's immune system. Earlier tests showed the T and B cell counts were high enough to exit isolation, but didn't reveal whether they were actually functioning yet. The labs were sent to the Mayo Clinic and take 2 weeks for results. In the meantime, we were told isolation would end at 6 months as it does for most patients.

Most patients. William is not most patients. Why do I forget? On the first day of school as we watched William walk back into school, I turned to Ryan and asked, "Did we ever get some sort of official clearance to go back to school?" We kind of shrugged and commented that we remembered discussing it on several occasions with doctors and nurses with the assumption that it was okay, but never received the golden ticket declaring isolation over. Most things are fairly anti-climatic and are only as exciting as we choose to make them. Think baby steps.

The doctors never called with the results and I just got busy with life to really care about the results. Is that a sad commentary on how many results we've waited for or what? The Type A in my personality is really beginning to suffer, but I can only control so much. See, I'm starting to learn. I figured the results are what they are, they would call me if there was a problem or surprise, and the results really don't change anything. Right? Wrong. Well, sort of.

On Friday morning, while running errands I thought I'd just make the quick call since it had been almost 4 weeks---just out of curiosity and for the sake of knowledge. The results: Function at 37%.

Nurse: We like to keep the kids in isolation until they are over 50%.
Me: (shock hitting. tears forming) But he already started school!?
Nurse: How long ago?
Me: Two weeks ago.
Nurse: (bless her understanding heart) Oh. (sympathetically) This is not a black and white matter and it is something that we are only recently running into with the antibody patients. The antibody seems to slow the recovery of the T cell function. We will want to re-test him in 2 months at his 9 month post-transplant mark.
Me: Okay. But we were planning to go to Disneyland next month too.
Nurse: Let me talk to the doctors again and I'll call you back. 37% is really close and it was almost a month ago.
Me: (deflated) He starts his last round of antibody on Monday.

I sat in the car and just cried. This was not the end of the world. This was not something horrible. This could be a lot worse. This was only a hiccup. But it was just a smack in the face again that we still can't make plans without the looming possibility that all could change at the last minute. In the hours that passed while the doctors discussed his T cell function, I decided we would still go to Disneyland regardless, but boogie boarding at the beach may be off the table. We'll see.

The verdict came back in our favor! Hooray! After studying some recent national studies, patients with function over 30% do fine off isolation. William can continue to go to school, but we still need to continue our vigilance in germ abatement. He is more susceptible to everything. Of particular worry will be any outbreaks of chickenpox or nasty viruses such as hand/mouth/foot disease which can be fairly common. Since he essentially has a brand new immune system, he is no longer vaccinated against anything. And he cannot be re-vaccinated until his function is higher. New vaccinations will be spread over a year or two. So please stay away from us if you think you are sick or have been exposed to sickness. Wouldn't we all be a little healthier if we just practiced this in general with everyone? I think my love affair with Clorox Wipes and hand sanitizer will be a long one.

In other news, my angel sister is holding down the fort this week while William and I hang out at UCSF. Last round. Whoo Hooo! The boys love it since her darling 18 month old daughter becomes their surrogate sister for the week. I wonder who is babysitting who?

Here's to one more week of antibody. May it be uneventful.

1 comment:

  1. It was great to talk to you and Will. I just say hooray for fourth grade, loving family and friends, and Mickey Mouse. They are all affirming, fun and encouraging. Love to you and all the boys. Love to Mickey Mouse as something to look forward to that is not medically-related.