Blogging in B Minor

Our 2 year old son Keegan had his second set of tubes put into his ears this morning.  If any of you have ever had your children go through the tube surgery, it’s rough when they come out of it – confused, sleepy, etc.  He did fine and is at home.  We set him with an Elmo video and he was a happy boy.  We’re hoping this is the last surgery!

I have another vaccination tomorrow.  I’m so thankful that we were able to make 3 years worth of vaccine from the tumor tissue and white blood cells taken back in October and January respectively.  So far so good.

I am still struggling with seizures.  Recently they have become slightly stronger and longer in duration – at least 5 minutes and it concerns me.  I might be pushing too hard – not sure.  Actually it’s a combination of several factors.  Sometimes it’s easy to find myself wanting to tackle so much .  I’m used to making long lists and blowing through them.  I think when I let everything in – combining my profession with my medical needs – appointments, a mix of meds to keep straight and track, treatment options, and most importantly my family and time with my kids can just get to be overwhelming sometimes and I’m in that place today – at least at the moment.   I’ve spent the better part of the last week trying to sort this out with my neurologist and neuro-oncologist.

We’ve increased doses, lowered some, added a med, etc.  I’ve run into some vision issues after changing some so we’ve made other changes and the seizures start again – every few days perhaps.  It’s a matter of finding a balance but it’s a fine line.  What complicates the seizure control is I have been told that because of the location of my tumore (on the motor strip), seizures are likely to increase in frequency/severity post-gamma knife up to about 6 months.  I can only chase the problem to a point but it’s hard to get out in front of them.  I don’t want to go on decadron or any other steriod to reduce swelling because I’d have to stop treatment at that point.

More to come – this to me is really a small issue in spite of dedicating a post to it!  The good news is the tumor was stable as of the last MRI – and I just need to stay in today as I always say.  Sometimes the frustration boils over this morning was one of those mornings.

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