Charlotte’s line removal surgery was originally booked for Tuesday so it was a difficult trip up to Calgary knowing that was not the reason we were going for. We had a meeting with her Oncologist and her Neurosurgeon and a LP (spinal tap.)
Jumping to the end of the story her LP came back clear, a very huge relief. That basically meant that no cancer showed up that could have been hiding in her spine.
Charlotte had the LP done first but that takes a couple of days to get results back so we didn’t hear that news until after our “big meeting.” During our meeting we covered a few possibilities of what the future could look like. Immediately the first line of action is surgery to remove the mass in her brain, they wanted it no less than two weeks away. Surgery is now booked for around 12:30 on October 27th (my birthday.) The surgery is expected to take about 2 hours, much shorter than her original surgery because the mass is only 1.5cm big. Our doctor expects her to heal up a bit quicker than last time too; he said she should be up and about within 4 days. They will likely use the same opening to go in, something to do with not having to cut the membrane around her brain again. The expected side effect from this would be that it could make her right side weaker (less coordinated)- we can see that her right hand is already weaker from our initial go around. Since she is already naturally compensating for this our doctors said that this is a small “cost” and it would not likely slow her down much more. Our doctors talk of side effects from treatments as the “cost.” Then after she has healed a bit where would we go from there?
The first thing we discussed was what if the LP came back with something positive. Not something I ever want to dwell on again. With our doctors we would have had to make the choice to give Charlotte full cranial and spinal radiation (which would have a high cost leaving her physically and mentally handicapped-with no guarantees of a cure) or let her be after surgery and let her enjoy life for as long as she could. This took us down a dark and bleak road that I would not wish anyone to travel upon.
Our next conversations hinged on the LP coming back clear. After surgery the mass from her head would be sent to pathology, if it is confirmed to be the same tumour (which our doctors highly suspect based on the shape of it) then we would meet with a radiologist. The options and side effects vary but basically she would be given some form of a concentrated focal radiation. I don’t know anything about how radiation works but it sounds like they could target either the entire hole left by the original tumour or they could target just the spot where this new mass has shown up. Targeting just the smaller area sounds like it would not leave her with as much permanent damage but it might still allow the tumour to come back in a different area. From the beginning we were told that they never want to do radiation on someone younger than three because there is so much developing going on still. With any of these options of radiation there will be unknown costs because she is so young. Our Oncologist is speculating that with focal radiation she would still be able to be mostly independent in life. She told us that Charlotte would likely be slower than she would have been, might require an aid in school for example. Because we would be targeting an important area in her brain for movement it could impact her use of her right side, her coordination and maybe growth. I don’t know what that would do to her speech either. She is already quite behind where Yolanda was at the same age, I don’t know if that’s from the tumour or from her big sister talking all the time that she has never had to! Anyway our Doctors gave us all this as a really rough picture, we would learn more from the Radiologist if the time comes.
Her Neurosurgeon told us that the morning of her surgery they will do another MRI to guide them. He has had this MRI come back clear before and has cancelled surgery ten minutes before the planned time. This is what we are praying for. A miracle.
So what now? Well we have had a nice, quiet but busy two weeks at home. We spent some time out in the yard cleaning things up and getting ready for winter. Rob has been busy and hauled in trailer loads of firewood. I did some sewing and organizing in the girls rooms, went through their clothes... a never ending battle with little kids that grow like weeds. Unfortunately as Charlotte’s legs grow longer her waist keeps growing smaller, a very awkward size to find pants that fit. We have had lots of fun with family and friends and tried to make the best of our time at home.