Showing posts with label cancer-medical-no-more-options. Show all posts
Showing posts with label cancer-medical-no-more-options. Show all posts

Thursday, January 8, 2009

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

Tuesday, January 6, 2009

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 plateletshydrea (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).

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     Click Here to See the Profile for april08     Edit/Delete Message   Reply w/Quote
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...

Sunday, January 4, 2009

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.......

Saturday, January 3, 2009

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?


Oh mein Papa

Please God, Leave Our Papa Alone

Honestly, God...if You're thinking that it's time to bring him Home, I'm sorry, God...I know I shouldn't even think this, let alone express it publicly, but...You're wrong, God, You may have made a mistake...

Granted, I can understand why you'd want him, full time up there, and try as I might, I of course can't blame you for feeling that way.  We all feel that way about him here too...why grown adults literally fight over who gets to spend the most time with him, which is really a kind of ugly thing to witness, but anyway...I regress...

Seriously though, God.  Take a look around up there.  There's really good stuff there already, right?  And a lot of them too, I would easily guess, bet they might keep you pretty busy, huh? Are sure you really want another one so soon?  Just, think about it, God...it's okay to "change" Your mind.

Isn't Moses, Noah, Abraham, George, C.S. Lewis, Pope John Paul, Mother Theresa, Mary (as in Your Mom) and Joseph, Esther, Ruth, Boaz...you get my point, right God?  The list could go on and on and on...think about it, God.  

You've already got most of the good people up there already, but here on earth...looking around...quite often...we've only got one, God.  Do you really think it's a good idea to take our ONE away?

Lord, I know You'll make the right decision, after all, You are GOD...

In the meantime, God...we'll be praying, hopefully anticipating that amazing miracle that only You can provide.

A Cry for Help Worth Answering


My Dad, Arend "Odee" Lenderink, has AML Leukemia.

He was initially treated with the "traditional" chemo, yet "it" quite quickly came back, next they tried the mylotarg, however again, "it" came back...so now his physician says that's it, there's nothing else, medically speaking, that they are able to do for him...

But, he's so healthy looking, he looks and feels great, he doesn't want to leave us yet, he truly feels that there's still more left on earth that God intends for him to do...and we need him here yet too, we really, really do...

I beg of you all with all my heart...

Please...

If you know of anyone, or anything, please say so here...

We need you all...

Please...

Friday, January 2, 2009

From My "Has Known Him the Longest" Sister, Denise Lenderink VanderWal


Sara, your poem is beautiful.
We all have experienced and continue to experience that wonderful unconditional love. What an earthly example of Christ dad is and has been. Even through all the difficult times in his life dad has always been faithful. I can't even imagine life without him as I know you can't either.
I too am praying for a miracle, a total cure. Not from medicine, not from doctors, not from chemo but by a totally unexplainable source...no explanation...only a miracle, only God, who will be given ALL the glory and ALL the honor and ALL the praise.
At the same time we need to cherish every moment we have together with our truly remarkable dad and thank God for every single moment we have already had. I feel so honored to be picked by God to be his daughter, me biologically and you through another miracle. Isn't God amazing and good?
He took something you hated and turned it into something so beautiful. He made us a family. Two totally different families in two entirely different states, clear across the country from each other and wove us together to be a new family.
If dad had not married your mom your children would have never had a grandpa. It just amazes me how God worked that all out. It is wonderful to have each other through this very difficult time and even though we aren't living close to each other we all have one common prayer....please heal our dad and grandpa. We all love him so much!
When your mom had cancer I remember thinking how cruel that dad found such a wonderful woman and they love each other so much and he is so happy and now what if God takes her!
It is so wonderful that they got through that and now I can only pray that they will again get through with another miracle.
What ever happens, how ever God chooses to answer our prayers, the biggest thing we need to do is TRUST! We serve a good and loving God and He only wants the BEST for us. We need to trust and believe that because that is how dad has lived his life. We need to follow that example.
Never give up, never stop trusting and always continue to believe GOD IS IN CONTROL!
I love you Sara, love Denise

Mama, Do you Think I didn't Pray Loud Enough?

Papa's little "pizon" asked me, as tears rolled down her dimpled cheeks...

"Because, I was thinking...you know, Mama, God has a lot going on, so I understand if maybe I need to remind Him louder, you know, about how my Daddy doesn't live with us anymore and how I really, really, really need my Papa around."

So she's praying REALLY loud now...she also made a "logo" for her "Keep Papa" Team.

Yes, she is somewhat a little me, but most importantly, she is her Papa's little mustard seed.








That's PapAmore

You and that stink-bomb song...how you would embarrass me! 
(and how very much I loved it when you did)

One thing is FOR SURE, Papa...Dean Martin ain't got nothin' on you.

Without fail, at the peak of my sulkiest, most crabby of all moments...a "miracle worker" tune would suddenly burst forth into the room.  

And my epitome of Dutch father would magically transform into an Italian Godfather dancing around the room and singing with much GUSTO...

When the Moon hits your eye, like a big pizza sky...
That's Amore...

And without fail, as I'd roll my eyes, then I'd smile, get the giggles and lastly, of course, join in...

For as you say, That's Amore, performs much better as a Duet.

PapAmore, you always know just what to do...

Thank You

I'm Not Giving Up On You

When I was young, at the peak of awkward, flubbing through my pre-pubescent, "only a Mother could love" days...I met you.

And, I imagine that...
I wasn't that much to look at

Surely I wasn't that interesting to be around

Definitely I couldn't have been uplifting to listen to

Basically, Me
When I met You 

Was all Around
Most of all
Quite determined 
To clearly be
 
Not in the least bit nice

Specifically
To you...

I didn't want you to love me
didn't want you to care
wanted you to leave me
really didn't want you anywhere
that I was
at all

And You
Stubborn You

You Loved Me Still

You Loved My Ugly
Loved My Hate
Loved Me Silly
No Matter What

You always told me
Even then

I'll never leave you
No matter what

"I'm not Giving Up on You."

And so...

Just so you know...

I heard you then, I hear you now...

I listened and I learned

Learned what real love was
Learned what was true
Learned to endure
To believe
To be true
Learned what to fight for
Learned when to give in

All this
And more
I learned

From You

And now
This moment
This time
This now

Because you taught me well

I boldly stand
I have no doubt
I know now what to do

I hear God's voice
I feel His Peace
I gratefully answer His call

And that is why
I shout out loud

I'M NOT GIVING UP ON YOU!

It's not over
Your story is not done
There's more left to be told

Our God of Miracles
Is not Impressed
By lazy sloths on the ground

If we're to witness
The end result
Of our brazen prayers

Then we must all
Join hands
Unite
Show Him
That we Care

That we will actively
Hold God's hand
Not stand idly by

We will do
What can be done

We will follow
Our God's lead
We'll join his triumphant shout

When we stand
And actively show that

WE AREN'T GIVING UP ON YOU!


Thursday, January 1, 2009

Any Man can be a Father...

...but, to find a Dad, that's a rare treasure indeed...

I didn't write this poem below, it's obviously not my story, but change a few simple facts and it could be, for that's what you are to me, a Dad.

A simple dry-wall man
© By Lachell A. Hocker

(I wrote this poem about my step dad..)

I fell in love with a man
When I was only four years old
He was tall with big blue eyes
And he was strong enough to hold
me when I cried.
He loved my mom
He loved me
And together we'd make a family.

The teenage years were so hard
I know at times I broke his heart
But God's love shown
Through Dad's strong will
And he stood by me even still.

He taught me how to love and care
He gave me hugs when I was scared
And I thank God for each day
My Dad's been there.

It takes a special kind of man
One that fits Gods' perfect plan
To be a Dad
And to give the life we've had.

He was just a simple drywall man
Trying to get by
But little did he know
God had a plan for his life.


It is easier for a father to have children than for children to have a real father.
- Pope John XXIII