Blog 12-2.12.11

Its been a month since I lasted updated this blog and so much has happened. Firstly congratulations to Michelle and Tim on the birth of baby Niamh Erin Connors. We now have another niece which brings the girls tally to 3,on par with the boys-whoo!

So what has been going on in Oz you may wonder-or not if you've been updated via Facebook!-I still don't like using Facebook to update you on whats going on but it's so quick and instant,unlike the blog which takes a lot more time and effort (if anyone has any ideas how I can get round this,please let me know).

You may remember me telling you of my teeny tiny mistake with the party invite we got last month (mistaking the party for an 80's theme when it was in fact a 70's one). Well, Paul and myself managed to find some 70's outfits at the last minute (good job as my 80's one only arrived this week), and we had a ball-I even got up an had a boogie! I was then lucky enough to be invited to a Melbourne Cup party where I had a little flutter on the horses and a tipple on the champers! We have been kept busy most weekends with park visits, bbq's with friends, trips out to the beach and generally having some great time together as a family which is why we came here.

A couple of weeks ago Charlie and me went to visit a friend (she's originally from Liverpool who I met in the local park) and I was amazed that Charlie got in her pool and merrily floated off to the deep end in his rubber ring, happy as Larry and totally chilled. It was a sight I expected to take much longer to see as he hasnt been in a pool since before his diagnosis.This reinforced my intention to find a rental property with a pool as seeing him so relaxed and happy in the water was priceless.

Hospital Updates

We were so pleased last month that Charlie had reached Maintenance and we expected things to really improve and be less stressful. Also with the idea in our heads that he'd be on less medication-how wrong we were! 

Last months hospital visit was as traumatic as ever and I was sent home with 3 bottles of chemotherapy pills (to dissolve daily in a syringe with juice), 2 bottles of steroids and various items of protective clothing,gloves,goggles and a mask to use when administering the chemo to Charlie. Your first thought (and the question often asked by friends too) is, if you have to protect yourself, what is it doing to Charlie?! A question we cant really contemplate for too long as there isnt much of an alternative and thinking about what it must be doing to him, makes it unbearable.

Expecting Charlie to take the chemo from the syringe with no issues was our first mistake! I hadn't gowned up and protected myself so when Charlie refused to take the drug and instead spat it out onto my arm, I hadn't expected the burning sensation it caused.Trying to get the steroids into him proved to be just as difficult.We had certainly underestimated his strength of character (and the vile taste of the medicine)!

After this experience, I ensured that each night I put on a gown,goggles and mask and explained to Charlie why I had them on (as he hated them). Paul had to hold him down whilst I (attempted) to put the drug filled syringes in his mouth without any spillage (due to the toxicity). It was impossible and we felt so cruel as parents doing this to him. We were meant to be his comforters not the pain inflictors and it got increasingly difficult and stressful for all involved. I began to think about the medication all day and dreading the time coming to administer them. This was too hard on all of us. We finally realised we may have to get the nasal tube inserted after Charlie choked on one of the drugs I gave him and we just couldn't take anymore of the torture,or so it felt.

However, visualising him with a nasal tube was too upsetting, rightly or wrongly I see it as everyone knowing that you have a seriously ill child,including us, when we look at him on a daily basis and I dont ever want that if we can help it. Its something we never want him to have if we can avoid it-to me, it means he's sick and its a constant reminder.Telling him off and putting him on the naughty step would be so much harder aswell!!

I spoke to our Liasion nurse about the issues and she put me in touch with the Occupational Therapist to look at strategies to help him see why he needs to take his medication and hopefully get him to take it.

So in the meantime we perservered in trying to get the drugs down him and I suddenly remembered that last time we gave him the steroids he loved the remote helicopter. We charged it and geared him up for a "flight" but only if he took his medication. It did the trick!! So each night, we now fly the helicopter once he's taken his chemo. The OT wasnt much help to be honest as the strategies were too advanced for a 3 year old.

Charlie's blood counts have been dropping over recent weeks which has meant that we have had to do blood tests at the hospital weekly to ensure they don't drop too low. The expectation of visiting the hospital only once a month whilst on Maintenance hasnt quite happened yet!

Last week was the children's cancer charity's Christmas party at the beach.It was such a fun packed day  with kiddie rides, a boat trip and Charlies all time favourite, the farm animal petting area. He was in there ages, going from one animal to the next and back again! He was choosing which one to bring home I think as he told the lady "mummy wants one". We had a swim in the sea to cool off as it was a very warm day then Charlie managed to fall asleep just before Santa arrived with the goodies. What a fantastic day we had and the boys loved every second.

Charlie's most recent visit for treatment was yesterday and it was the busiest day on Oncology I have ever seen (god now I sound like a right moan bag but honestly,its just how it is)! We waited,and waited and read book after book then finally..Charlie fell asleep.Typical, as it was his turn to see the Consultant. More and more waiting and we then got our turn to have his port needled for the chemo and he cried and screamed and cried some more. I actually think the numbing cream had worn off as he really screamed when they put the needle through. When the chemo was hooked up and going into his body,he kept saying his mouth felt wierd and it was yucky. This really distressed him and he could actually taste the medicine in his mouth so soon after it was put in his chest.  To Charlie's delight we left the ward and he asked for chips! I checked my phone for any missed calls and panicked when I saw Toms school had called me about 3 hours earlier. Luckily he was fine and although he'd had stomach ache and a headache,he went to the sick room and managed to fall asleep.He woke up feeling fine so guilt over-for now!

Thomas has continued to be a little star through all the ups and downs we've faced. He is such a kind and thoughtful brother to Charlie. He'll give Charlie a good bossing about and a whack if he feels he deserves it but on the whole he is a caring little boy and very tolerant of Charlie and his moods when on steroids. That reminds me, I had explained to Tom that the steroids make Charlie's personality alter and he may become aggressive or scream a lot but he couldnt help it. We actually have the devil child when Charlie is on steroids and he is on the naughty step so much more than normal(most of the time he cant help it but the discipline still needs to be there). Anyway, one morning Charlie went to play in the garden and Thomas's prize posession, a Venus fly trap,was thrown on the floor. I began to tell Charlie off,only to be repromanded by a little voice telling me that "he cant help it mummy,its his medicine that makes him do it". Wise words from a 6 year old but Charlie still got a telling off!

This week has seen us visit Toms school for parents evening and he's doing so well and even got another merit for his caring and understanding nature towards others.Very proud parents. It was also D-day for his concert and the class were to perform Whams Wake me up before you go go. Although I couldnt make it (as it was the evening of the mad day at the hospital) and Charlie (and me) were exhausted, Paul videoed it. Thomas took his place on the front row and danced his heart out. At school pick up today I was accosted by so many mums telling me what a mover he was and how cute he looked which (almost) made up for missing out on seeing him live (they were probably being kind as knew I hadnt made it)!

Charlie is currently lethargic and pale but has "energy spurts" to play with his trains and Thomas (his brother not the tank engine)! As he's on the steroids, he is finding his emotions hard to control and has screamed and then cried a few times today. He is clearly confused why he's feeling this way and being 3, he doesnt know how to express these feelings. He's waking during the night having nighmares and wanting milk so its like having a baby all over again at the moment.

I expect things will continue to be up and down but so long as we have good times, Paul and myself can manage the bad. A year is a long time to go through a difficult experience without friends or family for support but we've got this far and will continue to go forward in our quest for a cancer free child-with a fair few added wrinkles on the way!!

Please excuse any mistakes as its now 1am whilst writing this, I haven't checked it and I'm shattered!