Navigating through the fog

I've just read back through the last two posts and I see it's time to bring you up to speed on the new treatment and how we are doing.  Ramsy has been on this study drug for 4 weeks now, and I guess the most accurate thing to say is that we are reserving judgment.  He takes the pills every morning on an empty stomach, and so far the side effects have been manageable- only 2 "incidents", as we like to refer to them.  We are very thankful for this.  There is one other person in Winnipeg taking this drug, and from what our nurse tells us, she has had much rougher going than Ramsy! 

As for whether the drug is helping Ramsy at all, we are really not sure.  He has felt increased weakness in his right foot/leg, for one thing; his speech continues to come and go according to no pattern that we can see (Chaos Theory, anyone?), but in the last two weeks we have noticed a new "fogginess" about his thoughts.  Instead of him being stuck on a word that is right there in his mind and just can't come out, the process of expressing a thought seems to be more like picking up a blob of mercury: the more you try to grab hold of it, the more it scatters into little pieces.  (Y'all know I'm old, right? Like, we used glass thermometers with mercury in them when I was little?) It has also been taking him a long time to fully lose the grogginess after he wakes up in the morning or after a nap.  Obviously, this has been concerning for us.  We mentioned this to his nurse on Friday, thinking that it might be a sign that the tumor is growing.  That is a possibility, but the nurse also said that sometimes when a tumor shrinks, there can be rebound swelling, and that could also account for the fog.  The first thing we are trying is increasing his steroids (which are used to counteract swelling) to see whether the symptoms respond to that.  Boy, do we hope so!  To me it seems that the fog is a little less thick today than it was yesterday, but again all we can do is wait and see.

We have been asked by quite a few people, "How do you do it?  You always seem so positive."  In one way, the answer is:  We don't know.  We don't feel like we are behaving or thinking in any special way, or "being strong", or anything like that; we are just being ourselves, and also don't know any other way to do it besides just doing the next thing that needs to be done, and finding the good things about being together so much, and enjoying the humor when we can. 

In another way, I guess the answer is: God helps us.  He gives us peace that does not come from any thing we do, or any attitude that we strive for, or any positive thinking that we maintain.  For the first time I am experiencing the fact that this is purely a gift given to us to help us in our great need.  He also makes sure that friends, family, and even complete strangers help us.  We have been given money, gift cards, food, letters of encouragement, smiles, parking spots, a gorgeously built ramp in the front of our house, and all of these things are reminders for us that He sees us, He knows how completely helpless we are, and He loves us.  That's just who He is.  How cool to be learning that truth through life experience so that we know it for ourselves, and it isn't just a Sunday School lesson anymore.

Speech therapy

Today I thought I'd describe what Ramsy does at his speech therapy sessions.  We go about once a week to see a very sweet speech-language pathologist (also referred to as an SPL) who, although she is very kind, does not let Ramsy off the hook!  Her goal is to at least maintain his current speaking abilities, and hopefully to improve them over time.  Although the tumor has caused disruptions in Ramsy's expressive language capacities, and the neural pathways that retrieve words don't work anymore, it is possible- through diligent long-term practice- to form new pathways so that his brain will be able to come up with those words more automatically.  It's like physiotherapy for the brain instead of muscles.

Some of the things we work on to help him exercise his grey matter include:

• naming the opposite of a given word (easy!)
• naming a synonym for a given word (harder)
• identifying a common characteristic of items in a list (What do puck, net, and mask have in common?  They are all hockey equipment.)
• adding an appropriate item to a list of related items
• listing 5 items in a certain category (Things in a Kitchen, or Restaurants, or Flavours of Chips.  This is the most difficult activity for Ramsy because his mind ping-pongs all over the category and has trouble settling on one word.)

We usually have a good laugh at least once per practice session because Ramsy likes to be very creative in his responses.  The SPL had no idea what Ramsy was saying when he gave "Jai Alai" as an answer in the Sports category!  Or another day he gave me "Hockey, hockey, hockey, hockey and ... hockey!" as his 5 sports.  (You may have noticed the hockey theme in this post. We're watching Game 4. Go Canucks!)  

Even though we have fun, it's not at all easy for Ramsy to work on this every day.  I'm so proud of him.  Love looking after him!