Not a good week at all :-( Last Tuesday we went to RCH expecting that Rafael might need a blood transfusion. He actually needed a platelet transfusion as well :-( It surprised us as its the first time this chemo has knocked his Pl count :-( It was a L O N G day for Rafa & I and thankfully our dear friend Rosie popped in to visit. In fact, she sat with Rafael while Dom and I had a very lengthy meeting with Dr Michael :-) There is a lot of stuff going on! 1st is great news - Rafael will now require blood transfusions when his level is below 90! It always hovers around 82/83 and he is always tired and lethargic :-( He needs the boost ;-) 2nd is that RCH are asking for more information from Michael re SYD! In fact, they were calling and texting while we were there! 3rd, next round of chemo has been upped to stronger doses (Topo/Cyclo) :-( Rafael is now becoming symptomatic and feeling pain. The time to wait is over!!!!! 4th, last week at school Rafael fell over and skinned both his knees :-( Yes, its a rite of passage, but poor boy, they just bled and bled and he was in so much pain :-( This week, Rafael made it to school a bit :-( His teacher is wonderful and really looks out for him :-) Ive had to pick him up early, hes had to go the nurse for Panadol and yesterday he came home really sick!! He could hardly walk he was so ill :-( He caught a virus at school and between lunch and home time it really knocked him :-( Why do parents send their kids to school sick???? He has no voice, blocked ears, runny nose and a fever :-( We should have taken him to RCH last night when his fever was 39.6C!!! But he cried and begged us not to :-( We could see that it was a viral infection and not bacterial so we held off ;-) Thankfully with lots of Panadol and a good nights sleep, his fever has lowered today ;-) Dr Michael is overseas (again!) this week and we are waiting to hear any news. Waiting ..... waiting ..... waiting ......... since July!!!! Its getting beyond a joke and we are not in a very happy state these days :-( Rafael has a lot of leg pain and hes needing Nurofen and heat packs to help! Hello!! This is where we were a year ago :-(((( We are fighting for our Warrior as best we can! Having a part time Dr doesnt help at ALL!!!
Posted on: Thu, 23 Oct 2014 09:30:24 +0000
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