Tuesday, July 28, 2009
Heaven's Perfect Tenor
Friday, February 13, 2009
PapAmore' - Loved Me
Thursday, February 12, 2009
I am at Times, quite Pissed about Him Dying

Wednesday, February 11, 2009
God STILL works Miracles - AML Remission through Only Herbal Therapy
Definitely do take the time to check out the blog Jaymun's Mom made for him...he is a living testimony of God's ability to truly work miracles. His site also contains extensive information on herbal therapy.
My 2.5 year old son's AML relapsed (CNS and marrow) eight months ago. He was born with AML (congenital) and had a BMT back in 2006. After several months and two rounds of chemo he was still not in remission. This was six months ago that we went home - his marrow was aplastic - he was neutropenic - and he was recovering from a cranial tap to drain subdural hygromas.
Although we went home to only have a few weeks of "quality of life", now it is six months later and his marrow has finally recovered - and there is no cancer in his CNS fluid either!
We did quite extensive herbal therapy in the past six months - now that he is in remission - we are leaning against CNS radiation (the normal path).
Medical details are on our blog: www.jaymun.com/journal/2009_02_02
Any thoughts on this situation?
Reflecting...Missing

Perhaps I should share a little bit more, about me...
I know death and I know how to get through it, I know what is ahead, how it feels, how it smells, what it looks like...I know it from my first Father that I lost in 7th grade, I know it from the deaths of my Grandparents, Uncles and Aunts, I know death suddenly and I know death "planned" out, I know it in young lives and I know it with those of many years, I know it from my best friend, who died when we were both 18, whose last place on earth was in the passenger seat of my car.
I know death, death does not scare scare me. Because I know what comes next...and how much that is something to look forward to, not dread.
And here and now, I know when to not give up and I won't, I will try, I will continue to spend time with my Dad, to capture these moments, to cherish each second we have, but I won't give up. All the while, I will look him in the eye and I will tell my Daddy, that I'm not giving up. As long as he has breath in him, I'm not giving up.
So, what I ask for is help in resources and advice...I don't need to know how to let go, I already know how.
Tuesday, February 10, 2009
Grieving Hurts

Sunday, February 8, 2009
Notable Quotes on Grief

C. S. Lewis
Aeschylus
Christian Nestell Bovee
Anne Grant
Queen Elizabeth II
Washington Irving
Hugh Leonard
Nigella Lawson
Moliere
Franz Schubert
Terence
Franz Schubert
Thursday, February 5, 2009
Death is so Powerless

Tuesday, February 3, 2009
Grief Cannot Be "Scheduled"

Pain unexpected
Monday, February 2, 2009
by Wanda Lenderink, my heartbroken Mom and Wife of my Dad

AS THE CLOCKS CONTINUE TO TICK.......
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
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.
Saturday, January 31, 2009
Dear Physicians, Please Won't You Share?
Allow me to somewhat knowingly decipher this article below for you...
In a nutshell, not every physician is a good sharer. Meaning that, unfortunately, some Moms slacked off and never taught the important "sharing virtue" to their children and some of those children grew up and became doctors.
Current awareness of "end of life care" including hospice, palliative care, supportive care, etc. should FOREMOST be the personal responsibility of EVERY PHYSICIAN to inform EVERY ONE of their patients of and with.
Patients go to physicians that they trust with their VERY LIVES, thus if there is any information that may even somewhat be beneficial to any patient (regardless of the physicians own personal opinions and experiences) their physician OWES IT TO THEIR PATIENTS LIVES to clearly share these resources!
Countless people, organizations, political groups, advocates, etc. and so on STRUGGLE to come up with additional ways to get End of Life and Palliative Care information to each and every patient, exceedingly high amounts of money and resources are used and spent in order to do so.
Why are all of these efforts to spread End of Life and Palliative Care Awareness necessary to begin with?!!
It makes absolutely no sense whatsoever, relaying this information should not be difficult! All each physician needs to do is personally and notedly hand one of those fliers/books/dvds/resources that they are constantly gifted with to their patients! That's it!
Do we really need to pass a law requiring physicians to "share"?
End-of-life care differs by race: study
NEW YORK (Reuters Health) - The way that older adults with advanced cancer live out their last days seems to vary based on race, a US study suggests.
But the reasons for the discrepancies remain unclear, according to the researchers, led by Dr. Alexander K. Smith of Beth Israel Deaconess Medical Center in Boston.
"Improved understanding," they write, "will hopefully lead to interventions that improve end-of-life care for all patients with advanced cancer."
SOURCE: Journal of the American Geriatrics Society, January 2009.
Thursday, January 29, 2009
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 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
Potential effective treatment of refractory and relapsed AML
Mylotarg® May Decrease Relapse Rate in Patients with Newly Diagnosed AML (01/16/2007)
Mylotarg® and Vidaza® Effective for Elderly with AML or MDS (01/03/2007)
Uplifting Reply from Congressman Pete Hoekstra
Dear Ms. Huizenga-Lubbers:
Thank you for contacting me about palliative care. I am sorry to hear of your father's passing and am disheartened to learn of the difficulties that you have experienced.
I appreciate hearing of your support for palliative care. President Obama has prioritized health care reform in the early days of his administration. I look forward to the debate over ensuring that patients have access to the types of care that they need.
Please know that I will remain mindful of your support for the expanded use of palliative care as Congress continues to deliberate over the matter. I hope Congress and our new president will work in a spirit of bipartisanship in developing solutions to such an important issue.
Again, thank you for sharing your views with me.
Sincerely,
Pete Hoekstra
Member of Congress
Wednesday, January 28, 2009
We Lost our Haven in the Middle of the Storm

Who will protect us now?
Tuesday, January 27, 2009
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.Sunday, January 25, 2009
Sigh a thousand sighs

PIANO DI AMORE - PAPA PRESENT DAY
It arrived yesterday, in the afternoon...our surprise gift from you, our PapAmore.Saturday, January 24, 2009
Arend 'Odee''s Update by Wanda Lenderink

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