WhatsUpWithJacob

Young got a call this week that some fungus has grown out on Jacob's lung culture - the one test that wasn't back when we met the pulmonologist last week. Potentially it could be pretty serious, but we don't know that it is yet, so why borrow trouble? He's going to have a routine MRI tonight and then a bronchoscopy (sp?) on friday, so we should know more soon.

Meanwhile, Jacob, Alex and I rendezvoused in Santa Ana this weekend for a fabulous wedding shower for Matt D and Holly H. It was wonderful to see them so happy and ready for the wedding to come.



Afterwards a group including John and Ruth, Matt's parents, and Colin, another friend of Alex and Matt's from Nueva went to Disneyland.



It sounds like they had a great time.

I came through LA from Philadelphia where I had a fantastic, wonderful visit with Ellie.



And I got to see our old friend Chuck for a short visit. He was extremely hospitable - especially since I showed up at his house at 2am, which may explain why the picture is out of focus.

Jacob had his consultation with the pulmonologist today and...his lungs are fine. Fine! Jacob himself was unimpressed - he never doubted they were okay - but I was jubilant! The specter of long term breathing problems was daunting.

Evidently what turned around the pneumonia wasn't just the antibotics, but Jacob's determined exercising with the incentive spirometer. I'm hoping that exercise will help his hand function as well. He was getting so good at doing everything with his right hand that we didn't notice he wan't using his left at all, but it needs the exercise.

We saw "As You Like It" at the Santa Cruz Shakespeare Festival, and now Jacob's doing a week of Shakespeare reader's theater with one of the Nueva theater coaches. AYLI is running through labor day weekend and I highly recommend it. Very broad humor - almost Marx brothers physical comedy. The Lear was terrific too, and I hear great things about the Pygmalion, but we didn't see it.

I'm heading to Philly to see Ellie tonight. More when I get back.

Our love to Sharon S. who's getting her own test results today, and to Ben D's family who marked the first year since his passing on Sunday. I was really moved by the words of the Kaddish we said, a little altered, for Ben:

"He Who makes peace in His heights, may He make peace, upon us and upon all people."

We just got back from a day at the hospital getting Jacob's lungs checked out to see why he keeps getting pneumonia - first a spiral CT of his chest (sounds fancy!), then a long series of pulmonary function tests, and as finale, something called "the six minute walk".... Big fun.

Obviously, we don't have the results yet - we meet with the pulmonologist next week - but I was extremely encouraged just by watching how well he was able to complete the tests without getting out of breath. He couldn't have done it last week.

Here's a repeat picture of the PFT from last year before the bone marrow transplant:


But I wanted to tell everyone about a fantastic class I took last week: Surf Rescue. Although the course was intended mostly for surfers, who are often the first and most ocean-knowledgeable people on the scene, it was great for someone like me who life guards their own kids at the beach.

The first half was a very enjoyable CPR refresher taught by firefighter/paramedics, and then after lunch, we were in the water with rescuers from the harbor patrol. These are the guys that pull people out of the thunderous waves of Mavericks, and do most of the rescues off Devil's Slide. In fact they do most of the water rescues between Pacifica and Anno Nuevo.

I'd been afraid I wouldn't be able to keep up, but the course was well designed, and I found I really could drag a full grown man onto the beach using the techniques they taught us. To top it off we learned how to be rescued by jet ski, which entailed a (for me probably once in a life time) ride.

The class is masterminded by SurfPulse if you are interested. They'll post when it's offered again (I actually took it through the Half Moon Bay Rec Department.) They also have a great surf report, shark sightings, tide tables - you name it.

Evidently, cancer continues to suck even after its gone. We had one of the most discouraging meetings with the docs today...

Jacob lungs haven't recovered from the pneumonia the way we would have liked, and he's going to have to go through a bunch of tests to see if they were damaged by the high dose chemo.

The numbness and weakness on his left side haven't begun to resolve as we hoped, and we are looking at the real possibility that they won't (though they still might). Meanwhile he is stuck on the medication, which is no fun at all.

So we are all pretty down tonight.

On the other hand, I keep reminding myself - he's still the same Jacob, except a lot more independent and grown up. There are a lot of things that could have gone wrong that haven't - he's growth is normal, he can see, hear (that was lucky given some of the ototoxic chemo drugs) and once his lungs recover, he'll be able to walk, run, swim and ride a bike. He's getting skillfull at doing things one handed. And his mind is sharper than ever.

We are so lucky to have him here to worry about.

Well, Jacob has pneumonia again, but no where near so bad as last time. No fever, and (knock on wood) no hospital, just rest and antibiotics.

He is not happy. But at least its fixable.