Can I wake up now?

Well, we had a good Thanksgiving.  We went to CA and got to visit family we hadn't seen in awhile, Mark and I went to Disneyland (went on 6 rides (that's all he would let me take him on) and ate at the Blue Bayou), the whole family went to the beach and built sand castles or played in the freezing cold water (no idea what the kids were thinking...), and otherwise had a good time.  That's a good thing...

We got back somewhat late Sunday night, Mark helped me unload the van into the front room to be dealt with later and we went to bed.  Mark had an MRI scheduled for 7:15 the next morning and sleep seemed more important than unpacking.

I got woken up at 6:00 by Mark having his first obvious seizure.  With the other ones, we were in the room and had no idea they had happened until after they were over and he was trying to recover.  The doctor called those partial complex seizures.  This was one of the full body shaking ones.  Those are called grand mal, and we're pretty sure that's what this one was.  There's no missing that one if you're in the room for it and I was in the bed with him, so there was really no missing it...

It started at 6:02 and lasted until 6:10.  The doc had told me to just wait it out unless a seizure lasted more than (I'm pretty sure he said) 5 minutes.  So, for the first bit I just sat next to him, tried to comfort him, and waited.  Then I called his parents (who were planning on heading this way sometime soon anyway to watch the kids while I took Mark to his MRI) to see if they could leave a few minutes earlier.  Then when his seizure hit 6 minutes, I called the only people I knew would be in the office at 6 in the morning - 911.  I didn't call because I was worried, but because the doc had said to call, so I did.  (don't get me wrong, I was worried - but I've watched enough TV (and we all know that if it's on TV it's for real!) to know that there wasn't much to do for a seizure other than wait it out)

So, a few minutes later we had a fire truck and an ambulance outside our house...  He had stopped seizing by the time people got here, and he didn't want to go to the hospital, so they just took his vitals and made sure he was ok.  Mark's left side was unresponsive again and we needed to leave in a few minutes to go to his MRI, so the paramedics helped get him into our car, made sure we were ok and left.  It was actually pretty good timing...

Poor Emily was witness to the last half of this.  She had spent the night with Grandma and Grandpa (there wasn't room in our car for all of us plus an extra driver so she hitched a ride home from CA with my brothers and sister-in-law and got to Utah long before the rest of us) and had arrived here with them and saw her daddy strapped to a chair and being wheeled out the door.  She seemed a bit shaken up, so I sat and snuggled with her for a few minutes, calmed her down, told her what she needed to hear (daddy was tired and having a hard time using the stairs right now so these nice men are helping him get into the car so we can go to an appointment), and turned on a brand new (to her) movie.

I spent a few minutes feeding the baby and then left to get Mark to his MRI, blood work, and EKG.  We had set all of this up over a week ago.  He had a list of tests that needed to be done to be able to register for the new trial.  His dad came with me to help get him out of the car and around the office, and just be an all around source of support.


Then came the doctor's appointment.

We found out at the doctors appointment that his insurance had not yet approved coverage of his new med...  That seemed to be the focus of that appointment and all other thoughts and questions totally slipped my mind.  The seizure was mentioned and seemed to be taken in stride (he had regained most of the use of his left leg while he was in his MRI), his cough that he's had for a week was looked at but deemed to not be a big issue yet (his lungs were clear), and other treatment options were discussed if his insurance didn't cover the new drug (turns out there's pretty much no other treatment options), timing was talked about for his first treatment with the trial drug (there needs to be a doctor there because the trial drug is so expensive, but the doctor was going out of town for a conference that week), etc....

Turns out the insurance will cover the new drug, but we didn't find that out until after the appointment was over.

So we left.  Mark had physical and occupational therapy already scheduled for the day and I debated canceling it, but he was doing so much better by the afternoon that we decided he was up for it and using his left leg/hand again sooner would probably be better.  After those appointments we came home and Mark slept.  Lots.

I got a call last night from the clinical trials girl who's been working with us.  The doc was going to look at Mark's MRI and see if maybe we needed to just get him on the new drug without waiting for the trial (the trial needs Mark to wait for 4 weeks from his last dose of chemo before they'll let him register) and she said the doc was going to call me to let me know what he found out.

I got a call today from the doc.  His MRI 3 weeks ago showed his tumor to be about 4cm.  His MRI yesterday said it was 5cm.  That's a fast growing tumor.  Faster than they hoped.  He is recommending Mark start the new drug this week, without waiting for the trial.  Of course, with a tumor growing as fast as Mark's is, most treatment is ineffective.  He also called another doc to see if gamma knife radiation is an option - they were going to call this afternoon.  I haven't heard from them yet, but there are risks there as well and it's possible that gamma knife will do more harm than good.  He also recommended that we move up Shelly's baptism.  She is scheduled to be baptized on Jan 4th, but the doc is worried that Mark might not have the ability to assist if we wait that long.  As it is, I'm not completely sure Mark is physically strong enough now to do the actual baptism without help.

This new drug has a 20% chance of being helpful and only a 5% chance of shrinking the tumor.  Yup, you read that right.  There's an 80% chance this will not help him.

As of right now, we plan to enjoy the holidays with Mark, and hope for the best, but the doctors aren't hopeful that he'll last much longer than early January.


I'm the first one to admit that a large chunk of my ability to get through this has been varying degrees of denial, but I can't tell you how much I have wished the last little while that I could just wake up and discover that this whole ordeal has just been an awful nightmare...




P.S.  We're trying to shelter the kids from this as much as we can.  It would be appreciated if you did your best to help us with that.  There will come a time when they have to know, but we're hoping to wait at least until school gets out for Christmas Break so they can enjoy the last little bit of school and deal with this news without having to worry about school too... (and, we're always hopeful that there will be a miracle and they won't ever have to know how bad off their Dad was (...is...) )