Ive left posting an update on Connor as long as possible because we wanted to have all his tests results back first, but things dont run smoothly for us on a good day and his tests were cancelled and rearranged, so we will have more news on where we stand with the success of treatemnt in the next 4 weeks, hopefully for now i can fill in the blanks since January ....
Treatment is OVER! we have been home together for nearly 7 weeks, i cant begin to explain how great it feels to wake up together every day, do the school run, play board games and watch films together, be there for bath times and bed times.
Connor has felt well enough to attend school a few mornings each week, he has made new friends and enjoys telling us all about his day, he has put on nearly 3 kilo,s in weight and looks great, his body while still slighter than the average 5 year old is softer and his bones less visable. He still tires easily but is getting stronger by the day, he is more confident and less emotional which hopefully means the effects of the the treatments and medications are leaving his system.
Connor is still suffering from an enlarged Liver and Spleen, a common side effct of his Antibody treatment so we have been referred to Kings College Hospital, it causes him a little nausea but is showing signs of improvement.
The doctors also found a large blood clot attached to his Denver Shunt, it is partly occluding the main vein in his neck, it sounded pretty serious at first but in reality it means the blood has to find an alterative route so he has more odvious veins in his neck and chest now, it also means that Connor needs to endure twice daily blood thinning injections in his bum daily, Connor says they are really painful and sting a lot but he toughs it out, hopefully after all his tests are done the Shunt can come out along with his Hickman Line and he will be free to go swimming and have proper baths for the first time in over a year.
It is a really anxious time for us, treatment is over so these tests are crucial to finding ut how well the NHS Neuroblastoma protocol has worked for him, looking at Connor today he looks like a normal if slightly skinny 5 year old, but we know looks can be decieving and we are forever worrying when Connor complains of aches and pains.
On top of everything else our house is pretty much all boxed up, we have to be out of our rented house by 24/4 and after a year of us not being able to work full time, we cant afford to carrying on renting privately, our future is in the hands of our local council but weve been told we face staying in a Bed &Breakfast while our situation is sorted, even with a years notice they have no social housing for us, people ask us how we cope but seriously id live in a shed if it meant Connor was in Remission, if we knew for certain he,d never go through any more hardship, any more pain, and we didnt face any more seperation, hopefully we will know more in 4 weeks, and then 3 months after that he will be tested again and so on for a very long time...... we are as usual staying positive and trying to remain full of hope xxxxx
Treatment is OVER! we have been home together for nearly 7 weeks, i cant begin to explain how great it feels to wake up together every day, do the school run, play board games and watch films together, be there for bath times and bed times.
Connor has felt well enough to attend school a few mornings each week, he has made new friends and enjoys telling us all about his day, he has put on nearly 3 kilo,s in weight and looks great, his body while still slighter than the average 5 year old is softer and his bones less visable. He still tires easily but is getting stronger by the day, he is more confident and less emotional which hopefully means the effects of the the treatments and medications are leaving his system.
Connor is still suffering from an enlarged Liver and Spleen, a common side effct of his Antibody treatment so we have been referred to Kings College Hospital, it causes him a little nausea but is showing signs of improvement.
The doctors also found a large blood clot attached to his Denver Shunt, it is partly occluding the main vein in his neck, it sounded pretty serious at first but in reality it means the blood has to find an alterative route so he has more odvious veins in his neck and chest now, it also means that Connor needs to endure twice daily blood thinning injections in his bum daily, Connor says they are really painful and sting a lot but he toughs it out, hopefully after all his tests are done the Shunt can come out along with his Hickman Line and he will be free to go swimming and have proper baths for the first time in over a year.
It is a really anxious time for us, treatment is over so these tests are crucial to finding ut how well the NHS Neuroblastoma protocol has worked for him, looking at Connor today he looks like a normal if slightly skinny 5 year old, but we know looks can be decieving and we are forever worrying when Connor complains of aches and pains.
On top of everything else our house is pretty much all boxed up, we have to be out of our rented house by 24/4 and after a year of us not being able to work full time, we cant afford to carrying on renting privately, our future is in the hands of our local council but weve been told we face staying in a Bed &Breakfast while our situation is sorted, even with a years notice they have no social housing for us, people ask us how we cope but seriously id live in a shed if it meant Connor was in Remission, if we knew for certain he,d never go through any more hardship, any more pain, and we didnt face any more seperation, hopefully we will know more in 4 weeks, and then 3 months after that he will be tested again and so on for a very long time...... we are as usual staying positive and trying to remain full of hope xxxxx
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