Friday 1 June 2012
Added stress!
Connor has been really unwell over the last few days, he is being sick even with the mixture of anti- sickness meds the doctors have prescribed, he won't eat or drink and just looks so sad all the time.
Wednesday night there was blood in his vomit which the doctors think is the beginning of Mucositus, so we are literally waiting for the sores to start appearing in his mouth and then he can have his morphine pump back. We were warned this was going to be a really testing time that Con was going to struggle and we would have to tough it out but i cant explain how hard this is, feeling so useless and just waiting for signs when he goes further downhill.
The only upside to this week was getting Connors story in The Sun newspaper, a double page spread of him in his favourite superhero costumes, I'm hoping it will do loads to boost Connors appeal and raise awareness of the awful thing that is Neuroblastoma, awareness of all rare childhood cancers.
I popped home for a short time yesterday afternoon to do the school run, spend time with the girls and do normal things, make dinner, help Ella with her homework, but instead spent hours on the phone and writing letters to our local council, it makes me so mad that I have to waste my time on this crap!!
To cut a long story short - our tenancy expired in the house we rent in March and with me not being able to work, and rik being self employed and sharing our time between home and GOSH, we cant afford to live there anymore, so after 8 years of renting privately, of paying other peoples mortgages, and moving 5 times since Ella was born, we decided enough was enough. Why should we struggle? why shouldn't our children have a permanent home? Our local council thinks differently - I have in writing that we are NOT a priority! Stress stress stress.
Then there's bills to pay just to prove that life goes on even tho ours is falling apart.
Weve also had to deal with people overstepping the mark and causing us personal problems, harassing family members who are helping at home with Ella and Lola, causing trouble between our two families, texting messages, how do people live with themselves? Isn't it odvious that we are all going through the most devastating and horrendous time and just want to be left alone, it's not like we haven't got enough to deal with!
Last night i found a post relating to Connors appeal on a Music fan site, at first I thought WOW, word is getting out- great! but then I read more and it said this person was a family friend whose daughter babysits my children? Red flag alert!! My children have only EVER been babysat by their NANS or my sister. It went on to add that if they were having trouble donating to our charity site then they could donate via this persons PayPal and they would pass the money on!
I couldn't help being suspicious so I emailed this person who then apologised for taking it upon themselves to embellish their relationship with us, but did it for the right reasons and just wanted to help, apparently no monies were ever received and they deleted the post.
I initially felt bad as we have had so much support from strangers, people who have never met us who have given up their time to help us raise money, so this persons intentions might well have been honourable but in this day and age I'm well aware how many people there are trying to make a quick buck on the back of someone else's misery, and if I can't protect my son from the ravages of cancer and chemo, I will protect him from people trying to use his suffering as a money earner.
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