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.

January 16 Sunday

I have been putting off this blog post for a few days now; I am just not sure what I should write. Things have been moving so fast that it’s making out heads swim!


Let’s start with right now: Charlotte is doing well; we kept close to the RMH for the weekend. She is off her morphine and now just down to Tylenol with the odd shot of ibuprophin to keep any pain in check. She actually does not even seem to be in any pain, she just gets really irritable and grumpy and we know it’s time for another dose. She is eating a little more each day, originally all she wanted was yogurts but we have progressed to bug shaped pastas and cheese tacos. She is sleeping fairly well, but usually finds her way into our bed around 5 in the morning- at least she is still able to sleep until 9 once she is all tucked in. We have had lots of visitors stop by, nice to have so many people that love us all so much. Charlotte sure has had fun with all her aunties the last couple of days.

Friday she had a big MRI to see how surgery went and also map out her brain with greater detail for the radiologist to get his ‘mapping’ started. She came out of the anesthetic screaming mad; she screamed/cried for two full hours, nothing would settle her. This is not encouraging since we will have to be knocking her out like this every day for radiation. We were told that her LP came back clear- Praise God! That means that this tumor is still in one area and although it was quite big and had three ‘fingers’ that reached out a little deeper into her brain it is still contained. The MRI confirmed that our surgeon is a skilled man and once again got out everything that could be seen.

We were discharged on Friday around 8pm… it was a bit of a gong show to get out of the hospital, our nurse almost had us out by 2:00 but then there was just so much back and forth between her surgeons office, oncologists office and radiology oncologist that we didn’t know which way we were going. We were told at one point that we could even go home for the weekend, but then that offer was retracted with the plan that we might be able to sneak home for a couple of nights midweek.

She is getting “fast tracked” for her radiation. When Rob and I met with the radiology oncologist back in November he said that it usually takes 4 weeks to get everything set up before she would actually be getting the radiation. Our oncologist said that she wants to see us started by next week. She does not want to wait an extra moment, we saw that Charlotte’s tumour grew 4 cm in a month; we can’t wait that long again.

We have had a lot of difficult conversations over the past week that have left us with heavy hearts. Some were in preparation for if the LP came back positive. Thank goodness that has been put to rest for now. We have talked about the long term side effects of both focal and full cranial-spinal radiation. (We are still planning on giving her the focal radiation.) When we asked Charlotte’s oncologist how confident she was that radiation would stop this tumour her jaw tightened and lips pursed: she made a zero with her fingers. I think that when your doctors and nurses look like they are holding back tears it is not a good sign. She really has no numbers to put on this case, but she said that her feeling is that when we came in back in April she would have put a 60% chance of a cure on it, now she says she feels more like 30%. She told us that if Charlotte is around in two years she will be very happy. We are trying very hard to stay positive. Charlotte is a strong little girl, she has proven that many times already, and we just pray that she has it in her to show us once and for all. PNET tumours are very aggressive but they have also shown to respond well to radiation. We delayed radiation the first time because she was so young. We cannot delay it any longer; at least we were able to let her go another 10 months before we started. A dark little voice wonders if delaying has lessened her chances. We must refuse to look back, but it is getting harder to resist listening to that ugly voice. We know that we are in one of the best places we can be for her treatment. We have so many caring nurses and doctors. Charlotte’s oncologist is wonderful and we have no doubt that she is doing the best to give her the best possible chance.

January 12: just a few picutres

This girl is amazing... less than 24 hours out of surgery and she has such sweet little smiles for us.

Here she is showing off her right hand movement. High Five!

I'm not sure what this game was all about but it got her laughing.

Today went quite smoothly for Charlotte, we got moved out of ICU and over to our "regular" unit around noon. Charlotte is still on morphine, we tried cutting it back but she seemed to get quite agitated so it was bumped back up. We will take it down slower tomorrow with more Tylenol. She was generally happy all day, very tired though, she has not picked up as quickly as she did with the last surgery. It was a bigger operation this time, they opened up nearly as much as with her April surgery.
Things are moving quickly to get radiation started, we were told it usually takes 4 weeks to set up. Now our oncologist is saying that she hopes we will be started by next week. There is a lot to do to make that happen, a couple of extra CT and MRI scans, mapping her brain, making her a mask. Our doctor was originally saying we would get to go home for a few days, but with the "to do" list she rattled off I'm not sure how it will get done in time for next week.

Another short post for today..... thank you all for your prayers for our family
good night