Showing posts with label salvage-treatment. Show all posts
Showing posts with label salvage-treatment. Show all posts

Wednesday, April 8, 2009

Are you the Grandpa who was in Jail?!

Yes, our "angelic" Papa has a "criminal" past.

His walk on the "dark side" began quite early on in his life, specifically at the easily "tempted to fall" age of fourteen. Thankfully, as far as we know (according to him) his time spent at the big house was a singular event.

And so the story begins with a summer's evening, a vegetable garden, some over-ripe tomatoes, a (somewhat klutzy) woman in high heeled shoes, a back alley, a determined member of the Chicago Law Enforcement and a small group of neighborhood boys. The components of this story are, on their own, quite innocent, but put them together and as you will see, you've got yourself a recipe for disaster where the lives of four young boys are about to take a turn for the worse...time behind bars, that's right...JAIL.

According to Papa, he can't remember which one of these four boys initially came up with the idea to commit a crime that warm summer's night. However, since I know him so well, I can tell you that could only mean one thing...it was without a doubt, his idea.

And so the story goes, "way back when" in Chicago, four boys took a shortcut down a neighborhood alley one early summer evening, on their way home. On this alley, on the edge of a backyard, was a garden. Not just any old garden, think more along the lines of...the garden of good and evil, but then change the trees to tomato plants and the fresh apples to dirty, old, starting to rot, near ketchup state, well...tomatoes. Can you see it? Okay then, we can move on...

Well one of those suckers (ahem, Arend 'Odee' Lenderink) gets this fancy idea to throw the slimy things over this house and onto the main street on the other side. Maybe adds in a point thing too, like 5 points for hitting a car, 10 points for splatting a bike, I really don't know about the point part for sure though, just making that part up.

The four juvenile delinquents are having a marvelous time, raising mayhem and malarkey, really getting into the criminal side of them they were currently living out, in real life. Amidst this all, unbeknown to them, a fancy lady, wearing fancy shoes, is walking down the sidewalk. Now, high heels and slimy tomato bombs on the ground aren't the best match, well, at least in regards to safety concerns, they are none too good together. Slip, slap, down she goes, with a sprained ankle to boot.

To make a long story shorter, lady calls cops. Now, this cop is a rookie, this is one of his first assignments you see, (I'm making the rookie part up too, please forgive me) and he is 110% determined to prosecute the perpetrators responsible. And due to his determination, law enforcement was successful that warm summer's evening and the law breakers were found, on the ground, half buried in a combination of rotten tomatoes and dirt.

And despite the criminals cries of repentance along with more than a few "please don't tell my mommy!" pleas, justice is served and they are marched all three blocks over to the local jail, thrown behind bars and locked up with a key.

Now, I'm not sure if you know this or not, but Papa is the oldest. If you had ever met Grandma Zwaanstra, you would know that already, for that's all she called him, my oldest, the oldest of nine, all the time...in fact, his very siblings thought his actual name was "My oldest" up until he graduated from high school and the name Arend was read off. They looked at each other with a "huh, wha?" and a "who is Arend? I thought our brother's name was My Oldest..." Anyhow, I regress...

Funny part, I mean, not "funny" funny, just...okay, it's funny. Who is the only one able to bail these boys out of jail? The, just so happens to be, only one available, Papa's Dad, who also just so happens to be in a Council meeting at Church. And as a result is called out of it, where he is vocally and LOUDLY told that his son is in the slammer over at the local J-A-I-L.

So, what does this Conservative, Church Council Member, Father of Nine do? He goes over to the jail, rescues them from prison sentences and (laughing all the way) walks them each home. The only punishment, if you could call it that is at one point saying "well you dumdums, I bet you won't do anything that stupid again, hehe" and leaves it at that. Upon hearing this part of the story, I knew for certain that what others said really was, without a single doubt, true, my Dad is just like his Dad, to the T.

As our Papa told his grandchildren this story, their eyes became as wide as saucers, so enthralled to now know that their family has a criminal past. They even bragged about it to the other kids at school, how their Papa has been in jail before, they made it into such a marvelous story that Papa became somewhat of a celebrity at their school and was even given the title of the Grandpa who was in J-A-I-L.

So when on Grandparents day at school, when Papa and Nana arrive...well, of course you now know the reason behind the title of this story.

And as they screamed out "Are you the Grandpa who was in Jail?!"

Our Papa just beamed and proudly admitted that yes, that was he.

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