No New Developments, Just New Questions

It's been busy and tiring the last several days.  There hasn't really been anything new to report, at least as far as actual answers go.  We have had a few more questions pop up though.  Mark had an appointment with the Huntsman Cancer Institute at the UofU on Friday. We had just over an hour to get from that appointment to another appointment with the surgeon's PA as a post-op follow up - back down in Utah County (it's an hour drive and we needed food, it was close...).  Minutes after we got home from that, my parents and Katie showed up at the house, ready to move Katie in for the summer and allow Aunt Cindy the chance to actually go home for the first time in almost a month (Thank you Aunt Cindy!  You have been amazing!!).  Not too long after that, Mark's parents dropped off an awesome farm fresh dinner!  I had forgotten how nummy her food is!  (living off of hospital cafeteria food for a few weeks might have had something to do with that...)  My parents stayed the weekend, and we ran around like crazy people getting a lot of stuff done.  They left this afternoon (Tuesday - I guess technically it's Wednesday, so I thought I should clarify) - and I took a nap.  That might have been a bad idea, since it's now 3 in the morning, and I've been up since midnight trying to get back to sleep.  Oh well, it's past time for an update anyway and I seem to have a hard time getting it done during the day, so maybe it's just as well that I'm awake and unable to get back to sleep.  :)

So, notes from the Friday appointments:

Huntsman is doing a trial up there that is not going on down here - both are doing the other one we knew about, but there is one other up there that's not down here.  There is a subset of Mark's specific tumor that is caused by a mutation of a gene in the brain.  This mutation only occurs in that one place and no where else in the body, so scientists have found a way to create a vaccine that can attack that specific mutation without harming anything else.  The vaccine somehow makes the immune system attack the cancer.  I'm not sure of all the details as to how it does that, but if Mark has the mutation, he would be eligible for that trial.  This trial is also in the 3rd phase, but it's placebo controlled where the other one isn't - meaning that he would be randomly selected to either get the drug or the placebo, and there is no way to know which one he gets.  The doctors won't even know.  The trial consists of the standard treatment (chemo and radiation) but would also include a shot about once a month.  The shots wouldn't start until one month after radiation, so that means that he can do the daily radiation down here (not a 1 hour drive!) and then once the 'official trial' starts he would only have to drive up there once a month.  If Mark has the mutation, this trial would be better for him - patients have done well with this vaccine and results have been promising.  Of course, if Mark doesn't have the mutation, then the vaccine would be pointless, and the other trial makes far more sense.  So, we're waiting on more test results...  Those take 5 business days, and since the appointment was on Friday afternoon, and Monday was Memorial Day (a holiday, and not a business day) we probably won't know the results until Tuesday (the 4th).  We had been hoping to start radiation on Monday (the 3rd), but we need to know the results of that test before we start.  If he has the mutation, then it doesn't matter when radiation starts because the shots don't start for a month after radiation is over - but if he doesn't have the mutation then he would be better served on the first trial (from the other post), which needs to start at the same time as radiation...  So, we need to know before we start.  I have no idea if not getting the results back will push radiation back another week, or if we can start mid week.  I guess we'll find that out at our next appointment on Thursday.

So, now we have more questions and just-slightly-less more answers...  But at least we're getting closer!

The post-op surgeon's PA appointment was just a quick incision check and a chat about how well he's doing.  He was told not to go around lifting bales of hay and that jogging might be a bad idea for a few weeks still (apparently there are stitches in his brain they don't want to pop...  I'm a fan of stitches in the brain staying right where they are!), but he was cleared for any activity that didn't put too much strain on his brain.  Lifting up to 50 lbs or so (much less than he used to be able to lift a month ago, but we'll take it considering he used to be on a 10 lb limit), bending, climbing, that sort of thing.  Running jostles the brain around (I never actually thought about that, but it makes total sense - you learn new things every day - also, random the things that we take for granted...), so he gets to wait on that one for a while still to make sure his brain is in good shape before he starts putting it to the test.

That's about it as far as appointments go.


Now for the less clinical stuff... :)

We went to the zoo on Saturday.  We had borrowed a wheelchair from Mark's grandma that we took with us.  Mark got to ride, my Dad pushed him, the rest of us (Mom, Katie, Doug and I) took turns with the stroller and the kids.  It was fun.  Mark's favorite animal is a snow leopard (I didn't not know that before this trip - does that make me a neglectful wife?), and there was a snow leopard napping right next to the glass.  Mark was rather excited to be able to be three feet from a snow leopard.  I hear pictures were taken, but somehow in the craziness of this weekend, I just now realized (at 3 in the morning, while typing, and after the camera has left the state) that I didn't get copies any of those pictures...  I'll have to fix that.

There were other fun animals to see as well: two bear cubs were playing together, some workers were feeding rhinos some bananas and having them perform tasks for the snack (raising their head and opening their mouth - sort of like a dental/vet check), the giraffes and elephants were eating right near their observation decks, seals were swimming all over the place.  We were tired by the end of the trip (especially those who pushed wheeled-people-carriers up and down those hills), but I believe fun was had by all.  Emily might have needed a nap before she believed it was fun, but by the next day she had forgotten how upset she was about not getting to ride the carousel again and the tantrum she threw on the way out (she was tired, whiny, thirsty and hungry - we had food and water, she just wouldn't take any she was so tired - she refused to ask to get up on the stroller, but didn't want to walk and no one was capable of carrying her - we were tired too).  She might not have been the only one ready to go home by then... :)

Dad spent most of the rest of the weekend stabilizing our new-to-us play set.  (Our awesome neighbors were getting rid of it late last fall so we took it down for them and brought it over - we waited about a week too long to get it back up and then it was winter and snowing - not the best time to be working outside for hours on end.  Dad, my brothers and Mark put it up the weekend of graduation and had left a bit of work for Mark to do to get it in better shape - which would have been perfect if Mark hadn't ended up in the hospital two days later...)  Some repurposed left over wood (intended for the roof we didn't put on), some tightened screws, and a trip to the hardware store later, and our play set is super sturdy!  Much less worrisome when the kids are swinging!  Thanks Dad!

Mom was also busy.  She helped Doug buy a car, helped me get the AC in our van fixed, bought stuff to make strawberry jam, made strawberry jam, made honey butter ambrosia (yes, it's as good as it sounds), went on more than one grocery/store/shopping/errand trip, helped be my moral/physical support while I made a double batch of bread (it's been a while since I've made bread for the house - our freezer needed to be re-stocked), washed oh-so-many dishes, and then fried all the scones we made with the bit of left over dough from bread making.  All while also helping with the kids, figuring out meals, and taking time to play games in the evening.

Katie was also busy.  She took care of the kids (a huge job in itself!), tried to do some unpacking (not sure how well that worked with the kids needing so much attention and Mom and Dad staying in her new room), ran errands, helped out Dad while he was fixing the play set, and basically did everything that got dropped by everyone else while they were doing other stuff.

It was a busy weekend.  Which makes it even more surprising that I'm not wiped out and fast asleep right now...  I think I'll try that now.

I'll have to do another post some time about all the funny things Mark has been saying.  He read a book called Tell My Sons that got shipped here while he was in the hospital (the paperwork said 'a gift from Robert Gardner' which we assumed was my dad, but it turns out he knew nothing about it, so it must have been from my brother instead - it's been a good book for him, so he's grateful even if we struggle at figuring out who it was from. So, thanks!!).  One of the lines that stood out the most from the book for Mark was a re-make of a quote from Nietzsche (I had to look up how to spell that...).  The author claims that the original saying wrong; it should be 'That which doesn't kill me makes me funnier.'  Mark has been popping out some rather funny one-liners (some haven't been as funny, but quite a few have been).  He's less involved in the conversations in general - he enjoys hearing other people talk and he catches everything people say, but he's a bit slow getting words from his brain to his mouth still.  The fewer and further between comments he makes are often jokes.  I'm starting to forget many of them, which is probably why I should start writing some of the better ones down...  One of the first ones he came out with just a few days out of the hospital was 'My tumor has a first name, it's t-u-m-o-r' (sang to his best attempt at the Oscar Meyer Weiner jingle).  His voice tone and pattern is still a bit funny.  His voice sounds almost hoarse, and his vocal pattern sounds almost robotic (monotone and without inflection - he tries to put inflection in, but it doesn't often work), it's not overly noticeable unless he talks for a length of time - like when reading a story to the kids, or trying to explain something to them, but once you notice it, it's hard to not see it in almost everything he says.  I'll have to ask his speech therapist if there's something we can do to help with that...  Add that to the list of things I need to do... :)

Ok, for real this time, I'm going to try to sleep.  An hour spent typing is probably enough for one middle-of-the-night session for tonight...


(please forgive any typos - I hate typos! but 4 in the morning is not my best proof-reading time)