Wednesday, April 28, 2010

Apple Eating


Take another look at the picture. Liam was helping me make apple crisp earlier in the week and was in charge of putting the apples into the pan. He was, of course, eating apples at the same time.

Did you see it? Half eaten apple slice at 9:00? He doesn't like the peel. I'm glad this one ended up on the top, because I found another half eaten apple slice somewhere near the middle. I think I got them all.

I use my sister's well tested recipe for the crisp part. It is: 1/2 cup better, 1/2 cup flour, 1 cup oats, 3/4 cup dark brown sugar, a pinch of salt, and that's it. Cut it all together and top the crisp. I like a high crisp to apple ratio, so I usually double the batch to make plenty and then keep whatever is extra (if any) in the fridge. Apple crisp topping in the fridge is a fantastic convenience food. Even on a pretty hectic day it's easy enough to slice up an apple and cook a tiny crisp in a ramekin. About 350 for about 45 minutes. Less time if you're making a mini-crisp in a ramekin.

Can I just say: I am so way past ready for spring berries to be here. I know it's still a ways off because they haven't even put up the berry-selling shacks yet but, still, if there's anyone listening, please, the frozen berries are all gone, the apples have been in cold storage for too long, I'm ready for spring berries.

Tuesday, April 27, 2010

Digging

Warm rain today; sometimes lots accompanied by wind. Then bright sun. Tonight we had that funny filtered greenish light, where the sun is bright but there are lots of dark, dark clouds just waiting to get in its way.

After dinner Liam insisted that he had to go outside. Usually he wants to run around or throw the ball for Mollie. Today he wanted to plant in the garden. Digging and planting. (Mollie wanted to be inside -- she's a smart dog, it was at best 50 degrees and threatening.)

Will has been having some good days -- feeling better, had a very positive check-up on Monday. Now it is just continue this course of iv antibiotics and hope that when he stops them in mid-May the blood infection (if there ever really was one) doesn't come back. And that the dosing for his blood thinning medications can be worked out so his level isn't bouncing around quite so much. And the clots go away. At any rate -- it's a much improved picture from a few weeks ago for which we are so very grateful.

Tuesday, April 20, 2010

The apple tree in early spring


We're all still here. It's been a rough few weeks. Will has been very sick, although seems to be stabilizing and getting stronger now. He's a lot better than he was 2 weeks ago: the swelling in his neck is down; his pain is much decreased; and most of all he's home from the hospital, discharged Saturday. I have been traveling for work, trips long planned and not cancel-able. DC most of last week. East of the mountains tomorrow. Will's mother has been sick and unexpected confined to bedrest for most of the past 10 days. My mother came up from California to help with Liam and everything else. Everyone is tired from the fear and worry, and all the running around and trying to coordinate schedules, medications, Liam, work, the dog.

It's great to have Will home. He came home on two iv antibiotic, plus all his regular medications, plus blood thinners. He's down to one iv antibiotic but a daily dose of saline has been added to try to keep his hydration stable (he's not been feeling like eating or drinking much, although that is starting to get better), tomorrow he starts the inhaled antibiotic again. Thursday home health comes for a blood draw. Monday back to the hospital for clinic. Blah, blah.

I haven't felt like writing or taking pictures or doing any of this stuff, but it all does go on. Liam and I were outside throwing the ball for Mollie after dinner and Liam decided to be Mollie and roll in the grass. I occurred to me that this time next year he might not want to roll in the grass under the apple tree in quite this way, in early spring, when the apple flowers are just out and the birds are making nests. And I want to remember that part too.

Wednesday, April 7, 2010

Back to the hospital

Will was admitted to the hospital on Monday and is very sick. We actually went up on Sunday to the ER, but the ER doc (apparently) mis-read what was going on and sent us home. She suspected lymphoma recurrence (so did we) and told us to follow up with the pulmonary/transplant doctors and the oncologists to schedule lymph node biopsies. I was working on that Monday when Will (who was getting worse) went up for a regularly scheduled appointment with his ID doc and was dx with some form of superior vena cava syndrome, basically a series of big blood clots in the big veins in the right side of his neck, and admitted right away. (I think it's not actually, technically, in just the right spot to be SVCS, they have told me at least twice exactly where the clots are but I am not capable of remembering the names of all these vessels and all my brain can do when they start in on that part of it is think -- How do they remember all this crap? And, who cares anyway? Big, big vein in the neck near to/leading towards the heart, that's all I need to know.)

Things have gone downhill since. Will is miserable, in a lot of pain, all swollen up on the entire right side of his head, face, neck, shoulder, arm, hand, chest, etc.. (I don't think it helped that the ER gave him 2 liters of IV fluid in 2 hours on Sunday. . ..) Can't talk really, can't eat well. Can't cough, which means his lungs are filling up with crap.

Yesterday they started making noises about putting him on a ventilator, because of concern that the swelling would start to obstruct his airway. This is still a possibility but hasn't, thank God, been needed yet.

It goes on and on, the normal hospital stuff. A million doctors involved, and since it's a teaching hospital a million and a half student doctors in various stages of training. The current debate: should the portacath come out? Can he tolerate the surgery now if it needs to come out? Is it really the cause of any of this or just a bystander? (The docs have different theories on this.) If the port has to come out, Will basically will have no good access options left. The veins in his arms already are shot from picc line after picc line; he had a port on the other side pre-transplant, so they don't think they can move it there. It's a dilemma. The medical docs in charge of him and the interventional radiologist think we should treat through for a little while and least in hopes the port can stay. They don't think the port has a raging infection in it or that it is the cause of all this particularly. ENT didn't have an opinion yesterday, although they are eager to vent and a little alarmist about the airway. Pulmonary/transplant wants the port out. I don't know what ID thinks yet. And a partridge in a pear tree.

He is being treated for a blood infection. The port may be infected, or the clots(s) may be infected on their own, or the blood cultures might have been contaminated. (Only one of 6 has grown anything so far and it is growing a common skin form of staph; but blood infections are, I've been told in the past, notoriously hard to catch, which is way they keep drawing cultures, so even 1 growing is important, I guess.) He isn't spiking big fevers so that's good and means the antibiotics are working to keep that under control so far. They've pretty much ruled out lymphoma for now, which is nice. What a rabbit trail that was. The lymph nodes are not swollen and he has none of the other markers that were present for his past two lymphomas (EBV spike, fevers, weight loss.) The ER doc apparently just got it totally wrong when she did her specific examination to determine if if was lymph nodes or some other kind of swelling and decided lymph nodes. Bummer.

Will has not yet really started to respond to the treatment they're giving (heparin drip to work on the clots, increased steroids to combat the inflammation, sitting up to encourage proximal drainage). Our job is to hope the treatment starts working to clear the clots, and the work-around veins that are surely growing get bigger faster, and that Will can hold it together long enough to be able get well enough to cough and start to clear his lungs. And that the lungs hang in there too. Honestly, it's a pretty awful situation and it really doesn't convey any sense of it to say that I feel so bad for Will who doesn't deserve this (as if that's a consideration in this universe) and who is tired, frightened and in a lot of pain.

Thursday, April 1, 2010

This land

Liam was taught to sing This Land is Your Land by, I assume, my mother. He sings it a lot and visits (daily) the Redwood Forest and the Gulf Stream Waters in his pretend play.

He hasn't done this for a while, but tonight he asked again to see it "on the computer." So we called up the version from the inauguration. Liam likes this one a lot. He especially likes that they are singing and dancing outside, and often will insist on going outside immediately to sing and dance on the porch.

If I live to be 825 years old, maybe, just maybe, I'll be able to make it through this whole production without tearing up.

Here's a link to the version we watch

Here's Liam's version; note he insists on wearing his boots and a woolly hat to match Pete Seeger.

video