Thursday, February 17, 2005
5/7/04
We came home from the first chemo Wednesday evening and it went pretty well under the circumstances. Jacob even said it wasn't as bad as he expected (though obviously no picnic!) The nursing care at Stanford is incredible.
I still get a bit of a shock when I look at him, but it's getting much better. He's still got a knob on top of his head where fluid has collected under the stitches, but it's getting smaller. He's lost a bit of the 20 lbs he put on, and the acne is running its course (both are from the steroids, thankfully now finished, so they should go away by themselves, as should the bump for that matter.) Now I know what my mother meant when she said "bless your pointed little head." For now, he's still got his hair, though it is very short and brown, since Ellie shaved off what was left of the blue.
I spent yesterday coordinating lab and nursing services, follow up doctor visits, insurance and pharmacies; Young is having a rough time - he needs to DO something. Just sitting around and waiting makes him crazy. Mostly that is what we need to do, though, since Jacob is healing himself (of course we give him his meds, take his temperature, drive him to appointments, etc. - it just doesn't seem like enough.)
Young did go and visit Wilkinson, a tiny private school in the neighborhood today, that might be a better option for Jacob next year than returning to Nueva. There are evidently going to be some neurological problems post treatment that might make his existing learning issues more difficult, so he may need more one on one treatment. He was already there at Nueva a little bit on sufferance pending required Slingerland summer school and intensive tutoring. Do any of you know anything about the Wilkinson's? Jacob's old preschool teacher, Tish, had worked with them on some state preschool issues and liked them a lot.
I still get a bit of a shock when I look at him, but it's getting much better. He's still got a knob on top of his head where fluid has collected under the stitches, but it's getting smaller. He's lost a bit of the 20 lbs he put on, and the acne is running its course (both are from the steroids, thankfully now finished, so they should go away by themselves, as should the bump for that matter.) Now I know what my mother meant when she said "bless your pointed little head." For now, he's still got his hair, though it is very short and brown, since Ellie shaved off what was left of the blue.
I spent yesterday coordinating lab and nursing services, follow up doctor visits, insurance and pharmacies; Young is having a rough time - he needs to DO something. Just sitting around and waiting makes him crazy. Mostly that is what we need to do, though, since Jacob is healing himself (of course we give him his meds, take his temperature, drive him to appointments, etc. - it just doesn't seem like enough.)
Young did go and visit Wilkinson, a tiny private school in the neighborhood today, that might be a better option for Jacob next year than returning to Nueva. There are evidently going to be some neurological problems post treatment that might make his existing learning issues more difficult, so he may need more one on one treatment. He was already there at Nueva a little bit on sufferance pending required Slingerland summer school and intensive tutoring. Do any of you know anything about the Wilkinson's? Jacob's old preschool teacher, Tish, had worked with them on some state preschool issues and liked them a lot.
# posted by Jacob's Dad @ 12:28 PM 
