Bounce

Late last night Mark had a brief good bounce and started cracking one liners and endearing himself further to Liz, the night RN, had her in stitches. I hoped we had turned the corner, but this morning he was very low again.

Nachos, breakfast of champions.

Grandma showed up, but he barely felt up to giving so much as a weak thumbs up to anything. He wasn't drinking enough, so his IV was hooked back up, further dragging on his mood. And since he was hardly eating, the topic of an eventual feeding tube came up. He did ask for nacho cheese lunchables for the umpteenth time, though, so grandma left on a mission.

The day RN, Bonnie, surmised that Mark was trying to access his stoic reserves (which are pretty depleted), and might be trying to pigeonhole his pain. We slipped an unannounced dose of morphine in, and he conked out soon after.

Visit from Debi and Tasha. Sorry, missed picture
opportunities with Darlene, and with the Myers,
who watched Mark so I could run a couple of errands.

When he woke up, there were his nachos, and he tore into it, ate the whole thing. Then a steady stream of visitors started appearing. Mark's highlight was when his MD and Bonnie conspired to creatively circumvent the rules regarding child visitors. You see, non-siblings under 18 are not permitted past the lobby, let alone allowed on any floors above.

Visit from Paul, and Groot.

Jake Rose brought his son Paul, one of Mark's best friends, into the lobby. Bonnie's other patient was reassigned, and Bonnie bundled Mark into a wheelchair and attached his associated tethers, accompanied us to the lobby, and remained on-hand to supervise her PICU patient the entire time. Mark made funny faces with his uncooperative eyes, Paul gave Mark a singing potted Groot, and the boys (and dads) had a delightful visit.

Since the morphine-assisted bounce, along with orchestrating visits and travel out of his room, Mark's mood has been 500% improved again, he is eating and drinking (and had that IV disconnected accordingly), and we will be making sure we stay ahead of his determined attempts to deny his pain this time.

Bonnie our day RN, and Liz our night RN. They have both
been amazing and serving far above and beyond!

Several gifts and cards were delivered today from many friends, thank you so much! At this point, though, I have to request no more deliveries of goodies. We have so much stuff here now we'll never get through it during our stay, and we'll need two trips with wagons to get everything to the car! This is an awesome and heartwarming problem to have.

Mark was recently morphined up again, and will wake to more nachos. It will be a good night.

God bless, thank you so so very much for your prayers and words of support. I read every comment to Mark, so he knows he is loved, and that means so much to us.

Friday Movie Night

Who are we kidding? When your eyes are mostly uncooperative, your stamina is low, and your frustration is peaking, every night is movie night. Presently, it is The Lego Movie.

Mark is tired, his reservoir of patience is pretty dry. The staff knows he's a charmer, but the charm is on minimum right now. Many questions are answered with just a shrug.

I just want to carry him away to a happy place and make it all go away. This is a helpless place to be for a parent.

Wendi went home to rest and recover, so it is just Mark and me for now. His gradual recovery is slower than he'd like, contributing to his discouragement. On the positive side, after a brief recurrence of nausea, he's eating a little better now. He also had one of his remaining two IVs removed, so that's one less tether.

Hopefully there is more tangible progress tomorrow to help lift Mark's mood. All your offers of support, prayers, and so much assistance from our friends with transportation and childcare, has been amazing and leaves us at a loss for words. God bless, and please keep the other families and staff here at the PICU in your thoughts.

OK... next!

Wendi is back with us from the ER, feeling a little better. Some additional help has also arrived. We are about ready for the next emergency. Bring it.

Mark is doing a little better, the expected amounts of daily improvement, will post more about his progress later.

As if that wasn't enough

So, Wendi has had abdominal pain off and on for almost two weeks, but tonight and this morning it got unbearable, so we wheeled her from the Randall PICU to the Emanuel ER. On the bright side, it was very convenient. I'm back with Mark. We're obviously both now more preoccupied than before, so please hold off with texts and calls and such. Thanks.

Musings

Been thinking about major family trials like this, and what it means in today's social media world compared to 25 years ago.

Back then, far fewer people would be informed about this event so quickly and in so much detail. The passing of information back then was slowed and muddied one phone call at a time.

Back then, the family at the hospital was not expected to concern themselves too much with making sure all the family got the news in a perfectly timely manner; that was delegated to Aunt Edna, the top of the phone tree.

I say this because we have found it impossible to control the flow of information unless we simply stop sharing info altogether. We update here when we can, we talk and text with friends and family if time permits, and many of them also use social media. Sometimes info leaks out in funny places, and sometimes people are a little hurt or surprised when they get info from a source or at a time unexpected.

We are not going to concern ourselves with this very much, and I trust you all generally are OK with that. Our #1 priority is Mark, #2 is our other children. After that, honestly, we do not have the time or energy to worry about much.

Don't get me wrong, this post is not because there was a problem, everything has been fine. It is just a bit of rambling observations on family crises in the digital age, and the sometimes imbalanced expectations of timely info that we have grown accustomed to since the dawn of the Internet.

Job #1 right now for us is Mark. That is all. Thanks for reading.

Much Better

This morning Mark had a real breakfast off the menu, feeling much better. Overnight, in steps, his arterial line, IJ neck line, and Foley catheter were removed. Anything to reduce the number of tethers makes him a little happier. Overall, right now he is still spent, but the run-over-by-a-truck impression is fading.

Mark has been asking for some snack foods since the evening of his surgery, and I finally started a list so he wouldn't keep asking if I remembered certain things. The order is being filled today, though we've told him his access will be metered, don't want to go bonkers, but how much harm can you cause with pretzel sticks, really?

So very early this morning, Mark wakes up and asks Wendi..."Did you get the stuff from my snack bag yet?"

Wendi: "No, Genny or Grandma will bring it later, but it's still really early."

Mark: "But I just can't wait.......waiting is part of life."

Wendi: "You're right."

Mark: "Especially with kittens."

Wendi: ........

Mark: "And babies. Babies and kittens. They're both so cute."

Wendi: "....Yep. Why don't you rest some more?"

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We got to see yesterday's MRI this morning, and it looks like about 85% of the tumor was removed. Looking at the scan, seeing the tumor in the center of his brain, all the scary things you have to get past to access it, even though we of course hoped for near 100%, that 85% still seems nearly miraculous.

We have discovered that there is a clinical trial going on at St Jude's Research Hospital for the type of cancer Mark probably has, and the staff here is helping get us aligned for maybe applying to participate if it fits and can help. We shall see.

Parting tale of Mark later this morning.....Wendi was stepping out to get Mark a breakfast thing not on the menu. As she was leaving, he said "....and get yourself a coffee. You've earned it. I mean, you've been taking care of me all week. I'd pay for it, too, but I lost all my money at home."

Oh, Mark. My sweet, sweet Mark, you are amazing.

The Day After

Mark is presently watching Iron Man, and finally keeping broth and Gatorade down, starting to trend towards normal, though he has been through a few minor hells and is seriously worn out overall.

He is still having issues with short term memory, occasional hallucinations, and motor control. His eyes are still mostly uncooperative, so the staff rounded up a portable DVD player that allows Mark to watch a screen in his lap where his eyes are going instead of trying to manipulate his bed and contorting position to a place where he can see the TV up high on the wall.

He had another MRI today to evaluate his status post-op, and he was out of it enough that we went with full anesthesia, we weren't sure he could stay focused and hold still through it like he had done in the past. It took him two hours after to come out of it, and when he did, he seemed to have completely lost memories of yesterday. That's OK though, because yesterday was legitimately miserable overall.

While he was coming out, he reminded us that even in his fog, he is sharp. I was explaining something to him, when he cut me off and finished my sentence..."OK, Mark, after that we will-" "Rock you!". Haha.

Earliest pathology might come back tomorrow, but confirmation from other sources may be a week or more. What we do know is that the Oncology people are pretty confident in the tumor type now, and I have to be honest, it is not a good situation.

That said, spending time in the PICU is a stark reminder that we do not have the market cornered on trials and tragedies. The two year old girl who was paralyzed and brought in yesterday is just one of many families whose world has been blown up, and the staff here deals with more of these on a fairly personal level every day.

Along with Mark, please keep us, the staff of the RCH PICU, and these other families, in your prayers. God bless.

Good morning

Mark is still having trouble keeping anything down, even down to us metering a couple of ice cubes every 20-30 minutes. His body isn't working like he wants it to, so he can't play video games because his coordination is all off, not to mention he is having trouble with his eyes doing their own thing and he can't look up. I think he was bemused by the novelty of this at first. He has also had bouts of dizziness. Of these symptoms, he said "So I guess this is what it must be like to be drunk.". Haha, I told him his assessment was probably pretty accurate. He fails to see the merit in why people would get drunk on purpose. Several hours in, the novelty is wearing off and his frustration is growing, hope it starts to clear up soon.

Post-surgery update

Although Mark is occasionally hallucinating or forgetting conversations mid-sentence, some effects that were not entirely unexpected, he is also a little self-aware of it. He was a little put out with himself for mistaking Mom for a tank (he played a lot of tank video games during our last stay).

However, he is high functioning enough to ask for and watch Dr. Who on Mom's Kindle. And c'mon, Dr. Who is just strange enough to help blur the lines of reality, right?

OK, in case you want to drop by and see him (thanks, ladies and gents, he'll be here all week!), we are at Randall Children's Hospital in Portland, room 511. PICU and seasonal flu rules dictate no more than two adult visitors at any one time (including parents), and no one under 18. If you come as a large group, we can rotate visitors in and out, and there is a play lounge for kids available.

Time to try and get some sleep....

Surgery Update #4

Mark is sleeping now, sorry for the delay in getting an update out. It's been a very long day!

The surgeons were able to remove about 75% of the tumor, but some of it was simply not accessible without unacceptable risk of damaging critical veins.

We have some preliminary info on the tumor type now but will have a much clearer picture of what we're dealing with later this week, for now we just want Mark to rest and rebound.

With much of the tumor removed, we've bought that much more time to plan and react to what's next. Whether that entails mainstream approaches such as chemo or radiation, or alternatives based on the tumor type, and whether or not that involves travel to a specialty hospital, remains to be seen.

Despite still being groggy and unsure what time of day it is, he has still managed to tell us he was concerned for Joseph and Gabriella, making sure someone was taking care of them.

This is merely a step in the journey. It is clearly not over, and won't be for a while.

Wendi and I thank you all for your tremendous gifts of prayers and words of support. More tomorrow.

Surgery Update #3

Mark is in recovery now, slowly waking up, things went more or less OK. More later.

Surgery Update #2

We've been visited by three nurses so far, all of whom have reported no problems, that everything is proceeding without problem. They have been excellent at keeping us updated.

When we came into surgery waiting, the room was pretty full, maybe another 10-15 people waiting. There are only two left in here with us now, but they are recent arrivals. Mark was clearly the Main Event today.

Surgery Update #1

Nurse came to tell us all the special pre-op prep and positioning took longer than expected, but the procedure is now underway, said everything is going fine so far. She could not stop remarking upon the impression he made upon the staff: "He is such a strong, brave, brave kid!" Mark makes us proud.

Here we go

We just gave Mark over to the surgical team. Dr. Abtin told us that there has been no change in the tumor since it was last scanned a month ago, so that is good news...no growth or unexpected new complications. I am so proud of Mark, his attitude is amazing. And now, the wait......

Checking in

Running a bit behind schedule, but we are checked in. Mark is now in MRI. He is in a pretty amazing mood, and Wendi showed him the police car inside dashcam video of the officer singing along to that Taylor Swift song to distract him from the IV, he didn't even notice until it was done. He's cracking jokes with the staff again, in true form. Will post more later. Thanks for all the words of support.

Answers to your questions!

I realized a lot of questions posted here and on Facebook had gone largely unanswered.  Didn't want anyone to think we weren't reading your replies and sharing them with Mark, and part of that process is taking the time to respond back to all of you.  I searched through Facebook in several places as well as through the comments here.  If I missed anything or you have other questions, please reply to this post.  Thank you all for your throughts and prayers.

Also, find attached to this update a photo of Uncle Mark with our first grandchild - his first nephew - Nicholas Elliot, born January 17th.

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Amanda King Padgett, via Facebook (Classical Conversations Official) 12/12...... (and many more of you)

Is there anything else we can do for you?

The very best thing in the world for Mark and our family right now are your prayers.  Feel free to share with any prayers groups or churches you like, all is appreciated.  Thank you!

Mark's Aunt Cindi did set up a GoFundMe account to help us offset the expenses associated with this event not covered by insurance.  We have not pushed this very hard because, well.... I guess it just doesn't feel right to me to ask for money, and I know others likely need that kind of help more than we do.  However, if that is something that you would like to do to help us out, we certainly wouldn't refuse, all help is greatly and humbly appreciated.  The GoFundMe page is here:  http://www.gofundme.com/iyjtfk

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MarkMary Willenbrink, via Facebook (Classical Conversations Official) 12/16

Would you like to set up a special facebook prayer page and have us recommend it to other prayer warriors?

This CaringBridge blog was created to serve that purpose.  Please feel free to share this page with anyone.  Thanks!

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Drea Lyon, via Facebook 12/16

Do they know what kind of brain cancer yet?

Not yet, tests on the cerebral spinal fluid were inconclusive.  A biopsy will be performed on the tumor following the surgery scheduled for January 27 to attempt to remove it.

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Roger Tarre, via Facebook (SPAAMFAA) 12/23

Frank, it won't get there in time for Christmas, but I'd love to send him a t shirt from our firehouse. If you'd like, message me with your address.

The shirt arrived safe and sound as previously reported, he loved the surprise package, thank you!

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Joe Russo, via Facebook and CaringBridge, several messages...

I have shared all of your tales and jokes with Mark as they arrive, and he is amused even though some of the jokes are real groaners, haha!  "What kind of bird flies over the Bay?????? Answer: A Baygull, (Bagel) Get it, LOLOLOLOLOL" Thanks for taking the extra time to drop him those notes.

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Elisabeth Howard-Langmack, via CaringBridge 1/2 

As always Mark and your family are in my thoughts. ..what I want to know is who won the pillow fight?

All I really remember now is that I ended up on the bottom of a pile of pillows, and kids aged 6 to 16, with bent glasses.  My memory of that event is a little fuzzy.

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By Rich Mackey, Newark NJ fire department, via CaringBridge 1/15

God bless you Mark, stay strong little buddy and always stay positive! You are a very brave and strong young man and must be making your parents so proud. You are in my prayers and I will spread the word about you. If you would like a patch, just let me know!

Rich, thanks for the offer.  We don't have a fire patch collection here, not sure why not after 20+ years of me riding fire trucks around.  Perhaps Mark can start one for the family.  Patches from anyone who is willing to send one can be mailed to: to Mark Billington - 39801 NE 26th St - Washougal WA 98671.  Thank you!

Growing up too fast

A coworker was discussing the byproducts of this kind of family cataclysm, from when his teenaged son suffered a huge blood clot on the brain resulting from a long congenital defect, that nearly cost him his life. He said the afflicted kids grow up fast, way super fast, a natural result of suddenly having to deal with some very grown up issues. It has its good sides and bad sides.

We saw that in Mark, today, when he had a minor epiphany. He told us, "It makes no sense to dread the inevitable, because there's nothing you can do to keep it from happening, so now I'm not dreading my surgery."

Mark has tried to stay in a good mood and done pretty well with it, but after this observation it still lifted that much further. Wendi often describes a similar mindset about carrying extra worries for no benefit, which goes along the lines of "Don't borrow trouble, because each day has enough trouble of its own. There's no point in worrying about something that might never come to be."

Indeed, consider the lilies of the field. Matthew 6:28

Counting Down To Surgery....

A good-luck gift arrived in the mail yesterday, from Wolcott Volunteer Fire Company #3 in Massachusetts (https://www.facebook.com/wvfd3).  One of Mark's prayer angels, Roger Tarre of WVFC3, arranged to get it here before Mark's original surgery date (tomorrow).  I brought the package in last night and left it next to Mark as he slept.  When he woke me up this morning, he was already wearing it.  Thank you, Roger!

Surgery date has been changed

We were just informed that the 2nd of the two neurosurgeons set to do Mark's surgery has had a family emergency arise and had to leave town.

After some consultation with our primary surgeon, surgery is now scheduled for the other surgeon's first day back. They cleaned off the schedule for that day so Mark is on top of the agenda...the only one on the agenda, actually. One of the nice things about finding the cancer so early (you have to make the best of nice things wherever you find them) is that the relative urgency to do surgery is diminished, so the delay is not significant.

In any case, the new surgery date is Tuesday January 27.

If you're the praying type and have had Mark in your prayers, might want to consider adding Mark's 2nd surgeon for whatever his family is going through now.

Thanks for reading, and God bless.

Surgery date is set

Brain surgery to attempt to access and remove the tumor will be on Monday the 19th.

Mark needs to be in good health for surgery to proceed, so we will not be as active out and about as much as normal leading up to this, in order to minimize his chances of being exposed to things.

Thanks to you all for your support and prayers.

Happy New Year!

Mark on Christmas Day

We are still waiting for word on whether Mark's surgery will be January 12th or 19th, apparently the office of our primary neurosurgeon is still trying to coordinate with the second surgeon who will be working with him.

Christmas was amazing, thanks so much to so many amazing angels who blessed our home with meals, gifts, childcare, and even just phone calls and emails and texts of support.  We are spending our time just trying to make life as normal as possible heading up to the surgery dates.  Mark is obviously a bit nervous about brain surgery, but his biggest concerns now seem to be the recovery period in the hospital, and that he'll have an IV for at least a week.  He does not look forward to being tethered to monitors and has found that IV's are quite uncomfortable after a while.

For now, the normalcy is working well.  His cancer does not mean he is fragile.  He got involved in a pillow fight with his brothers and Dad, and got equally clobbered just like the rest of us, it was grand.  Post-op, recovery permitting, Mark is planning to have a huge party at Chuck E. Cheese, details will be forthcoming.  If you're reading this, consider yourself and/or your children invited.

As always, I cannot overstate how powerful and important your continued prayers are for Mark and for us, we are so thankful to hear how many prayer chains he has been picked up by.  We are left wanting for nothing tangible because of the amazing graciousness of so many, yet continued prayers remain for now among the best and most appreciated gifts you can give us.

Thanks for your support.