Nolan laughing...

Nolan's mother Brittany wrote:

A few years ago Nolan was laughing hysterically on the couch and I couldn't help but think I better catch this on video. What if he looses his ability to laugh one day? I found it today. With tears streaming down I just listened to it over and over… I miss the sweet sound of his voice.
Brain tumors can take away your ability to walk, talk, eat, show emotions, smile, laugh and the list goes on…

Nolan is not doing well, so laugh for him today, send a good thought, send a prayer.  He and Brayden Martin are good buddies.

Nolan Blake, April 27, 2014

Brayden Martin and Nolan Blake
April 2014

A Note From Joey's Dad

3-D mold of Joey's thumbprint

It cannot have been just last November that Joey Keller died.  It was such a prolonged agony, in the most basic of the etymologies of agony, that my mind had hid it away.

When I don't get a CaringBridge update notification for the children I follow there, I tend toward hope and don't think much about them.  When we drive by the local huge Children's Hospital here in Tête de Hergé -- where there are only tonsillectomies performed and broken bones fixed with psychedelic splints and casts -- I do remember them, back in that other world where kids get cancer and sometimes die in the middle of their youth.

I confess to looking at pictures of Daisy Merrick rather frequently, but for the smile she brings. None of us are naive enough to avoid our private picture book of what she must have looked like at her end, and no reassurances by preacher men and preacher women, even when they are that child's parent, can fool me. I've seen Death.  So have you.  But those are the pictures we've been given as fodder for the dark.  Daisy was, when vibrantly alive, nothing but light.

Anyway, Joey's Dad just about drove me insane in Joey's last months.  How dare he?  A man with scientific gleanings and leanings, he was, and will be again, a believer in miracles.  L.I.T.E.R.A.L.L.Y.  To such an extent that I prayed for Joey to please die.  I did that once, because as you know, that's the extent of my praying -- if, in the great crap shoot, he's aware of such needs; if, indeed, such needs even matter, then praying once to omniscience and omnipotence ought to square things.

I don't believe Joey's Dad ever slept.  He kept on working, too, for many reasons, I imagine, insurance coverage likely topping the list.  But his devotion almost bordered on abuse, to me. To me, I say.  He was pure love to his son and his son reflected pure love back, but you could also see in his wizened yellow face that he had had it.  But they clung, so... Well, isn't this an old tired story?

Anyway (the best of segues), he posted something tonight on CaringBridge and I want to pass it on, for those of you who may have followed Joey's story at the reserved distance of an odd blog.  Note that you don't hyperventilate while reading him.  Note that he's in a place I cannot imagine -- but then I cannot imagine any of the places he has had to traverse in the last five, six years.

I wrote him a comment, something I rarely do on CaringBridge, particularly when the parent or person blogging there is very religious, as my propensity to say something perceived as uncaring becomes an insulting danger that I just don't want to risk.  "You write well," I said.  I told him that I hoped he would keep at it.

Of course, this was also a ploy to not have to go to Facebook to follow the foundation doings that are getting underway in Joey's honor (Legos, what else!?).  I hate Facebook like I hate telephones and their bad news and their insinuations, like I hate the noise of the mall.  I prefer CaringBridge and the illusion of intimacy.

Nick, the dad in question, has shortened Joey's "Story" on CaringBridge to this:

 Joey lost his battle to medulloblastoma November of 2012. I wish I could list the stories and testmonies of all of us that were inspired to live better because of watching Joey's short life. His positive attitude was contagious and he wanted to encourage everybody he came into contact with. He inspired Elizabeth and me, more than words could ever say. Joey's attitude, faith, and generous spirit lead to the creation of TEAM JOEY, a not for profit (501c3) organization dedicated to getting Legos into the hands of every child battling cancer, and funding research to END pediatric cancer, once and for all. See link below:
http://www.HeroesFoundation.org/Programs

And of the many fantastic photographs they captured of their son, Nick and Elizabeth chose this one to head the new page:

This is what Nick blogged about today, and, again, if anyone wishes to hook up with CaringBridge, it's an easy site with which to register --

touch base-
Written 2 hours ago 

I'm not sure if anybody reads this anymore.  Many have told me they miss us sharing and asked that when we had a moment, to share a few thoughts. The support and prayers we got from this site (all of YOU), when we were going through the darkest and ugliest experience I could have ever imagined, was unbelievable.  We jumped on tonight for several reasons, the main one being to thank you all for your prayers.  Throughout Joey’s battle, when we got good news, you were there, praying and celebrating.  When the doctor said, "It's all over his brain again," you were reading and following…and praying.  And even as Joey suffocated in our arms, you were praying for Elizabeth and me.  Thank you.  Even now, we read messages from those who understand...who get it.  The pain doesn't go away.  It just doesn't.  Elizabeth and I were talking the other night that we don't think we'd ever want it to.  It's the most unbelievable dichotomy.  To remember him (which is at least every 5 minutes) brings incredible joy and memories that are so good…I get caught in public thinking of him...and smiling....and then intense, searing pain through your heart.  He is gone.  How did this happen?  Our son, our life in so many ways is gone.  We were at dinner with some really amazing people the other night, and we were explaining how it really wears us out to hear people give the typical pat answers, albeit maybe true comments, just not necessarily encouraging ones.  Our friend at dinner said the pain and loss you feel is proportional to the love you had for him.  I do feel bad for the people who just don't understand why we can't just move on, suck it up, and “get to work on God's calling for our lives.”  Not sure they'll ever get it.  When you love someone, really love someone, you give them your heart.  Your commitment to always be there for them, to ALWAYS do what's in their best interest, and to never leave them or forsake them. I wanted nothing in life more than to be a dad.  A good dad.  You wouldn't believe the books I had read, before and after Joey was given to us (born)....the small group studies at church on fatherhood I had gone to...the literally stacks of journal notebooks I have in my office, filled with my handwritten notes from books by Eldridge, Morley, and Dobson, on how to be a dad that God will be proud of.  Nobody wanted to be a good dad and took the job more seriously than I did.  I can say from seeing it first-hand, no one wanted to be a great mom than my wonderful wife.  Why did this happen?  How?  Of course, there is some solace in knowing where he is and that he can't suffer any more.  And we know we'll see him again.  Certainly, knowing how happy he must be in heaven makes us smile.  But we are here.  This is now.  And as long as I'm alive, I'll be without my son.  My family tells me that when I was little, I was always laughing and having fun. That every picture in our albums from childhood shows a big smile on my face.  I do love to have fun and always have pushed the envelope when it comes to pursuing it.  My body has the broken bones and neck, a four level spinal fusion, and scars all over to prove it.  I told a buddy of mine the other day, when trying to explain how I felt (he asked), life just isn't fun anymore.  The joy is gone.  Oh, I can put on a happy face with the best of ‘em, but on the inside, we are still very torn up. I am not too proud to ask for your continued prayers. 

I changed Joey's "My Story" on this CaringBridge site.  Elizabeth's been after me to do this for some time.  We are excited about TEAM JOEY and the kids who are and who will be touched because of Joey’s amazing heart and vision.  We did our first "Lego give" at Peyton Manning Children's Hospital a couple of weeks ago, and RileyHospital is next week.  We are excited.  Joey would have LOVED shopping for the kids, handing out the sets, visiting each room, and praying for the kids. He was so much younger in “years lived” than I am but about 50 years older than me in spiritual maturity terms.  What an old soul. 

I also wanted to let everybody know that, as far as updates for TEAM JOEY and Heroes Foundation, you can find us on Facebook.  We don't have to be Facebook friends for you to "like" the TEAM JOEY Facebook page and receive that latest updates.  I know there are some circumstances, HIPPA considerations, professional restrictions, and other good reasons where people can’t be FB friends, you can still plug in to the TEAM JOEY page. We are contemplating a TEAM JOEY website; but frankly, most people communicate and get a large part of their social information and interaction from Facebook.  I think, all Facebook asks for is just an email address.  And they never send you anything.  It's about as safe as could be, YOU control what is shared.  Get an account, and follow TEAM JOEY on Facebook! Look for: “TEAM JOEY, A Heroes Foundation Program”

Many have told me that I should continue to blog on here.  It got me through some really difficult times, and I'm sure would prove therapeutic now.  I gotta be honest, I wasn't gonna say all that tonight; I was just going to sort of point everyone to the new Facebook page.  We'll see how things go moving forward.  Living without Joey is really tough.  Some really thoughtful families and friends invited us over for Easter.  For several reasons, we just wanted to kind of hole up and rest and shut the world out on Sunday.  We started off strong, then there were TV sermons and shows about Easter, and then the memories of past Easters...nine of them…and I found myself sitting alone on the couch, holding an 8x10 of him, just blown away...he is really gone. This is permanent.  I can’t hug him, or rub his bald head, or talk to him, or hear his laugh or him singing the Ninjago song. We used to have some of the most amazing talks. He would ask me questions that were so complex and deep, that I swore I was talking to an 80 year old man.  All that said, I AM grateful for Easter because it is truly the hope that I have that I'll see my buddy again.  I would be lying, however, if I told you it was a good or easy day for us. 

In a day and age where everybody’s selling the illusion of control, I knew this posting wasn't going to inspire anybody.  But I had to be honest, and I do thank you all for asking about us, for asking us to continue to share our journey, and, most of all, giving us the space and grace to grieve.  We do, still, have MUCH to be thankful for.  At the top of our list is all of you.  Talk soon!

Hannah's Crane

From Prayers for Hannah
[Hannah is Prof-de-Rien's Hero!]

Crane Stance Bronze
Attributed to Dimitri Chaparus

photo by chris hartman

Master John Holden

Pencil and Water Color on Paper by Patrick McColley

Novel Journey

At the Canterbury Music Festival/Roger Gemelle

Portland Kung Fu Club Photo

Uploaded by jonakashima on Sep 12, 2009

How to make a traditional origami Tsuru (crane)

Four Days Post Rotationplasty: Go, Hannah, Go!

Hannah's Mom updated her progress again today.  From home! My admiration grows with every communication detailing this young girl's courageous journey.  I've copied below the section that I find most inspiring, as it details some of the intricacies of adjusting after rotationplasty -- an orthopedic surgery I'd never heard of before being referred to Hannah's CaringBridge Journal.

[In case you were wondering how I "pick" the four kids I follow, I don't -- not in over two years, anyway.  I wait for the day when one child's journal entry asks for intercessory prayer on behalf of another child.  I'm all about referentiality, "degrees of separation."]

If you decide to follow Hannah, please be a faithful cheerleader.  In the days and years ahead, there are going to be some rough times of inertia to offset the many good times of clear and positive progress. But be real... I think this kid is equipped, not just with a "new" leg, but with all kinds of radar!

This amazing child, only 4 days past her rotationplasty, was able to leave the hospital and go home. Now that her body has changed so dramatically, we are all in a bit of a learning curve as to how to navigate the logistics of everyday "normal" life. I will never again take getting in and out of a chair for granted. The amazing thing is that this girl is able to get in and out of her wheelchair on her own, with only the help of another person to balance her. I've taken a few videos that I'm going to try to upload to YouTube so you can see just how determined and strong she is. The only physical difficulties she is facing at this point is the splint on her "new" leg-which must stay on at least 2 weeks-maybe longer. She's wrapped from her rotated foot all the way up to around her hip and waist. That makes navigation challenging at best. Also, the thigh muscles are having to be retrained b/c they aren't really thigh muscles--they're actually calf muscles. We're having to train them to go in the opposite direction than normal. This is a challenging and painful process but she's doing exercises to help with this. Once the splint is off, she'll then have to train her ankle muscles to go the opposite direction as well. 

Derek

Posted as an update this morning:  He's gone.

Derek Ellerbeck

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

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.

Righten the odds

I thought nothing could get to me.  

Oh, it's okay, Dear Reader, my "jumping off" remains a trustworthy fact. But something did almost scare me to the point where I considered failure a decent enough option.

Shame stopped me, and stilled me, and brought me back to reason -- if, indeed, reason embraces notions such as God, and God's grace.

If, indeed, reason covers Kate.

I'm putting my newfound sobriety (oh, shut up) on the line and saying, "yes, reason covers not just a multitude of your miserable ass sins, reason also covers the unsullied, the babies, the loving mothers, the faithful fathers... yes, reason covers radiation and chemo therapies, covers the good doctors, nurses, aides, and techs... yes, reason covers daughter sisters and son brothers... and most definitely, reason covers kate.

I checked my email for the first time today (instead of the addicted hourly regimen followed by my Former Junkie Self) -- at 19:00. At roughly 19:00:23, I thought of my own failure, and how much of a likelihood it would become were the message I was about to read a very difficult one.  All I knew at that point was that it had been just over a week since Holly McRae had posted an update to her journal about Kate's journey on CaringBridge.  It was my catastrophic bent at that second to think the very worst.

I beg Holly's pardon as the necessary shift to it's-not-all-about-me takes hold. 

This is the entirety of what she posted (forgive me for that, as well) and if you've never met Kate through her mother's words before, consider a trip over to the CaringBridge to read all of her journaling.  It will move and inspire you.  It can almost make a believer out of anyone, just to righten the odds.

I continue to find it harder and harder to update. Not for lack of things happening, and most definitely not for lack of emotion, simply for the lack of words. No words seem adequate for what our hearts feel, on the good days and on the awful days. It is a constant daily battle to reign in our thoughts and fears concerning Kate. Being that I am the one who engages more of the medical side of Kate's diagnosis and reads more of the literature concerning it, I tend to struggle with it more heavily.


Kate is doing well. Of course everything is relative, and that being quite relative to her diagnosis. We are grateful the last chemo did not cause more symptoms or side effects in Kate than it did. She is easily fatigued, which is probably more related to the radiation, and continues with stomach pains here and there. Her appetite is unpredictable, so again we are having to be less strict with what she eats, simply to get her to eat some days. I have noticed that she also seems slightly less engaged with others outside of our home. I am not sure as to the reason, and have stopped guessing. I simply cherish the moments we see her full throttle at home.




Kate was horribly disappointed to learn that she would be getting chemo again this week. I guess she had forgotten. We had not! It has been a delicate dance learning to be grateful we have something to fight with, while at the same time despising those very treatments. She will have her bloodwork drawn on Tuesday to see what effect the chemo had on her blood counts and then proceed with the infusion of her biweekly chemo. I am sure we will also discuss a starting date for the Avastin, and begin scheduling her next MRI. We are obviously no longer on the every 3 month plan for scans. I was actually hoping for monthly MRI's and have realized that 2 months for now is probably best. It is a very delicate balance not scanning too early, and yet not allowing too much time to pass if cancer is growing unnoticed. If we scan before we allow time for the chemo to have an effect, there is the possibility we could see growth and take her off of one of the few medications that may work. The reason for not desiring to scan too infrequently is obvious. So our thought is her next MRI will most likely be early to mid July.




This month marks the 2 year anniversary of Kate's diagnosis. God has been working ferociously on my heart the past few months concerning just that. The disappointment and at times anger for that which she is faced. How we had hoped and prayed that at 2 years we would find our sweet girl cancer free, that we would be celebrating God's faithfulness and His mercy in allowing Kate freedom from the clutches of this disease. Rather we find ourselves battling 2 new tumors and facing the uncertainty of an aggressive and unforgiving disease that almost always ends in death. We find ourselves facing the ramifications of having had to aggressively radiate her entire brain and spine in hopes of sparing her life. We find ourselves craving the days past where getting the tangles out of her curly blonde hair was the most frustrating part of the morning. Now we wonder if her hair will ever come back.


And yet, despite our raging disappointments, God continues to be faithful. And He most definitely continues to be able to heal her. As much as my heart yearns to see her walk again without a brace and to see her right hand paint so beautifully as it once did, I am reminded she also faced a day she could not move her right side at all. A day when thoughts plagued us if we would ever see her move outside her wheelchair. If we would ever hear her sweet voice utter our names again, or tell us she loved us. So we celebrate the blessings mixed in with the current pains. We continue to fight for her life, and for her quality of life. And in the same breathe realize this life is not our ultimate home. Never have I been more grateful for that.




Tomorrow we celebrate a very sweet day in our daughters lives. Aaron will be baptizing both Kate and Olivia. So tomorrow we celebrate those things God has done in our daughters lives. And the rest of the week we continue the treatments hoping and praying Kate will have a lifetime to share those things with others. Thanks for being persistent in prayer for Kate's healing.

A Good Day For Kate ♥

Psssst!  Kate had good scan results today!  See the journal entry over at CaringBridge...

*kate*
Thanks to CaringBridge and the Tiny Sparrow Foundation *

* The Tiny Sparrow Foundation:  "a non-profit organization dedicated to providing lasting memories through the art of photography to families whose children are facing life threatening illnesses."

Holly McRae: Update from Hawaii

Holly McRae updated her journal over at CaringBridge today with a profoundly moving entry on her daughter Kate, their "sweet girl." The whole family has been on vacation in Hawaii, swimming with dolphins, relaxing -- but never really escaping the reality of pediatric brain cancer.  They are headed home in a few days and back to tests, procedures, and treatments.

Holly is an amazing writer and a more amazing parent, mother.  Today, she seemed to feel it necessary to defend herself for being honest -- even when her honesty is so infused with integrity and faith that my spirit is inspired, no matter how sad the news. 

I know her statements today must reflect some unkindness that she has encountered, perhaps someone's refusal to meet her where she happens to be, or -- worse -- someone's judgment of how she and Aaron have painstakingly chosen to proceed.  And that makes me really sad... but mostly angry.  (As much as Holly inpires me, I clearly have a long way to go...)


Link to Kate's CaringBridge Page

Pray and Fast for Kate on Monday, February 7

Kate Mcrae's PET scan is scheduled for Tuesday, February 8.  This brave seven-year-old has a rare and aggressive form of brain cancer that has returned despite surgery, chemotherapy, and radiation.

In her journal on CaringBridge, Kate's mom Holly has shared how hard this time is, how many decisions need to be made, and how they continue to pray for a miracle.

We have been contacting various healthcare specialists around the country researching potential options, as Kate's healthcare team does the same. If things would proceed in an undesirable direction, we will need to be making rather informed, but quick decisions. We continue to cry out for healing for our baby. It would be nothing short of miraculous for the PET scan to come back not indicating cancer. We are boldly praying for that.

Kate's father Aaron has asked for those who are willing and able to join them tomorrow in a day of prayer and fasting.  As always, this faithful couple has imbued their prayer with specifics, something that has always delighted me and been a real help when storming heaven on behalf of Kate.  I'm pretty sure God finds my efforts much improved when the Mcrae's needs keep them focussed and appropriate.  Aaron writes --

Here are a few requests for those who will partner with us:


For Healing… for Kate’s complete healing from top of her head to her toes
Psalm 107: 19 Then they cried to the LORD in their trouble, and he saved them from their distress. 20 He sent forth his word and healed them; he rescued them from the grave.


For Wisdom… for Holly and I, for the doctors, and people we consult with
Colossians 1:9 For this reason, since the day we heard about you, we have not stopped praying for you and asking God to fill you with the knowledge of his will through all spiritual wisdom and understanding.


For Jesus to be Glorified… for Christ to be seen as POWERFUL & to be praised
John 11:4 Jesus said, ‘This sickness will not end in death. No, it is for God’s glory, so that, God’s Son may be glorified through it.’

Again, I want to thank the countless people who have prayed and encouraged us for some time. We would be honored if some of you could join us in this day of seeking God in prayer and fasting. Please pass this along and ask others. If you need some guidance in fasting, I have found this site to be helpful:  Awake21 particularly the ‘Prayer, Fasting, and Personal Devotion Guide.’

I really appreciate Aaron and Holly continuing to minister in the middle of their pain and hurry -- I appreciate them telling us exactly what we can do, providing resources, providing scriptural references. I am not exactly fertile ground for much of this, but I always hope for a time when sarcasm and an ironic world view will ease. Until then, I'll just do the best I can. If you, too, are uncomfortable and inexperienced with prayer and fasting born from beliefs so fierce and necessarily literal, join me tomorrow and let's try to shed our smart-assed ways.

Being dumb before God can't be anything too new.

All we gotta do is remember Holly and Aaron, and their children Olivia, Will, and most especially, Kate.

Will, Aaron, Holly, Kate, Olivia

From The TomKat Studio

honk:::a [not always raucous] resonant sound

10/17/2010

once upon a time, i ruined someone's privacy when it was most precious.  i did as asked to make it right, but felt the burn, sure that i'd never so disturb anyone again, having learned -- one.more.time. -- that it is not about me.

she was raw, she was raw in her possessiveness, she was inordinately kind, she was barely there, he was slipping and her with him, oh!

the very person whose privacy i affronted is the person i must thank for this chance to... tap the horn, but lightly, in passing mackenzie's house.

CaringBridge is a marvel.  we have followed four children in their fight against cancer via the awesome journaling of their parents, who make it very easy.  yes, that's it -- they make it very easy.  thank you, thank you.  we learn so much about good life in witnessing their love, amplified less by unspeakable fear than by the stubborn expectation of joy.

i have learned to follow the lead, and to meet at the rendez-vous.
i have learned to not define the journey.
it is important to follow instructions, and to be sufficiently in tune to recognize them when they come. 

CaringBridge makes it easier.

mackenzie's mother writes that the honking of her neighbors as they drive home cheers her heart.  we offer just the lightest touch, a mere beep, a virtual prayer for this child's Actual Healing.

10/20/2010

a new entry from the CaringBridge blog:

MacKenzie Anne Galbraith Stuck

April 27 1997 to October 19 2010

11:15 pm

thank you, mackenzie's mom, for sharing her, and yourself, so graciously.  we have prayed for you here, yesterday, and today, and will continue to do so for many tomorrows:  first, admittedly garbled expressions of thanksgiving for her release and healing;  second, pointed and stern directives for comfort.

(okay, so storming heaven is not our forte... life, at least, promises to provide scads and scads of practice...

until i am an accomplished prayer warrior, if ever, god does not seem to mind that i farm out my obligations

-- to brother-units, to beloved readers, to the odd benificent animal.)

10/22/2010

Mackenzie's Mother suggests that "in lieu of flowers, please consider making donations to one of MacKenzie's favorite causes":


Cool Kids Campaign Learning Center
c/o Cool Kids Campaign
9711 Monroe Street Cockeysville, MD 21030
www.coolkidscampaign.org


Casey Cares Foundation
3918 Vero Road, Suite C Baltimore, MD 21227
www.caseycaresfoundation.org

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About CaringBridge
CaringBridge provides free websites that connect people experiencing a significant health challenge to family and friends, making each health journey easier. CaringBridge is powered by generous donors.

CaringBridge websites offer a personal and private space to communicate and show support, saving time and emotional energy when health matters most. The websites are easy to create and use. Authors add health updates and photos to share their story while visitors leave messages of love, hope and compassion in the guestbook.

H::O::O::R::A::Y::!

tonight:

a quiet, cautious, heartfelt

H O O R A Y

for kate mcrae's "negative" PET scan!

photo credit