This is real. My daughter has Cancer and is weeks from death. She
really has a brain tumor. In introduction in Cancer Sup****t Groups,
Cancer News Groups, basically everywhere I look for help all the story
generates is anger, criticism, an outright hostility. Where better
than here to ask why this makes you angry. At least in this group
people know they are angry. They don't mask that with b.s. stories
about why it's my fault the story made them mad. Honestly, what is it
about this story that makes you mad ?
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On March 2003 I ( presently 7, at diagnosis 4.5 )was diagnosed with
Stage 4 Alveolar Rhabdomyosarcoma. The 30 months leading up to this
point we have been followed by Oncologists at Lucille Packard
Children's Hospital in Palo Alto California.
In a nutshell I was given Vincristine/Irinotecan, followed by
(vincristine, actinomycin D, cyclophosphamide) over 12 months. During
August 2003 I underwent Radiation treatement for a total of 25
treatments spaning 25 days. I received very severe burns from
Radiation and was on a PCA pump for 2 weeks during the last week of
radiation; I continued treatment while on the pump.
During these 11 months the primary tumor ( 5cm/8cm next between the
cheeks of my bottom ) shrank by 60%. During a CT Scan 3 mets were
noted on her tail bone after shrinkage occured . A prior CT Scan found
a met on my right fibula. Additionally it was determined that it had
met. to my bone marrow.
>From March 2004 through August 2004 tests at 6 wk intervals indicated I
was in remission. Remission was a rocky boat and those 6 months were
anything but enjoyable. In August 2004 a nodule shaped like 1/2 an egg
was growing on my head above my left forehead. A CT Scan indicated no
presence for tumor. A needle biopsy showed the result was positive for
Rhabdo. Th mirror image of the egg was detected between the skull and
the dura ( had not broken the dura ).
Shortly after the Bone Scan August 2004 I began 13 cycles of
alternating treatments; Efosfamide/Itoposide 5 days, then
vincristine/Doxirubicin/Cyclphosphamide for 3 days. I was told that
treatment was for Control and not Cure.
CT Scans in Sep 04,Oct 04 found mets to tail bone gone and fibula gone.
Bone Marrow Biopsy and Aspirate were also clear of Rhabdo cells.
I may be eligible for a Study now involving a drug that prevents the
tumor from gaining access to a blood supply and hope to get 2 more
months.
Here it is the end of August. I start 1st Grade next Monday. I'm
starting to get headaches and I have severe mood swings. The tumor is
on the frontal lobe of my brain, symetric between both lobes. The
Scans a couple of weeks ago show that the tumor has broken the brain
blood barrier and it looks like it is in 10-15 % of my brain.
If you want to read about me, go here ->
http://poodlepaigee.blogspot.c
om
love,
Paige
(Chris, Paige's Dad)
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