OK.. I think I need to ask Rach to be a little more brief!...
We had a very long hospital day today. Wednesday is our usual PMH check up day, so we left Jamie's house about 7.30am to get to our 8.30am appointment on time. Lucky we left when we did, as I managed to park in the last parking spot that I could get out of again in the designated car park. I wasn't wanting a repeat of last week's effort of getting the car stuck trying to leave the car park. Big country utes really aren't designed for tiny parking spots around city carparks! When we got to the blood collection centre just before 8.30am there were already another four people ahead of us. The waiting room filled up within the next ten minutes and patients had to wait in the corridor. After just over an hour's wait we finally went in and Charlotte had her thumb prick. Her blood flowed out really quickly today, which was lucky, as she was very upset about it today. She has really had enough of it all at the moment, poor little girl. So up to the oncology ward to see the doctors. She was weighed and measured, etc and has put on about a kilo, so that's good. When we saw the doctor he was a bit concerned, as her blood test showed she was very low on neutrophils, which are the things that help the body fight infection. He said that sometimes a blood clot may pull away and cause a low count, so requested another test. The steroids were reduced again, so just 1mg for breakfast and the same at dinner. None at lunchtime. Yay! We asked about going back to our own homes next week and the doctor didn't see any reason not to, so we will be heading home next week. Another yay! we were running late for SCGH treatment, so off we zoomed to that appointment.
Everything went as planned, but the mask is getting a bit tight and leaving some marks on Charlotte's face. We are hoping it will last just long enough for two more treatments. It was lunchtime by now, so we went upstairs to the SCGH canteen and had a quick lunch. Then back to PMH to do the blood test again. Poor Charlotte was crying before we even sat down for the test. She calmed down quickly, though and let the nurse do the thumb prick. Lucky the blood flowed quickly again and then back up to the oncology ward to see the doctor with the results. We had a little detour on the way, so Charlotte could buy a small packet of chips as a special treat. We saw the doctor again and her neutrophils were all good and all blood counts were good. Thank goodness we retested. Otherwise we might have had to temporarily stop the chemo drug until the levels went up again. So we were all good to go back in a week's time like normal. I took the script over to the pharmacist and he thought it was a bit strange that we needed more vorinostat, the chemo drug, so I showed him how much I had left. He said they weren't allowed to give us more than 28 day's worth at a time, as it expires then. When he asked how many treatments were left and I said only two more I realised I had no idea what the next step of the chemo trial was after the radiotherapy finished on Friday. The pharmacist got the protocols out and they weren't too clear, so we went back to the doctor and they talked about it and looked through the paperwork. After a lot of checking and talking it was decided we would go back to PMH on Monday morning and start the maintenance doses of the chemo clinical trial. There would be an extra blood test and then we would get the new bottle of vorinostat, which Charlotte would then take daily for the next 12 months, unless anything happened in the meantime with her blood counts, etc. I asked the doctor about going on a holiday and he said there shouldn't be any problem, as long as we could still do the blood test and get the results to the hospital like normal. I mentioned that we were thinking January would probably be the earliest time to go, he said that should be OK, as the diabetes should be gone by then. So we will have our regular PMH check-ups on a Monday from next week from the sounds of it.
We finally got back to Jamie's house about 3.30pm. It was a very long day! Charlotte couldn't wait to have dinner and go to sleep, but really wanted to go to Aunt Sam's and help put up the Xmas tree. So off to Aunty Sam's house we went and helped put the tree up. Charlotte had a lot of fun and then back to Jamie's for dinner and bed.
We saw the two other children and their parents who are having radiotherapy treatment where Charlotte has hers. The little boy was having a blood transfusion today, as his blood count was too low. He has a slightly different tumor to Charlotte's and has also had surgery. He has six treatments to go and is on his third mask now. The little girl with the same thing as Charlotte is going along OK. She has been eating like mad too and even waking up at 4.30am to get food. There was a bit of sugar in her urine, so they were hoping to get those results today, as we had warned them about the steroids induced diabetes. Her mother's family have a family history of diabetes, so they are being very careful. She was very tired too, as was the little boy.
We're taking Charlotte to her favourite place, Sizzler, for dinner on Friday night to celebrate the end of radiotherapy treatments. Then PMH on Monday and hopefully move back home again. And off to school again on Tuesday and ease back into normal life. We will work out the details for Charlotte's big celebration on the 16th over the weekend and forward the details on ...
