Well William was bouncing around his cot and demanding to get out right now. Looked at the clock and thought oh William its a little early but out he came and then realisation dawned... the clocks had gone back and it was really 4.24am. No amount of coaxing was going to get him back into bed. This is going to be a long day.
Harry's eyes are still a bit sore, his left is still quite bloodshot, one of the side effects of the laser, and they are both a bit weepy. To top it off, I think he's caught Madeleine's snotty nose. He's just sneezed 2 spectacular candles yuk. Amazing, all the time his counts were at baseline not once did he get a runny nose. His consultant did say it takes 6month after chemo has stopped for his immunity to build back to a normal level so I suppose he will be a little more susceptible. Chicken Pox and measles are still to be avoided like the plague, and if we suspect he has it he needs medical attention. Great when we are just entering the season of such illnesses.
On Friday 8th April 2011 our darling son was diagnosed with Bilateral Retinoblastoma, a very rare childhood cancer and it blew our world apart. This blog will share his journey
Sunday, 30 October 2011
Saturday, 29 October 2011
Leave Harry alone!!!!!!!!!!!!
Well we went to Birmingham and my beautoful baby boy was put to sleep for the 8th time and we had the horrid hours wait. Hoping for good news again, but no we got a kick in the teeth.
Harry had grown 6 new seedling tumours, 2 in his better right eye and 4 in his poorer left. They lasered them hopefully destroying them before they have chance to grow any bigger. The existing tumors still remain inactive, some good news at least. The consultant seemed upbeat and was almost expecting to see this, as it was 2 months since his chemo finished and his eyes and retinas were settling down but not to me.
New tumors are still new tumors and they HAVE ABSOLUTELY NO RIGHT WHATSOEVER GROWING IN MY BABY'S EYES so cancer hear this, next time we go in 4wks time you better stay away or you will have his mamma to deal with!!!!!
Despite this, he is still his usually giggly self with his shadow of blonde hair looking a little thicker and now has 2 little peggies. (bitten once ouch). You super little fighter dude Harry xx
Harry had grown 6 new seedling tumours, 2 in his better right eye and 4 in his poorer left. They lasered them hopefully destroying them before they have chance to grow any bigger. The existing tumors still remain inactive, some good news at least. The consultant seemed upbeat and was almost expecting to see this, as it was 2 months since his chemo finished and his eyes and retinas were settling down but not to me.
New tumors are still new tumors and they HAVE ABSOLUTELY NO RIGHT WHATSOEVER GROWING IN MY BABY'S EYES so cancer hear this, next time we go in 4wks time you better stay away or you will have his mamma to deal with!!!!!
Despite this, he is still his usually giggly self with his shadow of blonde hair looking a little thicker and now has 2 little peggies. (bitten once ouch). You super little fighter dude Harry xx
Friday, 21 October 2011
tfi friday
Some fab facts about today
1) Its friday
2) Last day of school so no school runs for a week
3) Dan started run of 4 night shifts today so TV, sofa and Bed all to myself.
Matthew is whizzing through is times tables, and got a really good half term report. Clever clever boy, just like his mummy. Madeleine can't wait to go to Matthew's school. Bet she changes her tune come next September when she has to go. William continues to be uber cuddly and sweet and Harry has 2 teeth.
He had a follow up in Manchesterthis week. They were pleased with him and how quickly he seems to have bounced back from his last chemo. His immunity will take 6mths to recover so we still have to watch out for chicken pox and measles, but apart from that his immunisations can re-start. They will see him in 6mths as he will be going to Birmingham every 4weeks for the next god knows how long.
It seems a little strange thinking about chemo in the past, it sometimes only seems like 5mins since 13th april and we had it all to come.You think 'how are we going to cope etc etc' and he we are. It was hard, tear breakingly tough sometimes but we still got through it. I cannot thank enough my family and friends who came through with us. The chemo may be over for now, but we still have the long journey to carry on and next week is creeping nearer and nearer. Please please everyting be okay.
Rachel has a date for her gallbladderectomy, 9th Nov. Reassuringly near, but still horrid for her. Hope she doesnt feel too bad afterwards, Chrimbo wont be that far away and she has to be better for that. She is normal looking again, much to Matthew's disgust. He was most impressed with her yellowness.
Quick thought for Cameron, my friends little boy, who is getting ready for his bone marrow transplant. A tough little cookie who will kick the ass of ALL. I hate Cancer, leave these sweet little children alone!
1) Its friday
2) Last day of school so no school runs for a week
3) Dan started run of 4 night shifts today so TV, sofa and Bed all to myself.
Matthew is whizzing through is times tables, and got a really good half term report. Clever clever boy, just like his mummy. Madeleine can't wait to go to Matthew's school. Bet she changes her tune come next September when she has to go. William continues to be uber cuddly and sweet and Harry has 2 teeth.
He had a follow up in Manchesterthis week. They were pleased with him and how quickly he seems to have bounced back from his last chemo. His immunity will take 6mths to recover so we still have to watch out for chicken pox and measles, but apart from that his immunisations can re-start. They will see him in 6mths as he will be going to Birmingham every 4weeks for the next god knows how long.
It seems a little strange thinking about chemo in the past, it sometimes only seems like 5mins since 13th april and we had it all to come.You think 'how are we going to cope etc etc' and he we are. It was hard, tear breakingly tough sometimes but we still got through it. I cannot thank enough my family and friends who came through with us. The chemo may be over for now, but we still have the long journey to carry on and next week is creeping nearer and nearer. Please please everyting be okay.
Rachel has a date for her gallbladderectomy, 9th Nov. Reassuringly near, but still horrid for her. Hope she doesnt feel too bad afterwards, Chrimbo wont be that far away and she has to be better for that. She is normal looking again, much to Matthew's disgust. He was most impressed with her yellowness.
Quick thought for Cameron, my friends little boy, who is getting ready for his bone marrow transplant. A tough little cookie who will kick the ass of ALL. I hate Cancer, leave these sweet little children alone!
Tuesday, 11 October 2011
Aw Harry you happy little boy. The chemo must be out of your system. We finally have very blonde hair sprouting, its ultra fine but what they hey, its still hair. Also your second tooth is just about to pop out on the bottom.We can almost imagining your a normal baby with nothing wrong. 2 weeks to go til we're back in Birmingham. I am so so nervous, as it will have been 8wks since your chemo finished and I am hoping to god everyting will still look dead with no re-growth or god forbid new growth.
Sunday, 2 October 2011
Well my car is dead and fit for nowt. So have now got a slightly older but miles better Galaxy. And its blue. Madeleine wanted to know when I'd painted the new car. She's so funny. She's full of why questions at the minute, and always at the most inppropriate moment.
Well I've been down to Birmingham and this time Rachel came. I thought the break would do her good. We spent an hour trawling the shops looking for some sandals/flip flops for me as I'd gone down in shoes and it was mega hot. Not easy when most shops are now stocking the Autumn/Winter range. Thank heavens for Primark. Madeleine wanted to know why I got auntie Rachels shoes on when we got back.
Anyway, Harry knew where he was, as night fell he turned from the lovely cooing little baby into the 'I will not go to sleep crying baby' and after an hours rocking auntie rachel finally got him off to sleep. I was erm fast asleep too, soz Rachel.
I made our brekky nice and early, ready made porridge, all you need is hot water. They were in Pot Noodle type pots and eaten with the accidentlly fell into my bag plastic spoons from M&S. We dutifully arrived before 8am, as instructed on our letter, and did they start at 8? no friggin way. About 8.30am they decided to start weighing and putting in eye drops etc, but still Harry was first down.
The result, his right eye tumours were all looking dead. They lasered anyway just in case a sneaky little cell was hiding somewhere, they will carry on laser for the next few visits. His left eye, they lasered the little seedling tumours, which too looked dead, but there was a query over the big tumour. Its appearance, in the specialists opinion, looked like dead tumour but a reaction to the laser giving it an odd appearance. It could also be live tumour still. 50/50 aint bad I suppose. He wanted to leave it alone and see what it was like next time. If it looks the same, then its just the way the dead tumour has left a scar, if its changed then its still alive. No harm will come to Harry, they will laser it next time.
No more chemo too, if anything should grow back they will try other treatments first, chemo only if they don't work. So stay away you nasty tumours.
So all in all pretty good news and we set off with a little lift in our step, only to have it dashed severely by ther bloody awful traffic on the M6. It was sooo hot, we had the windows opened and was deafened as the aircon wasnt working. But home we landed, back in 4 weeks time.
Well I've been down to Birmingham and this time Rachel came. I thought the break would do her good. We spent an hour trawling the shops looking for some sandals/flip flops for me as I'd gone down in shoes and it was mega hot. Not easy when most shops are now stocking the Autumn/Winter range. Thank heavens for Primark. Madeleine wanted to know why I got auntie Rachels shoes on when we got back.
Anyway, Harry knew where he was, as night fell he turned from the lovely cooing little baby into the 'I will not go to sleep crying baby' and after an hours rocking auntie rachel finally got him off to sleep. I was erm fast asleep too, soz Rachel.
I made our brekky nice and early, ready made porridge, all you need is hot water. They were in Pot Noodle type pots and eaten with the accidentlly fell into my bag plastic spoons from M&S. We dutifully arrived before 8am, as instructed on our letter, and did they start at 8? no friggin way. About 8.30am they decided to start weighing and putting in eye drops etc, but still Harry was first down.
The result, his right eye tumours were all looking dead. They lasered anyway just in case a sneaky little cell was hiding somewhere, they will carry on laser for the next few visits. His left eye, they lasered the little seedling tumours, which too looked dead, but there was a query over the big tumour. Its appearance, in the specialists opinion, looked like dead tumour but a reaction to the laser giving it an odd appearance. It could also be live tumour still. 50/50 aint bad I suppose. He wanted to leave it alone and see what it was like next time. If it looks the same, then its just the way the dead tumour has left a scar, if its changed then its still alive. No harm will come to Harry, they will laser it next time.
No more chemo too, if anything should grow back they will try other treatments first, chemo only if they don't work. So stay away you nasty tumours.
So all in all pretty good news and we set off with a little lift in our step, only to have it dashed severely by ther bloody awful traffic on the M6. It was sooo hot, we had the windows opened and was deafened as the aircon wasnt working. But home we landed, back in 4 weeks time.
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