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!

Mark is Amazing!

Here's an e-mail I sent to myself while I was sitting in a waiting room, waiting for Mark to get done with an appointment.  It was the only way I could think of to write it down, since I don't have a data plan...

p.s.  This is my 500th post!  Wow!!

Thursday Oct 24th:

I have an amazing husband. Recently it's been easy to forget that. As we have fought through all the ups and downs of a brain tumor, it's been easier to see where the surgery and brain trauma have left him with deficiencies. Today I was reminded of the husband I married (which, I confess, I have not seen as much of as I would like in recent months).

In recent weeks we have noticed that Mark needs more help than I can give him - his ability has surpassed my capability to help him progress, but he is still lacking and needing improvement. We were racking our brains trying to figure out where we could go to get him the help he needs and all we could up with was trying therapy to help him get his thought processes working normally again.

We were sitting in an office waiting for Mark to get checked in for a mental health appointment at a clinic in the area we can actually afford (aka: free).  All around us are people who struggle; mentally, physically, emotionally, financially, etc. They struggle.

I was sitting in the lobby lamenting how we ended up reduced to needing to come here with the 'crazy' people, when Mark leans over and reminds me why I married him.

"Just think, in a year or two I can be working in a place like this, helping people like them."

I was certain he was teasing me, but he was utterly serious. He was actually excited about the idea.

I realized how utterly shallow I was being and began to see the others in the lobby the same way Mark saw them - as regular people who need help and love just like everyone else. I also pictured Mark, knowing how he sometimes looks to other people, and I had this vision of Mark's personality and thoughts trapped in a body like theirs (or his, for that matter), and all of a sudden all of the people around me changed from being 'crazy' into being normal, amazing people who were simply having a hard time.  It was an awesome transformation.

While there is much about our current life to hate with a passion (hello, brain tumor), and there are moments that are utterly devastating as I get a glimpse of the difference between what our life used to be like and what it is now (those moments don't happen too often), and a whole ton that's hard, and more drama than anyone should have to put up with, there are moments that are so awesome they make the rest of it totally worth it.

Those moments are worth holding on to.

Mark is Home Again

I'm way behind on updating everyone, and life has been overly tiring lately, so I'm going to cheat and use e-mails that my mom sent out to my immediate family during some of the recent drama.  I'm sorry for not getting this done sooner, but the few spare minutes I've had to myself I've spent keeping myself sane and not worrying about this here blog...  Hopefully life will calm down at some point and I'll be able to get back on top of things.  I'm not holding my breath though, so I recommend you don't either  :)

Wed Oct 23rd:

Hi All,

Before Mark was released about 15 different people, doctors and nurses stopped by to check him out - cardiologist, oncologist, radiologist, neurologist, family practice (twice), social services, physical therapy (twice), dietitian, nurse (2 different ones), tech, nurse's assistant, medical equipment coordinator (for a cane)..... just yesterday - and they all said he was good to go home :-).

Mark really was discharged yesterday, Tuesday, and arrived home at about 6:30pm.  There were 3 prescriptions that needed to be filled, so I headed to the pharmacy.  Once there they told me that they couldn't use Mark's insurance to cover them because the doctor who wrote the prescriptions wasn't covered by that insurance - who has ever heard of that??!??!  I called Rachel to ask what to and she said that one of them was Mark's seizure medicine and that he really needed it.  The pharmacy said that they could fill only a few days worth while we got the prescriptions written by another doctor.  I thought about that for a second and thought, that is the last thing Rachel needs right now.  So I just filled them and paid for them.  I then warned Rachel about getting prescriptions from the correct doctor so that it will be covered :-).

Mark is scheduled to receive out-patient physical, occupational and speech therapy.  They are happy that it will be out-patient instead of Home Health because they think Mark will be more challenged that way - more equipment to have him work with.

Mark slept a bunch once he got home and felt much better on Wednesday!  Elaine, bless her wonderful heart, took Emily and Annie today - which gave me a great chance to get a bunch done around the house.  The downstairs is all cleaned, vacuumed, laundry done, bathroom scrubbed.... it's looking great!  I also did a few loads of Rachel and Mark's clothes.  I also emptied their car and ran it to a car wash to get it cleaned inside and out - is looks awesome now!!!  Mark and Rachel even ran an errand in the morning - then Mark came home and took a nap :-).  They took a walk around the block in the afternoon as well.  He just said that he is feeling really good.

I've set up two different companies to come and put in new fences - one wrought iron at the end of the carport and the new stairs and the other one a vinyl company to put in a vinyl, scalloped, white picket fence from the east end of the carport, along the driveway to the street and along the street to the corner where the lilacs start.  They should both be done in about a month.  Then I set up an electrician to come and fix the breaker box - that thing is probably 50 years old!!!

I'm leaving tomorrow, Thursday, late afternoon and will return to work on Friday.  The new clerk had worked 3 days before I left her and I hear she has done great in my absence.

The Hospital: Days 4-6

I'm way behind on updating everyone, and life has been overly tiring lately, so I'm going to cheat and use e-mails that my mom sent out to my immediate family during some of the recent drama.  I'm sorry for not getting this done sooner, but the few spare minutes I've had to myself I've spent keeping myself sane and not worrying about this here blog...  Hopefully life will calm down at some point and I'll be able to get back on top of things.  I'm not holding my breath though, so I recommend you don't either  :)

Tues Oct 22nd:


Hi All,

I don't think I've written for a few days, so here you go:

On Sunday, Mark was rather agitated and restless, probably from the seizure medicine.  He would fuss with his blanket, inching it up until all of the blanket was by his head.  He had a hard time staying in one spot in bed, tossing and turning, getting on his hands and knees, trying to get out of bed.....  Elaine timed it and the longest he stayed in one place was 45 seconds.

I made roast beef, potatoes & gravy and stuffing for Sunday dinner.  Nate & Brooke, Doug, Katie and even Rachel were there for dinner.  LaMont and Elaine came a bit late, but they ate as well.  Julibeth took a turn with Mark at the hospital so everyone else could come.  It was nice to have everyone together and chat.  We had a nice time.

On Monday morning Rachel sent me a text that said, "They have moved Mark to the cardiovascular ICU.  His heart rate dropped down into the 30s overnight - even going down into the 20s.  The move was a precautionary one, everything else looked fine.  Turns out the seizure meds can cause a drop in heart rate, so they're waiting for those to get out of his system and see where he stands.  Guess it is time to try a third seizure drug...:)" [editors note: There was exactly one other case reported to the FDA of that med dropping the heart rate.  Mark apparently was a rare case, and the doc said he would try to make sure he made another report so there would be two :) ]

Mark did just fine while on that floor and by Monday evening he was back on the regular floor - once a room opened up for him.  Mark is approved to have a nurse stay with him 24/7 and the last few nights Rachel and the Schofields have taken advantage of that - it has given them all a much needed break and rest.

Mark has been doing good today and all the doctors have agreed to discharge him and send him home.  There is still paperwork that needs to be done, but Mark should be home by early evening and get to sleep in his own bed - without nurses disturbing him during the night.  There is 'group' tonight and he would love to attend, but Rachel's not sure they will be home in time to go or if Mark will really be up for it.

I'm planning on staying for a day or two to make sure that Mark (and Rachel) are really doing okay before I leave - and that Mark doesn't continue to have seizures and need to go back.  So I might head home on Thursday evening.

The kids will be happy to have their mom and dad home again - but who they REALLY want (and who doesn't) is Nikki!  The girls ask to hold her when she is home and when they visited the hospital.

In the Hospital: Days 1-2

I'm way behind on updating everyone, and life has been overly tiring lately, so I'm going to cheat and use e-mails that my mom sent out to my immediate family during some of the recent drama.  I'm sorry for not getting this done sooner, but the few spare minutes I've had to myself I've spent keeping myself sane and not worrying about this here blog...  Hopefully life will calm down at some point and I'll be able to get back on top of things.  I'm not holding my breath though, so I recommend you don't either  :)

Fri Oct 19th:

Hi All,

I arrived in Utah late last night and found Rachel, Katie and Doug all on Rachel's bed talking.  I took Nikki from Katie and joined them :-).  We talked about Mark and when I asked how he was today Rachel said that he knew who she was.  She then said, but to understand that you need to watch the video of Mark that I took.

Rachel handed me her phone so that I could watch.  Mark was sitting on the couch with a back cushion from the couch in his hands.  His was repeatedly trying to unzip it, then zip, then unzip....  He turned it over and around in his hands.  When Rachel asked him to zip it up, he just looked at her blankly.  After she repeated it a few times, he did so.  Then she took that cushion away from him.  Mark immediately picked up a smaller pillows from the couch and checked the edges, turning it over and around looking for a zipper and checking out the seams.   Rachel asked Mark what day it was, what year is was, who was the President, the names of their children.... and Mark just looked at her blankly after each question.

Then Elaine came into the room and stood in front of Mark.  Rachel asked Mark who she was.  Mark stopped picking at the pillow and pointed at her.  Rachel said, I didn't ask where she was, but who she was and again Mark pointed at her.  He was unable to answer any questions, but he did seem to recognize his mother.  Rachel said that this went on for about an hour.

Rachel then explained the seizures the way the doctors did.  There are 2 parts to the seizures, the 1st part is the seizure itself.  Mark has had the seizures with others in the room, but no one has realized it was happening when it happened.  The 2nd part are the after effects - fidgety, unresponsive, non-verable, blank stares.... - which can last 30 - 60 minutes.

The doctor said to think of the 1st part like a wildfire and the 2nd part like trying to move into a burnt down house.  A spark causes the seizure which is like a fire going crazy in your brain - this lasts from 30-90 seconds.  Once that part is done, your brain is like a burnt down house and the second part is the person trying to figure it out, make sense of it and deal with it.  The anti seizure medicine is like spreading fire retardant everywhere to try to stop the spark from igniting and starting the fire in the first place (we think the swelling in his brain set up the perfect conditions for a 'fire').  Dr Rich also started Mark on steroids again, to help with the brain swelling - he said that he hoped that would stop the spark from even forming.  They expect Mark to be on anti-seizure medicine for at least a year.

We finally stopped talking at 11:30 and all went to bed (Doug left) and I got to be in charge of Nikki during the night - such tough duty :-).  In the morning Rachel left for the hospital early, hoping to be there when the doctor made his rounds - she guessed around 7am.  I slept in the front room with Nikki, who Rachel took with her - and I heard the kids getting breakfast sometime after that, but I was able to go right back to sleep.  I did get up later and enjoyed watching the kids play their pretend games in the family room!

Katie and I decided to take the kids to see Monster's University at 12:30.  Annie fell asleep on my lap and Emily liked to hold my arm and wrap her arms around it.  When the good team won the competition, Jason's arms shot up in the air while he yelled YES!!!!  A little later, during a scary part he said that he didn't want to watch the movie anymore, so I invited him into my (by then) empty lap and he was just fine.

After the movie I left Katie with the kids and headed to the hospital to visit Mark, Rachel and the Schofield's - it didn't hurt that the BYU football game was on and could be seen at the hospital :-).  Mark was awake, alert and knew who I was.  He was able to carry on a conversation with the nurse who came in and then shortly afterwards was getting his words mixed up, inter-changing beginning sounds of words and even making up words.  His language and attentiveness went in and out and up and down.

Elaine pointed out that Mark doesn't like to be touched, except by Rachel.  Rachel suggested warning him and asking permission to touch him when helping him get out of bed.  Lamont told me that he was rather concerned about Mark and hoped that he wouldn't leave the hospital when he was still so confused.  A little later Mark told Rachel that she had letters in her hair.  When she asked him what he meant, he pointed to the top of her head and said that there were letters there.  When Rachel asked him what the letters spelled Mark said Michelin.  When Lamont said "what did he say?"  Rachel responded that she had a tire company's name on her head.  The nurse was in the room during this time and asked if Mark had been hallucinating  before this.  Elaine said that Mark told her there was a man in the room the night before - when no one was there.  The nurse made note that Mark was hallucinating - I don't know if the staff and doctors knew that before.  Lamont asked the nurse if they would send Mark home when he was still like that and the nurse said no.

Elaine and Lamont left the room during half time and Rachel left to go to the bathroom.  Mark and I had a good conversation at first, but then he started mixing up and making up words and telling stories than weren't real.  He was in a good mood, just not quite himself.  Elaine and Lamont both told me that it is hard to see him like this.  Mark got up to the use the bathroom and then the physical therapist came in and had Mark walk down the hall for a bit.  Mark was doing okay, a little weak on the left side, but not bad.  Then both Rachel and Elaine saw a small difference in how he walked and that he didn't look at Rachel anymore.  When Mark got back into bed he was really flushed - which is what happens when he has a seizure - so they think that is what made the difference on the walk.

I was encouraged when the physical therapist was working with Mark and he was able to move both arms, both legs, both feet.....  After surgery he wasn't able to move both, so I was glad to see that he hadn't lost that ability.  Mark has some moments when he is doing great and other moments when he seems confused and dazed.  I haven't seen the non-responsive (except on the video), so hopefully they are getting the medicine to the right dosage to help and not make him sleep all the time.

I left the hospital after the game, bought pizza and went home to eat dinner with the kids.  Katie had a ward Halloween party tonight and took the 4 kids with her.  They had a BLAST (but don't ask Jason, when he got home he said it was boring!!!!).  While they were gone I emptied the dishwasher, filled it again, washed some dishes and then cleaned the playroom.  All in all a good evening all around.  Katie is now reading to the kids.

I don't know when Mark will be released from the hospital, but I thinking that I should stay at least until he comes home.  With Mark in the hospital, Rachel and his parents want to be with him and I would be helpful at home with the kids - especially if it goes into the coming week.  So we'll see how Mark progresses.  Right now I have a plane ticket to fly home on Monday night, but Lisa said that I would be able to see in their eyes if I needed to stay longer and that I should if I needed to :-).  Everyone at Meadow Park is telling me that family comes first, so I'm here at least as long as Mark is in the hospital.  Hopefully the clerk who has had the job for 3 days and the principal that subs for Lisa when she is gone can hold down the fort :-).

ER the Second

I'm way behind on updating everyone, and life has been overly tiring lately, so I'm going to cheat and use e-mails that my mom sent out to my immediate family during some of the recent drama.  I'm sorry for not getting this done sooner, but the few spare minutes I've had to myself I've spent keeping myself sane and not worrying about this here blog...  Hopefully life will calm down at some point and I'll be able to get back on top of things.  I'm not holding my breath though, so I recommend you don't either  :)

Thurs Oct 17th:


Hi All,

I got a text from Rachel at 12:47 that said, "And...We're back in the ER, but this time Dr. Rich told us to come.  Same type of episode.  I have a video of it! :-)"

I little while later when I asked how Mark was doing, she replied, "He's responsive again, we're waiting for the doc."

When I asked if she had called Dr. Rich when it happened and how it had lasted she said, "Called Dr. Rich from home.  I didn't want to bring him to the ER just to have him get better again.  He told me to come here (well, his nurse did).  The episode seemed to last somewhere between 1/2 hour to a full hour.  I'd have to check times on my phone to be sure.  I checked.  It was close to an hour."

At 3:25 I learned, "They're admitting him to get his fluids up and they're giving him steroids to try to see if they can get the brain swelling down.  We're expecting an overnight stay and if he's drinking normally in the morning they'll send him home."

The newest news:  "They're still working on admitting him.  He had another episode while the docs were here just a minute ago (glad they were here to see it!!!).  I think they were ordering another test on his way out to a room (still in the ER) so it could be a bit still."

On Tuesday night Dad and were talking and I said that I felt that I should go to Provo once a month and take a day or two off of work to make it a longer weekend and help Rachel out with anything that she needed.... kids, laundry, bathrooms, vacuuming, meals........  So yesterday I texted the 2 co-principals and asked for permission to miss work this Monday.  I planned to fly to UT on Friday evening and back home on Monday evening.  Then I got the texts from Rachel today and I'm glad that I already had plans in place.

I'll keep you posted with any other updates I get.

Update after Seizures

I'm way behind on updating everyone, and life has been overly tiring lately, so I'm going to cheat and use e-mails that my mom sent out to my immediate family during some of the recent drama.  I'm sorry for not getting this done sooner, but the few spare minutes I've had to myself I've spent keeping myself sane and not worrying about this here blog...  Hopefully life will calm down at some point and I'll be able to get back on top of things.  I'm not holding my breath though, so I recommend you don't either  :)

Wed Oct 16th:

Hi All,

I spoke with Rachel tonight to get an update about Mark.  Here it is:

Mark woke up at 8am when Rachel's alarm went off - and she wasn't in the room.  He came out of the bedroom, talked a bit and wanted to get some breakfast.  So Mark headed to the kitchen for some cereal and went to grab a bowl and plate, when Rachel asked him why he was getting a plate, he said that he really wanted a spoon - Rachel replied that they do look alike :-).

Mark ate some cereal and then rested in the egg chair.  He fell sleep again and slept until the kids came home from school [editors note: another alarm].  He woke up again and ate some more cereal.  Rachel commented that Mark is eating more than he has in a while and all they need to do it tell him it is breakfast time and get him to eat some cereal.  Mark slept most of the day and woke up this evening, and came out of the bedroom without an alarm going off, when I was talking with Rachel. [I was wrong, there was an alarm...]

Rachel said that Mark is reminding her of his post surgery phase, trying to make jokes, but they don't always make sense.  Mark left the light on in the van, which caused the battery to die, and he said that he didn't leave the light on - it was Katie.  Katie, that wasn't in the van, didn't have a key to it and couldn't possibly have done it.  Mark said that he had to blame the younger sister for something :-). [It was really funny talking with him that night!  We laughed together for an hour or so before he was tired and went back to bed]

Rachel is still wondering if what is going on is seizures or effects of radiation and brain swelling.  Rachel saw the scans last Tuesday and they showed major swelling and effects of the radiation - to the point that they did more scans, with different contrast, to make sure that it wasn't the tumor growing again.  The ER doctor said that most of the things that Mark was doing could be explained by seizures, but not all of them.  Rachel is hoping to have some tests run to find the cause of what is going on - seizures or swelling/radiation effects.  She wants to make sure of the cause and find the right way to treat it.  She is giving Mark the seizure medicine and will ask Dr. Rich about her questions on Monday during their appointment.

When LaMont was telling a family member what was going on with Mark this week he said that he had seen signs of it on Saturday while they were camping.  Mark's eyes had glazed over and he wasn't himself for a bit.  He also seems to lose time sometimes as well.

The ER

I'm way behind on updating everyone, and life has been overly tiring lately, so I'm going to cheat and use e-mails that my mom sent out to my immediate family during some of the recent drama.  I'm sorry for not getting this done sooner, but the few spare minutes I've had to myself I've spent keeping myself sane and not worrying about this here blog...  Hopefully life will calm down at some point and I'll be able to get back on top of things.  I'm not holding my breath though, so I recommend you don't either  :)

Tues Oct 15th:

Hi All,

I got a text from Rachel this afternoon letting me know that she was in the ER with Mark.  The ER doctors suspected that Mark was having seizures and were giving him meds through an IV, saying that Mark will need to take anti-seizure medicine for the foreseeable short-term future. [editors note: a year or so, depending on how he does]

I spoke with Rachel later in the afternoon and found out some of what happened during the day that led them to the ER.  Elaine reported to Rachel that on Sunday Mark was driving erratically to church, swerving between lanes and almost hitting parked cars.  Rachel had some errands to run today and was going to have Mark drive so she could see how he was doing and see if he could drive himself to work and other places.

When Rachel was ready to go, Mark said that he had bent down to pick something up and felt dizzy.  Rachel waited for 15 minutes or so and Mark then told her to go without him.  So Rachel ran to the post office while Elaine stayed home with the family.  While Rachel was gone Elaine asked Mark a question and Mark was not able to give a verbal answer and was drooling - he was awake, but fidgeting strangely and unresponsive.

Elaine called Rachel and Rachel told her to get Mark to the ER and she would meet them there.  Then Rachel realized that Elaine didn't have a car, the battery in the van was dead [again] because a light was left on overnight.  So Elaine called LaMont at work, who beat Rachel getting to the house.  LaMont and Elaine had a hard time getting Mark to the car, they had to give directions over and over again and then had to tell Mark which leg to lift and move so that he could walk, then had to help Mark get his legs into the car.

Rachel and Elaine left Emily and Annie with a neighbor, Shelly and Jason were at school, so they took Nikki and went to the hospital.  After Mark was given the meds and was discharged, he threw up on the way to the car.  When I spoke with Rachel tonight, Mark had been asleep since leaving the hospital and she expected him to sleep through the night as well.

They have an appointment to see Mark's oncologist on Monday and were given a name of a neurologist to see.  Rachel called to get an appointment and first available was Nov 26!!??!?!?  Hopefully the oncologist might know someone else or be able to pull some strings to get Mark seen sooner.

Elaine, earlier in the day, had asked Rachel if she would be okay if she didn't stay the night - Elaine has been living there since Nikki was born.  Needless to say Elaine is still there, bless her wonderful heart!!!!  I'm sure that she and LaMont were rather worried today when they saw Mark in that kind of condition.  Thank goodness for wonderful, loving families.

Please keep Rachel and Mark in your prayers.  There will be more tests and exams while trying to figure out exactly what is going on and what can be done to help Mark the best.

Oh, the news...

Lets start with the good stuff.

We had a baby!  Nicole (Nikki) was born on Oct 4th.  She was 7lb 9oz and 19 1/2 inches long.  She was cute! (but we're not biased at all...)  :)  When I get time I'll put up some pictures, but now is not that time...


Mark and I got to go on our various (and separate) vacations less than a week later!  Mark and the kids went with his family down to south eastern Utah on a camping trip.  His family goes down there almost every year during Fall Break, but the idea of going with a newborn did not seem overly fun for me.  Mark and the kids had a blast!  There was a huge storm the first night, and somehow the bedding in Mark & the kid's tent got all wet (it seems Mark forgot to make sure the bottom part of the door was all the way closed - he blames the kids though, so don't tell him he should have checked :) ), so the second night they went to a hotel while all the bedding went in a dryer.  Mark slept until he had to be woken up in time for check out - I think they wore him out!  There were several walks, a mile hike (at a leisurely pace) and much fun overall.  It was good for him to get all that physical activity!

I went down to CA to my mother's house for a Girls Baking Retreat with my cousins!  It was so much fun to visit and catch up with cousins I live just a few miles away from but somehow never manage to see!  We had good food, good laughs, good talks, and all around good times!  I'm looking forward to doing it again next year!


Now for the less than good stuff.

I got back on Monday morning in time to go with Mark to his doctor's appointment.  The first thing I noticed after not seeing Mark for a few days was his crooked smile and his weak hug.  It was 6 in the morning though, so I chalked it up to his being tired and awake for no good reason that early in the morning.

On the way to his appointment, I noticed that he was limping more than he had been before.  I assumed it was because he had been more active physically over the weekend than he had been in months...  I mentioned it to the doctor and he told me to keep an eye on it and let him know if anything changed over the next week.  His blood counts were too low to do chemo this week, he got to take a week off of chemo.  The plan was to check his blood counts again next week and see if the numbers were up enough then to start the next round.

On Tuesday I heard that Mark had been driving erratically to church on Sunday, so I decided to take him on a test drive just to see where he was at, and if he was safe enough to get himself to an activity he was planning on going to alone later that day.  As we were getting ready to head out the door, Mark sat on the couch saying he was dizzy.  After waiting for a few minutes for him to get better, he sent me off to go run errands by myself.  I left him home with his mom (who has been staying with us since the baby was born) and the kids, and ran to the post office and the library.

I got a call while I was in line at the post office: "Hurry home, Mark can't talk."

I'll put the rest in another post.  I'm too tired to think/type straight right now...

We're having a baby!

Wow, it was really weird to write those words...  This baby has not sunk in yet.  End of pregnancy, certainly.  New baby, not so much.

We have plans to be induced tomorrow.  There's also supposed to be a storm coming in tonight, which often causes labor to begin (for other women, not me) so there's a chance I'll be bumped till later.

I keep telling myself that.  I find that if I adjust these kinds of expectations I have much less disappointment in life.  This way, I can be super excited if they call me in first thing in the morning (well, not that excited, I would love to sleep in a bit).  And if they don't call me in until later, then it's not really any different than I was expecting, so life is still good.

I have had less weak spells these last few weeks than I did earlier in the pregnancy.  It's been a bit weird.  I have felt worse over all, but it's been a steady feeling and not the up and down that the weak spells give me, so that's a plus!

Mark and I finally decided that we should get ready for the baby to come...  We've done a few small things here and there.  We bought diapers a few weeks ago.  Over the weekend we pulled out the bassinet.  Mark's mom has been here all week helping clean the house (it's fallen apart the last few weeks as I have been in survival mode - cleanliness is only necessary to survival up to a point, and anything more quickly becomes a luxury), doing laundry, feeding the kids, and getting the baby clothes/blankets/bedding/etc out and washed and organized.

I spent this week pretending to help, and not being very helpful.  I would get asked a question, and it would take so long for me to even process what the question was that by the time I realized I might actually be able to come up with an answer, they had given up on me and gone off to do whatever they felt was best.  It was just as well.  My answer probably wouldn't have made much sense anyway.

We finally packed a bag this morning.  I managed to pull a bag out of the closet, grab 2 things (computer power cord and a shirt) and reach for a third before I couldn't do anymore and had to sit down.  It was more than a little bit pathetic...  But it is making me excited to almost be done with this part!

Just a few more hours....  Get me to the hospital on time!  :)

If this is what strength is for...

I was watching Nicholas Nickleby the other day.  It popped up on Netflix's recommended watching list after I finished Great Expectations.  (I do not pay for Netflix - it's not in the budget.  My mom bought an account that lets 4 people stream it, and she let me be one of them - I mostly ignored it until recently when I finished the book series I was reading, and didn't have the brain power to find something else useful to do with my limited energy - so far I've watched Scarlet Pimpernel, Great Expectations and Nicholas Nickleby.  There's a theme there, I'm sure...)  I had never heard of Nicholas Nickleby before, but according to Mark it's a novel also by Charles Dickens.  I guess I could look that up, but I've sort-of learned to take his knowledge of trivia like that for granted.  He has always been right in the past...

I just looked it up and discovered two things.  One, Mark was right.  Two, I spelled it wrong, so I fixed it.

One of the lines in that movie has been stuck with me for a few days now.  'If this is what strength is for, I don't want to be strong.' (or something very much like that)

Background:

I found a support group for caretakers of people with cancer.  A few months ago I was having a particularly hard time and went to a once a month meeting for a Women's Cancer Survivor support group in Provo on a whim.  I realize that I don't actually fit in with that group - since I'm not the one with cancer (although I feel closer than most spouses of cancer patients because it was in his brain and greatly affected his mental abilities, and for a long time I was carrying more of the burden of his cancer than he was), but they welcomed me anyway.

The first meeting was all about dealing with stress while your body was trying to heal from cancer.  Not overly applicable to me, but who can't use a refresher on how to deal with stress?  The social worker there offered me a flyer of other support group options if I chose to take them, and apparently I was so far gone emotionally that she also pointed me to a mental health office nearby that I could take advantage of.  Did I mention that it had been a hard week?  I broke down just talking about my favorite part of summer...  It was embarrassing.  :) (to be fair, it had not been my best summer ever).  Normally, I consider myself doing rather well, all things considered - but that particular evening was not one of those 'doing rather well' moments.

Anyways...

On the flyer of other options was one for caregivers of cancer patients, but it was far away, and on the same night and time as Mark class, so I didn't really consider it an option.  Then came another hard few days, and I looked into it a bit more closely.  It turned out that the meeting location was almost literally across the street from where Mark went to school, and at almost the same time, and this one met every week.  I could carpool with Mark, he could go to class and I could go to this new group!  I figured it was worth one trip up just to see what it was like.

I've been going ever since.

The two groups are rather different.  The once a month one in Provo is more like a fireside.  We get to introduce ourselves and then they have a presentation of some sort with refreshments and mingling afterwards.  I have gone to both of those that have come up so far.  The next one - this week - is about nutrition and eating well with cancer.  I'm not sure that's relevant to me, so I'll probably skip it.

The one up in Murray is more like group therapy.  There is no set subject, and every one just talks the whole time - not at the same time, that would be chaotic - but there's a lot of back and forth and chatting about life and challenges and good things and hard things.  The social worker just monitors the discussion and throws in a few words or questions here and there, basically keeps things moving and makes sure we stay on topic.

I find both types to be good.  There is something nice about being able to just sit without the pressure of having to keep it together while talking about yourself and your challenges, but it's also nice to be able to talk about those challenges and see other people's struggles and realize that even though it seems as if there is no one else dealing with anything like this, there are other people who have been there and are there right now, or who were there a while ago and are now nearing the final stages of this particular struggle with their loved one.  For me, there's also something about just talking about issues that makes them no longer consume so much of my attention and energy (writing also helps me with that - which is partly why most of my blog posts are sssoooo long)

So, after that super long lead up to the point (I'm a female, what can I say :) )...

Last week there were three of us in the room, and the two other people there commented on how strong I was (personally, I didn't really believe them at the time, and still don't really.  I'm not convinced that anyone else in my shoes would do any differently).  But it did make that line from Nicholas Nickleby stand out.

If this is what strength is for, I don't want to be strong.

Round 2 of Maintenance Chemo

Mark is on his second round of 5 days on chemo three weeks off (technically 23 days, since there's an extra weekend in there, but that's so annoying to say and it takes to long for my brain to figure out how long 23 days is, so I say 3 weeks).

The first round left Mark rather sick and nauseous most of the time.  I would love to say that it wore off after he stopped taking chemo, but he still wasn't eating (remnants from the thrush that turned into a gag reflex once the thrush was gone), and I'm pretty sure he got either dehydrated sick or one of those nasty empty stomach sick feelings, and was nauseous from that.  After all of that drama it was well over a month of Mark not really eating (a glass of milk or a yogurt here and there, a smoothie a few times a week, probably averaging about 500 calories a day) before he was finally convinced that it was worth trying to get past the gag reflex and try to start eating again so the rest of us didn't have to worry about him.  He was awesome and worked at overcoming his lack of desire to eat for my sake! :)

His stomach shrunk quite a bit in that month of not really eating.  He can now eat solid food most of the time, but he eats less than a normal grown male would before getting full.  An ear of corn and half a small red potato will fill him up.  And he seems to only really need to do about that much once or twice a day to be satisfied.

Round 2 of chemo started this week.  He took his first pills on Monday night, was sick all day on Tuesday, did really well on Wednesday and is somewhere in between so far today (Thursday).  He gets to take his last pills for this round tomorrow night.  Hopefully he'll start feeling better next week.

-----------------

Random other news:

Mark came in the bedroom a week or so ago.  I have not been feeling or sleeping well with the pregnancy (surprise!) and Mark has been getting up with the kids to get them out the door so I can rest in bed a bit longer.  So, Mark came in and informed me that he's worried that Annie (our 2 year old) is going to develop a drug habit.  

Now, I was a little tired and mostly out of it, so I was not sure I heard him right...  'A what?!'  

'A drug habit.' 

'What gives you that idea?'

'Well, I asked her what she wanted for breakfast and she asked for a bowl of opium squares.'

Apparently she had originally asked for Lucky Charms, but she just eats the marshmallows and wastes the rest, so Mark wouldn't let her have that.  He offered her some Oatmeal Squares and she gladly accepted by asking, in her cute mispronouncing way, for 'Opium Squares'.

[Mark was teasing, btw - just in case some of you out there thought the brain surgery had actually messed him up that bad.  Well, to be fair, it did at first, but he's much better now]

-------------------

Shelly and Jason started school.  They were both super excited.  I'm mostly excited to have Jason's teacher stop calling me with problems he's having (I appreciate the phone calls, I'm just excited for him to settle down and stop having so many problems).  Shelly is settling right in and doing well.  Jason is also getting into the routine of daily homework at home and even seems to like doing most of it.  He just seems to have a problem or two at school that needs to be worked out.

Emily is a cutie of a 4 year old.  She's my girly girl, and I have no idea what to do with a girly girl.  She loves doing her own hair (put a headband in it - often missing about 1/3 of what's supposed to go back, or having a chunk sticking straight out the front) and we often find her with random bows and flowers sticking out of her hair at wild and crazy angles.  She's not exactly good at doing her hair, but she loves to try.

Emily has also taken to bossing Annie around, now that Emily is the oldest one at home most of the day.  It's often funny to watch, but I'm trying to correct the behavior - not the best trend to get into.  I'm just too tired most of the time to be able to much about it.  Hopefully in another month or so life will settle down a bit and I can find all (or even any) of the energy I seem to be lacking at the moment.

Annie is a chatter box and is in the super cute early 2 year old phase.  She has some super strong opinions she is determined to stick to (at least for a minute or two until we can distract her), but she loves to have people laugh with her, so she tries to show off as often as she can.

I had my 36 week check up yesterday (and I'll be 37 weeks tomorrow).  The doc was going to set up an induction for me on the 4th - one week early, my first early induction ever - so I can make it to a Cousin Baking Retreat planned for the 12th (in my mother's house - scheduled for the day after my due date - either no one had any idea when I was due, or someone was being rude and trying to not invite me! Turns out the joke is on them, I'm coming anyway :) )

It's been a busy few weeks on the farm.  Mark and the kids and I have spent much of the last few weeks over at his mom's house helping get all the garden produce harvested and stored away for the upcoming year.  Sadly, neither one of us is as helpful as we usually are...  Mark has had to take over my job cooking corn, cutting tomatoes, running stuff through the juicer, etc. several times, and we usually show up after all the picking has been done (part of that is the kids late start with school, but not all of it - it takes a long time to get us out the door these days).  I'm just grateful for such an awesome mother in law!  If nothing else, I enjoy sitting in her kitchen and chatting about everything and nothing all at the same time.

I'm sure there's more, but my brain stopped working a few weeks ago.  It's amazing I'm even able to form complete sentences at the moment - that's not always the case these days.  :)

Picking up Shelly and Jason from Camp

Last week was the first camp that either Shelly or Jason have been to.  I was never really worried about Shelly.  She is incredibly adaptable and goes along with almost anything and she loves to do the type of things that go on at camp.  Jason, however, is not that type.  He gave me cause to worry about how he would handle camp.  He's been away from home before, I wasn't too worried about that.  His adventures would come in other forms.

So, it's no surprise that I was a little bit nervous to hear from the counselors how he handled camp.  Once we were parked and heading in (with the two little ones in tow), word got out that we were Chomper's family and there was rather a bit of a reaction.  This was not reassuring.  We had told one of the counselors (Nike) that we were looking for Pillow and Chomper, but somehow Chomper's name was the one that she mentioned to others - I was unsure if this was a good sign or a bad sign...

We headed into the mess hall to meet the kids and Shelly ran up and grabbed Mark to give him a hug.  She spent most of the rest of the time showing us the stuff she made and playing with Emily and Annie.  Jason was going through his camp stuff at the table when we came in and didn't see us immediately.  Once he saw us he excitedly told us all about how much fun he had, the things he got to do and the people he met - at least I think that's what he was telling us.  He was talking so fast (and there was a lot of other noise in the room) that it was hard to understand everything he was saying...

Their unit counselor, Bubbles, was nearby, so once I got a break I asked her how the kids did (but I must confess to mostly being curious about Jason - I didn't think Shelly's experience was really in question).

Her response - about Jason: "He was definitely the most rewarding camper."  I was pretty sure this was code for challenging.  Great reward really only comes with great effort after all...

So, Shelly had changed her name just a few minutes after we left.  She went from Pillow to Butterfly (which would explain why only Chomper's name was memorable to Nike when she announcing our arrival - that was reassuring).  Jason also changed his name, but he changed his mid-week.  Apparently, when a camper or counselor calls someone the wrong name, they have to kiss a tree.  Jason somehow figured out a way to take advantage of this and decided that it would be fun to make everyone kiss trees, so in an effort to confuse people and trick them into calling him the wrong name, he changed his name from Chomper to Zombie ... on Wednesday ... and then proceeded to have a great day making everyone kiss a tree...

So, we left a Pillow and a Chomper at camp and came back with a Butterfly and a Zombie...

Shelly did all of the crafts and had a large collection of stuff to show us when we got there.  It was fun to watch her show off all of the stuff she made.

Jason only did some of the crafts - but to tell you the truth, I'm impressed they got him to do any at all (one or two of the more 'special' ones someone else did for him, just so he would have one to bring home).  He was awesome at the running around games; tag, capture the flag, the treasure hunt, and things like that.  He refused to go swimming and spent swim time playing in the nearby playground instead.  He also won a huge jar of jelly beans at the carnival.  He guessed how many were in the jar (he guessed 1,000) and won!

Showers were also not his thing.  (He's still doing baths at home - it's easier to throw him in with the younger girls still - that was our fault)  He told Bubbles that he was excited to come back next year, but only if he didn't have to take a shower.  Bubbles laughed good and hard about that comment!

Turns out his cabin counselor's name was not Master Po.  His name was Mumble.  I got the face right but the name mixed up.  Mumble was good with Jason too.  Both he and Bubbles were so excited with Jason on the last night there.  They had finally convinced Jason to participate and he got up on stage during the talent program!  They were both way excited by that accomplishment.  Turns out Jason was the youngest camper there, which I'm sure added a bit of drama to the personality that is Jason...  :)

One of the things Jason told me right at the beginning, while he was still talking in his 'excited about camp' voice, was that he now has a Dream Castle.  It's supposed to hold all of the nightmares so they can't get out (at least, I think that's how it went, it was loud and he was talking quickly and his speech issues are at their worst in those situations - and I was distracted).  I meant to ask him where he got that from, but I completely forgot until right now, and Mark is getting them dinner while I type, so it will have to wait until later.

Shelly had fun on the way home telling us everything they did at camp.  She sang some songs for us, told us about an empowerment circle they did (they all took turns talking and then they got a balloon they could write their worries and fears on and then let the balloons go), she told us how much fun swimming was and that the pool there was only 5 feet deep and she jumped in and touched the bottom of the pool (with her feet) before swimming to the ladder.  Somewhere in there she asked if she could stop talking, so we let her take a break.

I believe that's about everything I know about how camp went...

And now you know too (if you actually read that whole thing...)


UPDATE:  So, while I was putting the kidlets to bed, Jason mentioned his Dream Castle again.  Just as I was about to ask him about it, he showed it to me.  It was a dream catcher... (from native american culture - tell me you know what I'm talking about...)  Turns out it was a hearing problem on my part and not a nightmare problem on his part requiring therapeutic intervention.  That's good news! :)

Thanksgiving Point

I recently found out that there are $2 Tuesdays in August at Thanksgiving Point.  I had no idea.  But since I found this out on Monday night, I actually still remembered the next morning and thought it would be fun to go and take the kids, well at least the two that are left here (Shelly and Jason are at camp).

It was an adventure.  We started off by waiting in a rather long line just to get in to the park.  Emily had cut her toe the day before and shoes hurt her foot.  In typical 4 year old fashion, she had refused to wear flip flops that would not put pressure on her toe, so she got to sit in the stroller with one shoe off.

Once we got in, we got to see a couple of cows and horses, and then the kids saw the pony ride.  Emily decided she could wear the flip flops we brought for her, and then refused to go anywhere except in line for the pony ride.  So we waited in a long line again...  We were finally the next ones in line and Emily announces she needs to use the restroom.  I convinced her to wait until after our turn.  Annie was super excited to go on the pony ride, and then refused to get on the pony.  She would pet it, and eventually held onto the saddle for the last 10 feet.  That's about it.

Then Emily took 15 minutes in the bathroom, we saw a few goats (Annie was really funny when a goat would stick it's nose through the fence - she would pet it super quickly and then laugh and say 'I tickled it!'), we saw some sheep and chickens and decided there wasn't much else to see, it was hot and we had been there for over 2 hours and done not a whole lot with not much else to do, and it was time to go get something to eat and cold to drink, so we left.

Turns out we should have planned that better.  On our way out we noticed that the line to get in was basically non-existent, and since it was after lunch by that time, we would not have been quite as hungry.  Next time we'll know better...

Camp Kesem

A couple of months ago my awesome aunt sent me some info about a camp that I had never heard of before.  It's a camp for kids who have/had parents with cancer.  It's a fun opportunity for the kids to have a great time in the company of other kids who have something in common with them.  Camp Kesem is a nation wide thing, and it's basically run by volunteer college students.  The one for BYU was long since full by the time we heard about it, but SUU was still looking for campers (and SUU's camp was going to be closer to our house than their campus, so distance wasn't an issue).  After looking into it a bit (I didn't want this to give the kids issues they didn't have before going there...) and chatting with my aunt a few times about her thoughts and what she had heard and knew about it, we decided to sign the kids up!  The kids have to be at least 6 years old, so only Shelly and Jason were able to go.  Emily has had a bit of hard time with that...

Jason and Shelly have been anxiously looking forward to it all summer.  I usually don't tell the kids about things too far in advance of big events - I dislike the ups and downs and drama that is kids waiting on pins and needles.  This time though, I was worried about Jason and whether he would actually want to go to a camp, so I asked the kids before I even signed them up.  This summer has been rather full of questions about when it is, where it is, how they're getting there, what stuff they will do there...

The day finally came!  On Sunday we drove up to the camp to drop them off.  Poor Shelly got carsick about 5 miles from camp, but even still, she was excited to go.  Jason was also excited, until we got out to go register them.  Apparently everyone there picks a camp name, any name they want.  The people at registration were Chocolate Fury, Master Po, Bubbles, Starburst, Nala, Mufasa, Pumba, M&M - names like that.  The idea is that they can be whoever they want to be at camp.  None of the paperwork they sent me said anything about that, so I didn't know to warn them about it and give them time to come up with a name.  This did not phase Shelly.  She came up with a name in under a minute.  She chose 'Pillow' to be her camp name.  Jason had a harder time coming up with a name.  Eventually we decided to do a tour of the camp, pick a bed and come back to name picking later.  He spent the next most of an hour telling me he wanted to go home.  The councilors there were very good with him.  His cabin councilor was Master Po, and was super patient with him when he refused to pick a bed (we finally just picked one for him and moved on - I did tell him that once we were done checking in Shelly, if he still didn't want to stay I wouldn't make him).  We then went to hang out on the grass with the kids' unit councilor Bubbles (I have no idea what her actual name is) - Shelly and Jason are in the same activities unit.  She was also awesome with him, we played a game and then Bubbles took her kids that were already there (Pillow, Ells, and Pillow's un-named little brother) to the mess hall to see M&M and get a snack.  While there Bubbles managed to soften Jason up a bit, ask some questions of the kids and we finally got Jason to the point where he came up with a name that he liked.  He chose Chomper (the baby t-rex from the Land Before Time series).

Once Jason had a name he was back to his happy self again, and more than willing to stay at camp.  We got him a name tag, kissed the kids goodbye and drove away, confident that the kids were in good hands.

We pick them up on Friday.  I confess I'm a little bit curious how Jason will handle camp.  He has a bit of a stubborn personality (as I'm sure anyone who's interacted with him for more than 5 minutes has noticed) and is rather strong willed.  I think I read somewhere that they will have stuff set up for the kids to show off what they did during camp at pick-up time.  I can already picture Shelly's spot full of fun crafts and adventures, and Jason' spot completely empty - with maybe a picture that someone else colored in for him with his name on it...  He is not a craft person.  I just hope he manages to have fun at least some of the time, and not ruin camp for some poor counselor who gets to sit with him when he's grumpy.  I guess we'll find out on Friday...