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