Tuesday, June 30, 2009

Heroic Journey - Grief Support for Teens

HEROIC JOURNEY is a unique 7 day experience funded and delivered in partnership with Outward Bound, and is specifically designed for teens coping with the death of a loved one. It is not intended to be “counseling” or “therapy”. It is about teens connecting and building supportive relationships with other teens going through similar challenges in life. At its essence, it is wilderness adventure sprinkled with light grief work activities.

Click below to watch a video from the 2008 Heroic Journey

To Enroll Today click here call 866-467-7644

The challenges and successes that come with climbing, rappelling, and hiking up mountains, are metaphors for life and the kids get it. By adding some grief related rituals, and ceremonies that appeal to the teens, they are moved to express themselves in ways that they typically can’t, or won’t, when they are back at home in their everyday surroundings.

The program began three years ago when Jason Stout, and Melyssa Levin, a Judi’s House Program Coordinator, accompanied seven teens from our grief support group on an Outward Bound course. At the time, Jason was an Outward Bound employee and volunteering in his spare time at Judi’s House. The idea for this course was inspired by his own death loss experiences and his passion for Outward Bound and wilderness adventure.

The first two years were deemed a huge success by the professional staff at Judi’s House and more importantly by the families. So much so, that Brian Griese agreed to help me make this available to grieving kids from throughout the Denver Metro area, Colorado, and the United States. We announced the national program only months ago and we already have 125 participants enrolled and more on our waitlist. Meanwhile, Brian has been tirelessly fundraising $150,000 to pay for the program and insists on providing all of the kids with full-tuition scholarships.

Because of the combined effort of all involved, this summer, 125 grieving teens, from all over country will meet in the Colorado Rockies where they will discover their inner strength, face their fears, and experience the support of other kids dealing with the death of a loved one. Teens that have had a parent, sibling, friend, or family member die, from cancer, heart disease, auto crash, homicide, suicide, etc. will spend 7 days, climbing, rappelling, swinging from trees, and ascending 14,000 foot peaks.

Memorable Moments
One night, camping on the Yampa River, we sat in a big circle. As the sun went down we passed the large “sacred bowl” around for the “Water Ceremony.” The sacred bowl was filled with “mystical water” and a “magical ladle”. As we passed it around, each person would take a scoop of water, and then pour it into a smaller sacred bowl. As we all poured the water with the magical ladle, we were to share a message to our loved ones. “Dad, I miss going to Coors Field with you and watching the Rockies play”. “Mom, I miss the smell of French toast in the house”. “I’m sorry I was mean to you”, “Dad, thank you for giving me your sense of humor. I miss your sense of humor.”

It was a powerful activity and more than half of us were crying. Once we all shared our messages, one of the teens grabbed the sacred bowl, now filled with messages, and poured it into the mighty Yampa River. The messages were then released to meander through the mountains and desert until they met the ocean, and there the messages would be delivered to the people we lost. After the water was gently poured into the river, the teens gathered on the sandy bank, and stood shoulder to shoulder, in silence, as the sun went down watching their messages mix with the waters of the Yampa. Minutes later, the water of their tears turned to laughter and smiles. For some it was the first time we had ever seen a sigh of happiness. The power of wilderness, being with people who share our pain and a good grief activity can make a world of difference in a kid who is suffering.

Monday, June 29, 2009

A Love Letter from Dad

My Child,

You may not know me,
but I know everything about you.
Psalm 139:1

I know when you sit down and when you rise up.
Psalm 139:2

I am familiar with all your ways.
Psalm 139:3

Even the very hairs on your head are numbered.
Matthew 10:29-31

For you were made in my image.
Genesis 1:27

In me you live and move and have your being.
Acts 17:28

For you are my offspring.
Acts 17:28

I knew you even before you were conceived.
Jeremiah 1:4-5

I chose you when I planned creation.
Ephesians 1:11-12

You were not a mistake,
for all your days are written in my book.
Psalm 139:15-16

I determined the exact time of your birth
and where you would live.
Acts 17:26

You are fearfully and wonderfully made.
Psalm 139:14

I knit you together in your mother’s womb.
Psalm 139:13

And brought you forth on the day you were born.
Psalm 71:6

I have been misrepresented
by those who don’t know me.
John 8:41-44

I am not distant and angry,
but am the complete expression of love.
1 John 4:16

And it is my desire to lavish my love on you.
1 John 3:1

Simply because you are my child
and I am your Father.
1 John 3:1

I offer you more than your earthly father ever could.
Matthew 7:11

For I am the perfect father.
Matthew 5:48

Every good gift that you receive comes from my hand.
James 1:17

For I am your provider and I meet all your needs.
Matthew 6:31-33

My plan for your future has always been filled with hope.
Jeremiah 29:11

Because I love you with an everlasting love.
Jeremiah 31:3

My thoughts toward you are countless
as the sand on the seashore.
Psalms 139:17-18

And I rejoice over you with singing.
Zephaniah 3:17

I will never stop doing good to you.
Jeremiah 32:40

For you are my treasured possession.
Exodus 19:5

I desire to establish you
with all my heart and all my soul.
Jeremiah 32:41

And I want to show you great and marvelous things.
Jeremiah 33:3

If you seek me with all your heart,
you will find me.
Deuteronomy 4:29

Delight in me and I will give you
the desires of your heart.
Psalm 37:4

For it is I who gave you those desires.
Philippians 2:13

I am able to do more for you
than you could possibly imagine.
Ephesians 3:20

For I am your greatest encourager.
2 Thessalonians 2:16-17

I am also the Father who comforts you
in all your troubles.
2 Corinthians 1:3-4

When you are brokenhearted,
I am close to you.
Psalm 34:18

As a shepherd carries a lamb,
I have carried you close to my heart.
Isaiah 40:11

One day I will wipe away
every tear from your eyes.
Revelation 21:3-4

And I’ll take away all the pain
you have suffered on this earth.
Revelation 21:3-4

I am your Father, and I love you
even as I love my son, Jesus.
John 17:23

For in Jesus, my love for you is revealed.
John 17:26

He is the exact representation of my being.
Hebrews 1:3

He came to demonstrate that I am for you,
not against you.
Romans 8:31

And to tell you that I am not counting your sins.
2 Corinthians 5:18-19

Jesus died so that you and I could be reconciled.
2 Corinthians 5:18-19

His death was the ultimate expression
of my love for you.
1 John 4:10

I gave up everything I loved
that I might gain your love.
Romans 8:31-32

If you receive the gift of my son Jesus,
you receive me.
1 John 2:23

And nothing will ever separate you
from my love again.
Romans 8:38-39

Come home and I’ll throw the biggest party
heaven has ever seen.
Luke 15:7

I have always been Father,
and will always be Father.
Ephesians 3:14-15

My question is…
Will you be my child?
John 1:12-13

I am waiting for you.
Luke 15:11-32

Love, Your Dad
Almighty God

Sunday, June 28, 2009

You Are My Beloved, Says the Lord

For PapAmore', Arend 'Odee' Lenderink

Let Your Grief Speak

Feel Better in the Mourning™ -- Give Grief a Voice

Grievers seeking counseling are often encouraged to talk about how they are feeling. What you say does get said, but there is no permanent record or "snapshot." If you write those responses down, apply paint to a piece of paper or canvas, or do a collage, the "snapshot" captures a moment and makes it more concrete. When we create our "snapshots," we may feel as though the particular upset or misery we are experiencing will be everlasting. Days, months or years later, you can look at what you have expressed, and realize that you've moved on, or feel better, or can manage to go an entire day without tears. If you think it would be disloyal to your loved one to ever move on in your grieving, honor that, but remember that all things change over time -- grief, too.

Excerpts from Feel Better in the Mourning: Give Grief a Voice - Click here for an abridged version of Chapter 13, which is called Tough Times. This chapter will help you anticipate difficult days in the aftermath of losing a loved one.

An Invitation to Give Grief a Voice: Think of this book as one continual invitation to tap what may be hidden creative juices residing inside in order to move yourself along with your grief. Don't fall into the trap of expecting or hoping for the express train through this process. Use the examples in this chapter or subsequent ones as models or as springboards to stimulate your own unique expression. Remember: you deserve a better taste in your mouth. Even if recording the raw details of your loss feels like swallowing a bitter pill, be assured that most pills do make us feel better.

May the journey you take through the pages of this book, or on pages of your own, ease the challenges your heart and soul are experiencing in the aftermath of your loss.

The Elusive "Other Side" of Grief
Grief does not disappear. It recedes. Believing there is a finish line to hurry and scurry toward sets up the fantasy that a day will arrive when we can declare, "Okay, now I'm over it." Too many people have been humbled by an unexpected re-opening of the scar to suggest it is safe or accurate to say this. The word, "closure," has lost popularity amongst bereavement specialists because it implies a similar promise that you will find a way to put an end to your grief, once and for all.

Sunday, June 21, 2009

Happy Papa's Day

I'm sorry for swearing, Papa...but, this is the shittiest day ever...and I'm really pissed off about you not being here on "Happy Papa's Day" and yes, you can tell God that I think that as well...

But, then...it's really not, a bad day...


Annoying that you taught me to think this way too!

I just wanted to have ONE day to be legitimately annoyed and upset...but...then I had to hear you in my mind of course, and no longer am I "feeling sorry for" myself. ;)


Thank You, Papa...for being a Father.

Thank You my Papa, for your Fatherly example to so many.

Even now, amidst your earthly lacking presence...your very being...it comforts, inspires and guides us all...

Lucky to HAVE you...always...are we...

I Love You...

Happy Papa's Day...xoxoxo

For PapAmore', Arend 'Odee' Lenderink

Thursday, June 18, 2009

The Last Monday Memory

Remember Monday?

Child #8


Wed, Jan 7, 2009
at 6:47 PM

Remember Monday?

Do you remember Monday?

Monday you drove yourself to go get platelets, Monday you sounded more like you, Monday you walked ahead of me out the door of the hospital, Monday you drove me to my car...do you remember Monday?

Today is Wednesday and although we love you just the same if not more today, you are not the same as you were on Monday.

Low Dose Chemo is getting more Mondays...no, it is not a cure, yes it is more Mondays.

More time for you and Mom could happen, but only on Mondays.

We can't have you forever, God needs you more, I know that, I won't fight that, but please, please don't walk away from the Mondays you still have here.

Tuesday, June 16, 2009

To ignore your friend when he or she needs you the most is the ultimate social shunning

What to Do When a Friend Loses a Loved One 101

Supportive Voice Vol. 11 No. 1 Winter 2006

by Julie Ireland

Ms. Ireland has a master's degree in counseling and has been a therapist, public speaker, program director and comedian for 15 years. She owns Funny Business, a workplace-focused public speaking company that produces seminars on anger and domestic violence in the workplace, and more.

I remember returning to work after my mother died. Suddenly every door to my co-worker's offices was tightly shut. Hardly anyone mumbled a word to me. There was no card. There were no flowers. No hugs. There wasn't even a kind word from 95 percent of them. Interestingly these people were all in the human service field with years of counseling in their background. They were all women.

This group liked to talk. They lived to "process their feelings" at endless staff meetings. This was normally a very "touchy-feely" group. But bring death into the mix. Wow. That sure shut them up.

Death is uncomfortable. We don't know what to say. So unfortunately we say nothing. This is the worst possible thing you can do.

In the weeks following my mom's death, the thing that surprised me the most was reaction from others. Friends didn't send cards. Phone conversations went dead silent the minute I told callers my mom died. I didn't receive a single flower from a personal friend. But I was one of the lucky ones. I did have at least a couple of friends who called and were very kind and let me cry endlessly. Without that support, I am not sure what I would have done.

The grieving person feels shocked, afraid, depressed, suicidal, hopeless, and angry. Don't let these feelings scare you. They are normal.

In thinking about people's lack of reaction, I thought how interesting because death isn't a freak occurrence. Given that the one thing we are guaranteed in life is . . . well . . . death, it strikes me as odd that people don't know how to react to it. I thought, what if someone gave a primer on WHAT TO DO WHEN A FRIEND LOSES A LOVED ONE 101.

  • Always send a card. It hurts so much worse not to be acknowledged.
  • Send a single flower, a plant, or a bunch of daisies. It doesn't have to be costly. Your friend will appreciate the thoughtfulness of the gesture.
  • Bring food. This is so helpful.
  • Don't think, "If we bring it up they're just going to get upset." They already are upset. So "bring it up." The alternative is ignoring the death, and that is significantly worse.
  • Call and "check in" on your friend. It is OK to say, "I am so sorry your mom died." Your friends will appreciate this. Then call them every week. If this is wildly outside your comfort level, then at least leave a message on the home machine telling them that you are thinking of them.
  • Understand that your friends may isolate. They probably do not want to be cheered up.
  • Ask your friends, "What can I do for you?" They may need you to just listen; they may need you to call and know that you care.
  • Make sure you are specific. Please don't say, "I'm sorry for your loss." Say, "I'm sorry Pat died." It is always better to use the person's name. It is more personal.
  • If you are grieving for the deceased person . . . say that. Say for example, "I will miss your mom also; she sure was special." It helped me to know that other people miss her as much as I do.
  • Know that grieving isn't something that ends in six months, or a year. People have subliminal attitudes such as "Aren't you over it? . . . It has been a year already."
  • Send them a book on grief. That helps. Really.
  • Don't overlook the child or teen who is grieving. They are just as hurt and confused as you would be. There are books written especially for them.
  • Go to the funeral . . . to support your friends. They will never forget that you showed up. You do not need to have known the deceased.
  • It is OK to say, "I don't know what to say."
  • Offer to pick up the children. Offer to finish that report. Offer to pick up the dry-cleaning. Often they feel helpless to take care of the mundane tasks.
  • Be extra sensitive for milestones. Acknowledge that it's been one year since the loved one died. Be aware that it's Mother's Day and the person is feeling especially alone. Or Valentine's Day for the loss of a partner. Or the deceased person's birthday. Or the first Thanksgiving without their family member or friend.
  • Your friend may be angry with God, the world, and the deceased. This is normal.
  • Be aware they may feel guilt.
  • Tell stories about the person who died; they are cherished.
  • People think that death is contagious. It is not.

Don't say:

  • "They are in a better place."
  • "You need to see a therapist." They already feel low; they don't need your implication that they are crazy too or that their grief is inappropriate.
  • "Aren't you over it?" The pain takes years to subside.
  • "You are lucky you still have a husband" (or children) or whatever. They do not feel lucky.
  • "You will get over it." You never get over it.
  • "Thank God I still have my mom, I don't know what I would do." This is extremely insensitive.

The second year after a death is very hard because everyone thinks it is behind you. However, the bereaved still need support.

Your silence tells your grieving friend that their loved one's life was not important.

After a death we feel lonely. It is a loneliness that goes deep. If anyone ever needed a friend it is now. To ignore your friend when he or she needs you the most is the ultimate social shunning. One day, you too will experience a profound loss. Consider how you would like to be treated.

Monday, June 15, 2009

I Think I'd Rather Learn More About Heaven Than Try To Understand Grief

Well, some glad morning when this life is oer,
I'll fly away.
To a home on God's celestial shore,
I'll fly away.

Oh, I'll fly away, O Glory,
I'll fly away
When I die, Hallelujah, bye and bye,
I'll fly away.

When the shadows of this life have gone,
I'll fly away.
Like a bird from prison bars have flown,
I'll fly away.

Oh, I'll fly away, O Glory,
I'll fly away.
When I die, Hallelujah, bye and bye,
I'll fly away.

--- Instrumental ---

Well, just a few more weary days and then,
I'll fly away.
To a land where joy shall never end,
I'll fly away.

Oh, I'll fly away, O Glory,
I'll fly away.
When I die, Hallelujah, bye and bye,
I'll fly away.

Oh, I'll fly away, O Glory,
I'll fly away.
When I die, Hallelujah, bye and bye,
I'll fly away...

For PapAmore', Arend 'Odee' Lenderink

Saturday, June 13, 2009

World Blood Donor Day, June 14th, 2009

June 14, 2009

World Blood Donor Day is day dedicated to thanking and celebrating voluntary non-remunerated blood donors.

Millions of people owe their lives to people they will never meet – people who donate their blood freely and without any reward. However, the overwhelming majority of the world’s population do not have access to safe blood. Over 80 million units of blood are donated every year, but only 38% are collected in developing countries where 82% of the global population live.

In addition, many countries remain dependent on donation by the families or friends of patients who require blood and, in some countries, blood donors still receive payment.Yet evidence from around the world demonstrates that voluntary unpaid donors are the foundation of a safe blood supply because they are least likely to transmit potentially life-threatening infections, such as HIV and hepatitis viruses, to the recipients of their blood. It is to these unsung heroes that World Blood Donor Day is dedicated.

World Blood Donor Day builds on the success of World Health Day 2000 which was devoted to the theme ‘Blood Saves Lives. Safe Blood Starts With Me. The enthusiasm and energy with which this day was celebrated indicated that there would be a positive response to an opportunity to give thanks to the millions of people who give the precious gift of life. It also builds on International Blood Donor Day organized annually by the International Federation of Blood Donor Organizations since 1995.

For PapAmore', Arend 'Odee' Lenderink

Monday, June 8, 2009

Groundbreaking Research Leading to a Potential Cure for Cancer

Staff Writer ( news@nbc40.net ) - 6/4/09 02:27 pm





(SOT: Dr. Richard Junghans, Researcher)
"And right now with the recent award which we got, I think we have a decent chance of doing it."



(SOT: Dr. Richard Junghans, Researcher)
"T–cells are our own normal white blood cells that evolve to kill virus infected cells."


(SOT: Dr. Richard Junghans, Researcher)
"This shows a t–cell, a small cell here attached to a virus infected cell and the t–cell's doing a lot of signaling through its surface and putting holes in the cell and POOF, you see like that it goes up and explodes and now the cell shrinks."

(SOT: Dr. Richard Junghans, Researcher)
"So our goal with this new technology is to fool the t–cells in to thinking the cancer has a virus infection."

(SOT: Dr. Richard Junghans, Researcher)
"We can cure cancer in mice."

(SOT: Dr. Richard Junghans, Researcher)
"And then we manipulate them in the laboratory using gene therapy techniques to modify them — we expand them and then re–introduce them back to the patient and hopefully they'll go as little marauders throughout the body anywhere the cancer is to eliminate it and cure the patient in the same way that a virus infection is cured."



Several reports have questioned the necessity of keeping AML patients in the hospital after chemotherapy till full neutrophil count recovery.

Thanks to the availability of an emergency unit specifically dedicated to out-patients with hematologic diseases, selected out-hospital management of AML patients during post-consolidation cytopenia is a feasible, well accepted and cost-saving option, and can contribute to lower the risk of developing severe nosocomial infections. The empiric therapy with once-a-day ceftriaxone plus amikacin was effective, with the exception of staphylococcal infections, and made it possible to discharge patients early to continue treatment in an out-patient setting. 

RATIONALE: Gathering information about patients with myelodysplastic syndrome or acute myeloid leukemia who are discharged after finishing chemotherapy, or who stay in the hospital until blood counts return to normal, may help doctors learn more about a patient's quality of life, use of medical services, and the cost of these services.
PURPOSE: This clinical trial is studying early discharge and outpatient care in patients who have undergone chemotherapy for myelodysplastic syndrome or acute myeloid leukemia.
*Within 72 hours after completion of induction chemotherapy, patients are discharged from the hospital.

In recent years, several reports have questioned the necessity of keeping patients in hospital after chemotherapy till full neutrophil count recovery.  This study shows that selected patients can be discharged and given domiciliary treatment safely, even with inadequate home care facilities.

These data are important as there has been lingering concern that Neupogen could increase the relapse rate by stimulating myeloid blasts. However, this study clearly demonstrates that Neupogen, and by extrapolation the more commonly used Neulasta® (pegfilgrastim), can be used safely in patients with AML.

For PapAmore', Arend 'Odee' Lenderink

Sunday, June 7, 2009

Papa's Spirit Will Never Die

For PapAmore', Arend 'Odee' Lenderink

If the leukemia keeps coming back...

If the leukemia keeps coming back or doesn't go away, further chemotherapy treatment will probably not be very helpful. If a stem cell transplant is not an option, a patient may want to consider taking part in a clinical trial of newer treatments.

Those who want to continue treatment to fight the leukemia as long as they can need to consider the odds of more treatment having any benefit. In many cases, the doctor can estimate the response rate for the treatment being considered. Some people are tempted to try more chemotherapy, for example, even when their doctors say that the odds of benefit are less than 1%. In this situation, it is important to think about and understand the reasons for choosing this plan.

Palliative Treatment

If a clinical trial is not an option, it is important at this time to focus on relieving the symptoms of the leukemia. This is known as palliative treatment. The doctor may advise less intensive chemotherapy with the goal of slowing the leukemia growth instead of trying to cure it.

As the leukemia grows in the bone marrow it may cause pain. It is important to treat it with radiation or appropriate pain-killing medicines. If medicines such as aspirin and ibuprofen don't help with the pain, more potent opioid medicines such as morphine are likely to be helpful.

Other common symptoms from leukemia are low blood counts and fatigue. Medicines or blood transfusions may be needed to help correct these problems. Nausea and loss of appetite can be treated with medicines and high calorie food supplements. Infections that occur may be treated with antibiotics.

At some point, a patient may benefit from hospice care. Most of the time, this can be given at home. The leukemia may be causing symptoms or problems that need attention, and hospice focuses on the patient's comfort. Receiving hospice care doesn't mean you can't have treatment for the problems caused by the cancer or other health conditions. It just means that the focus of care is on living life as fully as possible and feeling as well as one can at this difficult stage.

Remember also that maintaining hope is important. The hope for a cure may not be as bright, but there is still hope for good times with family and friends -- times that can bring happiness and meaning. In a way, pausing at this time in your cancer treatment is an opportunity to refocus on the most important things in your life. This is the time to do some things you've always wanted to do and to stop doing the things you no longer want to do.

Last Medical Review: 08/03/2007
Last Revised: 05/14/2009

For PapAmore', Arend 'Odee' Lenderink

Saturday, June 6, 2009

Do You Want to Save Someone's Life?

Two years ago I donated 6,000,000 stem cells to an unrelated recipient who was diagnosed with leukemia.

I didn't know his name, where he lived or who he was. I had joined the National Marrow Donor Program's Registry when I was 19, but never thought I'd get the call since my Korean and Jewish background isn't exactly common and most matches occur because of a shared ethnic background. But in December of 2006, right before the holidays, I got the call that would change my life - and my recipient's - forever.

All I was told was that this man was 29 years old and dying. I was the exact same age, but I was perfectly healthy, working as a journalist in Los Angeles and interviewing the world's most interesting and glamorous people. A few weeks later I was at UCLA Medical Center donating stem cells for eight hours. It didn't hurt, it wasn't scary and yes, I would do it again - in a heartbeat. Maybe you've never heard of the Registry. Or perhaps you have a misconception that it's painful to donate. I'm here to tell you that it's not. So why not join and have the chance to save a life?


This week, the National Marrow Donor Program renames its donor and umbilical cord blood registry, Be The Match. "There's a lack of accurate information regarding the procedures and the need," says National Marrow Donor Program Account Executive of Recruitment Anna Marie Cruz. "People are always shocked to discover that stem cell collection is the more common procedure used today and how simple it is to complete the marrow collection, which is the other possible procedure."

With so many different tissue types in the world, the challenge of finding the perfect match for a dying patient is hard to comprehend. The more people who join the Registry mean the more recipients who will get a second chance at life. "Be the Match is a call to action," says Jeffrey W. Chell, M.D., and CEO of NMDP. "You could be the one to save a life." Since tissue types are inherited, patients are most likely to match someone of their own race or ethnicity. There is a desperate need for African American, American Indian, Asian, Native Hawaiian or Pacific Islander, Hispanic or Latino and multiracial donors.

Two year-old Hunter Zen Thawley, who has AML leukemia, found a match on the Be The Match Registry. His transplant is scheduled for next month.

By joining the Registry (which requires a simple cheek swab) you may be identified as a match for someone or you may never match anyone. But, like me, you may be the sole person on the registry of 12 million who can save a patient's life. Seventy percent of patients in need of a transplant do not have a matching donor in their family. Families, like the one behind the blog Healing Hunter, are dependent on the Be the Match Registry to find a match - and save a life.

Donating stem cells to my recipient has been the single best thing I've ever done. Waiting a year to find out if my recipient had survived was tough, but when I got that call and heard his voice, it was one of the most amazing moments of my life. We send each other cards, talk on the phone and had the chance to meet in person last November. He thanks me for saving his life, but I feel like thanking him for giving purpose to mine. While I'm not religious, I sometimes wonder if I was put on this earth for this reason.

My recipient's girlfriend Maria, who spent more than 100 days in the hospital with my recipient, Jaciel met my boyfriend Tim and I in Miami last November. Jaciel lives in Fort Myers, Florida and works as a cook.

Thousands of patients diagnosed with leukemia and other life-threatening diseases depend on you to find a match. Wondering what can you do? Grow the registry by becoming a donor, make a tax-deductible contribution or volunteer your time. Since 1987, the NMDP has provided more than 35,000 unrelated transplants to help give patients a second chance at life. Donors never pay for donating and are not paid to donate.

What is stopping you from joining the Be The Match Registry?

For PapAmore', Arend 'Odee' Lenderink

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Don't Be Stupid...This is Life or Death...Get a 2nd Opinion

By Patient Advocate Foundation

Decisions concerning healthcare are among the most important in a person’s life. Many people confronted with a cancer diagnosis feel that they must make a decision and begin treatment as soon as possible. Though this may be true in some instances, taking the time to educate yourself about your disease, seeking a second opinion—or perhaps even further opinions—and weighing your alternatives is a very reasonable course of action. Decisions regarding healthcare should be made only after you have been thoroughly informed about the details of your diagnosis, prognosis, the treatment plans available, and whether the care will be provided at a local or national facility. Proactive decision-making gives a greater degree of control over treatments and will allow you to seek the most appropriate treatment for your diagnosis.

Patient Advocate Foundation (PAF) is a national nonprofit organization that seeks to safeguard patients through effective mediation to ensure access to care, maintenance of employment, and preservation of financial stability. PAF has increasingly seen issues related to patient uncertainty when seeking second opinions, and we would like to share some steps to consider.

Patient Rights

One of the most important rights of every patient is the ability to obtain a second opinion regarding a diagnosis. And yet statistics show that more than one-third of U.S. adults will never seek a second opinion, and almost one-tenth of newly diagnosed patients do not understand their diagnosis. Becoming educated about your diagnosis is critical as you plan your treatment and work with your healthcare team. Now, when many cancers are more treatable than ever before, it’s essential that patients also understand the importance of their right to an accurate diagnosis and to a comprehensive review of all the treatment options. Only when you’re armed with all the information and all the options can you benefit from the many advances being made.

Why You Should Get a Second Opinion

A different doctor may come up with a different diagnosis or offer a different opinion as to treatment options. Factors that may influence a doctor’s opinion include the technology that is available to that doctor, where the doctor received his or her training, and his or her experience in dealing with that particular diagnosis.

Beyond the basic desire for more information and a review of different treatment options, some of the reasons that inspire patients to seek a second opinion include: an initial diagnosis by a non-cancer specialist, an apparent lack of treatment options, a diagnosis with a rare cancer, residency in a rural area that may not see a large volume of cancer patients, a need for specialized treatments, and questions about the operability of a cancer.

While patients might worry that getting second opinions will be awkward or might seem like “bad etiquette,” the reality is that getting a second opinion is standard practice in cancer treatment. You should not worry about hurting your doctor’s feelings. Your primary focus should be finding the most appropriate care and the best information to manage your diagnosis so that you can feel confident about your care. By communicating openly with your primary physician, you will be assured that all the necessary records are exchanged, and you will find that, in general, the process will be smooth and should be free of tension. In addition, by acting promptly to secure a second opinion, you will ensure that your treatment and recovery are not unnecessarily delayed.

Any worries regarding the awkwardness of the situation should certainly not stop you from pursuing a second opinion, especially as studies have shown that for 30 percent of patients who sought second opinions for elective surgery, the two opinions were not in agreement. In addition, 18 percent of those who were required to obtain a second opinion by their insurance company also found that the opinions of two doctors differed.

Ultimately, all the effort will be well worth any challenges that arise. When you have taken the time to get a second opinion and the second doctor’s opinion is the same as or similar to the first doctor’s opinion, you will be confident in the care you’re receiving. Because serious illnesses like cancer may require prolonged treatments, this confidence in having chosen the best treatment for your particular situation will be important throughout your journey. And, if you receive different opinions, you will proceed knowing that you have been educated and have made an informed decision based on more than one expert’s opinion.

Medically No More Options AML? Wrong! Do Not Give Up!

Hydroxyurea, azacitidine and gemtuzumab ozogamicin therapy in patients with previously untreated non-M3 acute myeloid leukemia and high-risk myelodysplastic syndromes in the elderly: results from a pilot trial.

Department of Medicine, Loyola University Medical Centre, Division of Hematology Oncology, Maywood, IL 60153, USA. snand@lumc.edu

Elderly patients with acute myeloid leukemia (AML) and high-risk myelodysplastic syndromes (MDS) have a poor prognosis due to low response rates (26-46%) to standard chemotherapy and high treatment-related mortality (11-31%).

In this Phase II study, we used a combination of hydroxyurea (HU), azacitidine and low dose gemtuzumab ozogamicin (GO) to assess its efficacy and toxicity in this group of patients. Twenty patients with non-M3 AML and MDS were treated with this regimen.

The treatment was begun with HU 1500 mg orally twice daily to lower white blood cell count below 10,000/microL, followed by azacitidine 75 mg/m(2) subcutaneously for 7 days and GO 3 mg/m(2) on day 8. Patients who achieved complete remission (CR) received a consolidation course.

The median age of patients was 76 years. Eleven patients (55%) were treated in the outpatient setting. Fourteen (70%) achieved a CR, three of which were incomplete (CRi). The median duration of remission was 8 months and median survival was 10 months.

Performance status of 0-1 was associated with high complete response rate. Overall toxicity was acceptable with only one (5%) early death due to disease progression. 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. These results need to be confirmed in a larger cohort of patients.

More time, quality time, there is nothing I wouldn't do to be able to have had PapAmore' even the minutest amount of time longer...it's what he wanted...more time...it's what no one gave him...more time...

Friday, June 5, 2009

Advances in Acute Myeloid Leukemia

Last time on Patient Power...

May 12, 2009

Advances in Acute Myeloid Leukemia
Acute Myeloid Leukemia, referred to as AML, is one of the most common adult leukemias in the United States, affecting over 13,000 people. It involves an overgrowth of immature white blood cells, leaving the body's immune system damaged. Listen to this webcast for the latest in treatment information.

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