Sunday, November 28, 2010

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.

November 21st Sunday: Three weeks at home!

The last post ended hoping that we would have more info by the following week; well we just finished our meetings in Calgary now and are home. We think we have a tentative plan in place for Charlotte’s immediate treatments. We talked to four different doctors, and still got nothing conclusive that really steered us in one direction or the other. Since just waiting for these meetings took us to week 4 post surgery we have decided to wait and see what her first MRI shows. Then we will come up with a surer plan. But backtracking a bit...............

In the weeks between our Calgary appointments we started looking at Homeopathic, Naturopathic and Integrated methods and medicine. Rob and I really have learned a lot about alternative methods for treating cancer... and there is a lot of varying ideas out there once you start looking. Our phone calls have taken us to San Francisco, a couple places in Mexico, Huston, Switzerland, Ontario and Vancouver. We have had lots of helpful suggestions and referrals from friends and blog readers. We have watched several DVDs and read countless books on different methods. We have researched everything from high dose vitamins, plant based concoctions, healing salves, and radical diet changes to DNA testing used to configure a personalized chemo regime. We have done a lot of research to try and sift through all the herbal remedies, fancy berries and plant extracts that different companies tout as cancer healers. But through it all we learned that there is no single thing that will cure her. We have learned a lot about how our diet can affect cancer and have decided that that was a good place to start.
The first thing we did for Charlotte is to try a diet change for our family. This has not been easy but I anticipate as time goes on it will get easier. We have cut out all added sugars, no candy, no baked goodies, and no frozen juice punches anymore. We have drastically limited our meat intake as well; mostly to cut out the red meat. We are also trying to eat as much raw fruits and veggies as we can. Many alternative cancer care methods rely on a vegan, raw diet. While I don’t think that this is entirely realistic for a two year old there are a lot of ideas from it that we are trying to incorporate. For someone who used to plan the entire meal around the type of meat each night this is taking some getting used to! We are trying to include some juicing and smoothies to boost her fruits and veggie intake, unfortunately as soon as the juice gets more exotic than apple-carrot she turns up her nose. The idea behind all this is that she needs to boost her immune system and be a healthy as she can. We all have cancer cells in us but usually our immune systems can keep them in check. It looks like tumours like an acidic environment and spikes in glucose in her system basically feed the tumour so we are trying to keep an even keel with those.
The second thing that we are going to add is some Naturopathic remedies. Our theory is that even if they don’t help at least they will not hurt her- more than I can say for chemo! We have spoken with three different Naturopathic/ Integrated doctors (Integrated meaning they have studied both conventional and natural methods) and have narrowed down a list of remedies that we are going to apply. We talked to integrated doctors both in Switzerland and Vancouver who independently gave us the same three remedies to try, so we plan to use these things with the Naturopath here in Cranbrook keeping a close eye on her. We have double checked this list with Charlotte’s oncologist at the Children’s Hospital and she has given us the ok on them. Reading over the list she had a little smirk on her face that showed her true thought on these ideas but she did say that none of them could interfere or harm her in anyway.

Wednesday, November 03, 2010

November 3rd Wednesday: An update without facts?

The Picutres are from Halloween up at RMcD house... nothing to do with the post today.
Ewww, Im not sticking my hands in THERE!!!
Well the big Tuesday meeting came and went... and do we know much more than we did on Monday? We now know that no one really knows what we are dealing with. Our oncologist called today and said in all the searching she has done (with colleagues in Toronto and LA) she has come up with 5-8 cases that look similar to Charlottes. She is still going to take a closer look at each of them, to see if we can draw any parallels for formulating our next step. That’s 5-8 cases in all North America; so we are not working with much background here.

OK, now that Mommys got it all cleaned out.
Charlottes tumour had changed in composition it is more “mature” the cells are not dividing as rapidly making it have more benign characteristics. They did not actually call it benign though. This is still better than the original tumour but it does not mean that it is one hundred percent predictable. A positive thing about this is that there IS less of a chance for it to metastasize throughout her brain and spine. One problem with this is that those cells, if any were left from surgery, are not as susceptible to chemo. Most chemotherapy drugs target fast growing cells.
It sounds like there were two ideas on the table during this meeting and by the end the conversation was based more on personal biases than on facts. One idea was to hit the cavity with a focal radiation; the other was to wait and see. They both have pluses and minuses of course and our problem is that there was no consensus between all our doctors. If the doctors would have all agreed on a treatment it might have made our decision easier. That will leave it more up to us to decide what we think the best course of action is.

Radiation would likely be 6 weeks of treatments, a rough and rotten 6 weeks for Charlotte. It would leave her with some (unknown) permanent damage. It might stop the cancer from coming back or changing again. But it might not. From the beginning we have been told that radiation for someone under 3 is not desirable because the brain is still growing so fast at that age. Is the cost worth a higher chance of a cure?

“Wait and see” would require MRIs every 6 weeks for the first while. It would also likely involve some oral chemo drugs that we would take at home. Maybe the cancer is gone already. Maybe this last dose of chemo will wipe it out. If it did keep growing this might keep it in check; we could catch it and try radiation then- buying her more time. What if this fickle monster came back, spreading faster than we could catch it?

We have asked to meet with an oncology-radiologist to discuss what going through a focal cranial radiation would look like for Charlotte, what side effects- during the procedure and long term. We have also asked to meet with a neuropsychologist to discuss what targeting this area could do for long term mental and physical difficulties. We are also going to look into alternative treatments, just to see if there is anything else available for consideration. We have a lot more to learn before we make any kind of decision, unfortunately time is not on our side.

Brain surgery pumpkin... not much to work with in there!
And that’s all I have for today... nothing conclusive at all. Just some more good ol’ hurry up and wait. We plan on our meetings being mid next week so we will just make the best of a few quiet days at home.

The Ronald McDonald House crew put on a fun afternoon!