It's all worth it to have had him at all.

Reflecting upon the movie Shadowlands, the words of C.S. Lewis...

In a strange way, I see now how the suffering of all of us who mourn the loss of our PapAmore, Arend 'Odee' Lenderink, is a part of the blessing.

I imagine that not many are "blessed" enough to feel this kind of anguish...not everyone has been able to experience this great amount of love on earth.

The degree to which our hearts currently shatter is a direct result of the enormous amount of love they held for and were given by this sacred man we knew.  

I wouldn't give up all of my pain of today for even one yesterday without him.  

It's all worth it to have had him at all.

We can’t have the happiness of yesterday without the pain of today. That’s the deal.

The Price of Love

We can’t have the happiness of yesterday without the pain of today. That’s the deal.
- Shadowlands 1993

Shadowlands, the 1993 film portraying the love story between the English writer, CS Lewis, and the American poet Joy Davidman Gresham.Within our story, Shadowlands comes at the end of the beginning, and at the beginning of the end. But as one dark day is closing, so a different dawn awaits.

Why love, if losing hurts so much?

I have no answers any more: only the life I have lived.

I'm sorry that I'm feeling sorry for us...

How do I stop fighting for you when you're all I want back?  

How do I "let go" of our lifeline?  

How do I not search for the only one who always had the answers?  

I just want to climb in your lap.

I just want for it all to go away.

This morning your little Anna told me, not long after she had awoken...

"Mama, this is just so ridiculous!  I can't believe my Papa died!  I keep thinking it must be a dream...but, it's not...and sometimes, I don't like it when you wake me up now, Mama...'cause then I know it's real, that my Papa really did die."

I'm sorry, that we miss you so much, Papa...

I'm sorry that I don't actually feel God "carrying us" most all of the time now, like most likely I should...

I'm sorry I "fought" for you perhaps too long...

I'm sorry that I'm feeling sorry for us...

We miss you and you're gone...

It's so hard to believe that you're gone...

Please Pray for this newly diagnosed AML Grandmother and her Family

my so called life: Acute Myeloid Leukemia

If you could please send some positive thoughts or prayers her way, I would be immensely grateful.

Potential Good News for some AML Patients

Don’t let age bar you from having a blood stem cell transplant

by MARIJKE on December 9th, 2008

According to a press release issued by the University of Texas MD Anderson Cancer Center, Older Age Doesn’t Affect Survival after Bone Marrow Transplant, if you’re over 65 years old and you have acute myeloid leukemia (AML) or myelodysplastic syndrome (MDS), you could do just as well as younger patients who receive the transplant.

In a new study, researchers looked at 551 patients who had transplants for MDS and 565 for AML. They found that age had no statistically significant impact on transplant-related mortality, relapse, leukemia-free survival or overall survival.

Time From Diagnosis to Treatment Initiation Predicts Survival in Younger, but Not Older, Acute Myeloid Leukemia Patients

Blood. 2009 Jan 1;113(1):28-36, MA Sekeres , P Elson, ME Kalaycio, AS Advani, EA Copelan, S Faderl, HM Kantarjian, E Estey

An extract out of grape kernels can bring about leukemia cells to kill themselves.

Americans have chosen HOPE over fear

In light of America, our Freedom, Gratitude, Hope and a Cure for Cancer, HERE as of Today is a Bill we best Support.

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