Thursday, December 25, 2014

Christmas Dinner cancer humor

Epic hilarious Christmas dark humor moment:

Mark was making microwave popcorn for the movie, face nearly pressed against the microwave door, watching it pop.

Wendi says: "Mark, get back so you don't get a brain tumor or something. ......oh, wait....."

Mark gives her a mischievous grin, and says "Ha, ha, ha" and then starts laughing, then we all bust up.

"....never mind, you already have one. Go ahead," says Wendi.

Mark thought this was super, go Team Mark!

Merry Christmas!

EDIT: Just to clarify, there were a lot of other things going on at the moment this happened, Wendi did not mean to say it that way, it just came out automatically and could have been anything.... totally accidental. She was a little worried some might assume she did it on purpose, so just clearing that up. ;)

Tuesday, December 23, 2014

Diagnosis follow up and the plan

Mark's follow-up results were inconclusive, not exactly good news but also not bad news in that some nasty tumor types were ruled out.

Not knowing if this tumor might react adversely to chemo or radiation, the initial plan of attack is surgical removal followed with a biopsy to determine follow-up treatment options. The procedure is expected to last around five hours and will involve two neurosurgeons working simultaneously. Tentatively scheduled for January 12 or 19, with an expected post-op hospital stay of at least a week.

Mark is still stoic and cracking jokes. The primary neurosurgeon is impressed and said Mark seems to process things like an 18 year old. We are home for his birthday dinner.

I cannot overstate how precious your prayers and comments of support are to us, thank you!

11th Birthday

It's a bit past midnight, and it is now Mark's 11th birthday. He stayed up waiting for it. He fell asleep in mid-conversation about birthday party plans, with Mommy's hair entwined in his fingers.

Monday, December 22, 2014

Santa's elves

Jodi, Kimmie, Sharon, and Christine, best Santa elves ever
Santa's elves came to visit us today, heaven-sent angels representing our CC community. We are eternally grateful and at a loss for words, the gifts they brought will help us make sure Mark's Christmas is amazing. These blessings move me to tears.

Wednesday, December 17, 2014

Day Six

One lesson strongly reinforced through having a life-threatening health emergency afflict one of your children is that your eyes are re-opened to all of the other catastrophes happening to other families every day. Every other family we saw in the cancer ward is living their own uprooted and sometimes devastated lives. Every cashier who asks how my day is going still gets "fine, thanks" because I don't want to drag them down. Everyone you see and maybe even know well, you have no idea what they may be going through behind that smile. May I propose that today is a good day for a random act of kindness, you never know how it might affect a life for the better. God bless.

Tuesday, December 16, 2014

Day Five, update #2

We are home from the hospital. No further action until after Christmas and maybe New Years. The oncology and neurology people will be collecting data, comparing notes, consulting sources, and coming up with a plan. Since it was caught early, other than relieving the pressure with surgery there is no critical emergency that can't wait until after the holidays. Despite the break, we still have a 10 year old boy with brain cancer and some long, difficult and scary days ahead. From the bottom of my heart, thank you all so much for your words of comfort and especially for your continued prayers. God bless.

Day Five, update #1

Getting the IV pulled so we can escape.

Monday, December 15, 2014

Day Four, update #2

Big sister Genny, Mark, Aunt Cindi
Tonight, Mark is livin' large with steak, chicken noodle soup, hot cider, and orange sherbet. Tomorrow, home. Then we regroup for counterattack after January 1 based on what we learn this week.

Day Four, update #1

Dad and Mark
First trip off the floor!

Sunday, December 14, 2014

Day Three, update #3

New room, no tethers. Spaghetti, ice cream, Lego's, and Despicable Me 2. Mark's mood is 500% improved.

Day Three, update #2

A hospital volunteer dressed as a clown came by with goodies. Standing at the doorway, he asked Mark "Would you like a visit from a clown? I do magic tricks, too!"

Mark looked him straight in the eye. "I don't do clowns. No thanks."

Okaaaay then! lolol

He left bubbles for Gabriella anyway.

Day Three, update #1

Packing up to move out of ICU to a regular room. No more wires and tethers, freedom to move about the cabin. This present emergency has passed, but Mark still has a long and difficult road ahead. Thanks so much for your continued prayers.

Saturday, December 13, 2014

Day Two, update #2

Important detail I forgot to include in today's 1pm update:

Mark's uneven pupils were equalized within a couple hours of surgery. Nice to see.

The nurses all utterly adore Mark. He is witty, intelligent and brave, they just love it.

Good night, thanks for your continued prayers, and God bless.

Day Two, update #1

Saturday 1pm update on Mark, and the providential back story.

Back in September, Mark was being adventurous on what is known as a slack line in our back yard. He was jumping and got his legs caught up in it and flipped out from under him. He fell hard and hit his head from about 4' off the ground.

He was examined and treated for a concussion, including a month of restricted activity.

Since then, he reported worsening headaches, and the unequal pupils noted at the time did not improve much. We took him back to primary care for follow up, and were referred to a neurologist to see what was delaying recovery.

The neurology clinic was slow to get back to us for some reason, and a week in I finally was terse enough on their new patient message line to get a callback. Turns out they misplaced or couldn't find his paperwork, and also said they were booked out into March.

While I was on this phone call, Mark was near tears with another headache. To heck with this, we need answers before March, so to the ER was the new order of the day.

The initial diagnosis at the ER was again orbiting the concussion and recovery, but the doc decided to do a CAT scan just in case, something he said was rare for this situation, but something just wasn't adding up for him.

Of course, as we now know, the cause of Mark's pain and unequal pupils was not a post-concussion problem, it was a tumor.  Mark has brain cancer.

Here's the providence. If Mark had not fallen. If Mark had not suffered the concussion. If the paperwork to the neurologist had not vanished. .... Children are amazing compensators medically, and conditions therefore don't often produce symptoms until they are out of reserves and crash. The concussion dented his reserves enough to allow symptoms to show through. Without this unique chain of events we would not have known for many months, and by then it would have been too late to do anything at all.

Yes, even things that look devastating on the surface can also be miracles.

Mark wants you all to know that he is feeling much better. Presently he and I are lying on his bed, 8 year old Joseph between us, watching The Avengers.

No major events are anticipated today or tomorrow. Mainly we are waiting while Mark recovers from surgery, doing pain management, and getting his body back to managing normal foods.

We are going to sort of go offline for a while, to dampen the steady hum of texts and emails and Facebook alerts, apologies if we don't get back to anyone right away.

Friday, December 12, 2014

Day One, update #5

We've had a rough week for sure, but we don't own the market on tragedy and pain. All three of the students shot in Portland today are also here at Randall Children's, same floor, same wing (PICU), same nurse's station. Prayers to them and their families.

3 injured in Portland school shooting

Day One, update #4

This was Mark about two hours post-op, drinking Sprite, downing lime Jell-O, and watching a Pixar movie.

Day One, update #3

Out of surgery, no complications with the procedure to clear a blockage and relieve pressure. We are in the waiting room, they will be bringing him out shortly. The next news will be a few days out while we wait for the results of various tests.

Mark probably has a long hard road in front of him, but we have faith and hope. Still on track to take him home as soon as Monday if everything works out. We won't know the next steps for several days.

Thanks from all of us, and God bless you all for your prayers and kind words.

Day One, update #2

He is in his 2nd MRI right now, then off to surgery for what is characterized as a simple low risk bypass procedure to alleviate the pressure, and if lucky might be able to biopsy the tumor.

They will test the CSF for markers that might indicate what type of tumor we are dealing with in case the biopsy chance doesn't pan out.

He will probably be released from the hospital on Monday, and the next steps will be determined by the lab results.

Turns out that the tumor is not totally inaccessible, so if it comes to it, surgery remains an option, but a risky one.

Mark has now mostly been briefed in, he wanted to know what he was up against. His Science Olympiad-learned college level of anatomy means he understood the neurosurgeon and he wanted to see the scans and knew what he was looking at. Amazing kid.

He is taking it all pretty well, joking with his younger siblings. There are still plenty of possible bad outcomes, but now we are seeing a few scant rays of light shining on possible outcomes that are a little bit north of hopeless.

Your prayers and prayer chains, words of encouragement, and offers of help are priceless and move me to tears. Prayers remain the best and most needed help. Thank you, and God bless.

Day One, update #1

Mark is sleeping like a rock star. He sort of woke up when I took this amusing picture, asked in a mumbly voice if I needed anything, when I said no he smiled, reached up and gave me a blessing, and promptly fell back to sleep.

Thursday, December 11, 2014

Emergency prayer request

Emergency prayer request. We are at Randall Children's Hospital at Legacy Emanuel in Portland, having Mark evaluated for headaches. They have discovered a growth on his brain in a nearly inaccessible place. It will be a while until we know more about what it is and what we're up against, but there will be urgent surgery late tonight or sometime tomorrow. Thanks for your prayers.