Wednesday, December 03, 2003

Last night when I put Joe in his crib I kissed him goodnight and walked out of his room. I was walking down the hall when he started to cry out, "Dad, Dad, Dad." It hurt me so much in my heart to hear that. I felt like I was hearing you. I walked into Mom's and my room and got under the covers so I wouldn't hear Joe. I knew he was just trying to stay up a little longer. He would fall asleep quickly if I left him alone because he was very tired. It is hard to resist going to him. The next thing I know I was waking up in the morning.

I have to work on being extra good to Mom when she is sad. She had to work on telling me when she is really sad, and she is doing it. The other day she told me that she keeps thinking about December 11 and feels very run down. I need to be good at listening and make sure the guys don't get too crazy when Mom is at her lowest. I am taking the day off of work on the 11th to be with her. I don't know what we'll do. Mom suggested we do stuff that you really liked to do. Maybe we'll go out to St. Michaels or go to Sullivans and buy something for the boys and/or kids at Georgetown Hospital. Should we have lunch at Rainforest Cafe and dinner at Cactus Cantina. Maybe we can watch Disney movies all day.

Here is what I wrote in my journal last December 3. The next day, December 4, is the last moment that you had outside of the hospital. At least it was in a toy store even though you were so miserable. God, I am sorry for the pain you suffered.

Tuesday, December 03, 2002
taking inventory. in the past month i have had tix but didn't go to...

vikings v. falcons
vikings v. packers
redskins v. rams
minnesota v. michigan (college)
fountains of wayne
kim richey

testimony to my optimism i guess.

henry's blood counts continue to plummet. the docs haven't a clue. his platelets were 8K this morning. possibly/probably the lowest since transplant. they want to do a bone marrow aspiration -- perhaps he has graft versus host disease in his marrow. that doesn't sound good, does it. i haven't been able to patch together more than 3 hours of consecutive sleep in 4 nights. i am burned out and don't think i am a good cheerleader for henry right now. he needs to be gently pushed and prodded and cajoled to help him get out of the hospital. whatever his physical problems, they are just totally crushed by his emotional upset. i think his insistence on morphine for the real or phantom pain (i think it is real but not that terrible, more like a "soreness") is the saddest thing to come along in a while. but i have long since learned not to doubt or second guess henry when it comes to pain. he fell last night after pooping and i had to quickly grap his arm to keep him from hitting the floor and ripping out his tubes. of course i had to grab him hard on the arm that is presenting him with so much pain. this is madness. henry slept a bit last night. i didn't. i was too scared of everything, of him waking up in pain or needing to poop, of him not making it out of minnesota.

pat is here tomorrow and i told laurie that i need to take a half day for myself. i am going to buy a winter coat and see if i can go to the calhoun beach club (our old apt.) and take a long sauna and whirlpool bath at the fitness club. i used to do that every other day (when i wasn't at the hospital with henry) when we were here in 2000 for transplant. i never got sick or burned out. i gotta say that pampering goes a long way in crappy times like these.

laurie is smart. she is trying to strategize how to get us home soon because she thinks that it will perk up henry. that is true but what nags at me is that we reach a certain point that we cannot bear being away and then the tradeoff is his physical well-being for his emotional health. my fear, of course, is getting him home and having him just get sick again. i think that has happened before. i kinda want to stick it out here a while longer to get those few "good weeks" in but being away from home my be doing everyone more harm than good. it is so hard to figure this all out. laurie usually has a good sense of what is best to do. i think i have more patience because i have more optimism. i keep thinking who cares about a week or month or year when it buys us a lifetime. maybe that isn't an option or the right way to think.

it is all very christmassy here, in the hospital and the ronald mcdonald house. i feel like a bagel eater among bacon eaters.last night i took the boys down to have our first communal dinner. santa claus showed up too. scared most of the kids. i couldn't identify any of the things that had been mashed into the dozen or so noodle and macaroni based dishes. the volunteers who (sweetly) donated the meal maybe should have coordinated a little better. instead of a bunch of brown things there could have been something green. jack wanted a salad which my dad made for him from the communal fridge. joe had some milk, two spoonfuls of yogurt and i ate celery. my dad scooped up a lot of the casserole looking stuff and chowed down. how come i didn't inherit his intestinal fortitude. laurie, henry, jack and i are as finicky as they come. there is hope for joe, though. there is this huge family of south dakota ranchers staying in the same part of the ronald mcdonald house as us. not much in common. laurie is down on them 'cause they don't do their dishes and leave their food out all night. they just sit outside in the below freezing temps and smoke. stress is one thing we have in common, i guess. overall, it is a great facility and the people are really nice. oif course yesterday we got the flyer under our door that some kid staying there had tested positive for chicken pox. i can imagine the shudder of fear that ran through every other adult in that house. luckily, it is very unlikely that joe was exposed.

joe seems to be doing the best of all of us. in the past two nights jack threw up all night and then emotionally cratered the next because we have lost his blanket in all of our moving around. laurie said he was sobbing last night. dealing with the emotional is so much harder than treating the physical ailments.

we're coming up on our one month anniversary here. let's hope things start to improve soon.
posted by Allen at 8:43 AM

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