Jason...

It's been a long time, but I really liked being able to update people using this forum, so here it goes. This will be a long one. Sorry! Skip to the end where the pictures start if you just want the bottom line.

Jason is 9, turning 10 in May. He started limping last July (about 8 months ago) and the limp lasted for a couple of weeks and then went away so we didn't worry too much about it. In October we went on a camping trip and noticed the same limp had shown up again. I was going to ignore it again, since that had worked so well last time, but peer pressure as well as Jason asking to be taken in convinced me to just take him to the doctor and deal with being told it was no big deal and that an appointment really wasn't necessary...

He was complaining of pain in his knee and pointed right to the spot just below his knee cap as the source of the pain. The doctor told us that it was likely related to puberty even though he was only 9 (she said at the time that he was a bit young for this to show up) and it was likely caused by the muscle in the leg growing more quickly than the ability of the connection to his bone to keep up, but that it would go away with time and it shouldn't be a big deal. She told me to keep an eye on it and bring him back in if I was concerned.

I kept an eye on it. Every time I noticed a significant limp I would ask him where it hurt and he would always point to that same spot on his knee, so I just went with it and assumed he would out grow it.

Side note: I got re-married (eloped, because we could) in Dec 2015 to Casey - amazing guy!!

In late January Casey happened to be driving by while Jason was walking home from school and Casey watched Jason walking and decided that we needed to get him back to the doctor to have that limp looked at again. Jason really did have a super strange walk - at least when he wasn't thinking about how he was walking.

I scheduled an appointment for that Friday, a couple of days later, but on the day of his appointment I was violently ill with a stomach bug so Casey took him to the appointment for me. The doctor re-evaluated him and realized that the problem was not with his knee, as we had thought earlier and as he had been complaining of for months, but was actually with his hip.

They took x-rays and called me back later that night to tell me that he needed to see a specialist. She gave me a couple of different names/terms for what he had but the one that stuck was 'A -- necrosis of the femoral head'. (I didn't understand what the other terms were, so I didn't remember them. I looked it up later though and it was Avascular necrosis of the femoral head, or AVN for short). I knew that necrosis was cellular death and was rarely a good thing... We chatted for a while afterwards and she said that she would be calling the specialist first thing on Monday and to expect a phone call from them to set up an appointment soon. In the meantime they wanted him to avoid walking much and no running, jumping or other major physical activity. They prescribed him some crutches and told him to use them as often as he could.

I got a phone call on Monday telling me that the pediatric orthopedic surgeon had looked at the x-rays and wanted an MRI. There were a few things lower down on his leg that we hasn't sure about and thought the MRI would tell him more. So we got a referral for an MRI. I spent the better part of the next 2 hours on the phone. People calling me to schedule the MRI (the next morning at 7:30), then with the hospital to pre-register him, then with instructions about where to go, then from the nurse with details about what to eat/not eat what to wear where to actually go (since the previous info was for a patient who wasn't going to be sedated). It was a crazy day.

The next morning we went off to the hospital to have the poor kid sedated so he could have clear images on an MRI. They offered to just have him watch a movie and sit super still or to give him a more mild form of sedation, but that kid hates sitting still and I figured good images were more important than him being sedation free, so we drugged him and put him to sleep. It took the nurses several tries in three different spots to get an IV to stick, but Jason was a trooper and the staff was great.

We got a call the next day from the pediatrician saying that they had looked at the MRI and had tried to call the specialist, but he was in surgery so they would try again later in the week and I should hear back by Friday or Monday at the latest.

On Monday I gave up waiting and called again. We got an appointment for almost a month later to see the specialist and were told to keep up with using the crutches until then.

Well, I finally got to chat with the specialist on Friday and here's the news.

Jason’s right hip joint is not good. It’s slightly out of place and the top of the femur is no longer a normal ball-type shape (it looks more like a pancake). The doctor said Jason has Perthes disease. There’s not a well known cause for this.

These are both Jason's hips. Sorry about the weird angles. They came up on the screen at his office at a weird angle and I didn't think to adjust when taking the pictures. The x-ray on the right is his left hip. His good hip. The x-ray on the left is his right hip (backwards, I know, but they look slightly more like a human in my head if they are way, weird angles and all. Sorry for the confusion!!). If you can see where the femur connects into the hip socket on the right image, you can see a very pretty ball shaped - muffin top - type of bone. This is good. His right hip (left image) joint is not as pretty. The top of the femur is flattened and the bone looks lighter at the top. That is dense bone that is dying and/or already dead and collapsing on itself as it's flattened by normal daily activity. There are also some dark spots that are cysts forming on the bone.

 These are the same hips just at a different angle. His good hip (the picture on the right) still has the ball shape and fits snugly inside the hip joint. His bad hip (the picture on the left, which is actually his right hip) has a distinctly flattened shape and looks like it's coming out of the socket a little bit. There is inflammation inside the hip joint that is pushing the femur out a bit.

The good news is that the dead bone will regrow. That's what bones do. :) The problem is that if the hip stays in the same position that it is now the bone will regrow with a saddle shape to it because the joint is not quite in the right place. Also, because he's on the slightly older range for this 'disease' the bone won't regrow as well as it would have if this had happened before he was 5 or 6. He simply has less growing to do before he's done growing so less time for the bone to get back to normal before it's set.

The doctor did an examination of Jason and tested his flexibility and range of motion. His left leg can extend to the side to about a 60 degree angle without much problem. His right leg goes out about 10 degrees before pain and compensating hip movement start to present. This is caused in part by a tightening in his inner thigh muscle and that is causing loss of range of motion as well as helping to keep the femur out of place. 

Bottom line: Jason needs surgery. The doctor recommends a 'releasing' of the inner thigh muscle (cutting it in a strategic manner) and then keeping him in a cast for 6 weeks so his muscles can heal the way they want them to (meaning longer and with more give in them). The cast will be the kind that keeps his legs separated each leg 45 degree from center (so 90 degrees total). 

This is the picture of the case on the paperwork he gave me

And after that 6 week period will be physical therapy to try to get, and keep, his femur back into the hip joint the way it should be. There will be several x-rays along the way to see how well his bone is regrowing, but it will be long process - think years, not weeks/months. 

He will need to do physical therapy and avoid jumping/running/climbing type activities until he is ‘out of the woods’ (meaning the bone is regrown and firm enough to withstand the activity). I coerced the doc into a time line and he said it could take a year .. a year and a half .. two years of physical therapy. (Although much of what I've found online suggest something closer to 2-5 years) But after he’s ‘out of the woods’ he should have mostly full use of his hip, although he said it will never be normal. Among other problems, it could cause pain and arthritis and it will almost certainly wear out sooner than other people’s hips will and he will likely need a hip replacement maybe in his 40s or so. So, bad short to mid term news, pretty decent longish term prognosis, unfortunate hip issues much later in life (when my part will be more minimal  😊)

Happy Birthday Mark!

Today is Mark's birthday.  He would have been 33 today.  We decided to have a fun day today to celebrate his life, even though as Annie put it 'He's dead!'

We started out the day by going to the store to get some milk (we've been out for a few days now) and while we were there we got some 'Daddy presents' - meaning I told the kids they each had $5 to spend on a toy they wanted because it was daddy's birthday.  Turns out $5 didn't buy very many of the toys there.  Maybe I'll have to plan better and up that amount next time just to cut down on the amount of cheap, easily breakable toys in the house...

We also bought some donuts, a box of crackers that always reminds me of Mark, and a cake to make for a party later that night.  Then, after dropping off our much needed milk at the house, we headed to the cemetery to eat our donuts and crackers.

The kids had a lot of fun playing at the cemetery.

Annie and Emily chasing balls (they were the Daddy present that Annie picked out), and Jason eating Chicken in a Biscuit crackers

He asked me to take that one, and then went into great detail telling me that the cracker in his mouth was not his tongue...

Shelly learned a new way to drink water without taking the lid all the way off

The girls running around

Even Nikki got to play

There's Mark (still sans headstone).  He's the patch of grass you can almost see outlined right behind Webb, with one of the red flip flops (accidentally) marking the top right corner

Here's our car, with kids inside munching on donuts and crackers

The cake mix the kids picked out was Tie Dye.  Grandma was quite the sport and helped the kids make it.

Two 8 inch layers

All together with blue frosting in the middle, and green part of the way around the edge

Then purple on part of the top and pink to finish off the top and the rest of the edge

It was one interesting cake! 

(and several dirty kids!)

We had dinner outside, and throughly enjoyed it until the rain and wind finally chased us back inside, there we sang Happy Birthday and had the kids blow out the candles on the cake.

Overall it was a good day!  After I got home I found some flowers on my doorstep that had been delivered while I was gone.  I was quite touched that someone had remembered and sent us flowers, only to discover it was a total fluke of timing!  It was from my sister-in-law's brother and his wife and, from the card, I doubt they had any clue that it was Mark's birthday (although if they did, I'm even more impressed!)

I've had quite a few things like that happen recently.  I got a card just the other day that happened to come on an otherwise hard day (in fact, that has happened quite a few times - I'll get something unexpected in the mail, which always makes my day, but somehow the timing always seems inspired).  I have some amazing neighbors and church friends, my family has been super good to me I'm still seeing many tender mercies of the Lord in our lives.  

Also, we have been so busy this summer!  We've hardly been home at all, which has helped keep us distracted.

Overall today was a good day!  We missed you Mark, but we're doing our best to have fun and be happy, so you're not too sad that you had to leave us.

Fun Weekend!

We had several fun adventures over the last weekend.  Most of us went down to Cedar City to help my aunt in her class (the kids are often her helpers with her pediatrics lab - they are weighed and measured by her students).  Shelly opted to stay up here and go to school.  Grandma and Grandpa kept her and made sure she got to school.  They also had lots of fun plans and activities to do with her while they had just one for the whole weekend!  From all accounts it appears they had quite a bit of fun.

Jason did not pass up the chance to miss school and came with us.  He got to see a few of his Camp Kesem councilors.  One of them (Mufasa) was a student who came to do the measuring lab.  He then asked if he could tell others they could come say hi.  Mumble and Chewy ended up stopping by and stayed for quite a while.  The kids had a blast playing with them!  Mumble got Nikki to sleep (amazing!) and still managed to play with the other kids - while holding a sleeping baby, and Chewy was a living jungle gym.  It was quite touching to see how much the councilors cared about the kids.  I grow more and more impressed with Camp Kesem every time I interact with them!  Jason has decided that Mumble is his favorite, with Bubbles a close second (I saw her briefly at a fundraising dinner they happened to have that same weekend - that was more touching than I had anticipated, seeing all the people there who truly cared about kids of cancer patients.  It hit closer to home than I was quite ready for and I got in some great practice at self control!).  Jason is really looking forward to camp this summer.  He even asked if we were going straight there on our way home.  Sorry Jason, you'll just have to wait...

Emily and Annie had fun while we were down there too.  They got to play with Rae at Aunt Grandma's house!  Not sure Rae (7 months old) quite appreciated it as much as they did, but they had fun.  I tried taking them all to an awesome park down there that my sister had introduced me to a few years ago, but both times within just a few minutes of showing up it started to rain.  Wishful thinking did not fix the weather.  Maybe next time!  :)

The biggest news though!  Nikki learned how to sit!  She's not able to get there by herself (or even roll over yet), but if you set her down sitting up, she'll stay for a good long time!  The first day of the measuring lab she could sit for a few minutes - especially if someone was close by to catch her when she bobbled.  By the end of the weekend, we could leave her alone on the floor and she could stay up all by herself!  At least until some child (usually Annie) came over to 'hug' her and knocked her over instead.  Nikki's growing up!

I'm can't decide if I'm excited or sad about that...  She's likely to be my last one (at least for the foreseeable future - I can hope for more, but I'm afraid it's not up to me at the moment...) and while I love the idea of the kids growing up (especially since I'm not the biggest newborn person) this is still a fun time that I'm a little sad to see coming (and going) so quickly.  Guess I'll just have to enjoy it while I can!  :)

The New Normal... (and more of a glimpse into my thoughts than you might want to know)

I wrote all this two weeks ago, but got interrupted before I could post it.  Then life got busy, and I either forgot or didn't have time to reread the whole thing for typos.  I found the time this morning!  Yea me!! :)


Life has finally calmed down a bit.  At least as much as can be expected.  All the extra people staying here have left and it's just us again.  I haven't had to run a house or be the only caretaker of the kids in so long, it's a bit of an adjustment.  Although, at the same time, the last time I was on my own with just the family I also had to deal with the new Mark, and he was a handful.  In a way this is much easier.  Less doctors/therapy appointments, less drama with meds, less worrying about how/what Mark was doing if he wasn't nearby, less feeling bad that I wan't doing very well with keeping him working on his therapy.  More time at home, more energy to devote to the kids, more consistency.

For all the extra drama that Mark's tumor caused, he was still helpful in his own way.  He still took out the trash (if I reminded him), he still cooked quite a bit (although the end result was going downhill towards the end), he was still willing to listen to me when I needed to talk (although his ability to respond intelligently was becoming less frequent - and I needed more patience to wait for the response), he still cared about how the kids were doing (although I often had to point out both the good and the bad about what was going on in their lives), he was willing to help unload groceries from the car (even if it took him a rather long time).  It will be more of an adjustment to get used to doing those things on my own (mostly the trash part - I haven't taken out the trash in years!) :)

I will always be grateful for those last few months I had with him.  Mark had been given blessings that gave us hope.  It was that hope that allowed me to enjoy him despite the fact that the man I married never made it out of the operating room (and in fact had been disappearing for some months previous to the surgery - although I didn't recognize at the time that that was the problem).  Even a week after surgery, while recalling one particular blessing, I said then that even if none of the specifics came to pass, the blessing has already been fulfilled.  I was able to face the cancer with calmness and rather than worry about what might/might not happen in the future, I was able to enjoy the present.  I was able to let go of things that I had no control over anyway - the cancer - and control the only thing I really had any control over in the first place - my attitude.  Before the blessing I had been worried and stressed and unable to see straight through the devastation.  After the blessing I was able to put much of my worry into the Lord's hands and let him take over my life.

I've always heard of people doing that but, to tell you the truth, it never made sense to me (in fact it wasn't until I typed that out right now that I actually made the connection).  Being married to Mark helped me understand that.  There were parts of life that were just stressful to me to be in charge of.  Mark allowed me to hand those things over to him.  That didn't mean I stopped working on it, but Mark was willing to be responsible, which meant I didn't have to be, and that made a huge difference to my ability to enjoy those stressful tasks - and oddly enough, my ability to do them.  I was able to do much the same thing with the Lord and Mark's cancer.  I put the Lord in charge and that left me able to do my part without being responsible for the outcome.

When I was trying to take responsibility for the tumor, life was stressful - especially since there is really nothing that I could have done about it.  Once I let the Lord be responsible for that part, while still doing all I could, I was able to spend my time with Mark enjoying the new Mark, rather than spending time researching all of the things I should be doing to help him.  I did what the doctors recommended, and brought up concerns and asked a million questions, but at the end of the day, I was able to just follow the doctors' advice and enjoy life.  I have no idea if we could have done anything differently to save Mark, and honestly I don't want to know.  I have no regrets.  I made the best of a shitty crappy situation and that's all that really matters to me.  It's possible that there exists something out there that might have kept him around a bit longer, but if it would have cost me my ability to enjoy these last few months, then it would not have been worth it (and Mark would have agreed - in fact at one point I asked him if he wanted me to look into other treatment options, but it might involve moving to another state.  He said no.  The kids needed stability.  I even laid it out plain and simple (his brain worked better in plain and simple at that point).  He was choosing to stay in UT and die, rather than move out of state and maybe live.  His response: 'Yes. I am choosing to stay in UT and die').  I am glad we spent our time enjoying each other.  In the end our focus was quality of life, not quantity, and for us, that was the right choice.

I am grateful for the opportunity I had to say goodbye.  I know everyone doesn't get that chance and I feel so blessed to have been able to have that time.  It was a hard goodbye, and it took me many months to be able to say it, but those last few months were so hard on me - physically, mentally, emotionally - that by the time the end came, I was ready.  Perhaps more ready than most.  While there was still a little bit of the old Mark to enjoy, it was becoming less and less visible, but the work involved with caring for him was becoming more and more daunting.  I was willing to do anything, and I mean anything, for him - he was worth it and I would do it again in a heartbeat - but I confess to being somewhat grateful that I no longer need to worry about him in this life.  If I could have kept the man I married, I would have been the happiest person on the planet (before the tumor we often remarked on how much happier we were than we could even imagine other couples being - we hoped, for their sake, but it was hard to imagine others being happier than (or even as happy as) we were) I even would have been willing to keep the 'new Mark', but it would have been a hard life.  A very hard life.  Once it became obvious that the man I married - or even any version of him - was no longer able to be a part of our lives, his death was a blessing, and I'm grateful it came relatively quickly.


---This part I added today.

Our new life will also be hard, but I see more hope now than I was able to before.  I probably have less energy overall at the moment, but I have been able to give so much more of that energy to the kids and the house than I have been able to in a long time - it feels like I have more energy, even though I'm often tired during the day.  I actually play with the kids again!  I've cooked more in the last week or two than I have in the last 5 months.  I've put more effort into keeping the house picked up than I have in a long time too (there's quite a few disaster areas from re-organizing the house, and Mark's stuff hasn't been dealt with yet, but I have done better at keeping the frequently used areas tidied - that's a plus!).  I've decided to just enjoy the kids, have fun watching the olympics, not feel bad that I often need naps (I am still recovering from having a baby after all...), and put off worrying about the 'disaster areas' of the house until I either find the energy, or they drive me nuts! (I would say 'which ever comes first', but lets be honest - it will be which ever comes last... :) )

We are moving on, one day/week at a time.  Although I find myself able to lift my head a bit and look to the future, which I didn't notice I was missing until I did it, and the future holds hope! (and fears, of course, but lets just focus on the hope for now!)

Mark has gone Home

I'm sure almost everyone has heard by now.  Mark passed away Friday afternoon, peacefully at home in his own bedroom, surrounded by people who loved him.  I will forever be grateful for the last few months we got to spend with him before the cancer took him from us.  He always enjoyed life, even as it got harder for him near the end, and I am glad we got the chance to make lots of memories with him.

The funeral will be on Saturday the 25th at 11:00am, with a viewing before starting at 9:30, at the LDS church he grew up going to and went to most of his adult life (1700 N Geneva Rd, Provo).  I think he will be glad to get to go back there one last time.  There will also be a viewing the night before at Berg's Mortuary on Center Street in Provo from 6-8pm.

Hospice

It's time.

We have put Mark on hospice and will bring him home in the morning.  He hasn't really woken up since late last week (or really hardly at all since surgery right after Christmas).  He has stopped eating and drinking and it's only a matter of time at this point.

If anyone wants to come visit, he'll be home soon.  We welcome visitors, but just be warned that Mark most likely won't be able to communicate with you.

I just want to say a great huge THANK YOU! to everyone who has been so supportive through all of this!  I wish I had the energy to thank everyone individually.  I've really appreciated all the e-mails, Facebook notes, texts, phone calls, gifts, acts of service, visits, prayers, comments, all of it!  I haven't always been good about taking the time to respond to each individual note/e-mail/text/gift (nor have I always known who they were from), but they were all received and are all appreciated. Thank you!

The Rehab Center

Mark came out of surgery well. He spent a week in the hospital and then they transferred him to Orem Rehab. He managed to arrive at a rather bad time, spent the weekend not in the system, missed therapy over the weekend, and we had to request several of his meals. Once Monday came around and he was in the computer, life got better.

He's been doing physical therapy almost daily and he finally got his first occupational therapy on Friday. Speech has been super consistent about coming in (turns out she's a third cousin on my dad's side and grew up next to the Sundels up the meadow - random!), and he's been super consistent about being hard to wake up when she's there.  Although, he's been hard to wake up most of the time...

I wish I could say he's been doing better. We keep seeing small improvements, but if I try to be objective, he's not really making any great strides. He's actually gone backward quite a bit, even since coming here. He got a UTI, had some dehydration issues, and has been in bed so long that he has lost a lot of strength. He's hard to wake up for therapy. He says he wants to do it (by a really slight nod), and then has a super hard time waking up to do anything.  Even eating is hard for him to wake up to do.  He's the most awake while eating, but even that is borderline 'wakefulness.'

We had an appointment with his oncologist last Monday and he said that treatment while the patient isn't doing well physically is actually detrimental, so he doesn't recommend treatment until (if) Mark starts doing much better.

An MRI is only mostly useful. It will definitely show if things are worse, but if things are better or neutral it's hard to guess what makes it look better. MRIs show swelling and the avastin is great at brain swelling, so a good MRI could just be less swelling, or it could be the tumor doing well - it's likely to be a guessing game. But since we won't treat Mark unless he's doing better, they won't bother giving him an MRI until there's a reason to see how treatment is going.

So that's where we are. Mark got some IV fluids last night, but once the bag ran out they unhooked it.  They're keeping a closer eye on his output to see if needs more. He is still on a two person transfer from bed to his wheelchair, and his left arm/side is basically useless (flaccid?). His food comes puréed, but at least that way he gets more down him. If he's in his wheelchair, we have to hold his head up for him while we feed him, and then put it back down for him to drink so he doesn't cough on his water...  Just in case you were wondering, heads are heavy! :)

I have asked him a few times over the last couple of weeks if he wants to fight this, or if he's ready to be done and come home (to go Home...), and, while his answer is getting weaker, it has stayed the same.  He wants to keep fighting.  So, we're going to help him fight - in whatever way we can, and whatever that means - for as long as he still wants to fight.  

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 :-).