Monday, 28 May 2012

1 week down:

Connor started his Intensive chemo last Sunday, so we've done just over 1 week of a possible 6- 12 week stay at GOSH. Time has literally flown, and up until yesterday Con has been well and not too down. We had to swap rooms last night as our first was so hot and you can't open the windows here, sunshine beating in from 5am so today the blinds are shut save for a tiny chink of sunlight as Con was staring out of the window looking so unbelievably sad, u don't have to be a mind reader to know what he was thinking - he just wants to be home,playing out in the sun. Saturday he woke up and said "mummy my medicine today is to have lots of ice-lollys!!!" he isnt to know that the side effect of one of the chemo drugs is a mouth full of open sores, the ice-lollys help lessen the amount of drug getting into his saliva somehow, sunday was his rest day and the end of his high dose chemo. He was a bit down so his sisters came up to see him for the first time in a week, he had not got out of bed all day and within seconds he was racing them to the play room!! He had a lovely afternoon but when they left he cried for an hour. Today his stem cells were re-infused, we will know in a week whether it has worked and the healthy cells have grafted together, it only took a 10 min drip infusion but the stench it's left behind is still stinking out our room 9 hours later, and it's now eminating from Con, poor mite! Whatever the cells are preserved in smells exactly like an open tin of sweet corn but 20 times stronger! Today was also the return of his sickness and nausea another great side effect of the chemo, he won't touch any food and is hardly drinking. So hard watching him upset and unhappy, knowing there's sod all you can do to help him, i asked him today what would make him happier, help cheer him up, after thinking for 5 minutes he said " mummy I know what I want, it will make me really happy" I was expecting the usual heartbreaking answer - to just be better, but he said "I know u will say no?" I promised him whatever he wanted he could have, however much it cost I would get it for him, I just hoped it wasn't a real life transformer or something else that was impossible!! so he said " mummy I want a puppy, no actually I want 2 puppies a boy one for me, and a girl one for Ella and Lola" How can u say no to such an innocent little wish!! I couldnt! So mummy and daddy promised that when he is all better, he will get his wish, and after 4 long hours of us googling every breed of dog in the world, with the biggest smile he chose a Beagle for him and a Maltese for the girls!! So.... even tho I really don't like pets and am not very good with animals - It looks like our family is getting bigger xxxx

Wednesday, 23 May 2012

Another Hurdle.

Yesterday, after repeat test i was told that Connor had substantial hearing loss, the consultants dont know yet how badly the loss will effect him, but it is permenant, and he will need to wear a hearing aid.

We were told from the beginning there was always a risk of that particular side effect with one of the Chemotherapy drugs, but if im honest , it never really worried me, i was too preoccupied with the Cancer part.

The news was a massive shock, didnt see it coming but looking back over the last few months, as his mum, i should of picked up on how loud he likes his tv now, how often he ignores me when playing computer games - i put it down to being a typical boy, so engrossed in his games he would zone out, but we know now its because he cant actually hear other sounds if there is too much background noise.

It is just so unfair.

The doctors said in the long run, some hearing loss is a small price to pay, but how many more side effects is he going to suffer from? he already has a Denver Shunt in his chest from the "rare " possibilty of fluid build up after surgery, now the hearing loss, does this mean the chance of  him being sterile is also more than just a slight risk?

I feel like he never gets a break, the last few days he has had screaming fits of anger and tears, that last over an hour each time,  the slightest thing sets him off, losing a game, being tired, getting him the wrong drink, apparently the Chemo drugs wouldnt of made any inpact yet so its not them causing his outbursts, so its just Connor, and his way of telling us he has had enough.

How do u explain to him then that the worst is still to come?

We cant , we have to struggle through, let him rant and rave and get all his anger out and be here to comfort him and wipe his tears, cheer him up and tell him over again, like we do every single day.

" We love u so much Con, we wish we could make u better, we wish we could take it all away, be brave, u are doing so well, dont give up , be strong, its nearly all over darling, we will all be at home together soon " xxxxx

Sunday, 20 May 2012

A busy week:

Con was given a bit of a break this week, he was really down and we thought he needed some normality so he was allowed home during the day but was at our local hospital every night 7pm till 7am for his TPN drip. We tried to fill his days with as much fun stuff as possible but our little boy has been drained of all his energy and enthusiasm - a week sitting on the sofa watching dvds would have probably been more his idea of fun, so maybe it just did me,rik and the girls some good? Our first full day at home was Tuesday, we took Con and Ella to Madamm tussards, we had to use a wheelchair for the first time as Con was still getting tired easily, the looks u get from people are so sympathetic,and it draws a lot of attention, hard when ur trying to keep everything normal, Con is oblivious but I think Ella notices now and I worry about how this all effects her? Con was unimpressed with the waxworks!! Ella liked posing with Rhianna, Lady Gaga and the Royals, she held hands with Zac Efron but was gutted there was no Justin Beiber. Rik made sure he got a snap with Cheryl Cole! What Con had been waiting for was the Marvel section- that did bring a huge smile to his face and he was straight out of his wheelchair! he got pics with spiderman, iron-man, capt America, the hulk and the invisible women( as did daddy!)he loved the 4d movie too. We had more plans for that day but we headed home as Con was getting tired, Wednesday passed in a blur, we let Ella have the week off school, we just wanted to spend as much time together as possible so we played board games, computer games, card games, u name it we played it, Con was still upset he couldn't just stay at home at night so we aimed to just tire him out so the nights would go quicker but somehow he still managed to wake up at 5 am everyday! Thursday we were given tickets to see Shrek the musical, the 5 of us went, we were told on arrival we had the Royal box, and got given a goodie bag and a signed programme, we were all excited- till the manager said NO UNDER 4's permitted, Lola is 20 months!! Luckily they let us all in, the show started our seats were great, then Lola saw Shrek and freaked out,so by the interval Rik decided to take her home, Con said it was too loud for him and went home too, Ella loved it tho. Friday we were all set for the cinema when our consultant phoned and we had to go to GOSH to sign consent for Connors high dose chemo, start date was monday. A few days at home was all it took to slip back into our old life and then it's all bought crashing back to reality with talk of, risks, side effects,- rare possibility of toxic death. No matter how far we think we've come, something always comes back to remind us how far we still have to go. So, we asked our consultant for 1 night at home, before we are separated for at least 6 weeks, thankfully she said yes last night Con slept in his own bed for the first time in weeks, and he woke up the happiest I've seen him in just as long! this morning when Lola went in his room and asked for Con like she does everyday - he was there waiting for her. Broke my heart and healed it at the same time. Tommorow is the beginning of our next hurdle, I am hoping and praying Con will get through this stage as quickly and painlessly as possible, we know this is the hard one, the bit I've been worrying about for weeks, but it's here now so we will stay strong for our brave little boy, cos this stuff, that a nurse told us was like Domestos being pumped through his body, will get that baddie for good. Mummy and daddy love u all so much, sweet dreams xxxxx

Saturday, 12 May 2012

2 weeks and 2 days.

Haven't felt up to writing much these last few days,and if I had it would be mostly depressing to read. Everything is going ok treatment wise, Con's belly is almost back to its normal size after having his Denver Shunt, he had another general anaesthetic for his Vascath insertion which was another few hours of nervous waiting for us but his stem cell harvest went great, over 8 million cells collected in 3 hours. BUT, after 2 weeks basically bed bound and having to be nil by mouth so often, Con looks as fragile as glass and painfully thin, he has difficulty walking, is stiff as a board and takes the smallest slowest steps, he is quite literally a shadow of the healthy happy boy he was and I am heartbroken. Yesterday he cried all day, asking us for the first time why he was ill, we had no answer. He wants to know when he will be better, we have to say - soon, and pray that we are right. His nurse brought him a make a wish pack, he wouldn't even let us suggest anything he just said, " all I want is to be better and go home and sleep in my bed". How do u deal with that? He wouldn't talk after that, he wouldn't eat, we couldn't make him smile. I said Con, I wish I could take all the bad stuff away and put it in me, he cuddled me and said "no mummy, I don't want anyone to have it, I want it to go inside a mountain". Last night Con asked for Rik to stay over so for the second time in 2 weeks I went home to our girls, we snuggled up in Connor's double bed and I cherished every minute. This morning Lola had a screaming fit when I was dressing her and went to Ella- her 8 year old sister for comfort instead of me - gutted doesnt even come close to how that felt. I tried to keep my tears frm showing but Ella is too smart, she then started crying and said" mummy it's not your fault, your just not home a lot" I literally felt winded. No time at home is enough, it goes to fast and the guilt I feel for my girls is crushing it keeps me awake at night, every day Lola has learnt something new and i wasnt the one to teach it, Ella has a lot on her little shoulders so has grown up a lot, not by choice. Today Ella wanted to go to the Mayfair,I was dreading it, I really don't need any reminders of how seperate my family is and all I wanted to do was lock my door, turn off my phone and spend time with them alone. It was really hard, I knew it would be, seeing all your friends and family with their children enjoying the sunshine, Knowing my little Family is so limited. Every time some1 asks how Con is , it's harder to keep my emotions in, harder to cope. every minute I'm with Con i miss the girls, every minute I'm with the girls I ache to be with Con, simple things we used to do all together make me feel physically sick when we now have to do them apart. At the fair I found some balloons for Con and Ella won him an inflatable pirate sword and a hammer in capt America colours, I kissed my girls goodbye and left for GOSH, I walked in to the ward to see Rik and Con walking around- his face lit up when he saw his presents! His nurse said we could even take him for a walk, so we found a wheelchair and took him to a nearby park, he had an ice cream and I think the fresh air cheered him up a bit. As it stands now, his high dose chemo has been postponed till the 21st, we thought Con could do with a break before the hard stuff starts and the doctors agreed, he will be allowed home every day next week for about 8 hours but will have to return to hospital every night for TPN, a calorie boosting drip. Con isn't as happy as we are as he wants to sleep in his bed at night but a break is a break and we will make sure he enjoys every minute at home. JUST TO ADD: We've had our families,friends and strangers out fundraising all day, some at the fair, some at the rugby, others doing a sponsored walk a friend getting her head shaved for Connor, others organised a kids disco, the support of every is still overwhelming and we just wanted to say a massive thank you again, we don't know every 1 of you personally but hope u get a chance to see this post so we can tell u how much it means to us xxxx

Monday, 7 May 2012

Finally turning a corner:

Saturday day: I finally got to pop home and see my girls for a few hours, we watched some DVDs cuddled on the sofa, and made pizza's for lunch, Lola got tomato purée and cheese all over her and the kitchen but I didn't give a stuff, seeing them lifted my spirits so much!! We then all went back to see con but he was still uncomfortable so we were told he would most likely have his shunt done as soon as there was a time available. Saturday night: Don't think I will ever get used to Con being put under general anaestetic, holding him till he falls asleep, whispering sweet dreams and kissing him before I leave is the scariest and most heartbreaking thing I will ever do, lno matter how small the procedure is, leaving him in the hands of strangers, not being the first face he see's when he wakes never fails to turn me into a wreck. This time, because we had no set time for his op rik went home to put the girls to bed and missed him going down by 25 minutes, he was gutted. We only had to wait an hour and a half but it felt much longer, but thankfully everything went well, Con now has another tube on his right side of his chest-the shunt, which we will have to pump during the day to move the fluid gathered in his belly around, his left side has his Hickman line already, it's really hard to look at his tiny body sometimes, seeing the changes it's gone through these last 5 months. Immediately after the surgery his belly looked less swollen, the surgeon said a mass of fluid came out as soon as the incision was made, he seemed so much more comfortable. Me and rik settled in for a night top to tail again, an hour later Connor's monitors went off, his nurse came in and then called for a senior nurse who in turn called another colleague, Con had a temperature, high blood pressure, rapid heart rate, low oxygen level, our little man loves to worry us!!!! He was given IV antibiotics and paracetamol, after all he had been through they guessed he was brewing an infection, or that his body was just regulating itself after being under such pressure for so long. By 5am he was given the all clear and we were told to all get some sleep but we decided to take it in turns, I slept till 8, then rik till 11. Sunday: what a difference a few hours makes, Con was so much happier, he was still a bit distended but to a much smaller degree, he was asking for food and wanted to play the wii, he had finally turned a corner!! Today was another good day, still sore and a bit swollen but much happier, the shunt hasn't even been pumped yet as he is too tender so the plan is for it to be done tomorrow, and maybe get him out of bed. Can't tell you what a relief it is, I know we have such a long way to go but when Con is happy so are we And as days like that are few and far between lately, every day he smiles or gets cross with me for being crap at computer games ia a blessing. Sweet dreams my babies xxxxx

Friday, 4 May 2012

2 steps forward, 5 steps back :(

My last post was deleted by mistake so I will try and condense whats been happening in the last 4 days. Its been shit basically, one bad day after another. The initial high at the success of Connors op has faded, and Con's been left with a belly that is an excruciating size, apparently its caused by a kind of fluid retention due to the trauma of surgery, it's been horrendous watching him in so much discomfort, but we were told that in time it would disperse on its own......but it hasn't. The options they gave us were ... more time, a drain of the fluid - even tho it will most likely return or if necessary they would perform a "shunt" which is basically another surgery to insert a tube and a pump in his chest which would then redistribute the fluid around his body. None sounded particularly pleasant for him. Our Oncology team then added to the stress of everything by telling us that Connor's stem cell harvest needed to happen by the end of next week, so injections to boost the production of the cells starts Sunday, then he will be starting his high dose chemo straight after. There is no time left for Con to come home now and that means he will be at GOSH for at least the next 8 - 12 weeks. I really don't know how we are as a family going to get through that. The departments then decided the best course of action was to leave him be, and then do the shunt next Wednesday along with the insertion of vascath - the tube in his groin which they take the stem cells from. Their logic was that after such a major operation Connor needed time to heal and they were reluctant to perform two further surgery's. We totally understand what the surgeons and doctors and oncologists are saying but when u have to sit and watch your 4 year old son crying on pain, asking you to make it go away there's pretty much nothing you wouldnt try, and Wednesday was just too long await. Last night after asking for Con's surgeon to take another look at him, he was blatently taken aback at how much more swollen his belly was, at 6 o'clock he ordered an urgent ultrasound and x-ray and by 8 o'clock we went down. They left us overnight before telling us what the plan was, and then returned this morning to tell us that yes there was a lot of fluid but that Wednesday still seemed the best option. We both just said NO. I said we can't get through another day like this, it's not fair on him and it's not fair on us having to watch him like this, feeling so bloody useless, we said he hasn't eaten in over a week, he can't move because he belly is so huge and so tight, he can't sleep, NO - Wednesday is too far away, please can u do something now. Within half an hour they had decided to drain a little of the fluid and test it, i can't even tell you what for but there was a purpose but by the time they finally came back the plans had changed and they were going to drain a lot more fluid to try and alleviate the pressure and reduce the swelling. Holding Con's hand while he is stabbed with a needle, a tube pushed in his belly - watching this rasberry/ orange coloured fluid fill up syringe after syringe, another memory i will never erase from my mind, me and rik try and sooth him but he just repeats over and over and sobs "it hurts mummy" , looking at rik and recognising the look in his eyes- ,pure heartbreak. After that ordeal Connor slept so soundly for a few hours, our nerves shot to peices, his belly looking less taut and a little smaller, not by much tho. The doctor said she drained 500 mls but there is a large amount left, we're hoping he will be more comfortable but there is the option of doing it again if needed before Wednesday. I sometimes wonder when I'm gna reach breaking point, I haven't had a chance to even cry my heart out since Con was diagnosed, I'm always with one of the kids and it's not fair on them seeing one of us lose control. I think the truth is I would happily break down any minute but I'm scared once I start I will never stop. I can't cuddle up to rik at night and cry on his shoulder even tho he is the only other person who knows how I'm feeling because were both to scared to let Con sleep on his own and whoever is not with Con lets the girls in our bed as its too lonely by yourself. Again, I hope that tomorrow is a better day X x x x x I
Shit day, can't put it more eloquently than that. Con has been gradually becoming more and more swollen around his chest, stomach, thighs and groin due to a kind of fluid retention caused by the surgery,we've been told to get him out of bed to help move the fluid, with no success and it's causing him more pain. We helping him sit up and walk him up and down the corridor but he just moans constantly and just wants to go and lie down, we've had the doctors in nearly 6 times today as we're not happy he is still uncomfortable he can't even eat now as the swelling around his chest is rounded front and back - he looks so out of proportion with his tiny limbs. Time. Apparently more time is needed for the fluid to disperse on its own, which is just not what we want to hear. After all our little boy has been through this week alone another day in discomfort seems just too unfair. So we have another sleepless night, another day of waiting and then if he is still the same, he will have something called a 'shunt', which sounds awful and basically means another tube has to be inserted under his skin with a kind of pump in his chest that u push up to 6 times a day to move the fluid around. Can't even explain how crap and useless me an rik feel, I haven't been home since last thursday, I miss my girls so much I'm close to tears 24 7 without adding on the heartache i feel for Connor. Oh an just to add to the shitheap, our Oncology team are pushing for his stem cell harvest to go ahead next week as his high dose Chemo starts as early as the 14th of this month, which if we're lucky means Con will get maybe 3/4 days at home now before he is back here for at least 6 weeks. I know it's his treatment programme, I know it's like this because he needs it, it's as hard and as aggressive as the bastard cancer it's fighting, but it doesn't make it any easier to swallow or any easier to watch. So can some 1 pls tell me what our amazing little boy did to deserve this ? what my girls did to deserve this? what me and rik did to deserve this? What any other child fighting this or who lost their fight did to deserve this? I fucking hate NB, its an evil evil thing.