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!


  1. Anonymous11:03 PM

    Praying for a spontaneous remission! If that cannot be, then praying for God to put the right people with the right knowledge in touch with you.

    Hang in there! We think of you every day.
    Marilyn and Mike and Thomas and Family

  2. Hi Allison and Family,
    Thanks so much for the lovely card..You are in our thoughts and prayers everyday..
    Larry and Caroline Kelly