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

Hitting my wall....

I said half way through this year that I couldn't wait to see the end of 2012.... But we're back at GOSH on New Years Eve, so 2013 is gonna start the same way this year will end....Shit. I know i should count my blessings Connor will be home for Christmas and just suck it up and realise i am lucky we get him home at all, there so many children who wont be able to get home but I hit my brick wall last Monday after 11 months and feel like I'm back at square one... Emotional, nervous, not sleeping, worrying, missing my girls and wanting our life back.
We spend 3 weeks at home all together before coming back to hospital last week, Connor was like his old self, laughing, full of energy, eating better and fighting with his sisters! his hair is all back and he gels it into spikes every morning, he did 3 mornings at school on his own and he enjoyed it so much, he loved getting his uniform on and walking into school with Ella, i will honestly admit it left me a nervous wreck and in tears constantly, half  because I was so very proud of him and how far he has come and how hard he has fought to get here and half because I envisioned all these awful things happening to him without me there to protect him....his Hickman line being pulled out, spiking a temperature or just crying for me,  I should never doubt Connor, he continues to amaze me. Whilst I was home I started potty training Lola, and we finally got the dog house trained , we had an emotional roller coaster few weeks and I just didn't want to go back to hospital.
But of course we're here.... Treatment is going well, Connor has started grading the nurses on how much his injections hurt him, he has dished out a few 1/10,s but refuses to cry, he clenches his fists and says "get through the pain" very dramatically which has us all laughing, the nurses say he looks great, the consultants are mostly happy with his progress , his treatment has been tweaked as he has had reactions and rashes but that's the "beauty" of  a drug trial I guess, no one actually knows the outcome of it, "trial and error" they say, it works for some and not for others... and we've had that fact made brutally clear this week .
I very rarely leave the room unless Connor needs food or a drink, he likes to know where I am all the
time and it suits me fine, I dont interact with many other parents because I just need to focus on Connor and in truth, it's hard enough knowing every other child on this ward has cancer of some kind, without listening to another parents heartbreaking story, because I just about keep it together as it is and whilst some people need support from others, I'm stronger on my own.
The nurses say I'm sensible to not get too involved, they say I'm a very capable and strong person and they say its normal for me to be anxious as the end of treatment nears. I know that im struggling because I've lived month to month with hurdle after hurdle to get over whereas now there are no more hurdles,no more bridges to cross we have to just wait and see if everything Connor has been through has been enough and I feel like I'm cracking a little bit more everyday ....I'm not strong or capable I just put on a bloody good show for my children because I have to protect them.
This week I've met 2 families properly after just smiling at them and making polite converstaion in
passing,one of a 18 month old girl whose leukaemia chemo isn't working,  they live 5 minutes from
us, we share the same doctors who also failed to pick up her symptoms... The other family has a 5
year old  boy who also has Neuroblastoma, he was diagnosed 2 months before Connor but never got
to the trial stage, he has relapsed in the brain, spine and liver, he is yellow, he is in constant pain and his mum told me today, there is no more treatment, he has at most 2 months to live.. He is in the room next to us, and its like looking my worst fear in the face. The similarities between us is unreal, both mothers of 3, of an older child, a 5 year old and a 2 year old, both living out of the hospital, missing our other children and our partners, I don't know what to say to her, she is devastated, and I am petrified  but she said to me today, dont be scared, it works for some and not others and she was happy for me, so happy for Connor because she said she feels at peacknowing all the treatment her son had wasn't in vain if Connor gets better and his treatment works, she wants it to work for us because it failed her son, and her fate is in gods hands....
Her words don't make me feel better, and I have no words to ease her pain, she watches me with
Connor, she looks so sad and she must be thinking why her son?? I look at her, and pray please not
mine.... I've seen with my own eyes how quickly this disease can come  back, how aggressively it can come back, there are no guarentees and I don't know if Connor will be ok



 I pray and hope everyday he will one of the lucky ones and despite what people think, when
our treatment ends, that's not the end of the nightmare, it will be a daily worry, we will be constantly looking over our shoulder.

The good days, the bad days, the ugly days ....

It has been weeks since i have had the chance to open my laptop and try and blog......
so much has happened, normal routine things, hospital things, fun things. upsetting things.... i dont even know where to begin and it would be a long and boring read in places..... i could start at the beginning when Connor finished his Radiotherapy, and finish it now... a few weeks into his last 6 month long stage of NHS treatment but i would miss something important and would only confuse myself as so much has gone on, i have scraps of paper in front of me that have dates and events on but my memory is awful and i cant read my writing in places, sometimes ive just jotted significant things down right before bed but i cant for the life of me remember in which order they should go and this blog is important to us.... so many people want to know how Connor is doing.... so after thinking about it carefully and talking it through with rik, my partner and childrens dad we have decided to start blogging pictures when we cant find the time or the words to do Connors journey justice....

The pictures are dated from April, hours after Connor recieved his life saving operation to remove his  tumour ...we call them the God, Bad and Ugly as some are hard to look at, some make us smile and some break our heart but all the way though Connor keeps smiling...keeps fighting.

On the 11th September our youngest daughter Lola was 2 and the day after on the 12th September Connor turned 5, early on we were not even sure if he would make it to his next birthday but he celebrated in style with all his friends and family, days later his last stage of treatment started, and even tho we were warned of possible side effects... it still knocked us on our arse to see him suffering again, raging temperatures, shaking, hallucinations, pain, tiredness, tears and allergic reactions to new medicines .....no matter how many good days u get the bad always rears its ugly head and reminds u its not over....

We did get the chance to go to Euro disney on the 12th October for a few days thanks to the Magical Taxi Tour, it was an amazing trip and Connor and his big sister Ella were treated like royalty, is a real treat after long periods in hospital to be able to be a normal family and get spoilt for a change...


These hospital pictures are a constant reminder to us that no matter how well Connor is doing, how well he looks, there is still a huge chance his Cancer will relapse and it is so important we keep fundraising and raising awareness of Neuroblastoma....will blog as many pics as possible tonight and then will post some happier pics of him over the next week before we are back in hospital.............God bless xxxxx

More busy days!

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

Home Sweet Home x

Connor finally got home on Monday 9th July, we have been so busy just enjoying all being together, getting back into a "normal" routine and fitting in hospital appointments that this is the first time i have sat down to let u all know how our little star is doing...... he is GREAT!, his spirits always soar when he is home with his sisters and all his blood results are up and improving as proof.

Its the little things that make all the difference, waking up together, having breakfast together, watching dvds on the sofa together... just being together helps erase some painful memories of Connor at his lowest.

 Its been a really difficult few months but we are finally seeing his little spark back and his energy is gradually building, his appetite - whilst still small is improving, and he is eating eggs for breakfast lunch and dinner, he missed being able to have them in hospital!! We are making fresh juice every day, have switched to goats milk products and are generally trying to get as much goodness in to his little body as we can, he isnt sitting still tho so is burning off so many of those precious calories!

We finally got to the cinema to see The Amazing Spiderman, and Ice Age 4, we squeezed in a long weekend in Weymouth before his repeat tests started this week... 7am at GOSH everyday!Were hoping to get back their again before Radiotherapy starts on 8th August.

All in all its been a crazy and tiring few weeks, this blog will have to be short and sweet as duty calls but we wanted to share some recent pics to show u how great Connor is doing and thank everyone again for their love and support xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx