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