We Have Info!

Well, we have more info, if not all of it yet...

Mark had his first appointment with the radiologist yesterday.  We learned more about what future treatment will be.  There is a clinical trial that he will likely be a part of, once they confirm that he's a match.  That will take a few days to get all that in order (the study wants to test the tissue they removed to be sure he's a match for their study).  Once that goes through, he will be randomly chosen to either be on an extra drug or not.

The clinical trial is in Phase 3.  The first phase is the scary one to be in.  Basically in phase 1 they are testing out terminal patients to see how much of the drug they can give them before it poisons them.  This drug is past that phase!  In the second phase they give the drug (now at the right dose) to everyone in the study to see if it's making a difference in general.  In the third phase (the current phase), they give this drug to a portion of the patients to see how the drug compares to a control group.  We don't know yet which group he will be in (control group or testing-the-new-drug group), but either way he will get radiation and chemo.  This is not a blind study, so if he ends up taking this other medication, we will know.  He either gets an extra pill or he doesn't.  Both chemo and the new drug (I heard a name, but even seconds after hearing it I couldn't write it down anything close to how it was pronounced, so it's a no-name drug at the moment -that might change if he ends up on it) are a pill that he will take daily durring radiation and then be off for a month.  Then he will start taking pill(s) again for a year, with differing schedules of the two different pills.


While on radiation, he will be very tired.  More tired than most radiation patients, because they're attacking parts of the brain, which is what makes you, well .. you.  The tiredness will be offset a couple of weeks, meaning he'll be fine the first few weeks and then get really tired and he'll stay tired for a few weeks after it's over.  I'm assuming he's going to pretty much nap the summer away. :)  It's probably the best way for him to get through this next rough patch, so I'm not complaining.  We will just have to work a little bit to keep him as active as he can be, without over doing it, and his recovery on the other end should be faster.

Long term side effects of radiation are pretty minimal.  When he gets tired his short term memory will struggle, and his ability to do cognitive activities will also be not at it's peak.  The Dr recommended that he not help kids with algebra at night, do that in the morning when he's awake and fresh.  (Although, I'm pretty sure that Mark shouldn't be helping kids with algebra at any time of the day - math is not his strong suit)  It's not unlike what a brain does naturally in people as they age.  That's about it in terms of side effects.  The radiation could cause (probably localized) hair loss, but it will likely grow back, it just might be a bit thinner or be a bit patchy.  The chemo won't cause hair loss, the chemo is different in the brain than it is for the rest of the body.  The blood/brain barrier makes normal chemo less effective for treating tumors in the brain.  The chemo that Mark will be on is a pill that doesn't really do much to actually kill any cancer cells, it just makes them more sensitive to the radiation.  I am under the impression that there are pretty much no side effects from this particular chemo.  They were able to find a balance that made the chemo both less toxic and more effective at the same time.  No complaints here!

Mark has gained a little bit of weight since all this started (10 ish lbs - not a lot, but I can tell his belly is a bit rounder than it used to be), and we found out that this is from the steroids - that combined with the fact that brain injuries are the second highest calorie consumers in the healing process next to burns, and the fact that he was bed ridden for several days and is only just beginning to regain an almost normal activity level.  He has had a very healthy appetite.  Perhaps even a bit 'overly healthy' under normal conditions, but all the doctors are glad that he's eating as much as he is, so we're not too worried about him yet (in fact, we joke about it regularly - he can go from 'I shouldn't have eaten that last half of my plate, I am so stuffed' to 'I hope there's something good at home for dinner, I'm hungry' [and then eat two platefuls of food] in an hour and a half :) ).  Radiation also takes a lot of calories to heal from, so they are hoping that he will maintain his current weight during treatment so they know that he is taking in the calories and protein his body needs to heal itself.

At the end of the appointment they took him back to some room (I got to stay in the waiting room and work on a puzzle they had out) and they made a plastic mold of his face.  They will use this mold to help keep his head in place, and they will also put markers on the mold to help guide them when doing radiation.  Apparently they usually put a tattoo on your skin, but they use the mold for this so they don't have to put those tattoos on his face.  I don't know yet if they will put tattoos on the back of his head, I'm pretty sure they are going to be hitting the tumor from a variety of angles around the head, but I don't think the mask goes all the way around...  I guess we'll find that stuff out when treatment starts :)  

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In other news:

It's been a while since my last telling of stories.  We have mostly just been normal (at least as normal as can be, considering).  

Saturday was a fun day.  Doug had called to let us know there was an Astrofest (astronomy based fun) going on at BYU that he was going to be volunteering at.  There were going to be activities, fun stuff to do and see, and bounce houses and a rock climbing wall.  Of course we decided we needed to go!  We all hopped in the car and braved the off and on drizzle to have fun out of the house!  We brought two cars, so that if Mark crashed we could get him home without ruining the kids' good time.  We ended up parking pretty far away from the event.  It took Mark most of half an hour to walk the distance that he normally would have been able to cover in under 10 minutes, but he made it without needing a break until we got there!  He is improving all the time!  He also had his walker, which helped.  The kids had a blast on the bounce houses.  Emily was afraid of them at first but once she saw that Annie was in the small one, she warmed up and even got brave and went through the big one!  Shelly and Jason also had fun with those.  Shelly tried climbing the rock wall.  She got somewhat high up before she fell (more than a few feet off the ground, but not by much).  Once it started drizzling again, we headed inside to make rockets.  Jason was momentarily lost (again...  It's a theme in his life), but he was found - again.  He always is.  He's a resourceful kid [I once tried to lose him in the grocery store - just to try to teach him that he needed to stay with me - it backfired...  He was three.  I gave up trying to teach him that lesson]  Anyways, Mark's walker prevented him from getting into the tables where the rockets were being made, so he and I went to go see some meteorites.  By the time we got back, Cindy and the kids were done making rockets (and presumably outside shooting them off), so Mark and I went to go join them.  We got distracted on the way out and ended up at the planetarium.  We made it just in time to sit down and watch the show, and there were even a couple of seats left!  That was not our original plan, but it sounded like fun and fortuitous timing, so we sat and watched (and maybe slept through part of) the show.  We caught up with the rest of the family afterwards, just in time to realize that we were about to be late for a play that our friend's kid was in.  We hurried out of there (meaning, I hurried to the car and drove around to pick up Mark so he didn't have to walk so far) and then went to go watch Wizard of Oz put on by an elementary school.  It was fun to see the one child we knew, and visit with her mom for a bit, and the rest of the play wasn't half bad considering how young they were.  Then Mark wanted to go out to dinner, so we went to a Mongolian BBQ restaurant to eat.  It was rather a lot of activity compared to how much we had been doing.  I think Mark really liked getting out of the house!

Mark went to church on Sunday again.  He wanted to stay for all 3 hours, and probably would have done it, except Annie had a pretty good cough and we didn't want to send her to nursery, so we brought her home.  Mark had also managed to overdo it just a little bit on Saturday, and was a bit sore, so it was just as well he got some rest.

Monday morning was a visit from the physical therapist.  He gave Mark a few more exercises, was encouraged by his progress, and said that when he came again he would do another balance evaluation.  The therapist was pretty sure that Mark would easily pass the new evaluation, and at that point the visits from him would be done.  That is both good news and bad news...  We're glad he is improving, but he's not quite where he used to be, so we'll have some work to do to make up the difference.  

That afternoon was a busy day waiting in the doctors office.  We were there for over three hours, but it was worth the wait (1 hour waiting, a good long time talking and then another wait for me while they borrowed Mark to made the mask).  And then we went out to dinner and ran some other errands and were just spending time together talking to make sure we had time to process everything before we had to start answering the barrage of questions we knew were waiting for us. (not from Cindy - she has been super awesome at waiting until we were ready to talk and never asking questions she thought we might not be ready or want to answer - she even suggested we go to a hotel just so we didn't have to deal with any of it until we were ready.  Awesome idea, but the thought of packing up stuff to take with us sounded like work, so we came home instead)

Today Mark wanted to try driving.  I have been nervous about letting him drive.  We already talked about what I would need in order to feel safe letting him drive, so we headed over to a nearby church parking lot (not often busy during the week) and I gave him a 'driving test'.  It was not nearly as rigorous as what the DMV would do, but they also aren't working with people who have spent the last 15 years driving well.  I wanted to make sure he was physically capable of turning the wheel and hitting the gas and brake.  Then I wanted to make sure he could maneuver, follow a 'course,' and had a decent reaction time and pretty much anything else that occurred to me once he was behind the wheel.  Once I was fairly confident about all of those (except the reaction time - somehow there just isn't much to react to in an empty parking lot...) he headed out onto the road - but we stayed on the less crowded ones until I could feel safe about his reaction time.  Once we got all that figured out, Mark drove us to the DMV.  His inability to walk long distances has earned him a handicapped placard, so we went to get that taken care of so that we could run errands without wearing him out before we even got in the door.  

The driving, and the walk from where we parked into the DMV and back to the car wore him out just enough that I did the rest of the driving for the day.  He had another dr appointment for a rash that he randomly started getting a week or so ago.  Turns out it was caused by him coming off of steroids (not all the way off, but getting a lower dose than he had at the hospital).  They usually treat rashes with steroids, but when too little steroids are causing the rash, adding steroids back in does nothing to fix it, only postpone when the symptoms occur.  And thus begins another adventure! :)  So we got a prescription or two, picked up some groceries and headed back home - finally...  That was a long trip - mostly waiting for the prescriptions for be filled...

We finally got to see the occupational therapist today!  He gave Mark some good exercises to work on, checked our house to make sure Mark was safe (it seemed a little bit late for that, since he's been home and safe for over a week now, but we appreciate anyone who cares about how to keep Mark from getting injured), left some 'equipment' for Mark to work with (bands and thera-putty), and set up an appointment to come again later this week.  So far, I think it's actually been one of the better therapy appointments we've had. The physical therapy has also been helpful, but it has pretty much only focused on balance.   Occupational therapy will be more detailed and broad at the same time.  The speech therapist has only done an evaluation so far, so I'm hopeful that those will also be good once we really get going with that in the next few days.

I think that's about it.  I started typing this up at 8:30 this morning, and I'm only just now finishing almost 12 hours later.  I kept getting interrupted...  I probably missed some stuff, but trying to figure out what that is will only prevent me from posting this until next week.  So, here's what I've got so far!