Monday 30 April 2012
Getting better x
I haven't had much to blog about since Con came out of surgery, he slept through the first 24 hours and most of Sunday, the operation and pain meds just knocked him for six.
His epidural started leaking Saturday afternoon so it had to be removed to avoid him getting an infection so by the evening it hard started to wear off and he was was in a lot of pain, he was given a continual morphine drip with a button the nurses could push every 20 minutes so he could have an extra dose of morphine, he ended up needing it all through the night and most of Sunday at least every 30 minutes.
Today was a better day he was awake for hours at a time, and we managed to raise a smile from him a few times but he hasn't said a lot and is still really uncomfortable.
The plan today was to get him to move a bit more but even raising the bed by the slightest angle causes him pain and he struggles to bend his legs but he is really trying!
The doctors are also making him blow some bubbles to keep fluid off his lungs and his catheter is out so he is going to wee in a pot, getting out of bed is too big a task this early on.
Con has always been really sensitive - my little softy, taking a plaster off is a huge deal so getting him to move around is a struggle as he knows how painful it will be,his scar is still really sore and his belly swollen but he his doing so well.
Tomorrows aim is to get him to sit up a bit more, lay on both sides for a little bit and at a push sit on my lap for even a few minutes, I would love that as I haven't been able to cuddle him properly yet, and seeing him in pain is heartbreaking, as his mum I just want to take it all away.
The doctors let con control his morphine button from this afternoon, he can push it every ten minutes if he is in pain , I think he likes the comfort of knowing he can do it himself and doesn't have to wait for a nurse, he hasn't even used it that much yet but at this moment he is fast asleep holding on tight to his button should he need it - bless him.
I wish my 3 little angels the sweetest dreams and hope tomorrow is a less painful day xxxxx
Saturday 28 April 2012
Recovery:
By half 6 last night we were pacing the ward waiting for news on Con, he had been in theatre for over 7 hours but we were told no news is good news, the nurses told us to go get some fresh air and then I saw Cons surgeon walk through the doors, I panicked and ran to our room, rik asked me what was wrong - I started crying and said the surgeons only come up to give you bad news, like an idiot I said I've seen it in films.
The surgeon came in, he had stains on his scrubs, rik calmly asked how it went.
It's good news he said, I have removed about 95% of the tumour, he lost a lot a lot of blood so had to have 3 transfusions but it was not a worry for them.
The tumour had leeched itself to cons left kidney they didn't need to remove it but it will most likely have limited function now, again they said that wasn't a worry.
One of his lungs was slightly nicked during the surgery he said but it was stiched and should heal fine but they will be keeping a close eye on him.
Rik and I just hugged, I was crying with relief, rik shook the surgeons hand and we were told the he would be in recovery soon.
After an agonising 45 mins we were taken to him, we walked in to the recovery area and my legs went to jelly,
I felt hot and thought I was going to be sick, con was stirring and attached to a lot of different machines, heart monitors, drips, a nose tube, a catheter, epidural IV, both his little hands had canulars in.
The surgical team were talking us through the procedure, I felt really weird, hot, dizzy, and my feet looked really far away, I must of looked odd cos I was told to sit on the floor, but I was trying to ignore it, I've never fainted, but as they showed us his new scar I buckled, they had a chair under me and i put my head between my legs, my baby's belly had a fresh red raw line from one side of his belly to the other.
It is now Saturday morning, we odviously didn't sleep well, top to tail on a crash mat style single bed, waking up suddenly whenever cons monitors bleeped. Con hardly stirred but the nurses were in to check on him regularly, he isn't in any pain, the epidural is working well.
Con hasn't really woken up properly yet, so we are just sitting by his bed, he hasn't seen his scar, he knew he was gna have one but I'm still anxious how he will react to it.
It has been the worst 24 hours EVER, its only competition was the day they found the tumour.
I am trying to be positive, thinking of this as another huge hurdle that our amazing boy has sailed over but looking at his tiny body in bed, full of tubes, i just feel gutted, it is so unfair, he has been through so much and he isn't even 5.
But good news is good news I am so very thankful that his op went well, that the baddie is almost all gone and the next bit of chemo and radiotherapy will get the last of it.
Thank u all for your prayers
Ella, Connor and Lola, we love u to the ends of the earth xxxxxxxxxxxxxxxxxxxx
Friday 27 April 2012
Surgery day
Connor went down to theatre an hour ago, we kissed him and cuddled him and told him we will see him soon, can't put in to words how we feel - too many emotions.
The nurses said we should go and get some fresh air, get something to eat as the op can be up to and over 6 hours but we are sitting in our room.
I was holding some rosary beads and looking up the hail mary prayer when the hospital chaplin walked in, rik saw her on his way out last night he told her con's surgery was today, she said she lit a candle for connor this morning - rik thought it was a good sign as every time he has seen her we get some good news.
We now just have to wait and have faith that everything will be ok.
We love u to the moon and back connor, our brave gorgeous boy xxxxxxxxxxx
Wednesday 25 April 2012
The Beginning:
Our son Connor was a happy healthy 4 year old boy, he loved playing computer games, fishing with his dad, playing dress up with his big sister Ella, and being chased by his baby sister Lola - Connor is her favourite person in the world!
A few weeks after his birthday last year ( sept 11) Con started complaining of belly aches during the night, these became more frequent, he lost his appetite or said he was full after a few mouthfuls of food , his belly was swollen and he lost weight, he was pale and began sleeping during the day, i was forward and back to our doctors worrying that something was wrong i told them my fears he had Leukaemia- he really looked at deaths door but i was told he had virus's, tonsillitis, a cold etc.
After a bad night on December 13th 2011, my partner and i took Con to our local A& E, he was examined and a blood test for Glandular Fever was positive, we relaxed, a symptom of GF is a swollen spleen- hence Connors protruding belly.
A week late i started worrying again, Con wouldn't eat, wouldn't play was tired all the time, he had a bad nose bleed that didn't stop for half an hour, he just sat on the sofa with a blanket watching his superheroes on TV.
On 22nd December i went back to my doctor's i said i wanted him seen at our hospital again by a specialist , i wanted thorough tests.
The appointment was made for the 11th January 2012, we live 10 minutes away so left our girls with my sister, we didnt think we would be long so i didnt even have a handbag with me, my partner had £10 in his pocket for parking.
Con had a blood test , an x-ray and an ultrasound - within an hour we were taken to a room and told our son had a tumour , over 13 cms in length over 10 cm wide.
We were told to make preparations for our other children, go home and pack clothes as an ambulance would be taking us to Great Ormond Street in a few hours.
Our whole world fell apart.
I stayed with Con while my partner drove home to pack a suitcase and brake the news to our family, and by 8 o'clock that night we were at GOSH .
What followed was weeks of tests, his diagnosis was Stage 4 High Risk Neuroblastoma, the cancer had spread to his bone marrow and a few 'hot spots' around his body, he would need an aggressive treatment programme - it started immediately.
It is now the 25th April 2012, i sometimes wonder how that is even possible, i still feel like we are only a few weeks in to this nightmare.
Con has responded so well to his chemo, he is over the first hurdle,his bone marrow is CLEAR, the hot spots are GONE, he is due to have surgery this friday to remove the evil thing inside him that has made him so ill, our darling boy calls it the 'BADDIE', he is not wrong.
Ive started this blog to keep all the amazing people who are supporting us updated on Cons progress - with the help of FAN ( Families Agaisnt Neuroblastoma) we have started to raise funds for extra treatment that will give our son a fighting chance should the NHS treatment be unsuccessful, we have been amazed at the support, donations and help we have recieved from family,friends and strangers, you will never know how much this has meant to us.
Connor will beat this!!!
Sarah and Ricky
x x x x x
Our son Connor was a happy healthy 4 year old boy, he loved playing computer games, fishing with his dad, playing dress up with his big sister Ella, and being chased by his baby sister Lola - Connor is her favourite person in the world!
A few weeks after his birthday last year ( sept 11) Con started complaining of belly aches during the night, these became more frequent, he lost his appetite or said he was full after a few mouthfuls of food , his belly was swollen and he lost weight, he was pale and began sleeping during the day, i was forward and back to our doctors worrying that something was wrong i told them my fears he had Leukaemia- he really looked at deaths door but i was told he had virus's, tonsillitis, a cold etc.
After a bad night on December 13th 2011, my partner and i took Con to our local A& E, he was examined and a blood test for Glandular Fever was positive, we relaxed, a symptom of GF is a swollen spleen- hence Connors protruding belly.
A week late i started worrying again, Con wouldn't eat, wouldn't play was tired all the time, he had a bad nose bleed that didn't stop for half an hour, he just sat on the sofa with a blanket watching his superheroes on TV.
On 22nd December i went back to my doctor's i said i wanted him seen at our hospital again by a specialist , i wanted thorough tests.
The appointment was made for the 11th January 2012, we live 10 minutes away so left our girls with my sister, we didnt think we would be long so i didnt even have a handbag with me, my partner had £10 in his pocket for parking.
Con had a blood test , an x-ray and an ultrasound - within an hour we were taken to a room and told our son had a tumour , over 13 cms in length over 10 cm wide.
We were told to make preparations for our other children, go home and pack clothes as an ambulance would be taking us to Great Ormond Street in a few hours.
Our whole world fell apart.
I stayed with Con while my partner drove home to pack a suitcase and brake the news to our family, and by 8 o'clock that night we were at GOSH .
What followed was weeks of tests, his diagnosis was Stage 4 High Risk Neuroblastoma, the cancer had spread to his bone marrow and a few 'hot spots' around his body, he would need an aggressive treatment programme - it started immediately.
It is now the 25th April 2012, i sometimes wonder how that is even possible, i still feel like we are only a few weeks in to this nightmare.
Con has responded so well to his chemo, he is over the first hurdle,his bone marrow is CLEAR, the hot spots are GONE, he is due to have surgery this friday to remove the evil thing inside him that has made him so ill, our darling boy calls it the 'BADDIE', he is not wrong.
Ive started this blog to keep all the amazing people who are supporting us updated on Cons progress - with the help of FAN ( Families Agaisnt Neuroblastoma) we have started to raise funds for extra treatment that will give our son a fighting chance should the NHS treatment be unsuccessful, we have been amazed at the support, donations and help we have recieved from family,friends and strangers, you will never know how much this has meant to us.
Connor will beat this!!!
Sarah and Ricky
x x x x x
Tuesday 24 April 2012
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