November 25th Thursday: News from our Doctors!

So what did we learn with our big meetings up in Calgary? More of the same I guess, nothing that really strongly pointed us in one direction. It was so cold there, we heard on the radio that it was within a degree or two of the temperature at the south pole.

First we met with the Radiology-Oncologist over at the Tom Baker Cancer Clinic. We sat in the waiting room for quite awhile watching people come and go, mostly trying not to make eye contact so that we would not have to explain our story. Most of the other people waiting were 70 to 80 years old, many in wheelchairs – not somewhere we wanted to be bringing our 2 year old. A volunteer came along and tried to engage in conversation but Rob and I were both feeling sick with the whole situation and it did not go well, despite her best intentions she made us feel way worse. So here we are after a long, crappy drive sitting sullen and tearful in our chairs when one of our nurses from the Children’s Hospital came over to say hi. I don’t think she knew it but that little visit was just what we needed to pick ourselves up and get back in the mindset that we needed before our meeting. I know she was over at Tom Baker because she actually had a job to do but I think she had a job to do at that time because God knew that we needed a friendly face. The meeting with the doctor was informative; I think we surprised him from some of our questions. I’m guessing that a lot of his patients are still in the shock from diagnosis stage, or don’t really have such a situation that radiation is such loose option. He explained how they figure it all out and how they would set her up for radiation. He talked about how the radiation would hit her brain, and how they target the tumour site. She would be fitted for a moulded mask of her head-with breathing tube, with less than 2 mm of wiggle space. She would need to be under full anaesthetic each day. She would go in every week day for 6 weeks. We asked how much this would add to the chance of a cure for her cancer. He told us “it would not do nothing.” Different tumours respond with different degrees to radiation and we don’t really know how her tumour will act. I understand that no one really know what to do. But how are we supposed to take it when we are told “it would not do nothing,” as in it would do something... but what? To what degree would it help her chances? This is not something that anyone could answer. The overall impression that we got from the radiologist was that he would rather wait and see what the next couple of MRIs look like before we sign her up for radiation.


Princesses love their sunglasses!

Our next meeting was with a paediatric psychologist, this was basically a 2 ½ hour play date for Charlotte. She was given puzzles and crayons and picture books to try and form a baseline of where her development was at compared to her peers. I think that the doctor was happy with her development in all areas except language. Charlotte understands everything but her verbal skills are not what would be expected for a two year old. This does not really surprise us; I don’t think she learned any new verbal skills during chemo in the last 6 months. In the last month (since we have been back home) Charlotte has had a huge growth in language, but she still had a lot to learn to catch up. We will be given a report on the doctor’s findings next time we are at the hospital.

The next meeting we had was with a neuropsychologist, this was to learn about the area in Charlotte’s brain that would be affected with radiation- and what the long term side effects could be. The area that her tumour was in will affect her word memory and processing skills. It is likely that reading will take more effort for her; she might need an aid in school. It sounded that there is still a good chance that she would be capable to go on to college; she might just need more time than others. The impression that this doctor gave us was that Charlotte had a chance of having these weaknesses already, and that radiation would not add much change to her development. That being said the form of radiation proposed is relatively new; it has only been used in the past 5 years. The doctor told us that the five years worth of data they have so far looks like it’s fairly good at preserving metal capabilities (in comparison to what she would have been offered 10 years ago.)


Making Christmas gifts- yep, painted rocks this year!

Our last meeting was with our oncologist. She took a look over Charlotte and thought she was doing well. She admitted that Charlotte’s case had kept her awake a few nights wondering what the best course of action was. Her research into similar cases came up inconclusive, there were two cases found- not the 5 to 8 she thought originally looked similar. The one that had the most data was of a child in the states; he (she?) was about Charlotte’s age when first diagnosed. The parents at the time did not do radiation and he lived healthily for thirteen years. Then a new tumour was found and they did radiation- thirteen years later. We liked the idea that even if radiation was inevitable in the end they were able to hold off for so long. But this was just one case, that’s not much to go off of. This change in her tumour makes our doctor vary nervous; she does not want to trust it with waiting. Although it could act benign and we could have many years before action is required she thinks that it still has the capacity to turn ugly and metastasize. If we only look at what came back from pathology from this time it sounds like she would be more comfortable with waiting; but knowing what tumour it came from originally changes things. We scheduled her next MRI for as soon as possible, we are waiting to see what it looks like before we make any decisions. In the meantime Charlotte was prescribed two oral chemos that we can give her at home. Tamoxifen and Isotrentinoin, it is making us sick to have to give these to her. Within two days we started to notice changes in her disposition, she seems to be sadder, even less patient with getting her way and tired. After sleeping relatively well for three weeks staying asleep seems harder for her too. I’m not sure how many more staying up from midnight to 4 am shifts we can handle!
So that about sums up our doctor visits on our last trip up to Calgary. Basically it leaves us waiting to see what we can learn from her next MRI.

Making snow angels, out the first day it snowed.