How could my Mom's Birthday be Happy, when my Dad is no longer here?

Once upon a time, because He so deeply loves us and really wanted us to see, God put a face on True Love.  He allowed us to witness an "in real life" story of what "to truly cherish someone" means.  

Lucky us, most of all, who saw this up close...and when we did, we were struck with the knowledge of...this must be what life and love really means.

When I think of PapAmore' - when I think of my sweet Mom, the very first thing that comes to mind...is sacred love.  

Love that you're in awe of, love that makes you personally feel better to be around, love that must be the kind we'll someday know in heaven, a love that, just from witnessing, you'll forever carry within yourself as well.

This was not a selfish love, this love didn't swallow up each other and escape from the world...rather it gave the one it most adored on earth the passion, support and desire to do even that much more, for every life it knew.

My parents never stopped holding hands under the table...they never lost that "drown in you" gaze.  When my Dad told me that once he met my beautiful Mother, that he never once laid eyes on another woman again...I never once questioned the validity behind his words.

It was a "look what I have" love, an "I am so blessed" love, a love that continually thanked their God above, first and foremost, for their greatest gift on earth, each other, together, in love.

A never could wain love, a "we will survive" love, a never should die love...a love without end...

A love that made sense of my own life's disdain...gave the pain in my marriage, my consistently beaten up heart, the hope to believe in something more.  

Most importantly, their love assured me of God's love.  It painted a picture of how HE intended love to be.  That true love is more than just a "Bible Story" but rather truly lives and breathes even amidst our sinful world, as was consistently evident in the very ones I most adored.

How do you live without your soul mate?  

However could God take my Dad from my Mom?  

Why wouldn't He want them to continue loving one another forever?  

Didn't He see the great hope their love brought to everyone else around?

Why is the essential other half of the epitome of love on earth...no longer here?

My Mom's birthday is in 3 days...and the one thing, the only thing, she wants...is no longer here...

Happy (un)happy Birthday, Mom...xoxoxoxoxoxo

Grief Cannot Be "Scheduled"

Pain unexpected

lack of all warning

tackles me

onto the ground

Grief has no timezone

comes as it pleases

sneaking up

quietly, no sound

There is no "safe place"

no detour from hell

intense fire

forever burns

Hearts that are bleeding

souls that are shattered

hard to breathe

takes no returns

It creeps up

it sneaks up

it swallows one whole

This monster

this evil

of dirt and of pain

The thunderous roar of grief

by Wanda Lenderink, my heartbroken Mom and Wife of my Dad

AS THE CLOCKS CONTINUE TO TICK.......

Posted 9 minutes ago

WE REALIZE THAT WE HAVE SAID GOOD BYE TO THE MAN WE LOVED ....WE HAVE CELEBRATED HIS LIFE ....HERE AND IN DENVER...WE HAVE FELT YOUR LOVE...YOUR TOUCH...YOUR CONTINUED PRAYERS....WE HAVE BEEN TOGETHER AS HIS FAMILY....SHARING..LOVING ...CRYING...SINGING TO HIM AS WE FELT THE RAWNESS OF DEATH WHEN WE LEFT HIM IN HIS FINAL RESTING PLACE...

WE HAVE TOLD THE STORY OVER AND OVER AGAIN ....WE HAVE CRIED SO MANY TEARS...WE HAVE SAID OVER AND OVER ...HAS THIS REALLY HAPPENED ????

AS WE LOOK AROUND THE HOUSE FOR SOMETHING THAT WILL TELL US IT A JUST A BAD DREAM.....WE REALIZE AS THE CLOCKS CONTINUE TO TICK ..THAT THE REAL MIRACLE IS THAT WE STILL BELIEVE..AND TRUST OUR LORD...

...AS OUR HEARTS ARE BROKEN.....AND AS THE CLOCKS REMIND US OF TIME ...WE REALIZE WE HAVE DONE ALL OF THIS...

THE MILK IN REFRIGERATOR THAT WAS PURCHASED BEFORE ODEE DIED IS STILL FRESH...

AND WE SAY ...DEAR LORD HOW CAN THIS BE?????? 

AND THE CLOCKS CONTINUE TO TICK..

SO MANY PRAYED SO HARD...WE KNOW GOD HEARD OUR PRAYERS....AND YET HE DIED....

WE CLUTCH OUR GRIEF TIGHTLY.....EVEN THOUGH EVERYTHING WE BELIEVE TELLS US THAT GOD WANTS TO CARRY OUR PAIN....WE STILL HOLD TIGHT .....BECAUSE HE IS GONE....AND THE ONLY COMFORT WE WANT IS IN HEAVEN....

DEAR LORD...HELP US RECONCILE...ALL OF THIS ..BECAUSE WE LOVED HIM SO

For His eye is on the sparrow

Especially since my Dad went to heaven, I just can't seem to get this song out of my head, which makes sense considering that my Mom plays it so often...along with the beautiful fact that daughter #4, Valerie Herder, sang this song for Dad at his Memorial service in Denver.

This song seems to intimately know him, we have so much leftover love yet to give him, we longingly miss him...every hour of every day...

HIS EYE IS ON THE SPARROW 

Why should I feel discouraged, why should the shadows come,
Why should my heart be lonely, and long for heaven and home,
When Jesus is my portion? My constant friend is He:
His eye is on the sparrow, and I know He watches me;
His eye is on the sparrow, and I know He watches me.

I sing because I'm happy,
I sing because I'm free,
For His eye is on the sparrow,
And I know He watches me.

"Let not your heart be troubled," His tender word I hear,
And resting on His goodness, I lose my doubts and fears;
Though by the path He leadeth, but one step I may see;
His eye is on the sparrow, and I know He watches me;
His eye is on the sparrow, and I know He watches me.

I sing because I'm happy,
I sing because I'm free,
For His eye is on the sparrow,
And I know He watches me.

Whenever I am tempted, whenever clouds arise,
When songs give place to sighing, when hope within me dies,
I draw the closer to Him, from care He sets me free;
His eye is on the sparrow, and I know He watches me;
His eye is on the sparrow, and I know He watches me.

I sing because I'm happy,
I sing because I'm free,
For His eye is on the sparrow,

And I know He watches me.

- Words by Civilla D. Martin, 1905

- Music Charles H. Gabriel, 1905

Civilla Martin wrote:
"Early in the spring of 1905, my husband and I were sojourning in Elmira, New York. We contracted a deep friendship for a couple by the name of Mr. and Mrs. Doolittle, true saints of God. Mrs. Doolittle had been bedridden for nigh twenty years. Her husband was an incurable cripple who had to propel himself to and from his business in a wheel chair. Despite their afflictions, they lived happy Christian lives, bringing inspiration and comfort to all who knew them. One day while we were visiting with the Doolittles, my husband commented on their bright hopefulness and asked them for the secret of it. Mrs. Doolittle's reply was simple: "His eye is on the sparrow, and I know He watches me." The beauty of this simple expression of boundless faith gripped the hearts and fired the imagination of Dr. Martin and me. The hymn "His Eye Is on the Sparrow" was the outcome of that experience."
The next day she mailed the poem to Charles Gabriel, who supplied the music.
Singer Ethel Waters so loved this song that she used its name as the title for her autobiography.

Cherishing the Now, Begging for More

This is the letter that I wrote to my Dad very early on New Years Day, 2009...11 days prior to his, PapAmores', death...

You gathered us around you this night, the last one of this year. All these anxious faces, all these pleading eyes, looking up to you, like we always do, drinking in your presence even more than we did before.

We're scared, we try to hide it, but it really shows, I'm afraid we're not doing that great a job...well, okay...I am, I'm the one aimless and lost, incredibly scared, terrified, devastated, crushed...pretty much praying for the end of the world.

Papa, my Daddy, you love without end, you're the rock, the beacon of light, the fixer, the healer, the widsom, the strength, you're rational and wise and smart as the universe, yet funny and silly, you're cool Papa, why...you're Papamore!

And I still run home to you...and now my girls do too, so you see...well, maybe that's the problem? Is it because He wants us to only run to Him?

And if that's true, and I'm sorry I don't think it is, but if it is, then that is just really stupid! Why, if God would be that freaking mean, well then, then it wouldn't be Him. Because the God I know, the God you've shown us in everything you do, He knew we needed someone very special to be able to run to, He knew no one else could ever do, but you.

So, when we run to you, He smiles, because He sees how very much more we love Him, through you...

Anna stayed up to watch the ball drop, "it's a brand new year" she said, then she smiled and told me that she was thinking, God has a ton of stuff to remember, so she understands that He might have forgotten that Papa needs to get better because, with all that He has going on, maybe she just needs to remind Him more that she really needs her real Daddy around for a really long time, her real Daddy, her Papa.

"And God listens to our prayers, He really does," she peacefully told me with a smile...

Of course, she's right...she's Papa's little mustard seed.

We love you, with all our hearts...and then some...

And we are okay, we're okay! I promise...xoxoxoxo

We Lost our Haven in the Middle of the Storm

Who will protect us now?

Who will provide shelter from the elements outside?

Where will we run to now?

What will bring us refuge?

We are so exposed...out here...in the rain...in the cold...in the sleet, hail and lightening...

We've lost our protection...the very essence of our being has been ripped from our souls...

There is a violent storm around us, it's destructive power is increasing...but, we have no where to run to...no haven in which to abide...

For You, our Forever Safe Place...have died

And it's so hard to look up, when your face is being smashed into the ground.

Don't You Know That My Papa Died?!

Oh, your precious and wise, Annabella...she misses you so much, Papa.  You knew her best of all, what was really going on in that brilliant little mind of hers, how much she really hurt when she said it was all okay.  She was able to easily cry with you, open up her amazing heart fully in the safety of your love.

And, it's hard to understand for a billion different reasons, why you're no longer here, whatever good could come from a plan that takes you from us?  

A plan, this now, the present, in which Anna is simultaneously forced to endure a recent single parent family/broken home while at the same time having her most sacred one, You, ripped from her life...I'm afraid I'll never make sense of that why.

So today, because I had to, today...because the entire world just keeps moving on, I had to go meet with my divorce attorney.  It's ugly on top of ugly...a cruel reminder of the constantly painful past and frequently tormented presence.  

My heart breaks to witness the additional pain this "extra" devastation further saddens those I most hold dear.

And Papa, my sweet Papa...I know that meeting with my attorney was on your "short list" that you ever so faithfully were determined to yet do...but, there wasn't enough time and I did not work very hard to make it happen that last week.  How could I?  Schedule your time to include something as ugly as this for your last moments on earth?  

I'm sorry, Papa...I couldn't...

But, Brett went with me today, I had told him he really didn't need to, however I am SO glad he did!  You would be so proud of him, Papa...he's the best big brother ever, he's even becoming a lot like you...which is very good!  ;)

It is overwhelming...we love you so much that...it's difficult to be around those unaffected by your death sometimes.  

Especially devastating to clearly know and see that the one you daily prayed for and loved, the one that I brought into your life...honestly doesn't give a damn, at all...

Anna was very upset with some boys at school yesterday, they had thrown a snowball at her and in response she had whipped right around and nearly screamed at them...

"How could you do that to me?!  Don't you know that my Papa died?!"

At that moment, I knew exactly how she felt...yet ever so helplessly, all I could do was just hug her ever so tightly and say, "I know, Papa's pizon, I know...it just doesn't make any sense at all."

Sigh a thousand sighs

"In a way I think you're lucky, it's so hard here."

My words to PapAmore as he stood at the brink of death...

Lucky to be TRULY living...Lucky to have no more tears...Lucky to know the essence of peace...Lucky to have no more fear...Lucky to know Jesus...Lucky to commune with God...Lucky to be in heaven...Lucky to not fear hell...

Lucky to feel this pain...Lucky to have our hearts shattered...Lucky to have your memory...Lucky to have been taught what only and truly matters...

Lucky to recognize the scent of your cologne...Lucky to know we're never truly alone...Lucky to be loved without measure...Lucky to feel true grace...the Grace from Him alone...

Lucky to cry...Lucky to mourn...Lucky to question...Lucky to have our very souls ache...ever since you've been gone.

Lucky to have had you at all...Lucky to join you above soon...

In just one blink of an eye we'll all be together forever...

Lucky to run to you above someday...

Lucky, most lucky...to have had been and be yours...

Lucky to have had you all...

Lucky

Because of you...

The most luckiest lucky of all...

No Regrets, God's Plan

PIANO DI AMORE - PAPA PRESENT DAY

It arrived yesterday, in the afternoon...our surprise gift from you, our PapAmore.

The delivery truck came, just as you had scheduled and previously planned, to our house.

We are overwhelmed, remarkably not surprised, but definitely overwhelmed.  

Overwhelmed by the greatness and significance, not surprised because remarkably so, it's so you...so lovingly you...that's what we knew, what we'll always have within us, the forever gift of being loved by you...

You ordered a piano for us, before you died...it's something we've always dreamed of, have been saving for years to have, never imagined that we would soon actually have as our own.  

But in your final hours, you made this dream come true.

We are forever loved because once we were loved by you.

Yesterday you gave us the gift of our dreams, tomorrow we're going to get the sheet music for "That's Amore" and sing it forever for you...

We love you, Papa

Thank You

Arend 'Odee''s Update by Wanda Lenderink

THE WORD FOR TODAY...."I AM STILL ALIVE....NOW, YOU KEEP LIVING! "

Posted 2 days ago

AS THE MANY CLOCKS IN OUR HOUSE ,THE CLOCKS THAT ODEE SO FAITHFULLY KEPT WORKING...TICKED AWAY REACHING FOR A NEW YEAR...OUR LOVING ODEE GATHERED US AROUND HIM...THE EYES OF EACH ONE OF US INTENSILY FOCUSED ON THE MAN WE LOVED...OUR HEARTS WERE SO TRANSPARENT ...OF THE NEED FOR MORE TIME..

AS THE TICKING CONTINUED ...WITH COMPASSION ODEE ACKNOWLEDGED THE DISAPPOINTMENT OF NO REMISSION....LESS TIME HE REMINDED US ...WE STILL HAVE HOPE...HOPE FOR A MIRACLE...OUR TIME WAS IN OUR LORDS HANDS ...THE LEUKEMIA WAS NOT THE KEEPER OF THE CLOCKS...HE TOLD US OF HIS LOVE FOR US...HIS NEED FOR MORE TIME WITH US.....THANKING US FOR OUR LOVE...

AS THE TICKING CONTINUED ..HIS VOICE BETRAYED THE SURRENDER OF HIS HEART..."BUT IF GODS SAYS... "IT IS TIME"..THEN I ,MUST LEAVE...I WILL ALWAYS BE IN YOUR HEART...DON'T THINK FOR ONE MINUTE THAT I WILL LEAVE YOU...IN FACT ,I WILL HAVE A BETTER PERSPECTIVE AND I WILL BE RELENTLESS...I WILL NEVER STOP BUGGING YOU ...BECAUSE I WANT TO SEE YOU ALL IN HEAVEN SOMEDAY...I KNOW YOU WILL BE SAD AND THERE WILL BE TEARS..BUT YOU MUST NOT LIVE THAT WAY...LOOK, I'M STILL ALIVE SO YOU MUST KEEP ON LIVING...AND OUR TEARS FLOWED AS THE SECONDS TICKED ON...AND AS ONLY THE MAN WE LOVED COULD DO ..HE POINTED HIS FINGER AT ALL OF US ..."ALRIGHT NOW, NO MORE CRYING"...

AS TIME TICKED ON...A NEW YEAR..WE SPENT OUR TIME ..LOOKING FOR MORE HOPE..WATCHING THE LEUKEMIA INVADE..DESPERATE FOR MORE TIME ..BEGGING GOD ..REMINDING HIM OF YOU PRECIOUS PEOPLE PRAYING ...PRAYING WHEN OUR HEARTS WERE SO WEARY..AS WE MET WITH THE DOCTOR ..WE ASKED HOW MUCH TIME ?..."WEEKS TO SIX MONTHS"...OUR HEARTS ONLY HEARD SIX MONTHS ..MAYBE TIME FOR A NEW TREATMENT ..

THE LAST THREE DAYS...MORE FAMILY CAME JUST WANTING TO SPEND MORE TIME WITH THEIR DAD AND GRANDPA...SISTERS AND BROTHERS CAME ..SOME STILL COMING..AS THE HOURS AND MINUTES TICKED ON...NEW HOPE CAME ...AN APPOINTMENT WITH A RESEARCH SPECIALIST IN CHICAGO ...EVEN A JET MADE AVAILABLE TO FLY HIM DOWN THERE...

AS TIME TICKED ON ..AND IT WAS JUST HIM AND ME...CLOSE TO EACH OTHER ..WE BORE OUR SOULS WE TALKED OF THE MIRACLE THAT GOD HAD PLACED US TOGETHER...WE TALKED OF OUR LOVE...WE WERE SO THANKFUL..BUT ..PLEASE LORD MORE!!!! WE TRIED TO TALK OF THE "IF'S" ...BUT IT WAS SO PAINFUL....WE WOULD FIND OURSELVES STARING AT EACH OTHER ..AS IF IT MIGHT BE OUR LAST LOOK..

NEVER KNOWING THAT AS THE CLOCKS TICKED ON ..ALL OF HEAVEN WAS PREPARING FOR THAT MOMENT...TO US IT CAME AS SURPRISED ...WE THOUGHT WE STILL HAD MORE TIME ....MAYBE HOPE...BUT AS WE GATHERED AROUND HIS BED...HIS BREATHING SO DIFFICULT HIS EYES A PICTURE OF HIS SOUL ...I REMEMBERED HIS WORDS...IF THE TIME COMES ..."YOU HAVE TO BE READY TO LET ME GO "...I BEGGED HIM TO UNDERSTAND...HOW COULD I DO THAT??....LOVINGLY, HE TOLD ME WHEN THAT TIME COMES ...HE WOULD LET ME KNOW...AND ON THAT DAY AS TIME STOOD STILL...HIS EYES TOLD ME IT WAS TIME ..MY LOVE LET HIM GO ... AND THROUGH OUR TEARS ..WE REMEMBERED HIS WORDS ...I'M STILL ALIVE....[IN HEAVEN]...SO KEEP ON LIVING...

PRAY FOR US .....WE KNOW OUR LORD WILL BE WITH US....AND WILL MEND OUR BROKEN HEARTS...BUT ...HOW WE MISS THE MAN WE LOVED....AND THE CLOCKS KEEP ON TICKING ...EVEN THOUGH OUR WORLD HAS STOPPED ...

Hope For One Family Never Dies

 http://zerogossip.com/2009/01/08/hope-for-one-family-never-dies.aspx

Hope For One Family Never Dies

It's often times that the stories of ordinary people are never told. Only those close to the person know the story and yet it's these stories that can help others.

Thank You for sharing God's Miracle with others, Holliston...And I forgive you for calling me "ordinary" ~
(kidding, thanks so much...xoxo)

God is STILL in the MIRACLE business!

Last night I wrote...

Now even more so I (can only speak for myself, or at least should) truly believe that my Dad's sole oncologist is not intentionally trying to stifle his hope to survive but rather coming from a stand point of a "cure" and by doing so is seemingly not willing (or at least not proactive) to look at or consider his desire for more time.

Finally now my Mother is beginning to realize how much we are allowing this physician to be the sole one in charge of our Papa's life. (HUGE plug for completely separate 2nd, 3rd, etc. opinions here!)

Today a palliative doctor did come, I found out about their existence on the internet. His first remark was that my Dad was the healthiest looking AML patient he'd ever seen.

Tomorrow, we need to act quickly, I just hope and pray it is not too late, I'm trying so hard to not let the frustration of these past few weeks overwhelm me.  Hoping and praying that if she will not prescribe it, they will continue to pursue this path, to fight like my Dad desires by asking for a referral to someone else who will.

Time is of the essence, not sure how to go about this all, at all...whether to try to get prescription from her before finding another doctor or going to another doctor prior to a prescription (which could not be as well thought out) from her.

And Today!!!!!

The Hydrea (low dose chemo) has been prescribed, my Dad called Dr Vanderwoude and strongly requested it himself! They are delivering to my parents' door yet today!  (update, sigh...see comment below, we continue to need to pray and ADVOCATE upon my Dad's behalf)

I also was contacted early this morning by my best friend from college, Tami Sivy Weemhoff, (side note, I have not spoken to her in years) she used to work under the head of leukemia research at the University of Chicago, and she worked so hard and possibly even got my Dad in! 

We are faxing my Dad's treatment history records upon request to them immediately, thank you, TAMI!! 

Truly, she is an in real life angel, most definitely today, most likely quite often.

PRAYING that things will continue to move forward...

Will keep you updated...

wow, God...

There is no doubt, He's still in the miracle business

And in the most ironic and beautiful, without a doubt gift from God, thing...our greatest hope and encouragement to LIVE today came from those who came to help my Dad die.  This morning, my Dad was visited by what surely must be the most compassionate, intelligent, miraculous Hospice Nurses that were to ever walk upon this planet...so grateful to them and most of all to God...

This journey is far from over, but tonight we have much more hope than we did early this morning...Today God truly performed a Miracle.

As Papa says, 

Only HE holds the Keys

May God Lead All Our Hearts Towards Doing His Will

This was posted in Anna's school's (Grand Haven Christian) Bulletin today...
Sara Lubbers father, Arend ‘Odee” Lenderink, has Leukemia and she cherishes each prayer for a miracle and for the family during this difficult time.

Late this afternoon I saw these responses to a thread I had posted online...
http://ubb-lls.leukemia-lymphoma.org/ubb/Forum21/HTML/001695.html

From Papamore's CarePage, also posted today, around noon...
http://www.carepages.com/carepages/OdeeLenderink

More Papamore's Miracle Prayers Here...
http://peace4missing.ning.com/profiles/blogs/day-of-prayer-for-maggiesrose

More answers God is putting in our path here...
http://wendyharpham.typepad.com/healthy_survivorship/2009/01/not-ready-to-give-up-start-with-knowledge.html

Don't They Know He's Gold?

Today, after many hours of exhaustive research, we found out about Palliative Care on our own via Googling like mad on the Internet.

Thankfully, God Bless Saint Mary's Lack Cancer Center, they are already coming out tomorrow morning at 8:30am, to my parent's house, a wonderful Dr. Phillip who makes house calls.

We're also getting a second opinion, please pray for God's grace and hand to touch these physicians and help save Papa, to recognize that he is more precious than gold.

Please keep praying, anything is possible for God.

with great sadness...this update is added onto this post, as of this evening...

current doctor struck down every option, again

Still NOT Giving Up! (Sharing some things, please add thoughts if you're able)

Goal:  SLOW IT DOWN - Keep It at a MANAGEABLE LEVEL!

These ARE Potential Options!!!

Supportive Care

My dad has been on supportive care for AML for the past 18 months. This is 14 months past the time the docs gave him. He does all the things you have mentioned, temp twice a day, checks for bruises, stays away from people who are sick and takes some medications. He takes Tranxemic(sp)acid to increase his platelets, hydrea (low dose oral chemo), anti nausea tabs if needed. He visits his GP sometimes once per week to keep an eye on his counts, and when the counts are stable once a month. He always has Rulide (antibiotic) in the cupboard and has been told to start taking it at the first sign of any infection (eg. sore chest, sore throat etc).

http://ubb-lls.leukemia-lymphoma.org/cgi-bin/ubbcgi/forumdisplay.cgi?action=topics&forum=Living+with+AML&number=21

Dacogen

T-cell infusion 

Radiation

Maintenance Chemo

You DO NOT have to be in remission to do this!

Low Dose Chemo

mom is in her 70's and she's been having monthly chemo treatments for the past year that have kept her leukemia at a manageable level

Clinical Trials

Chemo Tablets

(hydroxyurea, which comes in a pill form - used to control high white blood cell counts)

Holistic Treatments?

Red blood cell transfusions

Mini-transplant

A transplant done when the patient's not in remission is therefore trickier BUT not impossible.Also, a "mini" is not a consolation prize. They work. The idea is to increase the patient's odds of survival, to weigh the various risks involved and choose the best treatment plan for the patient based on disease, donor source and any health issues the patient has in addition to the obvious.

Chemo (Vidaza or Dacogen possibly in conjunction w/ Mylotarg/Clorar)

 posted 01-01-2009 05:35 AM             

---

Grape-seed extract kills laboratory leukemia cells - new research released yesterday.

http://www.eurekalert.org/pub_releases/2008-12/aafc-gse122208.php

Decitabine in elderly AML has been getting a lot of attention lately in new protocols.

http://www.eurekalert.org/pub_releases/2008-12/osum-oap120508.php

http://www.physorg.com/pdf147967841.pdf
"On the decitabine trial, patients received the intravenous drug for one hour a day for 10 consecutive days each month until the leukemia was gone. Subsequent cycles of the drug were given for three to five days, customized for each patient based on clinical response or toxicity."

U.S. Approval For Clolar(R) To Treat Adult Acute Myeloid Leukemia Sought By Genzyme

http://www.medicalnewstoday.com/articles/130777.php

I had this drug for relapsed aml in July 2007. It was extremely costly, but it got me into remission. The only question I have is about the duration of the remission using Clolar (clofarabine). I believe it is on the short side (weeks to months), which is useful if you're going straight to transplant.

My husband had clofarabine also when he was refractory to other drugs and it got him into CR3 for a Tx. It was part of a clinical trial at the Hutch.

My husband (69)just finished his clofarabine w/cytarabine and had his 14 day biopsy. How many of you went into remission long enough to go right into a transplant?  He was clean for 1 month after his Induction of danorubicin/cytarabine, then relapsed and had no success from MEC w/a clinical trial of Siralimus. 

Definitely get another opinion, and educate yourself as much as possible.

My dad (age 75, his birthday was Christmas Eve) was diagnosed with AML in Feb 2008. He also found out then that it developed out of MDS, and that he had chomosome abnormalities, that made his chances for a remission very slim. Combined with his age, they basically told him there was nothing they could do.

So, not being ok with that answer, we got second and third opinions. The second said he could try standard chemo which might be difficult for someone his age (although he was in excellent health). The third was a less toxic alternative that included the Vidaza/Mylotarg regimen that you mentioned.

He chose the Vidaza/Mylotarg which worked very well on the AML (blasts under 5% after first round), and quality of life was very good (treatments were done outpatient), however his counts never got back into normal range. Luckily, he did not have any major complications. The only issue was the docs said it would just be a matter of time before the treatment became ineffective.

So again, not being satisfied with that, and with all the education we received from the wonderful people on these discussion boards, we decided to pursue a mini-SCT in hopes of a cure. Minis are better tolerated by older patients because they include a less toxic pre-conditioning regimen than a standard SCT.

Currently, my dad is at the Hutch in Seattle, where he is at day +36 post transplant and is doing well, with his white counts in normal range, and the reds and platelets on the rise. This is also being done on an outpatient basis, and luckily again he has had very few complications.

PJ also mentioned etron's mom (who I beileve is 72). Her mom was diagnosed over a year ago with AML, MDS and chomosome abnormalities also, and has been doing very well on Dacogen. I e-mailed with her last week, and they are also planning on pursuing a mini-SCT in the near future.

I hope this info helps some, and like everyone says, don't let statistics scare you. They are just historical averages that are obsolete as soon as they are printed. New advances are being made everyday, and every individual is a unique case and personal sutuation.

Best wishes and prayers,
Mark

Sloans, Johns Hopkins and Fred Hutchinson

"GET A SECOND OPINION! I can't stress that strongly enough."

- direct quote of someone else, not mine

(more quotes from others on AML board)

"Ask and ask again. Ask WHY. I wished I would've. I am the one who asked the doctor about it in the first place. I should've pushed the envelope."

This is what "Best Friends" look like

Art and Odee, Odee and Art...Forever

Just seeing them there,
in this photo...makes me happy

Thank You for doing such a great job at loving my Dad, Art......xoxoxoxo

We Haven't Much More Time

Friday's White Blood Counts, 2.7

Today, Monday, White Blood Counts were at 10.2

This is not a healthy jump, it's a sign of the demonic monster trying to take over his good blood.

Thank you for your prayers, they are great, so appreciate, etc.

Okay, here is the thing, looking for a Clinical Study Treatment or Alternative Treatment to start very soon, connections would be great to help get in faster, please leave comments below.

Please, save whatever else you need to do for tomorrow, today Papa needs your help.

Looking for experts in the AML field. Links above right and I'll leave more below, thanks...

Living with AML, any advice, please?

My Dad is 70 years old young, he looks and feels great, there's only one problem...he has AML, Leukemia, and both a try at chemo as well as mylotarg, have not put him into remission...so now? Well, thus the point of this post...

Are you or is anyone that you know familiar with AML? Do you have any contacts in this field? Have you or one of yours ever traveled a similar journey? Could you please take some time to share some tips, advice, resources that you might have learned along the way?

If you've ever read, know, heard of something, anything...please let us know, leave a comment...

Please don't hesitate to share...

Thank You

Please don't take on the role of diffusing my "fight" for my Father, this is how I must travel this journey...God understands, my Dad supports me and to be quite honest, that's really all the opinions regarding that matter.

PapAmore

Ted Kennedy didn't give up, why should my Dad?

He shouldn't...hope is alive, believing in it doesn't mean you are unable to look at the facts, living in dream world, hiding from it all, etc.

It means that you're a fighter. And honestly, what better fight could there be than one that works towards keeping this man, Odee Lenderink, around for as long as possible...

Ted Kennedy's cancer 'worst kind'
WASHINGTON - A malignant glioma — the diagnosis doctors gave Sen. Edward M. Kennedy — is the worst kind of brain cancer. Malignant gliomas strike almost 9,000 Americans a year. Survival statistics are grim — few live three years and for the worst subtype, half die within a year.

Who lasts longer — and some do — depends on exactly what form of glioma someone has, whether surgeons can cut most of it out, age and some other medical details.

Kennedy's doctors didn't mention surgery, suggesting that may not be a possibility for him.

"As a general rule, at 76, without the ability to do a surgical resection, as kind of a ballpark figure you're probably looking at a survival of less than a year," said Dr. Keith Black, chairman of neurosurgery at Cedars-Sinai Medical Center.......

What do you do, When they tell you to give up?

No, this isn't your personal story, it's not your own heart's passion, you most likely haven't a clue who I am, let alone who my Dad is...so why should you care? Why should you pause to hear my cry for help, why should you feel the passion we now live for, why should you care?

I recognize that...to some extent I understand...that's my struggle here...that is the pause behind each letter I here now type.

How can I help you feel our pain? What can I say to help you see? Who should I most concentrate reaching out to? Where should the majority of these efforts be directed?

There's a story to be told, this story may not be your own, but this story will touch you, it will make you a better you, if you listen. 

Will you listen? Will you pause? Will your own heart feel the passion? Will your own voice, join mine?

I have this amazing Dad, he's not just my whole world, he's also the universe of so many others. So many others, to whom he so unselfishly reached out to, so many lives that he never thought twice about blessing with his own.

My Dad is a humble man, his actions have never been for his own benefit. He just does, doesn't overanalyze why he performs "good samaritan" acts. It literally is just a part of him, he doesn't know of any other way...to live.

He is my pride, he is my hero, my teacher, my mentor, my light...always pointing towards the things that matter most, in the most natural, easiest to follow manner.

If I have any good in me, he put it there. If I am ever able to positively touch another, it is only because he's shown me how.

My Dad has AML, Leukemia...and it won't go away. And now these new leaders of him, the ones who seemingly have held his life ever since this ugly devil of a disease crept into it, they can't do anything more to make him better. Medically speaking, we're supposed to give up.

How do you that? Just give up?

How do you give up on someone who from all outward appearances is healthy and strong? How do you accept the ending for someone who eagerly anticipates so much more life? How do you close an unfinished story, how do you snuff out an eternal flame?

You don't, you can't...and that...well, maybe...that...is it.

You don't, you can't, we can't...we fall to the ground, we're helpless, we're lost, we have no other choice, we're violently struck with the truth that the one we thought we could save has seen all along.

Only HE can, only God, no mankind, no human, no science, no notion, no earthly efforts all on their own...just Him, only God. And He has been there all along, He's been waiting for everyone else to notice Him. Patiently, strongly, quietly waiting...to embrace us, to respond to our fervent cries...forever and always, He's been there.

Waiting for the light to come on, the "in your face" recognition that only one can work Miracles, only Him.  

And He, this miracle worker, our God, the only true light, he whispers in this darkness, to share...to tell the story of the man He made, to share my gift here on earth, my Dad, with others walking this rough, heart wrenching, fallen land.

This Dad I have, this amazing man, our Papa...his story...it needs to be shared.

Will you help us share his story?

Please join my one small voice, together we are stronger, together we will be heard.

Will you?