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
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