update on kate mcrae, via caringbridge

Surgery postponed

By Holly McRae — 56 minutes ago

Brain surgery has been rescheduled for Wednesday morning at 7:30 am, due to a more emergent case.

We will try to update more details tomorrow. For tonight we are just tired and incredibly heavy hearted. Grateful for the prayers.

via new journal entry at CaringBridge

Photo 

By Holly McRae Jun 28, 2013 -- Kate showing *attitude*!

Brayden Martin: Always on My Mind

Hi, Dear Readers --

It is good to be back after my hiatus dealing with spamming and reprobate relatives.  How did those problems work out?  Well, amazingly enough, the universe conspired to remind me what matters, and what does not.

If you're smiling, it's likely that you rank quite high on my "He/She Matters List."  It's akin to a gratitude journal in shorthand.

Relatives that I don't really know who are acting like hoodlums are hoodlums and, insofar as they do not cause my Mother-Unit stress or steal her worldly goods and happy outlook, they may merrily launch themselves off their local choice of cliffs.

Pornographic spam was generated due to my vocal refusal to allow truly suffering people to be taken advantage of by CALMARE / CTTC and the shady practitioners who are having a last ditch moment of money-grubbing as the whole affair circles the drain.  I think flooding my blog with porn spam is a bit ridiculous but these are not ethical people.

So let's concentrate on someone who matters.

Brayden Martin comes to mind.  He's had another rough spell, and, finally, his mom Maranda and his primary oncologist decided an early MRI to assess the efficacy of this new chemo protocol was warranted.
That happened yesterday and today Maranda and Brayden found out that, unfortunately, his tumors have doubled -- which was, I think, what Maranda already sensed.

She (and he, of course) is a tough cookie.  But no one is tough or ever prepared for this journey, be it the journey of a child or an aged beloved grandparent.  There is no preparation.

Brayden is charting new territory for relapsed pediatric medulloblastoma.  There are NO protocols to which they can refer for guidance.  And so Maranda and her guiding physicians, and her faith, are groping in the dark.

This is what she wrote today and it details the next treatment to be tried:

To just be blunt, the chemotherapy did not work at all. Instead of having two spots lighting up he now has 4. We have one option left and it was a road we were trying to avoid. Photon Radiation. It is dangerous with many side effects. Even the chance we could lose Braydens personality. I believe with prayer with everyone praying, we can keep those negative things from happening. With prayer we will keep those good cells from being damaged. With prayers we will hopefully get all of this cancer dealt with. I am going to pray that this treatment works and that he will come out the other side, the ornery, funny, little rockstar, we all know and love. Right now he is on a triple dose of steroid, that is always a ton of fun :o). Three weeks after the radiation is done he will start in patient chemotherapy. We were hoping this chemo would work, but I never had a great feeling about the treatment he was on, and this one I feel has a better chance of destroying this cancer. We have to stay positive. We are stronger than cancer will ever be. We love each other all the way to the moon and stars. We are going home this afternoon, there is no point and staying and doing in patient rehab, we need to start radiation as soon as possible. We will get back to doing therapy as well. Brayden went all over the hospital today in a little car, using his legs like a pro. He is tough as nails. I asked him if there was anything he wanted me to tell you all. He said that he likes to play a lot, with cars, and he likes to play guitar, and be a rockstar, and play on the Wii. We cannot wait to get home, this is an even more difficult place to be when you are sad. Every time he has progression it gets harder. I will continue to try and stay positive. We need some prayers to get through this meeting we will have this afternoon with Dr Aguilera. My Mom is here with me, and we are trying to find someone to come and sit with the boys while I go to this meeting at 3 o clock. We love you all. I will update once we are home and after my meeting with Dr Aguilera. 
                                           Love Always,                        Maranda, Brayden, and Mason 

We love you, Brayden!

© 2013 L. Ryan

Joey, Lego King, is Home!

From Nick's latest CaringBridge journal entry:

Finally home! (iPhone)Written 8 hours ago 

Joey is so happy to be home. Thank you all for your kind words and prayers. We are finding out what all the nurses were so busy doing, whirling around him, running in and out, changing tubes, syringes, etc. wow. There is much to do. Around the clock. But wouldn't change it for the world. He keeps thanking us for getting him "all these Legos". Many of them look brand new to him. A lot of it is coming back to him. I was telling the Dolans (neighbors that were kind enough to have dinner waiting on us when we came home tonight) that as long as we tell Joey something he forgot, and he doesn't forget it again, we are OK. Doctors said that is just a software issue. If we have to keep telling him and telling him and telling him, it's a hard drive problem and much more significant and potentially permanent.  

Thanks for your prayers that have helped make this happen. We have much to be thankful for. It's interesting, he is looking at all these Legos like he's never seen them before in his life. And it makes him so happy and thankful. He's giddy and keeps thanking me saying he'll never ever want to buy another Lego set again because "all of these!" What if we all did a mental "reset" and looked at all of our blessings like that in the morning, and were just overwhelmed with thankfulness and happy with what we have. Joey's the happiest I think I've ever seen him. Might work for us too. What a perspective adjustment. Just a thought. :) Joey teaches me to be thankful every day.

In case you haven't been following the Joey Keller thread here on elle est belle la seine la seine elle est belle, this is how things were just a week ago:

Back on October 2, Dear Reader TAM wrote this comment, when Joey was probably at his lowest point and things were looking quite grim, in an immediate sense:

I read the blog. My god, that poor child. I am so sorry for the parents too, but why do they continue to put him through this? Why is the medical profession not counselling them about when enough is enough, and hospice is appropriate? That poor boy.
TAM

I post this comment not to go "nya nya na na na..." but to do a better job explaining.  Joey and his parents are quite savvy medically, and know that he will not survive this recurrence of medulloblastoma, particularly since it is encroaching on the brainstem and choking sections of his spinal cord.  They know that any moment might be his last, just by the rude movement of one cancer cell.  There is no dissonance in them when they juxtapose their faith in God with their faith in the medical arts and sciences.  So long as Joey wants to fight, they will fight, and that fight will be ferocious.  In a sense, hospice has already begun, as palliative measures are at the forefront of their thought -- they don't wish their son to suffer.

Thus far, he is living, and is finding joy in it.  What has happened over the last several weeks is... and I so hesitate to use this word... miraculous.  Don't you think, TAM?

You know, I think I neglected to copy here the "My Story" blurb from CaringBridge, which sums things up so much better than ever I could:


Joey Keller is fighting multiple relapse medulloblastoma. We have a solid understanding of evidence based medicine, statistics, and thank God for modern medicine.  Moreover, we are so grateful for the doctors and medical staff that have sacrificed so much of their lives gaining the expertise and training that we are now benefiting from.  Having said all that, and not [finding it] mutually exclusive, we believe in miracles. YouTube video about Joey, below:

Poem of Perfect Miracles

"Dr. Shih said 'Amazing!' After being intubated and unresponsive just days before."

REALISM is mine, my miracles, Take all of the rest—take freely—I keep          but my own—I give only of them,  I offer them without end—I offer them to you          wherever your feet can carry you, or your          eyes reach.  Why! who makes much of a miracle? As to me, I know of nothing else but miracles, Whether I walk the streets of Manhattan, Or dart my sight over the roofs of houses toward          the sky,  Or wade with naked feet along the beach, just in          the edge of the water,  Or stand under trees in the woods, Or talk by day with any one I love—or sleep in          the bed at night with any one I love,  Or sit at the table at dinner with my mother, Or look at strangers opposite me riding in the car, Or watch honey-bees busy around the hive, of an          August forenoon,  Or animals feeding in the fields, Or birds—or the wonderfulness of insects in the          air,

Or the wonderfulness of the sun-down—or of          stars shining so quiet and bright,

Or the exquisite, delicate, thin curve of the new-          moon in May,

Or whether I go among those I like best, and that          like me best—mechanics, boatmen, farmers,

Or among the savans—or to the soiree—or to          the opera,

Or stand a long while looking at the movements          of machinery,

Or behold children at their sports,

Or the admirable sight of the perfect old man, or          the perfect old woman,

Or the sick in hospitals, or the dead carried to          burial,

Or my own eyes and figure in the glass,

These, with the rest, one and all, are to me          miracles,

The whole referring—yet each distinct and in its          place.

To me, every hour of the light and dark is a          miracle,

Every inch of space is a miracle,

Every square yard of the surface of the earth is          spread with the same,

Every cubic foot of the interior swarms with the          same;

Every spear of grass—the frames, limbs, organs,          of men and women, and all that concerns          them,

All these to me are unspeakably perfect miracles.

To me the sea is a continual miracle,

The fishes that swim—the rocks—the motion          of the waves—the ships, with men in them          —what stranger miracles are there?

-- Walt Whitman, 24 — Poem of Perfect Miracles, Leaves of Grass
The Walt Whitman Archive

elizabeth, nick, and joey

Elizabeth, Joey, Nick
from Joey's CaringBridge page

There have been no updates to the journal that Nick usually maintains with great vigor -- not since September 30.  But this picture was added, and this picture says it all.

Do whatever it is you do, Dear Reader.

Joey Keller, Lego King of the World, Needs You RIGHT NOW

Hi all.  I went to bed worried about Joey, one of the four (okay, four "or so") pediatric cancer patients that I follow via the wonderful site CaringBridge.  You can go directly to his by clicking HERE.

His cancer, like every cancer, is a terrible one.

No, that's not true.  The first line of his "story" reads:  "Joey Keller is fighting multiple relapse medulloblastoma.."

He has one of the worst, but he has the biggest hunk of faith and derring-do that clearly comes from a slightly hyper father and a stalwart mom.  And his own joyful, humble little self, of course.  I forget sometimes how unique and -- sometimes for good -- alone these kids can be, despite the hurricane of activity whirling around them.  In their aloneness, they often develop god-sight and world-sight that puts adult vision to shame.

Such is Joey, Lego Kind of the World.

Last night, while his Dad was helping him take a bath, he suffered perhaps a stroke, perhaps a seizure, and became unresponsive.  At the hospital, he remained unresponsive, although he did begin to speak some, though what he was saying was incoherent.  He's in there, though, and that's the point.

They did a CT but really need an MRI.  He just had one recently, with fairly positive results in a very negative situation.  He has tumors of the brain and, almost more scarily, up and down his spine.

His Dad is in the allied health field (that's my impression) and is an avid amateur minister, investigator of God's promises, a tough friend to the deity.  He wears me out, frankly, and bless him for the drive to keep his Lord on his or her toes.  His Mom... she is balance, and I am sure she is sick of it.

I don't think anyone believes Joey is going to survive this cancer, and I hope his Mom and Dad won't reach through my computer screen with a wicked bitch slap.  But goodness, goodness, goodness, he deserves a conscious, peaceful death.  He deserves, they deserve, to feel connected to God, to feel that nothing has been left unsaid.

His Dad wrote, at some point during the night:  "He looks around a lot and seems like he wants to talk. We feel so bad for him. He's looking at me now, the light from hallway shining on our faces. I keep thinking my alarm clock's gonna go off, and ill wake up. or like less than 2 yrs ago, he'd walk up to the side of the bed and put his hand on our shoulders and gently rub our backs Till we woke up. This can't be real-"

So please, dearest readers, do what you do, so well, on Joey's behalf, and do it now.

UPDATE, 2 PM, 9/26/2012:  From Joey's Dad:  "Quick update. The meds needed to control Joey's seizures were stopping him from breathing. Very labored, and episodes where he would stop altogether. They moved us to ICU and intubated him for many reasons. They're gonna throw kitchen sink at stopping these seizures and on a ventilator they can't stop his breathing. Priority #1. We actually don't know if labored breathing is from the meds or the seizures. So gotta stop seizures. You know, I can't keep thoughts straight. Thx for prayers. As I get more info, I'll pass on so we all can be on same page with prayers. Thank you."

UPDATE, NOON, 9/29/2012:  "We just met with the lead ICU team, and wanted to get an update out on where we are at medically. I’ll try to remember all the details. She wanted to emphasize that the Joey we knew, with almost 100% certainty, will not be the Joey we see in the future. And without getting into all of the medical specifics, his brain has suffered so much trauma and injury, they think he won’t be at the “baseline” he was before the initial seizure in the tub. I want to mention too though, that the CT scan and EEG data don’t really show anything. They are going by the “posturing” we saw and some of the neurological deficits they see now. ALTHOUGH, they said in the first 24 hours (after incident or trauma) they always see patients getting worse. After that, we have about 4-6 days to see improvement (no guarantees of any improvement, or could see dramatic recovery, they really don’t know, medically.) They think after the first seizure, his sodium crashed and flushed fluid out of his brain, thus the posturing (and potential for brain damage/death.) This is really concerning. I was standing over him, alone, praying actually, when he went into that modeling pose and to think I was watching the fluid being flushed out of his brain, and possible assault to his brain makes me sick. SO, the fact that the CT scan and the EEG don’t show anything huge (like massive brain bleed) is a positive thing. Also, he pulls away from pain, pupils respond to light, he has been stretching, sometimes will open his eyes, heart rate goes up every time I talk to him, all are really good things. On the other hand, while the drugs he’s on are sedating, we found out, not so much that he couldn’t be waking up (over time, don’t know how much, but slightly concerned it hasn’t happened yet) pulling at the vent, irritated, etc. concerns them. But it could be too early to tell. She really didn’t know much, and we told her appreciated her saying that, other than he won’t be the same Joey we knew…but didn’t say what that would look like etc. Physically? Mentally? Or to what extent we would see those deficits."