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*!

Animal Horns and Conch Shells

I'm watching, semi-watching, the semifinal match between the man of my almost dreams, Novak Djokovic, despite his horrid haircut and ultra-slim cut wardrobe, and the tenth-ranked Kei Nishikori, who seems extremely self-possessed, given the situation.  It's fairly early in the first set, I just got here, my attention waylaid by a fine early performance of Detective Goren in one of the first episodes of Law and Order: Criminal Intent.

You know back when he's still considered a nut job with nothing to offer.  As opposed to the later episodes where his status as a proven nut job has morphed into a touch-not reputation for pulling the improbable out of his ass.  His invasions of personal space, violations of suspects' DSM oddities ("pushing their buttons"), his empathetic powers that would render your average NYPD dick insane within the length of one long day, they can be sufficient grounds for keeping the television tuned on L & W: CI for a background marathon while I research the various and the sundry, in distress, in pain.  I can eyeball whatever suspect is being Gorenized in the Interrogation Room, and remind myself that things could be worse.  I could be in a room with gray cinderblock walls, a mirrored window, locked door, and Detectives Goren and Eames, his head cricked, all jazzy-handed, her neat, under-made self smiling at me like a hungry anaconda.

Nishikori is pissing me off. After a LUCKY first set win, despite his excellent play, and Novak's plethora of stupid errors, Djokovic handily stepped up and took the second set 6-1, at which point I indulged in a D'Onofrio rêverie of tics and lightening strikes of vulnerability.  Suddenly I discern a tiebreak going on, and in a ridiculous way, in the third set.  It is now set point, and I can't watch.

"Third set to Nishikori."

Bite me.

I know it means something when a person feels feverish but is in no way even close to being so.  I've felt weak and wiped out, working my way up the pain scale as if it were the easiest of climbing walls, with wild, nuclearized, toxic colors, grips of Seussian shapes, all horns and Roman clown noses.  I am broken. My instructions on being discharged Wednesday were to check back in at a local ER to resume intravenous antibiotics if (and we all thought "when") I had a fever of 100.4.

100.4 is nothing for me, or maybe the marker of a damn fine day.

I haven't been above 98.4 since we got home.  Despite chills, the aforementioned claymation approximation of a wild cartoon vertical cliff of pain, a weird appetite, the death of Brayden Martin, the relapse of Kate McRae, deep and abiding concern for my brother GB, weird episodes of suddenly passing out, having an arm not respond to my iron will, deciding that calling a doctor would just make everything incrementally worse.

I was explaining to one of the HMO doctors at their "overnight observation" facility how this all started with what looked like a huge abscess on the top of my foot, that presented itself as a volcano.  I apologize to you, as I guess I should apologize to the doctors for having only the word and image of "volcano" come to mind, as hard as this brain tries to offer another descriptor.  It looked like a freaking volcano, such that I thought, and hoped, that it might burst while I (again hoping) slept.  Instead it melted and turned the top of my whole foot red and painful, swollen and angry.

Her response?

"Do you have a picture of that?"

Did I have a picture of that?  No, I didn't think to capture that painful moment -- LIE.  I would have snapped it if I had two working hands and a camera that had not been dropped in soapy water!  Mostly because it's a weird thing to see a bluish/purple, slightly square-sided volcano sticking out of one's foot.  But over the past 12 years of having CRPS, seeing my legs and arms do weird things became normal.

Djokovic lost.  Rather, Nishikori did a fine job of winning.  Yes, Djokovic played badly, but had every opportunity to raise his game, and proved it.  He was out-played.

Now, to complete my accumulation of bad karma for the day, I am going to root against Roger Federer.  Or really screw myself over and wish him a tiring 5-setter with heat cramps, and an inexplicable case of recurring wedgies requiring the assistance of court side trainers, with Roger carefully hidden behind a wall of towels as he switched from wedgie shorts to wedgie shorts -- and then moves on to the finals only to lose against this very talented Japanese young man, Nishikori, in straight sets.

Yes, you read correctly.  The brave and steroid-bloated baby of an old soul, Brayden Martin, fell to an opportunistic pneumonia after being ravaged in brain and spine by odious cancer. I think he was all of six. I know he was wholly happy and attracted others who were happy, or needed to be.  He was a gifted air guitarist and was a freaking rock star. He needed to die and though I'm sure he'd have loved to stick around to watch the antics of his darlin' mother Maranda, and girl-magnet brother Mason, and nuggle in the arms of his grandma Robin -- he had plans for heaven.  Unfettered tricycling, soon to be a two-wheeler with snazzy training wheels, then, baby-wheels gone, pushed by angels with feathers flying wildly in the ether, finally pulling up alongside his buddy Nolan, lad by lad, finally free, finding the first off road exit from that boring cloud.  Thumbs-up all around, and a Di Fara pizza stand, straight from Brooklyn's Avenue J, perfect foldable plain cheese slices inhaled by these boys as they explore the lay of their new land.

There is a rain delay in Queens. So they are showing Federer and Monfils from... Thursday? The quarters, the round of sixteen?  Ah, Monfils, about whom I have conflicting feelings.  Sometimes, he cracks me the hell up, as he just did, calling for a review of a point he'd just won.  It looks as if the goofy, hot-and-cold Monfils is about to go up two sets to love. Federer had to dig himself out of a ditch, apparently.

I cannot sustain visions of an earthly heaven, not even to honor Brayden.  He's somewhere, and he's fine. His family has to stay here a while and right now their paradigm has been woefully insulted, and hearts, broken.

Kate began having seizures several weeks ago, after what seemed to be an uneasy good time, mostly filled with settling in a new place near L.A., new schools, therapists and doctors, and that weird feeling that something was wrong.  Every time they sought answers, problems were attributed to post-radiation and post-chemotherapy syndromes, sets of symptoms that complicate and depress, but do not threaten life.  But the seizures were different and the MRI was finally moved up, and showed new brain cancer, her third relapse.  Her spinal fluid showed no cancer cells.

These kids.

Ah, the rain delay is over, and Federer meets Cilic in real time.

I fret over sadness, and frustration with hands and legs, burning pain, and spasms, and whether I want to bother with continued treatment, anywhere, by anyone.  I think of the week my brother just had, and how I want to hold him in a way that would be foreign to us both -- but to which I'm sure we'd adapt easily.  I can't hang on to another soul for any meaningful length of time, and lord knows, he'd be darned uncomfortable. Just grant me a hand on his brow, a hand held briefly to hand.  This part of me does not work, whole sections of him are nothing but pain, it could be the weirdest of Twister configurations ever. Fitting!

And I dream every night some version of TW flying here, then having Captain Haddock ferry us from our murky moat, currently home to a sweet pair of beluga whales, to that Sweet Spot that heralds the worm hole entrance that loves to welcome Haddock's sweet pink miniature submarine, taking us there where we need to go.  "Ahoy!  I bring the siblings lost and found together again..." he hums as he pretends to navigate from our unmappable home to Grader Boob's hideout.

I cannot make it happen.
But it could happen.
That an accretion of stupidity and the idiocy of idiots gone before should hinder the reunion of such sweet souls?  I don't understand.

Good news.  My left hand has ceased copying my right, so I've a functional hand again.  I think I hear trumpets -- you know, the long silly ceremonial kind, or natural, chromatic.  Maybe animal horns mixed with conch shells .

Cilic is up 3-1 first set.

© 2013 L. Ryan

thinking of kate...

a quick note to ask for good thoughts, vibes, prayers, and meditations for kate mcrae, her mom holly, dad aaron, brother and sister, will and olivia.  kate began having seizures a few weeks ago, and instead of things improving, the seizures have become more frequent.  they may be a result of the intensive radiation she received and that sent her into a remarkably long period of remission, or... cure.  they may also be signs of a recurrence of her cancer.  until now she's been doing remarkably well, balancing physical therapy and a triumphant return to school.  she is again walking a tightrope...

Kate Mcrae on CaringBridge

holly's entry on caringbridge just a little while ago:

Untitled

By Holly McRae — 34 minutes ago

It's been unfortunately eventful. In short after an ambulance ride we are in the ER awaiting a transfer to CHLA for admission. They are hoping to repeat her EEG tomorrow while inpatient and hopefully do her brain MRI. There is much going on. Much to ask and pray for. Join us. Not least of all that cancer will not be present. And that they can stop these seizures for good. 

© 2013 L. Ryan

UPDATED POST: do what you do...

UPDATE 6/23/2013

hello, you gorgeous loving readers, you!  i don't have it in me to write a whole new post about "my" caringbridge kids and families, but there are some updates some of you may appreciate.

sadly, ashley riemer died yesterday afternoon, but on her own terms -- at home, with her family.  her decline was rapid, such that some may call it a blessing.  she was up and about, even out shopping earlier in the week, and then on the 20th was brought low by pain.  hospice was ready, and her pain was managed.

she was elven; she was on the cusp of womanhood;  she was brave, ardent, angry, faithful.  she knew long before the blood tests and the bone marrow biopsies that this was the last fight.  i'd love to have known her at 90 -- i imagine blond and pink pig tails, cherry red lipstick and those cutting, pixie eyes.

her mom wrote, at the end of her post notifying everyone of her passing:  "Ashley donated her body to Georgetown Medical University as she was a lifelong learner."  damn straight.  good on you, ms. ashley.

brayden is on his make-a-wish trip, and enjoying it thoroughly.  like so many of my heroes, he is keeping those he loves and who love him, in laughter, no matter what.  his mom, maranda, writes:

I hope you all have had a nice week. I am sorry I have not updated, we have been so busy. The boys go, go ,go and then they drop. Brayden is totally in love with Blue Skies. He now is asking me to buy him, a jacuzzi bath tub- which he does not think would be too expensive. He also wants a golf cart- which he said should probably only cost about 5 dollars. 

brayden and his buddy nolan (nolan had to be admitted yesterday
for pneumonia, so good thoughts for brayden's best bud)

that's the end of this update.  i've discovered that crying clears up my vision much longer than eye drops.  keep brayden close to your heart, and ms. hannah, too, as she is in the midst of the planned destruction of her immune system prior to receiving what the whole darned world hopes is a life-saving bone marrow transplant, the gift of an anonymous lovely, adorable man in europe.  her mom updated this morning:

One week down in the BMT. Hannah's doing better thanks to Reglan/Benadryl & Zofran. She will get Cytoxan and ATG today. Please continue to pray she tolerates with no/minimal side effects. 

END OF UPDATE... thanks for tolerating my lazy blogging.

********************************************************************************

To begin with, and this is especially important for those of you visiting the blog for the first time, I found the doggone ankle brace.  Rather, Fred found it.  There are certain loads of laundry too heavy for me to transfer to the dryer, so he's frequently in receipt of the cryptic request, "Please transfer." Well, as he transferred one bedspread, guess what fell out, now not only a boon to a cracked ankle but also sweet smelling and spotless?  Yes, the thing that mashes all those plates, pins, and screws back into non-jostling positions.

The other thing a new visitor to the blog should know is that I (Retired Educator, aka profderien, alter ego of one Bianca Castafiore, the famed Milanese Nightingale -- oh just read "About this Blog" over in the right hand margin...).  Hellfire. Choo?  Train of thought?  Ah, yes.  I follow, at any given time, four pediatric cancer patients, patients that are in the beginnings, middlings, and endings of their journey's trek.  My means of following them is respectful and done primarily through a wonderful creation and organization called CaringBridge.org.  Support them if you can, and definitely check them out.  Remember that CaringBridge is there should your family ever suffer a medical crisis or catastrophe and need a means to communicate news to family and friends -- as well as to blog and vent, and cry and beg for prayers, and send complete strangers into whirling dervishes of ecstasy the day you are declared NED -- No Evidence of Disease.

But give it some thought.  For parents with kids given tough diagnoses, it's generally not a good sign for there to be extensive or regular blogging and journaling on CaringBridge.  Who'd have time, what with time proved so precious, and the days being near perfect now that the little ones are getting better?

All of which means that bad news is coming in, thus far, in twos.  I'm bewitched into the "it comes in threes" belief, and am waiting for the third bit of sadness.

In the middle of it all, great joy!  For Kate McRae, another completely clean MRI of both brain and spine.  "Miracle" is not much in my vocabulary -- you'll note it's even set aside here with the embracing arms of quotation marks.  This may be one, though.  There's no way this child should be alive, and as untouched by the ravages of the chemo and radiation as she is.  Oh, she was touched -- there are struggles, daily, and sadness at what she cannot do that she once could, but she's ALL there, is Miss Kate McRae.  She is every bit herself, and we're better as a species for it.

Kate McRae

Why don't the doctors listen to the mothers?  Or are there so many mothers tugging at the pediatric oncologist's hearts, telling them they "know" something is wrong, the cancer is back.  They "know" it but the protocol for the chemo, or the radiation, or the study, or the only schedule that insurance will pay for... is every 3 months, or sometimes even six.

Maranda has been struggling for so long now, her son Brayden cruelly afflicted with Metastatic Anaplastic Medulloblastoma.  He has relapsed several times.  And now has again.  I am trying to arrange a meeting with her, as we both live southwest of the Lone Alp, but perhaps this is not the best time to pop in for a coffee.  She has a toddler, is a single, unemployed mom.

Anyway, for you to stare at, enjoy, and contemplate as you meditate and pray for Brayden, here is a recent photo of the little guy.  I love his face.  It's grown up but it's tricky.  I bet he's a trickster... Peace on you, Brother Brayden, and on your mom Maranda, and on his favorite little person, his brother Mason.

Now, I do have a thing or two to say about Brayden and Maranda.  They treat Maranda, it sounds like to moi, somewhat badly as she struggles to get to the clinic as scheduled, without daycare for Mason, and having been pegged an overanxious mother.  She asked them repeatedly to move up the MRI and was pretty rudely brushed off, with suggestions for therapy for anxiety or some psycho-crapo get-her-off-my-back shit.  The day of the MRI, same day as Kate's, his oncologist was out of town.  After they got home, Brayden, who has trouble controlling his bowels, needed changing and Maranda set about doing that... and in the process, his leg bent the wrong way, and broke, badly.  So back they went to the hospital... and she exhausted, and he in pain, and she could not stop worrying about the MRI results, even with the drama of the broken leg.

So a nurse finally prints out the MRI report and hands it to her.

That's how she discovers Brayden has indeed relapsed, and that's how that nurse got herself a few precious minutes of not being stressed out by Brayden's Mom and her worry-wart ways.

Maranda is smart as a whip but waited for the oncologist's return, and her phone call.  Today.  Monday.

Brayden's cancer is back.Dr A called me this afternoon. I will be going over options with her tomorrow, she is even calling St Jude's and MD Anderson, please keep praying for God to heal Brayden. I don't want just a little longer here with Brayden. I want a lot longer and I know that's not promised to anyone but if you could all please pray for that I would really appreciate that.

Jeez life is painful sometimes. It is worth it though, I feel like my heart is broken. I will update tomorrow with whatever treatment is decided.

The other person who is in decline is no longer a child.  She had leukemia as a kid, and relapsed once.  Then, last year, first year of college, it came back.  She only qualified for a certain highly experimental protocol, and I think she knew from the beginning of this latest round in the fight, this last trek as a pilgrim, that this was going to be her death.  But it is coming now so fast and furious that my heart breaks at the thought that she might not be ready.  Which is pretty freaking presumptuous of me.

All I can do is show you the picture that made me fall in love with her, and tell you that Ashley is now suddenly on hospice care and in severe pain.  She is from a very religious and faith-driven family and community, and I hope that is a source of immense and unending comfort.  Throughout the past months, she's pitched a fit to be able to attend her Japanese classes, and has kept the state of her coiffure right where it should be -- at the forefront of everything.  She's a beautiful nymph. You'll see.  You'll fall in love, too.

Ashley Riemer, September 2012

I write tonight with the news of the biopsy results from last week. Ashley's cancer in her bone marrow is showing 70%. This is very high and alarming. Ashley is now receiving Hospice care for pain. 

Ashley Riemer, May 2013

Prayer of Pan Cogito – Traveller

Lord

Thank you for creating the world beautiful and of such variety

And also for allowing me in your inexhaustible goodness

To visit places which were not the scene of my daily torments

- for lying at night near a well in a square in Tarquinia while the swaying

bronze declared from the tower your wrath and forgiveness

and a little donkey on the island of Corcyra sang to mi from

its incredible bellowing lungs the landscape’s melancholy

and in the very ugly city of Manchester I came across

very good and sensible people

nature reiterated her wise tautologies the forest was

forest the sea was sea and rock was rock

stars orbited and things were as they should be – Jovis omnia plena

- forgive me thinking only of myself when the life of

others cruel and irreversible turned round me like the huge

astrological clock in the church at Beauvais

for being too cowardly and stupid because I did not understand

so many things

and also forgive me for not fighting for the happiness of

poor and vanquished nations and for seeing only moonrise and museums

- thank you for the works created to glorify you which

have shared with me part of there mystery so that in gross conceit

I concluded that Duccio Van Eyck Bellini painted for me too

and likewise the Acropolis which I had never fully understood

patiently revealed to me its mutilated flesh

- I pray that you do not forget to reward the white-haired old

man who brought me fruit from his garden in the bay of the island of Ithaca

and also the teacher Miss Hellen on the isle of Mull whose

hospitality was Greek or Christian and who ordered light

to be placed in the window facing Holy Iona so that human

lights might greet one another

and furthermore all those who had shown me the way and said

kato kyrie kato

and that you should have in your care the Mother from Spoleto

Spiridion from Paxos and the good student from Berlin who

got me out of a tight spot and later, when I unexpectedly

ran into him in Arizona, drove me to Grand Canyon which

is like a hundred thousand cathedrals standing on their heads

- grant O Lord that I may forget my foolish and very weary

persecutors when the sun sets into the vast uncharted

Ionian sea

that I may comprehend other men other tongues other suffering

and that I be not stubborn because my limitations are

without limits

and above all that I be humble, that is, one who sees

one who drinks at the spring

thank you O Lord for creating a world very beautiful and varied

and if this is Your temptation I am tempted for ever

and without forgiveness 

--Zbigniew Herbert

Daisy Merrick

Kate McRae: NED, No Evidence of Disease

From Kate McRae's CaringBridge site, here is her mother Holly's update on the latest clean set of scans. Yes, 2 years post relapse, when her likelihood of survival was, honestly, nearly nonexistent, Kate goes marching on!

from the tiny sparrow foundation,
an organization worth supporting!

Kate's MRI was great, indicating no evidence of cancer! It was probably the most encouraging appointment we have had to date. Even good news has always been laced with the reality of heinous side effects. So after we gasp for air celebrating the clean, we simultaneously guard our hearts for the disappointing realities that may follow. 

But this was different. We spoke candidly about where we were, 2 years from relapse, and what that meant. And what the ugly treatment side effects meant for her now. Her Dr said the reality that she had survived 2 years post relapse, was incredible. Statistically that was few and fleeting. But he seemed even more surprised that she was thriving. I won't go into unneeded detail as some things we just keep close to our hearts, but he was positive. And hopeful. And then he ended with "now maybe I can say to a family that is not offered much in the way of statistical hope, BUT I know this little girl....." 

Oh thank you Jesus..

In the next few months we go back to tackling the issue of growth hormone and return to Houston for followups with her radiation oncologist and for a battery of neuro-cognitive tests. Praying for the same bit of impossible. 

Getting it all out, at once...

If you don't hate cancer, you ought to.  I take that back... maybe you are different from me -- it happens -- and you come at cancer with your love of life and a refusal of hate, a refusal to hate anything or anyone.

I'm resigned to not being that great of a person.  I've almost come to accept Nate Silver's probabilities that I'll go to Hell.

There is, right now, too much cancer in my life... and it's not even in my life, properly speaking.

It's in my friend Joyce's life, as she watches her husband Billy struggle to breathe and lose, perhaps thankfully, his grasp on reality.  She's amazing. Trust me on that...

Joyce and Billy on September 15, 2012

Joyce wrote on her Facebook page, this past Monday:

Billy's nurse just left, he has gone downhill very fast. She said there were NO lung sounds at all on the right and very little on the left. He has been out of it, talking to himself and people thats not there. He is sooooo worried about leaving Brian, when we ask him what he said he will say he was talking to Brian, and Brian isn't here. 

Brian is Billy's oldest grandson, who knows him more as a father...

Cancer is still in Kate McRae's life every day, too -- but she's been doing wonderfully, and hopefully will continue to be cancer free.  She and her mom Holly, and her dad Aaron, sister Olivia, brother Will are in the midst of that unimaginable angst of it being "MRI" time.  Oh, and she has pneumonia.  Holly wrote, a few days ago:

This will be 6 months out of treatment, and my heart continually reminds me that she relapsed at 9 months out of treatment last time. We pray for CLEAN scans. Not just to the Dr's eye, but that there would be distinctly no cancer cells left in her body. None. And no confusion upon reading the scan.

Kate McRae, courtesy of her CaringBridge site

HAPPY UPDATE for Ms. Kate:   "No Evidence of Disease!!!!!! Some of my favorite words!" Yayyyy!  That was Holly's tweet after Kate managed a 3-hour MRI without anesthesia, because of her pneumonia. The funniest tweet came next:

Kate: "Mom, I love you, by please don't shout it out about my MRI. They are strangers. You are embarrassing yourself. "

Not even close, Ms. Thang!

Moving on... of the other children I follow (I try to keep it at four... no idea why, but four it is) -- my personal hero, another Ms. Thang (check out her bangled-braceleted arm!), Hannah, has finished her chemo and despite a struggle with its side effects, is home.  Her nonchalance in the face of rotationplasty made me feel quite ashamed at my regret at losing a shoulder, and her courage before all that followed made me a teeny bit less self-absorbed, hard as that may be for my Dear Readers to believe.

Hannah's photo courtesy of her CaringBridge site

My third kid is also hanging in there, though his path is rough:  Sweet Braden and his super-courageous mom Maranda.  His most recent MRI?  Maranda wrote:

Brayden's MRI is completely stable. The Dr is very pleased. We are so relieved. Happy tears all around. Thank you is not enough, but it is all I have at the moment, plus lots of love from us.

Brayden's cancer, though, is not that simple.  But "stable"?  Hell, we'll take "stable."  Here's Handsome Boy:

Handsome Braden, courtesy of his CaringBridge site

 But... as reader TAM and I have commented, back and forth, both of us with the profound luxury of watching only selective truths, and from the comfort of our computers... it is grim with young Joey Keller.
I simply cannot bring myself to bring you up-to-date, if you have chosen to get news of Joey here.  I encourage you to go to his CaringBridge site as the situation is as complex spiritually as it is medically. Bless his parents and their faithful entourage, they cannot let him go... when perhaps, he needs to.  My worst fear is that he may want to, but is so tender-hearted, loves them so much, that he cannot say so, cannot give himself permission, lacking theirs.  This feels cruel to write, and a cold chill of guilt envelops me.  I cannot know or come close to imagining Nick and Elizabeth's tortured pain... but I *do* have a vague idea of Joey's, and that drives my cruel words.

Nick last updated the CaringBridge journal in the very early morning of November 7:

We saw the MRI. Major growth on lumbar spine, brainstem, and in temple regions sort of growing towards the center of his brain. It WAS in CSF kind of "on" his brain, now it seems its growing into and through his actual brain cells and tissue. Wicked, evil disease. We discussed hospice and the reports from all relevant medical teams was, "anything else we could do will cause more harm and damage than any potential for help or therapeutic upside." They do believe his unusually high heart is do to the cancer spot/tumor/lesion on or in his brain stem. We flat out need a miracle. Otherwise, what he will have to endure, systematic loss of brain and organ function, system failure, ventilator again, it's unthinkable. They were especially concerned looking at this MRI vs. the one just a month ago (brain) bc Its really moving quickly. We have got to pray. All those scriptures I looked up and listed in previous CB postings on faith and healing, haven't changed. The promises regarding healing...haven't changed. We've exhausted every medical option that exists (due diligence.) Now, We look to God to do what only He can. All day long I kept thinking about the Israelites looking at the Red Sea, the Egyptians racing to basically cut their throats or put them back into slavery. They thought they were dead. Or at best, had no idea how God would get them out this, this time. Slaves for 400 years, finally free, and now this??? To die here, like this? All day long I've been getting texts from buddies and pastors from those very chapters. Don't believe it's a coincidence. The thought keeps going through my head, if its not impossible, it's not a miracle. Thx for praying for our Joey.
PS- I have been inundated with emails and texts and VM's. thank you all so much for your kind words and for reaching out. I just can't get to them all. In time, I will read and hopefully respond to every one. There are some aspects of my job I must do everyday and outside of that, my time/energy is focused on Joey. I hope you understand. Please, pray. Just pray. Thank you.

Father and Son

"Toddlerish," Harrumph!

Courtesy of Colouring Pages

I've been remiss about updating the goings-on with Miss Kate McRae.  She and her family moved to California this summer, as her father is pastoring a new church.  That has meant many scary and exciting changes for them all, maybe especially for Kate -- new doctors, nurses, therapists -- the loss of beloved helpers and friends who were with her from the beginning, three years ago now, of her cancer journey.

The child has an attitude.  I love it.  I am also glad that I don't have to be on the receiving end of it, sometimes!

Anyway, we *all* have attitude, and Kate has earned the privilege of maybe developing a little extra.

I loved this story that her mom, Holly, told about two weeks ago, when Kate went in to one of her new facilities to have her port removed (a wonderful feeling, one of the few that I can truly relate to!).  It's obviously more of a big deal for kids than adults -- when mine was removed it was the most ho-hum procedure ever.  And except for the infection (but, of course!) afterward, it was just a wonderful breeze.

Kids, though, may not hold still, may get upset, and may I-don't-know-what-else, so they're put briefly under general anesthesia to yank that old port-a-cath out.  For these kids on the cancer journey, it has such significance, this small procedure.

For Kate, it's a mixed mixture of mixed up feelings, I presume.  She is off treatment:  She has no sign of tumors (yay!) (oh heck, double yay!) but she is at very high risk for relapse, however there really remain no more appropriate, available protocols to keep her on, so stopping treatment is terrifying for her parents.  What Kate feels about it, I cannot, and wouldn't dare, imagine.

But -- whatever -- getting that sucker out of your chest wall, and its tentacles out of your major blood vessels?  Cool, no matter what. Just as my Dad and my brother Grader Boob managed to convince me that I could see the men walking on the moon through our backyard telescope, I imagined I could feel the tissue surrounding that BARD port-a-cath laughing and doing cartwheels when it got yanked.

Kate had a rougher time of it, I am sorry to say.  As usual, Holly tells the story best, having been there, and understanding her daughter in the deep way that some mothers can:

Our sweet girl had a big day today. A big day that started crazy early. We headed out at 4 am to go to CHLA for surgery to have her port (a central line catheter in her chest) removed. 

Yay!! 

As one of the nurses came in to evaluate her, and ask the same questions the 3 people before her had, she eyed Kate's demeanor. She softly suggested ordering Kate a mild sedative prior to surgery, thinking she was highly anxious about the surgery, as Kate sat with her with her arms crossed facing the wall. A frown prominent on her pretty little face. I smiled and told her I didn't think she was nervous about the surgery at all, rather she was simply very disturbed by the surgical gown. Kate validated my belief and said she felt it was "toddlerish". I laughed as I relayed the information, however only adding insult to injury. So no sedatives prior were needed, rather promises of possibly one day coming up with a little more "appropriate" gown choices. She was simply upset they would think it was okay to make 8 year old girls wear babyish gowns, especially without undergarments! She wasn't disturbed at all by the idea of general anesthesia and surgery. 

Kate did super well through surgery, Dr Stein was wonderful and even cleaned up her scar from the previous surgeries.  

Tonight she is sore but spicy! (How I always know she is really okay). Thanks for praying. Will update more on Friday as we reach 3 years since Kate's first diagnosis of brain cancer. 

Childhood Cancer, Humble Heroes

Dear Reader, use your influence in the universe, in God's World, with whomever you house in your Pantheon, on behalf of 7-year-old Derek.

I am following the journey of four children with cancer, something that began with Layla Grace, who lost her battle before the desperate hearts of many bloggers and tweeters, as her parents shared her with us, selflessly.  In so doing, they managed to explode a good many preconceptions while reinforcing some comforting old truths.

Layla and her Dad 

I've posted regularly about Kate McRae -- who is entering a new and unknown phase after receiving unexpected and delightful good news.  All while being glad and learning to cherish a new normal, her parents are having to contemplate possibly stopping a good portion of her therapy.  Mom Holly has left an incredible journal of faith, anguish, and celebration at CaringBridge.  Yesterday, she wrote:

Our options are few... taking her off treatment all together and watching to see if tumors that have had time to grow resistant to the treatments grow. Or to find a new treatment. She is currently not eligible for any medical studies, as there has to be measurable disease on a brain scan, a reason for which I am entirely grateful she doesn't qualify. This leaves us to choose from less than ideal treatments, or foregoing treatment. Both with their own unique troubles.

Derek was in Florida, vacationing before travelling to Boston for a new treatment necessitated by a vicious return of his cancer, and began to have unmanageable pain.  Home again, a morphine drip eventually made him comfortable.  His trip was scheduled for yesterday, but Derek had a "massive seizure," and plans were changed.  He and his family are feeling the sudden shift from pursuit of a cure to palliative care.

The word 12 hours ago was that Derek is "resting comfortably" in the hospital, where he stayed overnight as a precaution.

He's a plucky boy, very bright, blessed with a family of depth, humor, and heart.  I've marveled at him and all of them many times;  I've tried to learn what they have to teach, as they smile through the tears.

This Friday, Hannah, who has osteosarcoma, will have a major, life-changing surgery called rotationplasty.  I will be honest:  Even knowing that this decision was made by wise people who love and are invested in Hannah, hearing about this radical surgery coincided with some preexistent nausea and I lost it.  Since then, respect for her bravery and for her desire to live life after cancer in as unrestricted a manner as possible has replaced my initial wimpy somatic reaction. Hannah's Mom has recommended this video for folks to learn about rotationplasty:


Uploaded to YouTube by mayoclinic on Sep 3, 2010:  "This is a pre-surgical video which describes rotationplasty, who the procedure is appropriate for and possible complications. This video depicts the process of being fitted for a prosthesis and learning to use it. The patient describes her active and satisfying life after rotationplasty, her emotions and the process of adjusting to living with a prosthesis."

The fourth child I follow is a complicated Little Man.  His situation is complicated by the complicated socioeconomic factors at play within his family. It's all so... complicated.

More than any other child I've followed, this kid has been subjected to medication and treatment side effects that out-demonize even cancer.  I've come to love his Mom, and her pluck, her persistence in the face of All That Is Unfair.  I've come to understand him, knowing something of life on constant steroids, understanding how the face in the mirror came to be that of a stranger.

So these are the four young ones that I "follow." I don't stalk, I don't contact them or their families except occasionally through a comment in their CaringBridge or CarePages journals.  It would certainly creep me out to have a stranger jump into my concerns -- and these sites are set up to provide patients and families with a good measure of protection.

Derek's family is so warm, so desperately funny as they travel with their "special boy."  They would go to the ends of the Earth were there a treatment available for him, and are now brought up short by the realization that the treatment phase has passed:

The twist to the story, or the change of plan, is that Harvard is no longer an option. We have nothing left in our bag of tricks. The doctors indicated the disease is progressing faster than they anticipated. We need to enjoy every day and make it count. God has other plans for Derek.....see, I knew that boy was special.


But while God has plans for him, Derek is still here, and still in need of prayers, though no longer for a cure, but for peace and comfort.

Please continue to hold him in your hearts.

Thursday at One

From Holly Mcrae's most recent update to her CaringBridge journal about her daughter Kate's journey with cancer:

[She shares how God has led them thus far...]

[T]here are days I fear losing sight of what God has done for Kate if I don't voice it. If I don't reflect on His provision in the past, and trust He will continue to carry us into the days ahead.


My reflection is due in part to the angst for the days ahead this week. First, Wednesday Kate will go in to see if her kidneys are strong enough to receive the current chemotherapy she is on. We opted to take it a month ago, despite guidelines against it. Two weeks ago, we didn't. And the drug was held. If her labs are not within parameters for her to get it this week, we will be forced to discuss the possibility of discontinuing this treatment.


I have spoke to various institutions and am so grateful for their kindness in helping us sort through the very limited treatment options for a recurrence of this disease. Our most likely option would be to stop all treatment and watch and see if new tumors arise. Exhilerating to think of her not being on treatment. And equally as overwhelming knowing the heavy risk involved.


Which brings us to the MRI. We have opted to move it to this week, as there has been significant changes in the strength of her right leg. It is tremendously frustrating for Kate as she sees the last year of therapy quickly slip away in an instant. It's gut wrenching for us. So this Thursday at 1:00 she will be getting her full brain and spine MRI under general anesthesia.


Not much else to say... the implications are enormous. And our hearts feel them well. The emotions hit erratically and without warning. And yet I would be remiss to not say that we feel your prayers and love for our family. God will continue to be faithful, regardless of test results. We continue to cry to Him for mercy and healing for Kate, knowing He is able. Cry out with us. He hears the pleas of His people.

photo by holly mcrae

"...today was so sweet"

Thank goodness the rules of journalistic integrity and basic good writing don't apply to me.  For those of you too doggone lazy to click your way over to Holly McRae's Caring Bridge site, dedicated to her daughter Kate and the journey through the world of pediatric brain cancer... Well, allow me to pilfer Holly's latest journal entry in its entirety. without failing to steal even a single syllable as she shares Kate's latest MRI results:

I find myself at a loss for words and overwhelmed with quiet emotion. We met with Kate's oncologist to review the MRI today and received the incredible news that the MRI looked the same as the last one! There are no new tumors, and the two recurrent, metastatic ones are not visible on the scan anymore and there has been no change in the original tumor bed. All very good news!

It was the first time we even talked much about where we go from here at an appointment. We did decide we are going to continue on the same treatment for now, and continue with 2 month scans. And somehow that sounds wonderful. 

Very rarely have we looked at Kate's brain scans and smiled. Oftentimes we have viewed them through the cloud of tears. Not today. On the images you can see the surgical area, and the changes that have inevitably taken place in her brain. But the fact that the original tumor area has not changed most definitely evoked a huge smile. And of course we asked, "do you believe that the remnant in that area could still be cancer, or rather changes to her brain?". He replied we haven't proved it isn't cancer, but we haven't proved it is either. However, he would lean more heavily toward it being scar tissue, as opposed to cancer. Of course what we wanted to hear. 

So I inevitably know people will wonder what this all means, for now and for the long term. First, it means we are incredibly grateful for more time with our sweet girl. And we are thanking Jesus for that sweet gift. It also means the radiation had a profound effect on the metastatic cancer lesions. And there is the possibility that the area of change they noted last February in the original tumor area is simply changes to the brain from treatment. Here is the hard part. We have still only heard a 5% survival. Talk about hard to digest! However, we didn't even go there today. We did talk briefly about possible other treatments in the future, if need be. And the reality that if these stable scans continue at some point we will need to stop her current treatment. Most attempt to stay on it one year. Some have gone longer. No one knows how long kids can stay on it. So we will cross that bridge when we get there. But that will be a great crossroads to get to.

For tonight, we celebrate one more step. One more sweet victory. This is the fourth consecutive scan with no change in the original tumor, and the disappearance of the 2 new tumors since the full brain radiation. For tonight we will leave thoughts of the future alone and celebrate the sweet grace we have been given today. Thank you for persisting in prayer with us. We have a long road still ahead. And yet today was so sweet.

Perfidious, Jaded, Scrooges, Defenders of the Faith, and All: Let's!

This photo was taken on October 23, 2006 in San Francisco, California, US by The Jof.

Kate McRae has another MRI of her brain and spine tomorrow morning.  I cannot imagine the stress she must feel in advance of these tests, and her mother Holly writes in her Caring Bridge journal that the last few weeks have been difficult as their anticipation grew.  She tells us, however, that:

[T]omorrow has fast approached, and a sweet peace with it. We are far less anxious than last week. I have no doubt the result of many prayers manifesting themselves as very real in our lives. We will find out the results to the MRI tomorrow afternoon at 2:00 when we meet with Kate's oncologist to review the scans. We would love your prayers. Prayers for Kate's full and complete healing here on earth. The statistics are terribly grim. And yet, we pray. And ask you to join us. Thank you, and we will update tomorrow. 

The McRaes have established a Christmas tradition in Kate's name, through which they are helping other families dealing with pediatric cancer. [You can read about the beginnings of this project HERE.] I've copied the details below about how to participate in Kate's Crazy Cool Christmas 2011.

C'mon, My Dear Readers -- Perfidious, Jaded, Scrooges, Defenders of the Faith, and All -- Let's!  Let's!

We can participate:

Kate

1. by donating any assortment of new toys, movies, or games for the families. Everything must be new.

2. by donating gift cards to grocery stores, gas stations, and various stores for the families (ie. Walmart, Target, Starbucks, Visa, Clothing Stores, or Sporting Goods stores, Barnes and Noble, Amazon and various Restaurants). We need lots of these to provide for all of the families.

3. by visiting Sign Up Genius  to donate a very specific item for a family. MANY more items will be added in the coming days and weeks.   

ALL items can be sent to:
Kate's Crazy Cool Christmas 
PO Box 220 
Higley, AZ 85236

Hillbilly Handfishin' and Some Good News for Kate! Woo Hoo!

Kate, 9.13.2011, "Waiting to hear..."

Good news for the McRae family and their many friends and supporters (We're everywhere!):  Daughter Kate's MRI yesterday was unchanged from the one in July.  Her mom Holly explains in her journal post on CaringBridge how difficult it is to plan treatment in this type of cancer after remission.  They've decided to continue her current chemo regimen for a year, contingent on continued good scan results.  Her next scheduled scan is in November.

Her father Aaron tweeted yesterday, as they faced the anxious period of waiting for results:

Hoping @hollymcrae and I can watch another episode of 

'Hillbilly Handfishin' to distract ourselves tonight!

{rolling::eyes}
Say it ain't so, Aaron and Holly, say it ain't so!

This whole family is on a journey and so here's a shout out to Kate's Most Excellent Siblings -- Olivia and Will.  Maybe the three of you can influence your parents' television choices?!  As always, Kate, you are very special and much loved by everyone here at The Manor.  Keep up the great work in school and at therapy.  I so much admire your good attitude, too, about chemo and all the testing, appointments and stuff.  My dear friends Captain Haddock and La Bonne et Belle Bianca Castafiore are also big fans of you and your family, and want to send along their best wishes.  The Captain is thinking of naming his next miniature pink submarine The McRae, and Bianca loves to sing "Little Light" in the shower...




Uploaded to YouTube by Brian Wurzell on Jul 12, 2009

This song was written by Audrey Assad, a Nashville Singer-Songwriter, during an online Global Night of Prayer for Kate McRae. The lyrics came in one pass that night and the chords/melody came the following morning.

 Little Light

(Audrey Assad)

                                                                                                                                                 Look at all the angels watching you

They’re singing songs that we have never heard

Their voices ring like bells over the mountains

Oh, if only we could hear their words

God is near, little girl.

                                                                                                                                             Your eyes are brilliant, deep sky blue.

Your quiet wisdom is an evening song.

The angels must be breathless at your beauty

Like the world catches its breath before the dawn.

God is near, little one.

                                                                                                                                             And Jesus bends to hear you breathe;

His tender hands are holding you tonight.

His heart is ravished when you look at Him,

and oh, the endless mercy in His eyes;

God is here, little light.