Back home - James update Feb 17th 2001

It's a great thing to come home from Sick Kids, even if that hospital

is one of the best in the world. Things went so well (not counting

paperwork foul ups) that James was discharged this morning. All his pain

has gone. Compared to 14 months ago, this round of the "ICE" chemo was a

breeze. We were expecting lots of vomiting, so James took down a brand new

green "barf bucket" to use during those unpleasant moments, specially

inscribed on the inside bottom with "AIM HERE!" by his friend Steve. To our

amazement the new bucket only got used once. As usual James was looked

after by a fabulous set of nurses. I must admit that when the nurse walks

into the room and James, recognizing her from his stay fourteen months ago,

says "I missed you so much, Tina!" it does get things off to a good start.

Uncle Rodney joined us from Montreal, and that gave Pam and I a bit of

breathing space. I did the sleepovers with James in his room while Pam and

Rod stayed at Rosie's. We always rig a piece of string from James' bed up

to to the curtain track on the ceiling and back down to the sofa bed where

I sleep and attach an antique bell, so during the night James can wake me

melodiously for assistance. Another tip: bring masking tape and disposable

diapers to cover the PA speakers in your room. That way you can get the

decibels down to an acceptable level. If you moisten the diapers first they

work even better. With water.

We have noticed in the past that James often stops eating and walking

while in hospital, and this visit followed along those lines. I suppose

that's because he's usually in rough shape by the time we are admitted, but

I think there's also a bit of the "you're in hospital because you're sick,

so act sick while you're there". The interesting thing is how fast all that

changes once James leaves hospital. He began walking again just 10 minutes

after leaving, the better to check out the candy selection at Candy Island.

By the time we reached Peterborough, he was mobile, managed the staircase,

and made a good start on the eating. About three weeks from now we will

return for an assessment and decide on a game plan. The mouse medicine has

worked well for a time, and has been the least invasive of all the

treatments to date. Maybe we can tinker with it to improve its efficacy.

However if yesterday's MRI of the head shows new disease, we may want to

try a new drug. There are so many "successful for a while" treatments for

neuroblastoma that you can't help thinking that if some serious funding and

awareness was given to this disease, a cure would soon follow. Meanwhile

we take it as a good sign that his head pain has disappeared. The chemo has

left him absolutely wiped. Pam's description from her own chemo experience

is " your veins feel full of lead, all you can do is lie down, opening your

eyes becomes an effort." Which I confess is my state right now, so good

night, and thank you for all those encouraging emails, notes, letters,

phone calls, soups and casseroles, childcare, all of which helped us

through the week.

Syd

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