Connor started his Radiotherapy at University College Hospital London, 9 days ago...so far so good, he hasnt needed to have a general anaesthetic for the short time he has his treatment for instead he lies as still as a statue and watches a dvd projected on the ceiling, we are not allowed in the room with him but watch on a tv screen from the control room next door and we talk to him via a walkie talkie, our worries that he would find it scary were infounded even tho the huge treatment machine is like something out of a sci fi film but we treat it like a game and we now have walkie talkies at home!!
Before Radiotherapy started we managed to get away for a few days in weymouth again, we were sat on the beach on the day Ben Ainslie won his gold medal in the Olympic sailing, the kids didnt bat an eyelid at the 15,000 or so supporters at the far end of the beach but they did think it was funny when the crowd started cheering!
No rest for the wicked tho as the day after we got home treatment started at 9.00am, but Connor has again made us so proud as he just gets on with these very grown up situations. He loves the play room at the hospital, and he makes us get there even earlier so he can play the Wii before any other children come in.
We also had a meeting with our Consultant to go over Connors repeat test results... always gut wrenching but thankfully we got the news that his little body is still all clear and they are very happy with his progress, the word REMISSION was used but as most other families affected by NB know, this isnt always the way it stays so we are still fundraising and fundraising and fundraising to make sure if the worst happens we are financially prepared for extra treatment.
We still have a long way to go, over 6 months left before we can start to give him a break from hospitals, treatments and medicines, but as usual we are staying positive trying to see the light at the end of a massive long tunnel.
There is not much time left for other activities during the school holidays but we try and make the most of the few sunny days we have had in the garden at home, Ella is starting year 4 at school so the shopping for school uniforms has begun, as has Connor's as he is due to start reception this september , we dont know how much of a school year he will actually be part of but were hopeful he can have a few mornings getting to meet his teacher and class mates so it wont be so daunting when he is well and starting school properly.
Getting me to leave him at school will be a whole other battle!
We managed to get tickets to see Olly Murs at Kempton Racecourse yesterday thanks to some family and friends who pulled some strings to get Ella to meet him in person, he gave her a kiss, signed a photo and tshirt and even wore Connors wristband onstage!
And today Connor's specially made Dry-Suit came so after 8 months of staying away from water and having to be careful when his sisters are playing in our paddling pool, watching them having fun without him, he finally got to join them and the smile on his face and the screams of laughter ALMOST made up for all the stress and tears we have all shed since january.
Hopefully more fun, happy days will follow now the bad days are few and far between.
xxxxx
Before Radiotherapy started we managed to get away for a few days in weymouth again, we were sat on the beach on the day Ben Ainslie won his gold medal in the Olympic sailing, the kids didnt bat an eyelid at the 15,000 or so supporters at the far end of the beach but they did think it was funny when the crowd started cheering!
No rest for the wicked tho as the day after we got home treatment started at 9.00am, but Connor has again made us so proud as he just gets on with these very grown up situations. He loves the play room at the hospital, and he makes us get there even earlier so he can play the Wii before any other children come in.
We also had a meeting with our Consultant to go over Connors repeat test results... always gut wrenching but thankfully we got the news that his little body is still all clear and they are very happy with his progress, the word REMISSION was used but as most other families affected by NB know, this isnt always the way it stays so we are still fundraising and fundraising and fundraising to make sure if the worst happens we are financially prepared for extra treatment.
We still have a long way to go, over 6 months left before we can start to give him a break from hospitals, treatments and medicines, but as usual we are staying positive trying to see the light at the end of a massive long tunnel.
There is not much time left for other activities during the school holidays but we try and make the most of the few sunny days we have had in the garden at home, Ella is starting year 4 at school so the shopping for school uniforms has begun, as has Connor's as he is due to start reception this september , we dont know how much of a school year he will actually be part of but were hopeful he can have a few mornings getting to meet his teacher and class mates so it wont be so daunting when he is well and starting school properly.
Getting me to leave him at school will be a whole other battle!
We managed to get tickets to see Olly Murs at Kempton Racecourse yesterday thanks to some family and friends who pulled some strings to get Ella to meet him in person, he gave her a kiss, signed a photo and tshirt and even wore Connors wristband onstage!
And today Connor's specially made Dry-Suit came so after 8 months of staying away from water and having to be careful when his sisters are playing in our paddling pool, watching them having fun without him, he finally got to join them and the smile on his face and the screams of laughter ALMOST made up for all the stress and tears we have all shed since january.
Hopefully more fun, happy days will follow now the bad days are few and far between.
