We went to church with Matt and Leslie when they lived in Asheville, NC. Our prayers and love go out to you and your family. We are thinking of you and the whole family.
I'm a friend of Kamry's and have been following your blog. Your boys are just the cutest (I love those cheeks in this picture). I hope that the doctors are able to help you and help with finding the right solutions for your boys. We are praying for your family as your story has touched us. You are an amazing example of faith to all those you know. Lots of hugs!
Just started following your family and your sweet sweet boys. Our son Jonas wasn't diagnosed until he just after he turned 3. His tumor was so large that he was totally blind and it was coming dangerously close to hitting his optic nerve. (we were so blessed that his pre-school teacher at church caught it in a certain light at school - don't even get me started on his GP and how he was diagnosed with behavior problems and pink eye for a good 8 months....) His right eye was removed immediately and he underwent 6 months of chemotherapy. He is 4 and a half now and has his next MRI in May. It actually took about 4 months for the swelling in his right eye to go down enough to be fitted for the prothesis - but once he was fitted - it has fit like a glove. If you ever need anyone to chat with or vent to - please don't hesitate to reach out via email and I can give you my cell phone. maryellenwarta@gmail.com. We are actually down here in Atlanta - and he is a patient at the AFLAC Cancer Center at CHOA. I can't imagine going through this with 3 little squirts - my thoughts and prayers are with you, your family and all of your children.
Thanks for sharing the beautiful pictures of your boys! You're always on our minds and in our prayers!!! We hope you feel the support of angels holding you up.
My name's Kim Nursall and I'm a reporter with the Toronto Star -- would love to share your story. Please be in touch as soon as you can: 416.869.4838. knursall@thestar.ca
Hi, I read your story in the papers over here in the UK and just wanted to share my story. I had retinablastoma as a kid. My parents repeatedly took me to the doctor to express their concern and were repeatedly told there was nothing wrong with me. Eventually, (18mths later!) my dad went for an eye test and took me with him. The optician checked my dad out then just by chance offered to check me... I can still remember the look on that guys face! He pretty much fell off his chair in a scramble to get to the phone to call an ambulance.
My parents were devastated. The tumour was so advanced it was like a large orange about to explode and had been growing from birth or very soon after according to doctors. I was taken straight to the nearest hospital, whipped into the operating room and was dealt with that very same day, no time to catch a breath. One month more they reckoned and the outcome would have been incredibly different.
My point isnt to scare you... it's one of hope I guess. I was 3 when all this happened and this year I turn 30. I drive, I even ride a motorbike. I've never had any issues about excersice, schooling, activities etc. I am, when tired a bit prone to bumping into door frames! I can honestly, hand on heart tell you I've never had any issues regarding my eye besides confidence issues, being a girl, being a teenager!! I never had an opportunity to meet someone who had been through the same thing until I was much much older and the silver lining to your story is that your boys have one another. I have beautiful blue/green eyes and all the prosthetics I've ever had have been awesome! The colour match, the craftsmanship everything. People are so shocked when I tell them it's glass.
One thing I love to tell people is how my mum has kept every single eye. She keeps them like people keep locks of hair and all that baby stuff. Except she keeps them in ring boxes so if ever she gets burgled the thief will have a real shock when the examine their haul! Or... I have an older brother who used to torture me so when he wasnt looking I'd pop my eye out and hide it in his drink or cereal.
Yours boys are gorgeous and will continue to be. They will lead incredible lives and they will guide one another though any difficult times. Whatsmore is the great company they are in... Peter Falk aka Columbo! I mean, whats not to love about that? You'll have loads of adventures just like you would have had you not had this diagnosis. Best of luck to you all xx
Such a cutie!! Love you, Thomas!
ReplyDeleteWhat a handsome guy! You are such a wonderful family. We are preying for you all!
ReplyDeleteWe went to church with Matt and Leslie when they lived in Asheville, NC. Our prayers and love go out to you and your family. We are thinking of you and the whole family.
ReplyDeleteOh my goodness Leslie he looks so beautiful! Thinking of you and praying for you lots over here!
ReplyDeleteI'm a friend of Kamry's and have been following your blog. Your boys are just the cutest (I love those cheeks in this picture). I hope that the doctors are able to help you and help with finding the right solutions for your boys. We are praying for your family as your story has touched us. You are an amazing example of faith to all those you know. Lots of hugs!
ReplyDeleteSo glad he is doing well and looking as cute as ever!!
ReplyDeleteIs there a way to send a private message to the family? emails?
ReplyDeleteKelly Kennedy
403-327-5452 kellykennedy2013@gmail.com
Just started following your family and your sweet sweet boys. Our son Jonas wasn't diagnosed until he just after he turned 3. His tumor was so large that he was totally blind and it was coming dangerously close to hitting his optic nerve. (we were so blessed that his pre-school teacher at church caught it in a certain light at school - don't even get me started on his GP and how he was diagnosed with behavior problems and pink eye for a good 8 months....) His right eye was removed immediately and he underwent 6 months of chemotherapy. He is 4 and a half now and has his next MRI in May. It actually took about 4 months for the swelling in his right eye to go down enough to be fitted for the prothesis - but once he was fitted - it has fit like a glove. If you ever need anyone to chat with or vent to - please don't hesitate to reach out via email and I can give you my cell phone. maryellenwarta@gmail.com. We are actually down here in Atlanta - and he is a patient at the AFLAC Cancer Center at CHOA. I can't imagine going through this with 3 little squirts - my thoughts and prayers are with you, your family and all of your children.
ReplyDeleteThanks for sharing the beautiful pictures of your boys! You're always on our minds and in our prayers!!! We hope you feel the support of angels holding you up.
ReplyDeleteHello,
ReplyDeleteMy name's Kim Nursall and I'm a reporter with the Toronto Star -- would love to share your story. Please be in touch as soon as you can: 416.869.4838. knursall@thestar.ca
Kim
He looks amazing :) What a strong boy!! keeping u in my prayers
ReplyDeleteYour boys are beautiful! they are in my prayers
ReplyDeleteHi, I read your story in the papers over here in the UK and just wanted to share my story. I had retinablastoma as a kid. My parents repeatedly took me to the doctor to express their concern and were repeatedly told there was nothing wrong with me. Eventually, (18mths later!) my dad went for an eye test and took me with him. The optician checked my dad out then just by chance offered to check me... I can still remember the look on that guys face! He pretty much fell off his chair in a scramble to get to the phone to call an ambulance.
ReplyDeleteMy parents were devastated. The tumour was so advanced it was like a large orange about to explode and had been growing from birth or very soon after according to doctors. I was taken straight to the nearest hospital, whipped into the operating room and was dealt with that very same day, no time to catch a breath. One month more they reckoned and the outcome would have been incredibly different.
My point isnt to scare you... it's one of hope I guess. I was 3 when all this happened and this year I turn 30. I drive, I even ride a motorbike. I've never had any issues about excersice, schooling, activities etc. I am, when tired a bit prone to bumping into door frames! I can honestly, hand on heart tell you I've never had any issues regarding my eye besides confidence issues, being a girl, being a teenager!! I never had an opportunity to meet someone who had been through the same thing until I was much much older and the silver lining to your story is that your boys have one another. I have beautiful blue/green eyes and all the prosthetics I've ever had have been awesome! The colour match, the craftsmanship everything. People are so shocked when I tell them it's glass.
One thing I love to tell people is how my mum has kept every single eye. She keeps them like people keep locks of hair and all that baby stuff. Except she keeps them in ring boxes so if ever she gets burgled the thief will have a real shock when the examine their haul! Or... I have an older brother who used to torture me so when he wasnt looking I'd pop my eye out and hide it in his drink or cereal.
Yours boys are gorgeous and will continue to be. They will lead incredible lives and they will guide one another though any difficult times. Whatsmore is the great company they are in... Peter Falk aka Columbo! I mean, whats not to love about that? You'll have loads of adventures just like you would have had you not had this diagnosis. Best of luck to you all xx
Karen, you sound like one awesome lady. I laughed and cried reading your comment. So real, and full of hope and fun at the same time. ;)
DeleteStill handsome!!!
ReplyDelete