If someone tells you their gallbladder burst, they're lying

At least those were the exact words of the surgeon when he came out to report on Mark's surgery.  Those words were followed by 'Mark's burst.'

Let's start at the beginning shall we?

We had a good Christmas.  My awesome Cousin Laurie came to visit for the weekend and we had a good time just visiting.  On her last day here a group of us drove up to Salt Lake to eat at Cheesecake Factory.  Mark came with us.  It was his first real outing for a while, so it was good for him to get out of the house.  He was in the wheelchair the whole time, just because he's been getting less and less mobile recently, but he was glad to get out.  That evening we went and saw The Hobbit, and again Mark came with us.  We had a hard time getting him up the stairs to his seat, but once there we all enjoyed the movie.

The next day was Christmas Eve and his mom's family had a traditional get together for the afternoon that Mark was able to make it to.  He used the walker to get in the building, sat in a comfy chair (rather than a metal folding chair) and managed to stay awake for the food but nodded off towards the end.  He missed the kids acting out the Nativity (Shelly was Mary and Nikki was Jesus, Emily was asleep and Jason didn't want to participate...).  He woke up at the end when the Santa gifts were handed out.  We got the wheelchair out to get him back to the car though.  He wasn't up for walking anymore.

The next morning was Christmas!  I woke him up and got him into a wheelchair so he could come be part of Christmas.  He was reluctantly willing to be woken up so early, but he was a good sport about it.  We had so many gifts!  It got a bit crazy and presents were being ignored, so we took a few breaks in the gift opening process to be able to enjoy the ones we had already opened.  We finally got to the last round at 2:00...  The last several years we have had a rather modest Christmas (a thrift store gift from us and a few dollar store things to make up some numbers, and then whatever Grandma got).  This year was a veritable feast!  The kids got so much stuff!

While I am grateful for the 'stuff,' I am far more touched by the sentiment behind the 'stuff.'  The vast majority of our gifts were some form of anonymous. Either the people giving them didn't know us (we had someone contact us about a Sub for Santa), or we had no idea who had given them to us (we had a quite a few gifts left on our doorstep, or dropped off by people who claimed not to be the giver).  The outpouring of love and consideration of us was super awesome to witness!  Through all of this I have never felt like I was facing it alone, and Christmas was just another reminder of the amazing people who are out there thinking of us!  Thank you.

That evening was another party - this time for Mark's dad's family.  Mark again made it into the building with a walker and needed a wheelchair to get out.  He managed to stay awake for most of that one though.  I think it was the food he was munching on the whole time...  :)

So, the next morning....

Mark woke up early, especially for him.  He has been sleeping rather a lot the last couple of weeks, so when he woke up at 6am and wanted to get out of bed, I was a bit surprised.  We spent the next couple of hours trying to get Mark comfortable.  He went from the bed, to the couch, to the other couch, sitting up on the couch, lying down on the couch, to a chair, back to the couch, back to bed, from one side of the bed to the middle of the bed, to the other side of the bed (blankets all tangled up around him and pillows all over the floor), trying to get out of bed on his own (he hasn't been able to do that for over a week), to the bathroom, back to the couch, to the egg chair, to another chair, to the egg chair cushion on the floor, and on and on like that for hours!

The last time he was like that was in the hospital back in Oct, and we thought it was the meds.  I realized then that I can handle him like that for a little bit, but it is so tiring that it takes too much out of me and I get grumpy with him really quickly, especially when I have other people (like 5 little kids) needing my attention.  So, in an effort to save Mark from, well ...me... I left him in the care of others while I went to Michaels with several family members to take advantage of an awesome coupon (40% entire purchase!).  While we were gone I got a call asking where his stomach meds were (he's takes Zantac while he's on steroids).  That was the first I knew of him having pain in his stomach.

When we got back, we decided to go to a family get together for my dad's side of the family.  The party was over 30 minutes away and we debated wether we should leave with Mark doing so poorly.  Finally I gave him an extra dose of steroids (just in case it was brain swelling causing his discomfort), decided that if he wasn't better by the time we got back we'd take him to the hospital, and then left.  Mark's parents were there with Mark and there were at least two adults with the kids, so we knew he was in capable hands. 

While we were there we got a text from home saying that Mark was on the way to the ER.  Turns out Mark was occasionally having a hard time breathing and they finally decided it was worth having him checked out.

We left the party and headed back to the hospital.  The whole time we were waiting for test results we sat there wondering if we were over reacting.  Mark seemed to have so few obvious symptoms, occasionally complained of pain, randomly had a hard time breathing, he was mostly just restless.  It seemed hard to justify a trip to the ER...

Then the test results came back.  His gallbladder was inflamed and would need to come out.  Soon.  As in right now.  The ER doc gave the surgeon two gallbladder patients at the same time.  The surgeon opted to do the easy surgery first.  Apparently having a brain tumor and being on a medication that recommends no surgery for 4 weeks before and after treatment complicates surgery...  Who knew?  That and his gallbladder was much worse and had more potential for complications.

So Mark waited the hour or so it took for the other surgery to finish and then headed back to surgery himself.  I was with him in holding and he was fine at first, but towards the end of his wait he had an attack that made it really hard to breathe and he was very anxious and very uncomfortable.  His voice had a total change, his eyes were all wrong (glossy, unfocusing, almost rolling back into the top of his head), and he was trying everything he could think of to find a position that would allow him to get a breath (most of the things he could think of were not exactly safe or smart for how poorly he was feeling).

I was glad to see him wheeled back, because it meant that he would be asleep soon and out of pain.

We waited for almost 2 hours.  When the surgeon finally came out his first words were 'Mark is doing fine.'  Followed by the incredible 'I've done ten thousand of these, and I can count on my fingers, of just one hand, how many burst gallbladders I've seen.  If someone tells you their gallbladder burst, they're lying.  Mark's burst.'  He then described the puss and how it was spreading all over and other gross stuff.

The surgeon cleaned him out and put in a drain so they could keep an eye on how his insides were doing, and make sure there was no infection left.  He said that even without the brain complications this surgery would be a 4-5 day hospital stay, so he said we should expect him to spend something close to a week in here.  Gallbladder removals are typically same day surgery...  

We asked the surgeon how long he had to have had this (since we didn't even know Mark was having stomach pain until a few hours before surgery), and the doc said it had to have been inflamed and irritated for weeks and had probably been burst for a day or two.  We. had. no. idea.  None.  We actually were wondering if we were even justified in taking him to the ER.  

Mark is more than able to tell us when he's in pain, he just didn't.  I'm not sure if he didn't know he was in pain, or if he thought it was minor and would just go away on it's own and didn't mention it.  But I'm pretty sure that a burst gallbladder should be painful.  Pretty sure...

Physical therapy got him out of bed yesterday.  With one person on each side of him, basically holding him up, he was able to stand up (or at least put some sort of weight on his legs), side step about 10 inches and sit back down.  Then when they asked if he wanted to get back in bed or stand back up, he opted for standing up again.  That's as much as he has been capable of so far, but he had rather a bit of pain meds in his system at the time.

So, now we have a waiting game.  It is totally possible, probable even, that his rapid decline of the past few weeks has been due to this inflammation and infection.  It's also possible that it is due to tumor regrowth.  We are hoping that we can blame the gallbladder for most of it and we can get him back functioning much more closely to normal.  If not...  well, we're trying not to think about that yet.  We are just sitting and watching.  He's been pretty much asleep since surgery.  He did have an 11 minute seizure as he was coming out of anesthesia, so that might be part of what's making him so tired.  Only time will tell at this point...

The Latest

I'm sitting with Mark while he's getting his second dose of Avastin.  The first dose was two weeks ago, and I noticed a rather good difference that same night.  He interacted with the kids more and just seemed to be doing better.

The baptism and blessing went well.  Mark had both his dad and mine in the font with him, and it was good that he had a bit of help.  Mark managed to get Shelly most of the way down but needed a bit of help getting her that last little bit of the way down.  He was slow getting dressed, but thankfully everyone there was understanding and patient.  And Nikki's blessing went well too, although Mark was a bit embarrassed that she was crying even though he was bouncing her.  :)  There were over 130 people there!  We both felt so loved and are grateful for all of you (even if you were only there in spirit)!

We've had family in town staying with us for the last week or two or three (depending on which family members we're talking about), so life has been full and I haven't found as much time for updating this as often as I should.  We are too busy talking, taking videos of Mark, playing games, making candy, etc...  When something bad happens I'll be sure to let everyone know, so for now, no news is good (or at least neutral) news.

Mark is largely doing ...not bad...  He is getting weaker, but we stopped his physical therapy last week and I think that's played a large part.  The therapists need to see progress in order to justify treating him, and his seizure set him back enough that they were having a hard time justifying his treatment on paper.

There is a maintenance program at the facility that sounds like it will be perfect for Mark.  It's the same workout, just with technicians instead of therapists.  There is no need to justify the treatment since it's not covered by insurance, and it is more predictable in when we can get appointments.  The problem is that they charge per calendar month, regardless of how much of it you use.  The original plan was to have him do his last few appointments with the therapists that took him almost into mid Dec, take a break for the holidays and pick up the maintenance program in Jan.

Mark has gone downhill enough physically in the last few days that we might need to rethink that.  He's been having a hard time getting himself out of bed.  Once he's sitting on the edge of the bed he can get himself around the house pretty well, but going from lying down to sitting up is hard for him.  He has also almost completely stopped using his left hand.  He has strength in it, he just stopped using it...

I'm tempted to go right now (while Mark is napping during his infusion) and set him up with appointments, but maybe we can do more at home than we have been for the next week and save us some money and be able to spend more time with family...  but on the other hand, he'll enjoy his family time more if he is more functional...  Decisions, decisions...

The doctors want to do one more round of treatment and then do an MRI to see where he's at.  Give the meds enough time to work, but also not wait so long we're treating it uselessly.

I think that's about all the news I have time for before his infusion is done.  When I know more or different, I'll let you know!

Help!

Mark needs your help.  We have had several impressions over the months that Mark will be healed and have a chance to raise his children.  We are not yet ready to give up on those promises, or assume they meant something other than he will raise them in this life.

We are hoping to get some help with fasting and faith from everyone who loves Mark.  Shelly is getting baptized on Tuesday at 6pm, we are blessing the baby at the same time, and afterwards we would like to have anyone who is willing to help give Mark a blessing.

If you are willing and able, we would love you to fast and pray with us either Sunday or Tuesday for this to work.  I know God has healed people with worse ailments and he is willing and able to preform such blessings, we just need to have, and exercise, the faith necessary.  And then sit back and let God's will be done.

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...) )

Slightly More Info

There's news! Not all of it is good.


His latest MRI showed some tumor growth on the edges of the radiation damage. It's growth that wasn't there in his last scan in Oct. So, his current chemo has stopped working and it's time for a new plan of attack.

The surgeon looked at the scan and doesn't think that the benefits outweigh the risk of another surgery. He can't take out any more tumor without permanently damaging Mark.

There's a drug that's been somewhat effective for recurrent tumors, but it's usually the last drug you want to try - once you use that one, if it fails the new tumor growth is so aggressive there's virtually no other options left. Our doc was going to call up to Huntsman in SLC to see if there was a trial there that we could try before we used the new drug. We're waiting for a call to see what they say and if they want to see us this week. 

 
Either way, we've started the paperwork process for beginning the new treatment. His new treatment will consist of an IV infusion every two weeks, with a trial drug (or a placebo) that he'll get every week, also as an infusion. He can't start that until 4 weeks after his last chemo dose, so he won't start treatment until Dec 6th at the soonest, and it' might be the 9th depending on when the meds get to the doc's office from their supplier.

So, that's the new news in a nutshell. Granted that's a large nut - maybe a brazil nut... or 4... :)

News!

11/20/13

Well, I met with my oncologist this morning to review the full report from my last MRI, which, unfortunately indicates that there is a small amount of new tumor growth. What that means is that our current treatment is not being effective and we will switch to a different type of drug that may be more effective at preventing the kind of growth that would make this my last holiday season; so Yea for alternative treatments being available!!

and Yea for lots of Holidays to come!

-Mark

Poor Kids....

Our poor kids have not had much luck these last few weeks...

Two weeks ago Jason cut off a good chunk of the tip of his finger (the fleshy part above the fingernail) using kid scissors (!!) while cutting a piece of paper just for fun.  We spent Sunday at the Instacare getting him stitches.  He got 7 stitches on the tip of his little finger.

The next weekend Shelly was sounding a bit horse and spent a chunk of the day napping.  She spent the next 6 days home from church and school.  I finally took her to the doctor on Friday when the cough didn't clear up and had started sounding worse.  She has walking pneumonia.  It had started out as a virus, but had turned at some point...  She's on antibiotics.

Then on Saturday Emily started getting a runny nose and Sunday Annie joined the party with both an icky nose and a funny sounding voice.  They both had mild fevers last night so I drugged them (yea tylenol!) right before bed hoping it would help them sleep a bit better.

Even Nikki has gotten in on the action with mild nose issues.  Thankfully she's stopped there so far.  Lets hope it stays that way!