End of treatment doesnt mean end of the story...

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

 

1 year on.

On this date 11/01 last year our whole life got turned upside down, inside out and we haven't had a break since, it's been a year of tears, sadness, pain and heartbreak but somehow we are all still very much a happy family, don't ask me how exactly, but I know the main reason is our children who despite all the upset and separation still make us smile everyday in their own special ways.

We are coming to the end of  Connors treatment, he has one course left of the antibody trial then his tests for relapse will be repeated, we are scared - no petrified, that its all going to be ok, that all the awful things he has had to go through will be enough to "beat the baddie" but i know it will be a lifelong worry for us.
Connor doesn't have the fear, he says "when I'm better, and my wigglies are out u can throw me in the sea!" "When I am better, I am gonna play fight properly!" "When I am better I can go to school all day!"  

He hasn't responded to the trial that successfully, he has yet to complete a full course due to allergic reactions, and severe fevers, but I'm hoping the little he has had will do the trick?  He sure as hell is putting up a fight, he just gets on with everything thrown at him, he is amazing.

We managed to have 6 days at home over Christmas, it was rushed, and manic and we had days to sort everything , buying gifts online,  doing a food shop online but we were home and Christmas isn't the same I guess without a bit of stress! Christmas Eve Connor wanted to me to dye my very bleached blonde hair red, like Mary Jane from spiderman, so of course I did, And its only hair, if he had asked me a few years ago to do it I never Wud of, too afraid of what others wud say, but I cudnt care less now, I nearly cut all my hair off  a few times in hospital with scissors during stressful times, thinking of Lola not recognising me was the only thing stopping me sometimes.

 So Christmas morning we all woke up together which was bliss, we all wore new festive pjs and didn't take them off all day, we stuffed our faces, played games and watched movies like we do every year, the kids were of course spoilt rotten and we acquired another puppy to add to our mad house, a
shi- zhu for Ella named honey, we must be mad! and Connors beagle puppy (peaches) is just a tad
jealous of the tiny new ball of fluff

The days went so fast and before we knew it Con was due back at GOSH , it was gonna be sad not all being together to see in 2013, we hadnt even unpacked from his last stay, Connor is not a light traveller, he brings a suitcase of food( he will not eat hospital dinners!) a suitcase of pyjamas(he doesnt get dressed in hospital!) and a suitcase with his own tv, computer games and dvds(the hospital tv is way to small he says) so New Year's Eve, I stayed home with the girls whilst Connor and daddy were at the hospital, I spent my night cleaning Connors room and making space for for all the new toys, Rik and Con slept through it all.

Sad news:
Rik phoned very early the Next Day, upset and shaken , the very sick boy next door to us passed away in the early hours and his mums screaming woke Rik, my heart just sank,I got the girls dressed and we went to the hospital, the wards atmosphere was just awful, the nurses were upset, the parents
were quite, everyone just stayed in their rooms.

Later that day I went to get Con a drink and I met the boys mum in the hall, I just hugged her and told her I was so so sorry, she was just broken, she asked me to go talk with her and I followed her in her room, I was thinking, God she must be packing all his toys, his clothes, poor poor woman but the room was full of crying relatives and I just froze because when the door shut his family moved and the little boy who passed away was still on the bed.

If I said that I cudnt breathe, I cudnt talk , i cudnt move- it wudnt explain how I felt and I still see his face everyday,  he was dressed in a beautiful suit, but his eyes were open, his skin colour a vivid yellow/green due to liver failure, in all my life I will never forget it seeing him, all I could do was hug his mum and dad, say I was sorry and stare at his little body, a million thoughts in my head. His mum said "give me time Sarah and I will be there for u " I kissed her goodbye and walked into Connors room, straight into the bathroom turned on the taps and fell to the floor sobbing.

I was thinking this is it, I've cracked, I've lost it,  I don't know how long I was even in there, but somehow, I got up took the girls home, shakily drove home and ignored the thoughts in my head.

I cudnt sleep much the next week, I'm still always thinking about him, how unfair it is, wonder how his family are coping, I think about how he was the same age as Con, they had the same Cancer, the same treatment, were practically the same height and weight, they both love spiderman, I worry Connor will relapse like that, that he will look so ill, will be so unhappy, and I pray he will survive it.

I think about the bad stuff more when we have bad days here like the last two days, the latest course of antibodies has been abandoned as Connor reacted again and has constant temperatures, he is really miserable and I hate it, hate that I can't do anything, I hate its been a whole year of misery, I hate that I've missed so much of the girls, and I resent so much, the fact that life goes on despite everything, bills don't stop coming, friends stop ringing.

I just keep telling myself, it's nearly finished, Connor is nearly there, not much longer he will be ok, then I look at happy pictures of the kids of all of us, even days when Cons been unwell but is still smiling and I feel better because that boy never gives up and I won't either  xxxxx