January 25th Tuesday: Getting Radiation Started

My sister took these picutres a while ago, before the latest surgery.

Hello to all our friends,

Well, here we are set up at the Ronald McDonald house again; we packed a little more stuff this trip so we should be fairly comfortable. The drive up was pretty good, Charlotte slept a good part of the way... all the prior screaming wore her out. Poor girl, for the first time she realized what was going on as soon as we dropped Yolanda off at Grandpa and Grandmas. But once we started reminding her how much fun it was going to be at the RMcD house and play in the playroom, and that she would get to see Jen she perked up a bit. (Jen is one of the staff there that Charlotte loves.) She had a bit of a cough by the time we got to Calgary, we are hoping that it is just from the screaming she did earlier.

We had a huge run around that night with trying to get one of her meds made up. We had forgotten her seizure med at home in the fridge, and needed one dose for the night. So we called ahead, around 2:00 to say that we would not be in until 7:00 and could they please have one dose set up for us. We ended up getting a written prescription... but one that no one in town (who was open that late) could fill because of the ingredients. That was a huge stress; calling and driving all over, that we didn’t need but in the end the wonderful night shift nurses back in Unit 1 made some magic happen for us. Getting the rest of the prescription filled the next morning was another gong show entirely.

This morning was her set up for radiation, and then her first dose. It was very stressful on Rob and I, the mental anguish of what we were doing and why, and to what avail? She sailed through everything sleeping peacefully. The nurses over at the Tom Baker Center had a fancy countdown poster made up for her to put stickers on. Her nurse brought her the sticker box to let her pick one to stick up... Im not sure she is used to handing the sticker box over to two year olds... by the time we were done we had one on the poster, stickers for on her jammies, one on each hand,... and then as she was waking up from the anaesthesia the same nurse held her hand and what was this? A sticker stuck to the inside of her hand as well. Maybe she was helping me by gathering supplies for her scrapbook! We will see if she gets offered the whole box again tomorrow. Our regular nurses know this about Charlotte and always have pockets full of stickers.

We were up a bit earlier than normal and Charlotte wasn’t allowed to eat so it made for a grumpy little girl. After showing up at the Tom Baker at 7:30 as we had been told, we waited around for half an hour, today’s appointment went a little longer too so everything could be set up for her. We were shown all her imaging and radiation scans it’s quite a big area for being called “focal.” They are covering the whole area left from the original tumour, everything around the surgical cavity. (Its around the 8-9 cm size.) They are concentrating four different beams of radiation and we got to see how the machine moves around and lines everything up. Most of her time was spent moving her around millimetre by millimetre, and then by point of a millimetre to get her in the right position. We watched on the camera as she got her first radiation treatment, she looked so tiny in that big machine. There were all the patients head moulds lined up in a cupboard, Charlottes seemed so little compared to all the adult masks. Rob and I both felt that little and scared while we watched Charlotte on the screen.

She woke up from the anaesthesia slowly but not screaming as she has in past times. Her Anaesthesiologist thought he could lower the dose a little for next time so she will wake up easier. We hung around until we were sure that she was up and stable and then headed back to the RMcD house to get her dressed and have breakfast. We got a small shock when we paid for parking, $7 for our stay; we were exactly one minute over the time so had to pay for an extra half hour. I guess we will have to see if we can find out if there are any parking passes/assistance available since we will be doing this every day.

We have had a pretty good day otherwise, got lots of playtime with the new dolls in the playroom. I was happy to see that some of the old toys were replaced with some of the Christmas gifts that had been donated for the kids. The new dolly stroller doesn’t get much rest from Charlotte; she got one for Christmas at home but has not had much of a chance to play with it yet. Her mommy was excited to see some new craft room supplies too! I brought up her scrapbook and hope to get caught up.