Wednesday, June 11, 2008
Last night was a stressful time as Josh was complaining about back and chest pain. It is probably just a side effect of the Roaccutane medication he is on but it is always very stressful when things like this happen. Back pain is listed as a likely side effect and chest pain as "Less Likely" but not rare and hopefully that is what is causing it though these were the major symptoms before Josh was diagnosed so I sincerely hope the FBC (full blood count) taken yesterday shows up fine and the urine catecholamines are also normal (testing for Neuroblastoma markers Vanylilmandelic acid - VMA and Homovanyllic acid - HVA).
There is also some bruising - again could be the meds but when you're a cancer mum all these things make you VERY nervous! His poor skin is still taking a beating.
The pic next to the text is of round 3 of Roaccutane after it had healed a bit. The stuff is terrible for him but we'd do anything for a healthy boy. The mood swings are the worst part and the uncontrollable temper and aggression - the bits you can't see. He is constantly in inner turmoil at the moment. Poor little man.
This morning there was a very beautiful rainbow on my way to work so I take this as a positive sign as rainbows are very special to Josh as before he was born I saw a perfect set of three nested rainbows (our three beautiful kids?!) the day I discovered I was pregnant. There was a lovely rainbow the day he was diagnosed too so I just knew he would pull through long enough for the chemo to take effect and his lovely crystals from his bedroom at home were brought to his first hospital room and another my wonderful best friend Laura got him spread rainbows around the room and made him smile. These crystals now hang in our kitchen window and make me feel peaceful everytime I look at them.
The doctor said I have a) sinus infection as I knew hence more antibiotics and a CAT scan to check sinus damage that could be causing the infections and b) Carpal Tunnel in my right hand which will require surgery (not an option just now with three sugeries coming up for Josh and me needing wisdom teeth out...I'll get around to it one day, I swear!) so I am also on anti-inflamatories for now. Soon I may rattle!
Anika woke up in a lovely mood this morning and had to give me "lots of loving" before I could go to work. It is so nice to have kids who tell me how much they love me every day, it is so special.
I am still trying to work out how to put links to other sites on my blog other than just typing them in so I will do that for now and work out how to put in permanent links one of these days.
Imogen's site www.theholmesgang.blogspot.com and baby Blake's www.tinyearthangels.com/babyblake.html (Hope you don't mind me adding these Fi and Ree.) and the site for pages on other NB kids is www.acor.org/ped-onc/hp/neuropages.html There are some truly inspirational kids out there and each and every one of these kids stories will touch your heart, I guarantee.
We are heading to Bunbury on Friday to stay with Peter's grandad and see his brother and his kids and also to participate in our first Camp Quality fun day! Every other event Josh has been too sick to attend or has meant a trip to Perth (not really going to happen on our income just now!) but as this one coincides with a visit we have been talking about doing for ages we are all systems go!!! The kids are so looking forward to this Bowling Day and seeing their much loved "Uncle" (great Grandad). Hopefully we will see my dad too if he can get down from Mandurah.
Wishing you an amazing day,