We have had a nice break, but chemo must go on.

Seth has enjoyed having a week off chemo and steroids and any kind of medication whatsoever. We have enjoyed (particularly me) having a week off travelling into Westmead. On Sunday, Seth woke up with a nasty cough, so I took him into Campbelltown Hospital to get it checked out. They said it was just a case of Croup which is viral and they couldn't do anything for him. However, the next day, he woke up and was fine, as if nothing had happened. I was supposed to take him to Westmead on Monday, but his blood count which was done on Sunday at Campbelltown showed that his levels were not high enough to start. They then booked us in for Thursday for a lumbar puncture and chemo (the 6 hour one), however on Australia Day (wednesday), I came down with a bad cold, earaches, headaches, chills so I rang the hospital explained the situation that I was unable to make it. They have booked us into Campbelltown Hospital again for Sunday for another blood test just to make sure his counts are high enough to start chemo on Monday. Unfortunately this means that Seth will miss out on his first day of school, which he was really keen about. He misses school very much and I was hoping this year we could get him there more often. I am sure we will once he is past this last phase.
If Seth's counts are good to go, then he will have chemo 4 days in a row, fortunately I can get 2 days of it done at Campbelltown.
News on Brett's recovery is not as good as we were hoping. He is up and moving around, but is in alot of pain, particularly down his left leg. It has been 5 weeks since his operation and we would have thought that the amount of pain he is in would have improved a bit more than it has. We still hold out hope that this will not be a permanent thing, but it is seeming less likely as time goes on with no great measure of improvement.
This week we attended the funeral of Brett's grandmother which was very sad and very moving for us all. Fortunately the kids got to see her and share jokes and sing songs with her just before her passing. This has helped them alot to think that they made her happy.
And in a rollercoaster week, yesterday we got more news about Seth's wish. The "Make a Wish Foundation" has booked us the biggest boat in the Whitsunday's a 52 foot cruiser that looks amazing and is named "Brazilian Beauty". Seth was so excited - it was priceless seeing his face when he saw the pictures. He is planning many an adventure on board his boat and has already picked out his room (it has it's own tv and dvd player). It will certainly be a week highly anticipated and remembered for the rest of our lives. I am glad Brett is the one with the boat license and I will be the one able to relax!!!

Roid rampages

Seth has been to hospital twice this week, twice last week for treatments. He had his last needle on Tuesday which was great. The steroids are taking a toll on him this time around and he is swinging wildly from cranky, to crying, to cheeky to exhausted in the space of seconds. He is really tired all the time and just lays around with no energy. This is the first time throughout the whole treatment I have seen this utter exhaustion from him. He has put on weight again and has the most gorgeous chubby cheeks and tubby tum. He plans all meals we are going to have and accompanies me to the shops to make sure I get all the things he is craving and is my little cooking buddy. Food is our life at the moment and if the craving isn't satisfied, he obsesses over it and talks about it non stop. Chicken taco's tops the list with twiggy sticks a close second again. It is nothing for him to eat two breakfast's, munch on snacks all morning, eat 3 sandwiches, munch all afternoon then eat more than his dad for dinner and top it off with a couple yoghurts and drinks of milk after dinner. A funny thing we have noticed with these steroids is that he chatters really quickly when he talks - like he is on fast forward. The steroid dose dropped as of yesterday and he will be finished in about a week and I am beginning to see a slight difference in his energy levels already.
Seth needed another heart echo done today before he had his next dose of Dauxorubicin and Vincristine which is the red one that take an hour and a clear one that takes 10 minutes to go through his line. He seems to have handled it well so far and he has one more lot of those two before starting a new block of different chemo. We will get a week's break between these two lots and I am really looking forward to staying at home as the next chemo is 4 days a week back and forth for a couple weeks, but hopefully I will be able to go to Campbelltown for 3 of those 4 days.