Sunday, October 19, 2008
The last month has been such a blur that I haven't had a chance to think about what has been happening let alone tell anyone else what is going on!!! Josh has has his second cycle of chemo which he tolerated very well. There were several transfusions as usual but all round medically he was quite well other than catching ANOTHER cold when he was not yet over the first!
We were able to head home the day after treatment as he was topped up with platelets before we left and stayed home for a massive three days!!!*just a hint of sarcasm there!* the reason being the timing of the transfusions and scans was a real pain in the bum so we forfeited going to Telethon and Sailing on the Swan to get home for a bit as Josh had been so miserable being in Perth for so long. On the upside, we did get to see a lot of the lovely Lara who even brought me a homemade birthday cake (I had a total of three cakes; I got an icecream cake as the kids were distraught I wouldn't have one, Dad brought one up and Lara made one!). We made trips to Kings Park, Lake Monger Reserve and next door park as Josh was not well to head over to the other house and play. It was crappy weather interspersed with lovely days, very unpredictable.
After the MIBG got cancelled once and rescheduled, it finally got done and after we headed back up, the CAT scan happened and we headed back home as the counts were not going to be high enough for chemo the week after. We are still here! We had to come up early for the CAT scan due to the fact the blood bank decided they were not going to send any more blood products to Albany as they had to be discarded again due to incorrect storage. Apparently they had been sticking them in an Esky with a freezer block and putting them on a road courier to get here! For those who don't know, it is a five hour drive and considering they were heading inland to Narrogin, Wagin etc. on the way, you may as well add another two hours to that. Our angel Liz had a very stern word to them and they quickly changed their minds about that one! I had been bawling my eyes out at the cruelty of having to stay in Perth permanently as he was needing products between once and four times a week. I was so so happy when the all got sorted out and I have now been assured that they will be flown down in the future. It just made me so mad as there is a severe shortage going on and they are causing them to be tipped down the drain as it is cheaper to freight than fly products! HUGE thanks to everyone who has donated since the big roundup. Even though Josh won't get your donationg, it will save the life of someone in desperate need and means we won't have such a wait when he does need blood or platelets. Don't forget to keep donating!
Josh has been quite well. As you can see from the pics, his hair fell out after the first cycle and this time it was a frustratingly slow process. Anika and I had a gastro bug, but Josh seems to have miraculously avoided it!!! We haven't really seen any of the kids friends due to mutual illnesses, but have been at the beach almost every day and have been fishing off the jetty too. We caught a few and the kids loved it. They have been loving the swimming at the beach and paddling pools too, they are such water babies and Josh knows no fear!
The scan results have shown that the chemo is holding the disease back, but it is still progressing and this counts him out of the Americal study. The only options remaining are to continue with chemo, see if he is eligible for MIBG treatment or do nothing and wait for the inevitable. Not what we were hoping for (ie. a major miracle and a NED scan result!) but about what I suspected.
At the moment, josh is not able to have any more chemo as his counts are too low so we are getting checked again on Wednesday and probably heading back up on Thursday. The only other real news is that we have seen my beautiful nephew this visit, far too cute for his own good and that Joel has turned 14 and my darling Laura is now a member of the big kids club at 27! Miss Immie had her stem cells back last week and all went well and it was so nice seeing her and Fee (and finally meeting Kody) when we were up last time. I also had a visit to work and caught up with the beautiful people there, they are as lovely and supporting as ever, lucky me.
Sparkly fairy dust and "good hair days",