I Love You, Now Put THAT In Your Pipe and Smoke It!

I Love You, Now Put THAT In Your Pipe and Smoke It!

These are the words that PapAmore's 4th daughter shared with all of those gathered to celebrate him today...the last words ever spoken to her from her Dad.  

Granted, these words could have been a touch of morphine induced, however at the same time this phrase was most definitely 110% PapAmore.  

It's no wonder this GIANT of a Man was SO VERY LOVED by All...

Heartache for Others...Please PRAY for Dan

I (literally) randomly read this online and as a result am on my knees for these people I've never met and whom my only contact with is from a few posts on their blog.

Dan has AML and remission is currently not his, perhaps someone reading this knows of some way to help Dan, it could be...for God works in mysterious ways, let us never forget that, always hope, never stop believing and continue to ACTIVELY pray...

Posted by: unusualadventure | January 15, 2009

Last week, Dan, Erin & Tanya went to an appointment with the Fred Hutchinson Centre in Seattle where it was recommended strongly by Dr Klimo and VGH that we go for a ‘consultation’. I suppose we went down there expecting to hear of several options and ”trials” that Dan could look at. So, it was a bit of a shock to hear that they felt Dan’s 3 chemo’s not resulting in remission meant that Dan could no longer expect ordinary/standard AML treatments to work and they had nothing for him.

Initially, they told us that Dan was now in the category of looking for a new ‘break-through’ drug - something that hasn’t been tried before…and recommended that Dan go to MD Anderson in Houston, Texas - a facility that leads the US in innovative new trials for Cancer and Leukemia. They advised Dan that he should listen to all the options there, decide who he wanted to work with - and to go for it. Basically - to take a dart and see which Trial it landed on…a little unsettling. However, the more we talked, specifically about Dan’s chromosome abnormalities and the appearing and disappearing of his “Deletion Q5″, the more they became convinced that, at least initially, they would advise VGH that Dan go on a combination course of Mylotarg, Revlimid, and one other drug…basically a more experimental program than VGH was recommending…to hopefully buy some time

It is hard not to feel a sense of urgency, despite how well Dan mostly feels and looks, as his blood counts are not as strong as they used to be….and it’s hard not to be concerned about how quickly the Leukemia is growing. However, that is precisely what Dan is trying to do – not go by tests, but go by how he feels.

When You Came Over to Tell Me That The Cancer Was Back

I remember every word, you're right, Papa...you truly are right here, in our hearts...

(Papa is in blue)

Now, get over here, let me give you a hug

I don't want you to tell me, Papa

I know, honey, I don't want to have to tell you either, I really thought that it was gone, I did.  Look at me, no look at me, it's going to be alright, I promise.

I know

It okay to cry, your Mom and I cried too.  But, we have to trust, God.

I will, Papa

I'm not going anywhere and I will have hope up until my very last breath, but I need to know that you and my girls will be alright

I know, we will, I promise, I will make you proud, Papa

Oh, sweetie, I know you will, you already do, every moment of every day, you already do

And, I am still here, and I am going to keep on bugging you, all the time, even IF I am not here on earth, I'm going to keep bugging you, don't you forget that

I expected that you would...and thanks, Papa...I would like that

I don't want to go yet, there is so much here yet that I want to still do.  I want to have a Bible Study yet with Rod and Lou, I want to be there for you and your girls, I want to spend more time with my best friend, I'm not ready yet to leave your Mother.  How I pray that someday you meet someone who will cherish you the way I cherish your Mom, who will treat you and my girls the way you deserve to be treated.

We already have that, Papa, we have you

You silly nut, you know what I mean

I know

If I do go, to heaven, you know what I'm going to do?

Sing really loud?

Well, yea...of course, but I'm also going to right away walk right up to Jack, your Dad and I'm going to say...thank you for sharing your little girls with me...

I love you, Daddy

I love you too, honey, I always will

(then you started in on your "short list" ~ you always took such good care of us all, PapAmore, xox times a google and more)

We Miss Him

PapAmore's Guest Book

Arend Lenderink
(June 24, 1937 - January 11, 2009) 

Happy to Share PapAmore

Heartbreaking Update from Sara Huizenga Lubbers

My thoughts go out to Sara and her family. A few days ago, through her blog Papamore and reprinted here, we got the chance to meet her father and his brave fight with AML. Today, Sara sent the heartbreaking news.

My Daddy died today

So now, I know, that I need to support my Mom and love my family, that is what he would want, to not look back with regret and bitterness

I feel like every inch of my insides have been viciously clawed away, I'm sure we all do, it's all surreal

I'm so glad my Daddy is in heaven and always in my heart

http://zerogossip.com/2009/01/11/heartbreaking-update-from-sara-huizenga-lubbers.aspx?ref=rss

Thanks, Peace4...Papa Loves It, No Doubt

Find more videos like this on Peace4 the Missing

THE WORD FOR TODAY.....FOREVER HEAVEN

THE WORD FOR TODAY.....FOREVER HEAVEN

Posted 5 minutes ago

AT 4:10 TODAY 1-11-09.....THE CLOUDY SKYS PARTED FOR JUST SECONDS....AND ALL OF HEAVENS REJOICED AS OUR DEAR ODEE ENTERED HIS HEAVENLY HOME ......LEAVING BEHIND A FAMILY SEARCHING FOR THE PEACE THAT PASSES UNDERSTANDING.

CONTINUE TO PRAY FOR US....

Thank You, Seppy...for this Gift

Friday, January 9, 2009

Hope, love, life

It seems like it is never often enough that we get the chance to spread the messages of hope, faith, life, or love. We're so busy living our own lives, taking for granted our own miracles and blessings that we forget that everyday there is a family struggling to face that which but for the grace of God we go.

Earlier this year I was facing serious medical concerns. All initial tests and symptoms pointed to AML (Acute Myelogenous Leukemia) and when I started the research my heart and stomach hit the floor before my knees could to pray. However, after a month of in and out testing and several doctors later- it was discovered that I have SLE (Systemic Lupus Erythematosus, just "Lupus" for short). I will admit that it hasn't been easy, and there are times I find myself struggling more with the anger and hurt of being sick more than the actual symptoms themselves. However- I have never been more humble than I am today.


At the same time that I was facing my diagnosis a friend of mine's father was getting sick. He was eventually tested, and diagnosed with AML, and has struggled through treatment and to keep one step ahead of this disease for the better part of the last year. Recently his Dr. told him that he had lost the battle and that there was nothing else they could do for him.

His doctor obviously didn't know my friend Sara (the patients daughter) or the strength, love, energy, and power that this woman carries with her in her heart. 

Maybe there is nothing else THAT Dr. could do for PapaAmore, but there is so much WE can do for him. Pray. Research. Make calls. Ask questions. Help find resources, studies, treatments. Everyone knows someone who holds the solution to another person's problems, it's all about network. And it's all about getting the word out. To each other, to God.

Do not give up. Believe. Fight. Love.

http://papamore.blogspot.com/

I invite you, no, I beg you to visit Sara's blog, the journey of her father's fight for his life, her fight for his life. So many miracles are already happening, so quickly.. already he has a new Dr., a new medicine, an invitation to the University of Chicago Lukemia center, someone who has offered to fly him.

The wheels are turning, God is listening. Be a part of something great. Even if all you can do is read, and pass the link on to someone else. If you can't help- you know someone who can, you just may not realize it.


There but for the grace of God go I..

PapAmore, Heaven Sent

THE WORD FOR TODAY...PRAYERS

Posted 1 hour ago

OUTSIDE IN GRAND HAVEN, MICHIGAN THE SNOW FALLS PEACEFULLY, BEAUTIFULLY...

INSIDE FAMILY IS GATHERED...AND WE TEARFULLY CELEBRATE A MAN'S JOURNEY OF A GOD FILLED LIFE. ODEE'S CONDITION CONTINUES TO DECLINE AS THE AML IS INVADING.

WE COVET YOUR PRAYERS FOR COMFORT, PEACE, AND RELIEF FROM PAIN...PRAYER FOR THIS MOMENT...FOR THIS DAY.

Most Recent PapAmore's CarePage Entry

The Word for Today...

Posted Jan 7, 2009 10:20am

The leukemia invades...signs are more evident... Odee is experiencing pain in legs and chest...Fatigue is more present every day. Medically...our time is shorter than what we anticipated...we still hope and pray for a miracle.

As Odee's condition continues to change...pray for all of us as we try to find the peace that passes all understanding...As we hope for more time...we continue to thank you for walking this long journey with us...we have felt your love and prayers as a soothing balm for our broken hearts.

Please continue to leave messages on the care page...as they bring such a message of peace and comfort.

PapAmore has an appointment scheduled on Wednesday with the University of Chicago, there is a plane ready to take him there, there are pills finally prescribed to stabilize his AML, my Dad sees God's very hand holding out this hope...I am confused, why hasn't this news of hope been posted about on his CarePage?

No Regrets, Only God's Plan

Whatever happens, I promise to not embrace bitterness, not dwell on what ifs, not impossibly attempt to turn back the hands of time.

I will not ever taint your name by reflecting upon it amidst futile "wish I could have" thoughts.

I know you understand that my voice now does you more harm than good.

I know that you too don't understand why they won't listen.

I know you understand that it's not because I gave up on you.

Thank you for always believing in me.

I am honored to call you my Dad.

God holds the Keys

I'm praying, fervently praying

I always have been and won't ever stop

Looking up

Just like your life

Shows us

Always

AML and Potential Ways to Gain More Time

Upon my Father's initial diagnosis with AML his oncologist firmly instructed all of us to "not be getting on the internet, reading up on AML" that to do so would just scare us and make everything much more difficult. 

So we didn't...hadn't...not up until she closed the book on my Dad's life and left him with no options. I started looking AML up then, specifically because my Dad WANTS TO FIGHT THIS...

We now know that my Dad does have options, I just hope that it's not too late.

Quoting and linking info I've found online here below...

The American Cancer Society is happy to address almost any cancer-related topic. If you have any more questions, please call us at 1-800-ACS-2345 at any time, 24 hours a day.

The DCE-MRI technique

"Compassionate Drug Use"  Emergency Use Investigational New Drug Program for Oncology Drugs Telephone: 888-463-6332 Description of Service: Through this program, patients with severe or life-threatening illnesses who are not eligible for clinical trials, and are in an urgent medical crisis, may be able to receive drugs not yet approved by the FDA to be used right away. The program is also known as the Compassionate Use IND Program. A patient's doctor should contact the FDA with questions regarding compassionate use of an investigational drug. The program only allows for doctors to make emergency IND requests. There are two direct lines (for doctors' use only): December 11, 2008 (San Francisco, California) — Older patients with acute myeloid leukemia (AML) and myelodysplastic syndromes should not be prevented from proceeding to allogeneic hematopoietic cell transplantation (HCT) on the basis of age alone. Study results, presented here at the American Society of Hematology 50th Annual Meeting and Exposition, showed that outcomes for older patients undergoing allogeneic HCT were not significantly different from those of younger patients, even after adjustment for multiple comorbidities.

• Division of Drug Oncology Products: (301) 796-2330 (Ask your doctor to call this number) 
• Division of Biological Oncology Products: (301) 796-2320 (Ask your doctor to call this number)

ScienceDaily (Jan. 3, 2009) — They have identified a novel target that may help to combat the growing problem of therapy resistant cancers and pave the way for innovative therapeutic approaches.

Clinical Trials

• Clinical Trials available @National Institute of Health
• NCI Clinical Trials
• Clinical Trials Listing Service
• Cancer & Leukemia Group B - Cancer Research

Date: June 2, 2008 - Data Show Encouraging Results for a Potential New Front-Line Treatment Approach in AML

If left untreated, leukemia cells will eventually overwhelm and lead to the type of suffering that not even strong painkillers will relieve.

seeking the best help for us or a loved one. 

It would be ridiculous to just die while modern medicine has come so far with treatments. 

Clolar to treat adult patients with acute myeloid leukemia (AML).

Intensive Induction vs Palliative Therapy for Elderly AML Patients

"Some of the patients we are treating successfully had previously been told by other physicians to 'go home and die.'

One thing I found per googling is Hydrea.  Per Hydrea, this is a "chemo pill" of sorts that works to lower untreated AML's skyrocketing WBC's. It even looks like you can purchase it online via pharmacy in Canada. Sounds like some even use it prior to induction chemo.

High-dose hydroxyurea in the treatment of poor-risk myeloid leukemias

Low-dose chemotherapy (ie, hydrea, low-dose cytarabine) may also be useful as palliative therapy or as a treatment prior to standard induction therapy.http://www.medscape.com/viewarticle/505319_3

What is Hydrea (Hydroxyurea)?

AML and Hydrea pertaining to Cancer Management

Hyperleukocytosis in AML (WBC count of more than 100,000) This link speaks of the use of Hydrea in AML when used in emergent leukapheresis,which, from this link, seems to be the treatment that should be used if the WBC's are over 100, 000.  For those who suffer from high leukocyte count can receive cytoreductive drug (hydroxyurea and cytarabine) to control the leukocytosis related complication.

The combination of HU, azacitdine and GO appears to be a safe and effective regimen in the treatment of AML and high risk MDS in the elderly.

Older, less fit patients have a poor outcome, and few trials have been conducted in this patient group. Low-dose ara-C treatment was superior to best supportive care and hydroxyurea because it had greater success in achieving CR, and it could represent standard care against which new treatments may be compared in this patient group.

Overall, our study showed that low-dose cytosine arabinoside given by continuous infusion together with continuous infusion GM-CSF and hydroxyurea was well-tolerated and effective in treating elderly AML and MDS patients who were not eligible for standard induction therapy.

GM-CSF priming can enhance the cytoreductive effects of low doses of cytarabine. This combination therapy is well tolerated, and should be explored as an alternative regimen for high risk and elderly AML and advanced MDS patients.

Low-Dose Cytarabine Improves Survival of Older Patients with Leukemia

There are several exciting things happening in new treatments for AML. We saw many studies at this meeting with those agents, and I think that in a year or 2 the data will mature to the point where they are going to start contributing to improving outcomes in AML, which is very good news for patients.

FYI, This article above is from 2005