childhood medullablastoma

rhosyne

this is for anyone who has recently found out that their child or grandchild has got a medullablastoma tumour.I havent been on this site for 2 years and have read someone trying to see if anyone younger than 2 years has ever had one.Well my grandson Sam had one ay 8 months old.That was in 2006.He had surgery to remove tumour and the chemo and radiotherapy when he was 1 year old.We were advised that radiotherapy at such a young age could learn to learning difficulties and they were right.It was the darkest time of my life and my daughters life,but after about 2 years of constant hospital stays and visits we seemed to have survives.Sam is nowcoming up to 5 and is the happiest little boy with a strong personality.he is a bit wobbly on his legsas he did not start walking until he was 3.He wears glasses and is hard of hearing.He goes to nursey school every day and has growth hormone injections each night.So for anyone reading this who is down at the moment there is hope and life but its just different.I hope this has helped someone somewhere

Doribelle

So glad to hear your
So glad to hear your grandson is doing well. My son will be 5 next month and he completed treatment in late August of 2009. He has been in remission since completeing Radiation which was a year in February. We hold our breath when each MRI comes around. I love to hear survivor stories that give me hope, Thank you.