we were a normal family, okay we knew there was an issue with Harry's eyes and we were just thinking he may be the kid with glasses in school, but life was pretty normal.
I'd argued with the opthalmic dept why he needed such an urgent appointment, but they were just going off the GP's instructions, and Friday 1st April at 2:10pm was agreed.
People often say time's a healer, but its not true, not really. I can still feel that 'sledgehammer in the chest' feeling when we got his diagnosis confirmed, I can still see his weak little poorly face as he endured the nasty chemo, I can still hear his wailing as they forced his feeding tube into him, and I can still see his little pleading eyes everytime I take him into theatre, and I can always feel the label stuck to me as 'the mother of the child with cancer' It doesnt matter how hard you pull at it, it never comes off, and it never will.
What has happened with time is that I've learnt to deal with it better, be the best mummy I can be for all my children, nurture them and help them grow and hopefully set them onto their own little path to successfulness. They did not ask to be born, it is their right to be able to grow and develop to their best potential and to have the best health they can. It is my job to help them do this, so when people say 'We don't know how you do it' its simple, I'm a mummy and I have to, no matter how hard or what hurdles are in place to trip me, I'm a mummy and I have to.
So if you're a mummy who's lucky enough to avoid some of the hurdles I and other mummies with children with cancer face, reflect on what you have and count your blessings, as I would love to be in your shoes. I will re-post 'These Shoes' as its so true x
THESE SHOES
I wear a pair of shoes, they are ugly shoes, uncomfortable shoes
I hate my shoes
Each day I wear them and each day I wish I had another pair.
Some days my shoes hurt so bad that I do not think I can take another step
Yet, I continue to wear them.
I get funny looks wearing these shoes, they are looks of sympathy.
I can tell in others eyes that they are glad they are my shoes and not theirs.
They never talk about my shoes, to learn how awful my shoes are might make them uncomfortable.
To truly understand these shoes you must walk in them.
But, once you put them on, you can never take them off.
I now realize I am not the only one who wears these shoes.
There are many pairs in this world.
Some women are like me and ache daily as they try and walk in them.
Some have learned how to walk in them so they don't hurt quite as much.
Some have worn the shoes so long that days will go by before they think about how much they hurt.
No woman deserves to wear these shoes.
They have made me who I am.
I will forever walk in the shoes of a mother who has a child with cancer.
Wednesday, 28 March 2012
Saturday, 24 March 2012
Time Flies and we've had so much fun
I can't believe yet again I've left it so long since my last blog update, time really does fly.
I've enjoyed a lovely mothers day since then, with the most wonderful homemade cards from the kids, by far better than any shop bought card. I was also treated to a huge box of thorntons choccies, which my 3 older angels decided to instil the meaning of sharing and promptly ate most of them, I ate 6 of my fave's all at once and felt a little sicky but they were mine!!
A humorous story from Matthew, which nearly caused me to swerve off the road as I stifled laughter.
On the way home from school, one day last week, he calmly asked if I had any white mice. I was a little puzzled, did he mean the chocolate mice I sometimes get from Asda?? So I asked him, mice? what do you mean??
Camerons mum (one of his best mates from school) has white mice, and he told us that women can sometimes have blood down er er (pointing downwards) and the white mice stop it. HAR HAR HAR HAR HAR HAR HAR, I sniggered all the way home, and I truthfully told him I don't have mice, well not right at that minute. I so couldnt wait for school the next day to inform Cam's mum what delightful tales her little treasure was telling. She was, as to be expected, slightly embarrassed. He had demanded to know what her Tampax was, whilst shopping in Sainsburys and as he read aloud the blurb on the box she decided to tell him in a round about way what they were for to shut him up. Well it didnt work, and now the entire yr3 and 4 know what her 'White mice' are for. Still sniggering.
Its a real dang when your 7yr old can read everything. Glad Matthew hates shopping.
Harry is gaining in strength everyday, and can now sit up with ease with an air of 'ta dah' as he does it. He remains commando style when crawling, and loves being on his feet. He whacked his head a few times, especially when turning to the left, don't think he has much sight if any in that eye. He was sitting playing with one of his toys and I covered his left eye, didnt murmur or bat an eyelid. Covered his right and he didnt like it, kept trying to look round it and pull it off. But he is so snuggly and cuddly and now says 'all gone' when his foods all gone. Uber sweet. He gets giddy at the sound of the microwave pinging, he knows grubs on its way. Must be confusing when its made fresh and it just appears without the ping.
William loves going to school with Madeleine on friday, I was reminded that William needs to learn his letter sound rather than its name, ie not Ay Bee Cee Dee but they are rather blown away that he can point out all the letters of the alphabet and can count to 30. Especially as he's only 2. Heavens sake, he goes to play not to do his SATS. Madeleine has started being really clingy and crying when I drop her off, which is a little puzzling, school have assured that nothing has happened cos she mainly plays by herself. Now that is heartbreaking too, poor Madeleine. Just a phase I hope, she's ok at home and has told me schools ok, and everytime I pick her up she's always had a good time.
Latest piccie, shows my eldest and youngest angel enjoying a cuddle. Matthew loves Harry to the point of smothering him, I love all my kids, they'e the best.
I've enjoyed a lovely mothers day since then, with the most wonderful homemade cards from the kids, by far better than any shop bought card. I was also treated to a huge box of thorntons choccies, which my 3 older angels decided to instil the meaning of sharing and promptly ate most of them, I ate 6 of my fave's all at once and felt a little sicky but they were mine!!
A humorous story from Matthew, which nearly caused me to swerve off the road as I stifled laughter.
On the way home from school, one day last week, he calmly asked if I had any white mice. I was a little puzzled, did he mean the chocolate mice I sometimes get from Asda?? So I asked him, mice? what do you mean??
Camerons mum (one of his best mates from school) has white mice, and he told us that women can sometimes have blood down er er (pointing downwards) and the white mice stop it. HAR HAR HAR HAR HAR HAR HAR, I sniggered all the way home, and I truthfully told him I don't have mice, well not right at that minute. I so couldnt wait for school the next day to inform Cam's mum what delightful tales her little treasure was telling. She was, as to be expected, slightly embarrassed. He had demanded to know what her Tampax was, whilst shopping in Sainsburys and as he read aloud the blurb on the box she decided to tell him in a round about way what they were for to shut him up. Well it didnt work, and now the entire yr3 and 4 know what her 'White mice' are for. Still sniggering.
Its a real dang when your 7yr old can read everything. Glad Matthew hates shopping.
Harry is gaining in strength everyday, and can now sit up with ease with an air of 'ta dah' as he does it. He remains commando style when crawling, and loves being on his feet. He whacked his head a few times, especially when turning to the left, don't think he has much sight if any in that eye. He was sitting playing with one of his toys and I covered his left eye, didnt murmur or bat an eyelid. Covered his right and he didnt like it, kept trying to look round it and pull it off. But he is so snuggly and cuddly and now says 'all gone' when his foods all gone. Uber sweet. He gets giddy at the sound of the microwave pinging, he knows grubs on its way. Must be confusing when its made fresh and it just appears without the ping.
William loves going to school with Madeleine on friday, I was reminded that William needs to learn his letter sound rather than its name, ie not Ay Bee Cee Dee but they are rather blown away that he can point out all the letters of the alphabet and can count to 30. Especially as he's only 2. Heavens sake, he goes to play not to do his SATS. Madeleine has started being really clingy and crying when I drop her off, which is a little puzzling, school have assured that nothing has happened cos she mainly plays by herself. Now that is heartbreaking too, poor Madeleine. Just a phase I hope, she's ok at home and has told me schools ok, and everytime I pick her up she's always had a good time.
Latest piccie, shows my eldest and youngest angel enjoying a cuddle. Matthew loves Harry to the point of smothering him, I love all my kids, they'e the best.
Wednesday, 14 March 2012
a break at last ...
Well, Harry's left eye must have been jealous of the goody right eye and decided to play ball this time.... we have no new growth in either eye. That makes it 3 visits for the right, and the first for the left. Happy???? you bet.
Well, cautiously optimistic. Consultant re-iterated not to build up hopes too high as the next visit may be different and they are still concerned about the patch on his left eye over the optic nerve. I get the feeling it could still be tumour tissue but its appearance remains unchanged. They say it COULD be scarring from chemo but they can't be sure as it also has appearance of tumour tissue too, and as the optic nerve is the pathway out of the eye, we obviously don't want it to even think about creeping along the nerve.So despite this, we still have to go back in 4wks time.
But still, no new growth is fantastic and we will take this anyday. It meant we had a super quick getaway and I was home in time to collect Matthew from school.
Also some fabulous news for Kyle, Harry's big buddy who's also giving this RB cancer a run for its money, his right eye is behaving and they don't want him back for 7 weeks. Way to go Kyle, we're so pleased for you.
Sending hugs to little Macey too, who seems to be suffering from the chemo, but Harry and Kyle are blowing their magic your way and hopefully you'll pick up soon x
Some friends offered us their cotbed thinkin we needed one for Harry (god knows what they were thinking i was sleeping him in) so as William is on the brink of moving out of the cot we decided we'd give it to him and then convert it into the bed for him.
I sadly dismantled the lovely cot my sister Rachel lent me when we had Matthew. Its still in amazing condition despite being 18yrs old. The cotbed is massive, it also doesnt have dropsides so when I tried to make the mattress up, I almost fell in (being of short stature with almost non-existent legs) so am thinking I might turn it into a bed sooner rather than later, as gently placing a sleeping William into it will never happen, more like freefall and needing a parachute poor lamb.
Harry can now sit himself up, has got 2 new teeth on the bottom (grand total 8) and can clap and just about pulled himself onto his feet using the little grippy piping we have on the settee cushions. He probably would have got there had William not peeled his fingers off saying 'dont touch settee'
I must take some pics, but for those who havent seen earlier posts and need a Harry fix ( apologies to you who have seen this one but who cares)
Well, cautiously optimistic. Consultant re-iterated not to build up hopes too high as the next visit may be different and they are still concerned about the patch on his left eye over the optic nerve. I get the feeling it could still be tumour tissue but its appearance remains unchanged. They say it COULD be scarring from chemo but they can't be sure as it also has appearance of tumour tissue too, and as the optic nerve is the pathway out of the eye, we obviously don't want it to even think about creeping along the nerve.So despite this, we still have to go back in 4wks time.
But still, no new growth is fantastic and we will take this anyday. It meant we had a super quick getaway and I was home in time to collect Matthew from school.
Also some fabulous news for Kyle, Harry's big buddy who's also giving this RB cancer a run for its money, his right eye is behaving and they don't want him back for 7 weeks. Way to go Kyle, we're so pleased for you.
Sending hugs to little Macey too, who seems to be suffering from the chemo, but Harry and Kyle are blowing their magic your way and hopefully you'll pick up soon x
Some friends offered us their cotbed thinkin we needed one for Harry (god knows what they were thinking i was sleeping him in) so as William is on the brink of moving out of the cot we decided we'd give it to him and then convert it into the bed for him.
I sadly dismantled the lovely cot my sister Rachel lent me when we had Matthew. Its still in amazing condition despite being 18yrs old. The cotbed is massive, it also doesnt have dropsides so when I tried to make the mattress up, I almost fell in (being of short stature with almost non-existent legs) so am thinking I might turn it into a bed sooner rather than later, as gently placing a sleeping William into it will never happen, more like freefall and needing a parachute poor lamb.
Harry can now sit himself up, has got 2 new teeth on the bottom (grand total 8) and can clap and just about pulled himself onto his feet using the little grippy piping we have on the settee cushions. He probably would have got there had William not peeled his fingers off saying 'dont touch settee'
I must take some pics, but for those who havent seen earlier posts and need a Harry fix ( apologies to you who have seen this one but who cares)
Saturday, 10 March 2012
GI Harry
Harry has forward motion HOOOOORAYYYYYYYYYYYYYYYYYYYYYYYYYYYYYYYYY
He can crawl commando style, just like Matthew and Madeleine did. Its a day I didnt think we'd see, he seemed quite content to roly poly. I will get a piccie and post in due course. But way to go Harry. Its also proved his left eye is poor as he turned and whacked his head on the hugest biggest black chair, and he obviously didnt see it. Prob won't be the last of the bumps and if Lynne is right, he should learn the room layout quite quickly once he's moving and bumps should become less frequent. Just don't go moving things round.
Well tomorrow is almost here, and my darling sis couldnt be persuaded to feel a bit ill on Monday and come with me. I only jokingly asked, I could never expect her to do that, but am looking forward to meeting Rachel my twitter friend.
Will update on Monday with hopefully the good news from his EUA.
He can crawl commando style, just like Matthew and Madeleine did. Its a day I didnt think we'd see, he seemed quite content to roly poly. I will get a piccie and post in due course. But way to go Harry. Its also proved his left eye is poor as he turned and whacked his head on the hugest biggest black chair, and he obviously didnt see it. Prob won't be the last of the bumps and if Lynne is right, he should learn the room layout quite quickly once he's moving and bumps should become less frequent. Just don't go moving things round.
Well tomorrow is almost here, and my darling sis couldnt be persuaded to feel a bit ill on Monday and come with me. I only jokingly asked, I could never expect her to do that, but am looking forward to meeting Rachel my twitter friend.
Will update on Monday with hopefully the good news from his EUA.
Friday, 9 March 2012
2 more sleeps ..
I can't believe where this week has gone, I had meant to write in this blog a bit more often, but well the best laid plans often go out of the window.
Its been a busy week, I've become friends with a new family on facebook who's little boy Kyle was recently diagnosed with BRB. He's sadly lost an eye and is receiving laser treatment to his remaining eye. What I find amazing is that he's 8 and a half. Age 6 was indicated to be the upper age it can happen, and thats the milestone I'd mentally set for Harry but am going to have to rethink that one. They seem a lovely family and I hope we will become good friends, typical they're down south, I still have to find someone quite close to us.
Katy remains a good friend and I hope we can amass more people in raising awareness for retinoblastoma.
Harry had a visit from Lynn, his Visual Impairment teacher who he loves. They need to build a good relationship together as they will be spending a lot of time together. She is really pleased with him, he's becoming more mobile and we're learning what his sight limits are, he still whacks his head when he's rolling but he seems to have adopted a strange cock-eyed head position when he's in front of the TV. The 50" screen has to help!! His Occupational Therapist also came, she wanted to see what Lynn does with him. His physio is coming next week to go through the plan she's put together and then they will all come again just after Easter. We've got so many plans we have to do with him, and I know he needs it but sometimes it feels like we're not allowed just to let him be. Our lives are controlled by his many appointments and when one's over there's always another just around the corner. Its 12mths since we went back to the GP and she told us she was going to refer him to ophthalmology and ever since we've practically spent every waking moment working round hospital appointments.
I REALLY REALLY HATE BRB, and I am really scared of what it can do to children, and I live in hope Harry will be one of the lucky ones and just have to learn living with rubbish eyesight, the other outcomes are not acceptable.
Well, 2 more sleeps til Birmingham. Am sure all will be okay, it better had be.
Its been a busy week, I've become friends with a new family on facebook who's little boy Kyle was recently diagnosed with BRB. He's sadly lost an eye and is receiving laser treatment to his remaining eye. What I find amazing is that he's 8 and a half. Age 6 was indicated to be the upper age it can happen, and thats the milestone I'd mentally set for Harry but am going to have to rethink that one. They seem a lovely family and I hope we will become good friends, typical they're down south, I still have to find someone quite close to us.
Katy remains a good friend and I hope we can amass more people in raising awareness for retinoblastoma.
Harry had a visit from Lynn, his Visual Impairment teacher who he loves. They need to build a good relationship together as they will be spending a lot of time together. She is really pleased with him, he's becoming more mobile and we're learning what his sight limits are, he still whacks his head when he's rolling but he seems to have adopted a strange cock-eyed head position when he's in front of the TV. The 50" screen has to help!! His Occupational Therapist also came, she wanted to see what Lynn does with him. His physio is coming next week to go through the plan she's put together and then they will all come again just after Easter. We've got so many plans we have to do with him, and I know he needs it but sometimes it feels like we're not allowed just to let him be. Our lives are controlled by his many appointments and when one's over there's always another just around the corner. Its 12mths since we went back to the GP and she told us she was going to refer him to ophthalmology and ever since we've practically spent every waking moment working round hospital appointments.
I REALLY REALLY HATE BRB, and I am really scared of what it can do to children, and I live in hope Harry will be one of the lucky ones and just have to learn living with rubbish eyesight, the other outcomes are not acceptable.
Well, 2 more sleeps til Birmingham. Am sure all will be okay, it better had be.
Sunday, 4 March 2012
THESE SHOES
THESE SHOES
I wear a pair of shoes, they are ugly shoes, uncomfortable shoes
I hate my shoes
Each day I wear them and each day I wish I had another pair.
Some days my shoes hurt so bad that I do not think I can take another step
Yet, I continue to wear them.
I get funny looks wearing these shoes, they are looks of sympathy.
I can tell in others eyes that they are glad they are my shoes and not theirs.
They never talk about my shoes, to learn how awful my shoes are might make them uncomfortable.
To truly understand these shoes you must walk in them.
But, once you put them on, you can never take them off.
I now realize I am not the only one who wears these shoes.
There are many pairs in this world.
Some women are like me and ache daily as they try and walk in them.
Some have learned how to walk in them so they don't hurt quite as much.
Some have worn the shoes so long that days will go by before they think about how much they hurt.
No woman deserves to wear these shoes.
They have made me who I am.
I will forever walk in the shoes of a mother who has a child with cancer.
1 Week til Harry's next EUA. Am feeling anxious, I know it will be good news but I've still got a deep down dreaded feeling, maybe its cos I'm going on my own, just hope there's nothing bad cos dont think my taxi driver will be too keen to give out hugs lol
I wear a pair of shoes, they are ugly shoes, uncomfortable shoes
I hate my shoes
Each day I wear them and each day I wish I had another pair.
Some days my shoes hurt so bad that I do not think I can take another step
Yet, I continue to wear them.
I get funny looks wearing these shoes, they are looks of sympathy.
I can tell in others eyes that they are glad they are my shoes and not theirs.
They never talk about my shoes, to learn how awful my shoes are might make them uncomfortable.
To truly understand these shoes you must walk in them.
But, once you put them on, you can never take them off.
I now realize I am not the only one who wears these shoes.
There are many pairs in this world.
Some women are like me and ache daily as they try and walk in them.
Some have learned how to walk in them so they don't hurt quite as much.
Some have worn the shoes so long that days will go by before they think about how much they hurt.
No woman deserves to wear these shoes.
They have made me who I am.
I will forever walk in the shoes of a mother who has a child with cancer.
1 Week til Harry's next EUA. Am feeling anxious, I know it will be good news but I've still got a deep down dreaded feeling, maybe its cos I'm going on my own, just hope there's nothing bad cos dont think my taxi driver will be too keen to give out hugs lol
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