Thursday, April 30, 2009

Good News to Report

Finally, some good news around here. Will had his big check-up today to confirm that his PTLD is still in remission and, it still is. He remains cancer free -- which is, obviously, great. After today's visit he has no more scheduled check-up CTs. It's been long enough that he doesn't need to be monitored that way any more, so, for the cancer part of life from now on, he'll just have a regular doctor check up with his oncologist every 6 months unless something else seems needed. Hooray! Two fewer doctor appointments a year! And, as a free bonus bit of good news, today's CT showed that his lungs look better, so the new regime of high-dose Cipro and inhaled Colistin seems to be working on whatever infections process had taken hold of his lungs this time.

(Will did not have to go into the hospital on Monday; his regular pulmonary doctor seemed, confused is the nicest way to describe it, I guess, to learn that Will had been discharged with no follow up treatment when he was in 2 weeks or so ago. The set of problems he is dealing with now is almost certainly a pseudomonas flair up infection/inflammation in the small airways; the pseudomonas is always around and it jumped on the opportunity/weakness caused by the cold virus Will had three weeks or so ago. This makes me realize that maybe I should be a little more assertive with Will and his docs sometimes, since I know from past conversations with the pulmonary doctor that this type of thing is likely to happen and was pretty shocked when Will described no follow up care from his last hospitalization because: "it's viral and can't really be treated." It's never only, just viral. The bacteria are always looking for their chance. But, Will HATES the Colistin, it is awful to take, so he can sometimes be not overly motivated to question these decisions.)

For more information on PTLD, a transplant-related form of lymphoma, see here and here. It's most studied in bone marrow transplants, but also can occur in solid organ transplants (like lungs). Will is unusual in that he had two types of PTLDs, as described here. It never rains but it pours, I guess.

I'm really happy about the CT thing. Will has had so many CTs, honestly, I don't think it's exaggerating to say that in the past three years he's had in the neighborhood of 35 or 40. That's a lot a radiation, so I'm all for CTs only when really, really necessary from now on. Putting the scheduled CT behind us frees up more of my brain to worry about the pig flu. Which is good, since it requires a lot of worry. Immune suppression to maintain lung tx + pig flu = very bad news. I have washed my hands so many times in the past week it's amazing I have any skin left. The real thing will be deciding if/when to pull Liam out of his 2 day a week "school." We'll just have to play it by ear, I guess.

Liam has taken to picking all the flowers in the yard, but, so far, only the yellow ones. This is potentially useful for the dandelions; less good for the marigolds. For some reason, he likes to put the picked flowers into Mollie's outside water dish. (He knows that flowers go in water, I guess that's it.) Photos are: waiting inside the gate for Daddy and Grandpa DH to walk up, showing Mommy the flowers, and flowers in Mollie's dish. Mollie doesn't seem to mind.


Deron Arnold said...

Amazing that we seem to go through the same thought processes...regarding pig flu, CT scans, aggressive follow-up etc.

I could particularly relate to your concerns about day-care.

And, as I sometimes say, behind every successful male with CF is a strong and assertive female.

BTW, doesn't Will find it hard to distance himself from Liam when Liam gets a cold? It breaks my heart to stay away, and I find myself getting too close and usually getting whatever virus they're carrying around.

IVF 40+ said...

Oh that is terrific news about Will. Really great. Your challenges and strength, your kindness and open heart are such an inspiration.