The Nathan Report

Thurs. Apr. 4 to Sun., Apr. 7, 2002

Nathan has been at home, adapting to the new g-tube. So far, his
incision has been somewhat painful, and he has had a hard time finding
the right feed rate and formula. He was taken off of pediatric formula
and put on adult, as this latter is higher in calories, but he couldn't
keep this down. Therefore, he went back to the pediatric, at a slower
feed rate, and this seems to have worked. His feed rate will be increased
slowly.

Monday, Apr. 8 to Sunday, Apr. 14, 2002

Nathan has been in the UAH since last Tuesday. He was admitted because
his tri-weekly major course of chemo (VAC) was due, and he was kept in
because he kept vomitting. He will be released when his feeding rate
is up to 95 ml./hr., barring any other events. So far, his tumor is not
presenting and further problems, and so appears to be under control,
at least as far as can be told without further testing.

Later this week, the UAH Tumor Board will meet, and there will be some
decisions made about Nathan's treatment.

Monday, Apr. 15 to Wed., Apr. 17, 2002

N. remained in hospital, mainly because he lost too much weight over
the previous weekend. He was put on intravenous TNP, and his g-tube
feed rate was increased to 95 ml/hr. Also, he had a temp of 38.4 early
Wed. morning, and was given a thorough going-over by a resident
pediatritian, and given various "sample" tests.

Thurs., Apr. 18 to Fri., Apr. 19, 2002,

On Friday, there was a progress meeting concerning N's treatment in
the morning. The good news here was that any necessary surgery on his
face will not be disfiguring. Also, during the first operation, 95% of
his tumor was removed.

In the afternoon, Nathan had another endoscopic debridement, and it
was noted at that time that there seemed to be little evidence of any
remaining tumor. However, this is not definitive at that time, as this
was not exploratory surgery per se. A more rigorous exploration will
be done within the next two weeks or so.

Sat., Apr. 20 to Sat., Apr. 27, 2002

Nathan remained in the hospital until Monday afternoon. He has been at
home since. This was not a major chemo week, and so he has been
feeling pretty chipper, despite the intestinal bug that he is being
medicated for.

Sun., Apr. 28 to Wed., May 1, 2002

On Monday, Nathan started his VTC chemotherapy at the Cross Cancer
Institute. However, on Tuesday night, he developed a temperature of
38.3, and was admitted to the UAH at about 3am on Wed. morning. He had
also been vomitting.

. Thurs., May 2 to Sat., May 4, 2002

N. had a CAT scan on his head on Thursday morning. So far, no results.
Also, he's following his usual pattern and having a difficult time
handling a major course of chemo. He was vomitting every so often
starting at 3am Friday morning, and he continues to have some sort of
intestinal bug. Also, to overcome his nausea, he has been given
Nabalone (sp?), a synthetic cannaboid. He is apparently not enjoying
the experience of being stoned all of the time. Hopefully, he will
carry this experience over into his teen years.

Sun., May 5 to Sat., May 11, 2002

Nathan remained in the UAH pediatric oncology ward, mainly due to
ongoing feeding problems. He was having a difficult time keeping his
"food" (Peptamin Junior) down, and he continued to have a "c diff"
(?, sp.) infection in his intestines. This is a condition where
normally benign intestinal microorganisms go on the rampage.

Also, good news! The CAT scan report came in, and the pediatric
oncology team feels that Nathan's tumour is shrinking faster than
it was expected to. This MAY mean a lower radiation dosage.
Congratulations, skink! All of this may not be in vain.

Sun., May 12, 2002

Nathan came home from hospital today. He is still on Flagyl for his
c-diff infection, and needs to be weaned from some of his antinausea
drugs, but he's out.

Mon., May 13 to Sat., May 18, 2002

Nathan returned to the hospital on Mon. morning, as he was having
severe back pains. He was taken off his g-tube feed and put back on
TPN (IV food), as well as morhine. He missed his Vincristine for this
week, but will be given a full unscheduled VCT next week. His
radiation therapy will start within the next few weeks. He will run
about a 5% chance of going blind, and will likely suffer pituitary
gland damage, due to the location of the tumour in his R. sinuses.

Sun., May 19, to Sat., June 1, 2002

Nathan remained in hospital, with considerable nausea and vomitting.,
throughout this period. He was given a partial full course of chemo
(AC) on May 28, and this knocked him back from tube feeding to IV
TPN, not unusual state of affairs. However, he was soon put back on
a tube feed, in order to get his digestive track working once again.

Our lad is c-diff positive once again, meaning that he has bad
bacterium sporting in his GI track, and he also managed to get
intestinal 'flu. However, he may be out by next week. (!?)

Sun., June 2 to Wed., June 5, 2002

Nathan continues to remain in the UAH with digestive woes. He has
fairly consistent nausea and vomitting, and continues to be treated
for clostridium difficile. For this, his flagyl has been dropped,
and he has been put on Vancomycin 125 mg. four times daily.

Also, he was given a MRI scan to his whole body, and there is evidence
of any remaining tumour! All of this misery is paying off!

Thurs., June 6 to Wed., June 12, 2002

Nathan remained in the UAH. His white cell counts were down early
in the period, and he was put on tobramycin and ceftazideme for a
period. His c-diff is getting better, and he is having more energy,
getting out to the "teen room" in the afternoon, enjoying walks in
a wheelchair (he has difficulty walking and standing), parrying
verbally with all and sundry, and so on. N. remained on TPN (IV
nourishment), but his g-tube feed rate was gradually increased.

Thurs., June 13 to Sun., June 16, 2002

Nathan continues to have problems with Clostridium Difficile, a
bacterial infection in his intestines. He is still on Vancomycin 125
mg. 4 times daily. He is also on Cholestramine 4 g. 3 times daily;
this is an anti-cholesterol drug that also might help with his c-diff
problem. Also, he's taking Flagyl, another antibiotic commonly used
to treat this ailment.
He remains on Nabilone, a synthetic canniboid used to control nausea,
Losec, an anti-reflux agent, and Motilium, to aid in the passage of
food out of his stomach. Nathan is getting about 70 ml./hr. of
Peptamin Junior "formula" through his g-tube, and he is still on Total Parenteral Nutrition, liquid nutrients that feed him intravenously
through his IVAD, or central line.

Our lad has become a great devotee of Mad Magazine, and loves any
other form of humour, except for his father's. He is holding up very
well emotionally, and as we have mentioned, his tumor seems to be
under control. But, the side effects....

Mon., June 17 to Sun., June 23, 2002

Nathan remained in the UAH until Thursday, missing his chemo for the
week. However, as he was feeling pretty good, he was sent home on
Thurs. afternoon. Over the weekend, he enjoyed many outings, and had
the company of the family pet Annie, a Siberian Husky.

Mon., June 24 to Wed., June 26, 2002

N. returned to the UAH for chemotherapy, a major course this time.
He received a dose of cyclophosphamide on Mon., and will receive 5 doses
of topotecan, from Mon., to Fri. His c-diff is gone, and his GI tract
is behaving fairly normally. Yahoo!!

Thurs., June 27 to Tues., July 2, 2002

Nathan was sent home from hospital on Friday, a bit tired, but
otherwise doing well. His radiation therapy starts next Friday.

Wed., July 3 to Sat., July 6, 2002

Nathan remained at home, in good spirits, and with more energy than
he has had in months. On Fri., he began his radiation therapy at the
Cross Cancer Institute.

Sun., July 7 to Wed., July 10, 2002

This was Nathan's first full week of radiation therapy. He remained
at home, and had this done as an outpatient. He felt a bit ill on
Wed., and will be checked out on Thurs. at the Cross for a possible
reoccurance of his c-diff.

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