tmp2624 wrote:Well they are telling us that one reson she might have these tumors are because of a possible gene mutation. We have yet to be tested for it, but I have been hearing alot about it. And no she never had a shunt even with both brain surgeries. Johns Hopkins is great, Dr. Carson was on the team of surgeons who looked after my daughter.
How often does she get MRI's. Do they consider her cured of this cancer or do they tell you it could come back? And did they get the entire tumor removed?
hi bridget, thx 4 yr response, my daughter developed totally normally until july when she started to stumble when walking.my daughter was diag in aug, when she was just 21 months (she was 2 in nov) the tumour was in posterior fossa and 99.5% of tumour was removed. no one in the uk has given us the 2x age at diag guidline. only 15 children in the last 30yrs have had this type of tumour in england, so i guess its difficult for anyone to giv us any kind of prognosis with so few to go on, and obviously medicine moves on so quickly. my daughter started chemo in oct, she will be havin 7 days chemo, 14 days off, for the next 12 months, then radiotherapy after. she also has a shunt fitted and unable to walk with poor balance & co-ord probs, please tell me all about yr daughter and how u all coped as a family blip nikkiBridget wrote:Dear Nikki,
CPC is extremely rare. When was your child dianosed? At what age? The rule of thumb (15 yrs ago, anyway) was that if your child survived to the age that equals 2x the age at diagnosis: they were "cured". At what locatin of the brain is the tumor? Resection partial or near total? I'd be more than happy to answer all of your questions!!!!
~Bridget
hi bridget, thx 4 all that advice, i hav made great friends with others in both the neuro hosp & the oncology hosp, i hav a great social worker, i do hav other kids, nathan 16 and jordan 11. freinds & family hav been great too. i am also a single mum! does carly hav any problems now, emotional, physical etc, thanx nikki blipBridget wrote:Dear Nikki,
My daughter was 10 months old at dx. We had visited no less than 10
drs. with lots of misdiagnosed colic, ear infection, etc. The initial chemo was difficult, Carly also has a shunt. There is a newsgroup specifically for those parents whose kids are currently undergoing chemo/ radiation. That support was very helpful to me. Also seek a parent group of kids with cancer through your hospital. Our hospital also provided a psychologist to work with each family member. Do you have other children? Social workers are also helpful. It is a difficult time, try to take one day at a time, do not worry about what may or may not happen tomorrow, and try to do ONE thing for yourself each day (even if it's just a bath). One thing that helped me was a little physical exercise. Let your family and friends do as much for you as possible. ~Bridget
hi kelly, i am truly sorry to hear about matthew, you and your family are in my thoughts, please keep in touch, i am always here to listen, love nikkikellbell wrote:Hi. I am happy to hear tabitha is doing alright. I am sad to report that my son Matthew lost his battle on April 30th. He had surgery to relieve pressure in his brain in the middle of March and never got his strength back. He fought hard for 5 years. I wish everyone the CPC the best of luck and you will be in my thoughs and prayers.
Kelly
twotabs wrote:hi kelly, i am truly sorry to hear about matthew, you and your family are in my thoughts, please keep in touch, i am always here to listen, love nikkikellbell wrote:Hi. I am happy to hear tabitha is doing alright. I am sad to report that my son Matthew lost his battle on April 30th. He had surgery to relieve pressure in his brain in the middle of March and never got his strength back. He fought hard for 5 years. I wish everyone the CPC the best of luck and you will be in my thoughs and prayers.
Kelly
Amilioto53 wrote:Hello,
I am new to this board. My son, 2 weeks old at the time, was diagnosed with an Atypical Choroid Plexus Papilloma. He is now almost 3 months old and due for his first MRI next week. I was wondering if anyone had any experience with an Atypical CPP?
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