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.