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 We were told at one point that we could even go home for the weekend, but then that offer was retracted with the plan that we might be able to sneak home for a couple of nights midweek.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.