DIPG/DIPT Discussion

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Just One More Day for Love, Hope & a Cure

A searchable blog on DIPG research, DIPG news, recent publications, DIPG Foundations, DIPG researchers, clinical trials as well as other issues relating to Diffuse Intrinsic Pontine Tumors- both Diffuse Intrinsic Pontine Gliomas (DIPGs) and Atypical Pontine Lesions (APLs).

For parents, family and friends of children with DIPG looking for information and connection to others dealing with DIPG please check the buttons on the right hand side for resources.

Wednesday, February 25, 2009

Thank You Michigan State University Child Life Organization for Spartan Students

Members of the MSU Child Life Organization volunteer in the pediatric wing at Sparrow Hospital. Through this work, the students have grown to love the Smith family from Dewitt, Michigan. According to MSU student Nicole Tanghe, "Andrew is a delightful young man and always has something to say that will make anyone smile." To honor Andrew, the student group organized a fundraiser for pediatric cancer research. The event featured an information booth, buffet, a silent auction, and children's games. Special guests included some current and former MSU football players. The students' efforts were wonderfully successful and Just One More Day is pleased to receive their generous donation.
Visit JustOneMoreDay.org to learn more
about diffuse intrinsic pontine gliomas, the Smith family,
and how you can make a difference.

Tuesday, February 24, 2009

A parents plea to help fight a diffuse intrinsic pontine glioma (DIPG)

Tonight I come to you with a heavy heart and a plea. It has been 3 months since our sweet girl left our arms to be held in the arms of Jesus. She is now painfree, without limitations dancing and singing with no worries or cares. It is a beautiful vision in my mind, but it does not erase the pain and emptiness in my heart. Recently 2 other sweet innocent kids joined her Ellie Willaert and Ian Henderson. It is overwhelming to me to know that 2 more families in one day have been shattered by this dreadful tumor. But what is even more dreadful and heart wrenching is that there will be more. We have no idea why this tumor happens and we have no idea how to effectively stop it and hundreds of children will die each year because of it and hundreds of families each year will be shattered. Thousands of children and families already have been through this in the last 30 years. I don't want to see thousands of more children or families go through this in the next 30 years.

You have all been so faithful in your prayers and willing to support Ella and our family during her fight and even during our grief journey. You keep reminding us that you are here and you have not forgotten. You have shared stories with us how Ella touched you, changed you or made you a better person. Many of you follow other DIPG kids and are touched by them. Now I ask you will you help us fight? Will you help us end this tumor and end the suffering of the children and families who have and will walk in these footsteps? Will you pledge to volunteer, donate, write letters, whatever it takes to get the funding needed to stop this monster? It took me to loose my sweet little girl to know what this disease was, don't wait for that to happen to you, because it can happen to your child it can happen to anyone's child. I am proud and blessed to say that I have a group of friends who are committed to helping me do whatever it takes. To not let another Ella, go through what our Ella went through. I hope that you will join and commit also to one of the many DIPG foundations that have been started in honor of these beautiful children. I hope that you will support the Kids currently fighting DIPG in your community. I beg you to commit in some form, shape or way and show how much these kids have touched you and changed you. I am asking you for HOPE for a brighter future for kids with DIPG. In numbers there is greatness.

With tears, love and hope,
m/o Ella Hope, forever 7

Monday, February 23, 2009

Angel Food Ministries

Even at the very best of times, having a child diagnosed with a life-threatening disease is devastating. Many families are forced to have one parent give up a job due to the demands associated with medical treatment and care for their ill child. The terrible turn with the economy has made the situation even more frightening. Thus, we look for new resources to help families get through the hard times. Today we found an outreach mission which is new to us- Angel Food Ministries.

Angel Food Ministries is a non-denominational, non profit organization dedicated to grocery relief. This ministry was started in Georgia in 1994 by a husband and wife, from their back porch, after a local plant closing affected many families. The idea was to buy high quality food at a discounted wholesale price and pass it on to those in need. The food is always ‘restaurant quality’ and never ‘seconds’ or ‘day old’. The ministry has spread to more than 35 states and feeds more than a half million people a month.

This is not free food; it is food at a discount. However, there are no applications or requirements. Anyone can participate. The recipient is charged about $30.00 for a box of food, which Angel Food estimates will feed a family of four for a week. One can order more than one box. March’s menu is at http://www.angelfoodministries.com/menu_0903en.asp

The way this works is that one signs up with a local host site, which usually takes orders at the beginning of the month. Then, on a pre-determined date later in the month, the food boxes can be picked up at the host site.

Often faith-based organizations try to bridge the gap for those in need. Angel Food is a faith-based organization and a magazine called “The Servant” is included in each box of food. This publication provides information about Angel Food Ministries, inspirational stories, the upcoming menu, recipes, and more.

We have never used the organization but thought it might be helpful to many of us during these difficult times.

Sunday, February 22, 2009

Getting into the brain: approaches to enhance brain drug delivery

A major difficulty in treating brain tumors is overcoming the blood-brain barrier. This is no less true with diffuse intrinsic pontine gliomas.

Unlike other areas of the body where substances can pass freely from the blood into the tissue because there are some space between the cells lining the blood vessels, in the brain movement of substances is significantly limited. This barrier between the blood and the brain is formed by the lining cells of the vessels as well as projections from nearby astrocytes. These two types of cells are knitted together by proteins to form what is called ‘tight junctions’. The entire structure is called the Blood Brain Barrier (BBB). The result is that chemicals, toxins, bacterial and other substances are often kept from getting into the brain. Thus, it serves a daily protective function preventing substances to get to the brain. However with disease such as brain tumors the BBB also can prevent diagnostic and therapeutic agents from reaching their target in the central nervous system.

Researchers and clinicians have developed ways to try to overcome the blood brain barrier. Here are some examples:

  • Intrathecal/Intraventricular Administration - This is chemotherapy directed injected into the cerebral spinal fluid either through a lumbar puncture or a surgically implanted catheter.

  • Intracerebral Implants - Formation of a cavity surgically within a tumor allows the potential to place chemotherapy wafers- such as gliadel wafers. Several of these dime sized wafers can be placed at the time of surgery and will release the chemotherapy slowly over time (carmustine). The advantages include a much higher concentration of chemotherapy in the brain than can be obtained over intravenous administration as well as less systemic side effects. Gliadel is an FDA approved indication at initial and subsequent surgeries for malignant gliomas. This is not an option for those patients who do not have surgically resectable tumor so is not available for DIPGs.

    Video: http://www.gliadel.com/consumer/about/moa_video.aspx

  • Osmotic Blood Brain Barrier Disruption (BBBD) - With BBBD the cells of the BBB are shrunk by a concentrated sugar solution (mannitol). This allows the barrier to open up and ten to hundred fold increase of chemotherapy to enter the brain. A catheter is placed into one of the big arteries (usually the one in the groin called the femoral artery) and a catheter threaded up to the carotid or vertebral vessels. The hypertonic mannitol is injected and afterwards a chemotherapeutic agent is injected. Patients spend a few days in the hospital for each administration. This has been attempted with DIPG tumors.

    Reference: Osmotic blood-brain barrier - disruption chemotherapy for diffuse pontine gliomasJ Neurooncol. 2006 May;77(3):279-84. Epub 2005 Nov 29

  • Convection Enhanced Delivery - Convection-enhanced delivery allows for chemotherapy to get to the tumor by a surgically implanted catheter under a pressure gradient to achieve more distribution than with diffusion alone. There has been limited experimental experience with brain tumors and one article with a DIPG.

    Reference: Real-time image-guided direct convection perfusion of intrinsic brainstem lesions.J Neurosurg. 2007 Jul;107(1):190-7.

  • Drug Carriers - Trojan horses, liposomes and nanoparticles - Most of this is in an investigational level and is not clinical relevant to brain tumors treatment at this time. The hope is that a drug can be combined with another agent which will allow it to cross in a protected manner into the brain. Drugs can be linked to agents that normally cross into the brain.

Reference: Getting into the Brain: Approaches to enhance brain drug delivery CNS Drugs 2009;23(1):35-58.

Copyrignt 2008-2009 Just One More Day for Love, Hope & a Cure, Inc. All rights reserved. The materials and links provided on this site have been prepared for information purposes only and should not be construed as advice or opinions on any specific facts or circumstances. Medical research concerning disease and treatments is an ongoing process. Readers should not act upon this information, but should obtain advice from physicians, medical institutions or other professionals, as appropriate.

Friday, February 20, 2009

DIPG Digest

DIPG News brought to you by:
Just One More Day for Love, Hope & a Cure

February 20, 2009

Medical News -- Convection Enhanced Delivery

New Article:
http://www.ncbi.nlm.nih.gov/pubmed/19212774?ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum : Interstitial continuous infusion therapy in a malignant glioma model in rats.

Background Information:
http://www.ncbi.nlm.nih.gov/pubmed/18952590?ordinalpos=2&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum : Convection-enhanced delivery for the treatment of pediatric neurologic disorders.

http://www.ncbi.nlm.nih.gov/pubmed/17639894?ordinalpos=2&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum : Real-time image-guided direct convective perfusion of intrinsic brainstem lesions.

http://www.ncbi.nlm.nih.gov/pubmed/18076322?ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DiscoveryPanel.Pubmed_Discovery_RA&linkpos=5&log$=relatedreviews&logdbfrom=pubmed :Convection-enhanced delivery for treatment of brain tumors.

Medical News

http://www.ncbi.nlm.nih.gov/pubmed/18784279?ordinalpos=4&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum : Experience with irinotecan for the treatment of malignant glioma.

http://www.plosgenetics.org/article/info:doi/10.1371/journal.pgen.1000374 : A Drosophila Model for EGFR-Ras and PI3K-Dependent Human Glioma

http://www.newswise.com/articles/view/549216/ : Two Gene Mutations Linked to Most Common Brain Cancers - and Longer Survival

Foundations News

http://www.caringbridge.org/visit/gunnergillespie : Gunner's Magic Train is trying to "BOUNCE OUT PEDIATRIC BRAIN TUMORS" We are hosting the fundraiser to raise funds and awareness for brain tumors in hopes of helping to find a cure. WE CHALLENGE your school or organization to try and raise the most money.

http://dipg.blogspot.com/ : DIPG Discussion -- brought to you by Just One More Day for Love, Hope & a Cure. A place to discuss and stay up to date on the diagnosis and treatment of Diffuse Intrinsic Pontine Gliomas and the DIPG community.

For past issues of DIPG Digest please visit http://www.justonemoreday.org/ParentPointers/DIPGDigest.html

Please submit information you feel will be helpful to DIPG families to JustOneMoreDay@cfl.rr.com subject: DIPG Digest

Copyright 2008 - 2009 Just One More Day for Love, Hope & a Cure, Inc. All rights reserved. The materials and links provided on this site have been prepared for information purposes only and should not be construed as advice or opinions on any specific facts or circumstances. Medical research concerning disease and treatments is an ongoing process. Readers should not act upon this information, but should obtain advice from physicians, medical institutions or other professionals, as appropriate.

Saturday, February 14, 2009

Tumor Tissue Analysis for DIPGs

Just One More Day is committed to finding a cure for DIPGs. Many researchers believe in order to find a cure we must begin with tumor tissue analysis. To help these researchers succeed, a fund has been established to support research and logistics for molecular analysis of diffuse intrinsic pontine gliomas. Donations can be made at JustOneMoreDay.org or by clicking the donate button on this page.

Just One More Day has been in contact with many of these researchers and has received detailed information about the studies being conducted. Please take a look at the information provided.

Children’s National Medical Center, Washington DC
National Institutes Of Health
The Hospital for Sick Children, Toronto, Canada

Our website will continue to be updated as we receive more information.

Sunday, February 8, 2009

Diffuse Intrinsic Pontine Glioma

Winter 2008-2009

Have you seen a gold ribbon? Do you know what it stands for? Did you know that September is Childhood Cancer Awareness Month?

I am the mother of a child living with brain cancer, a diffuse intrinsic pontine glioma. I finished breast cancer treatment on July 10th and flew from Michigan to West Virginia that day for the funeral of another child...a beautiful fourteen year old girl who lost her battle with the same rare brain cancer.

Everywhere I look I see pink ribbons, I feel gratefulness...and I feel anguish. According to an article published in the New York Times on September 22, 2008, as a result of advances in treatment “...98 percent of women with early-stage [breast] cancers survive at least five years….” Why is this true? Because we have banded together to raise awareness and funding for our mothers, our sisters, our aunts, and our daughters. Our children who are living with—and dying from—cancer desperately need that same attention...and funding.

Helen Jonsen, Forbes.com senior editor and mother of a child who recently underwent treatment for osteosarcoma, stated in a September 12th article, “Cancer is the No. 1 disease killer of children in the U.S. ...We tend to talk about it in hushed tones instead of screaming for help. But scream we should.” The article goes on to say, “The funding for pediatric cancer clinical trials has gone down every year since 2003, and is currently $26.4 million. By comparison, NCI funding for AIDS research was $254 million in 2006; funding for breast cancer topped $584 million the same year.”

September 13th was our nation's first Childhood Cancer Awareness Day. When I didn't see anything about it in the news—but I did hear about National Talk Like a Pirate Day a couple days later, I made some calls to our local news stations. For some reason I can't get the words of one of the story editors out of my mind. “So...what's your event?” Later…”Pitch me a story.”

Let's see...ummmm...would the deaths of 2,300 children each year be newsworthy? What about the diagnosis of 46 children each and every school day? What about the fact that only 2/3 of children diagnosed with cancer will survive? We could move on to funding. Is it newsworthy that for every dollar spent on a patient with prostate cancer, less than 20 cents is spent on a child with cancer...or that a patient with breast cancer has triple the research resource allocated to her when compared to a child?

When I mentioned that Child Cancer Awareness Day--and month--are a national thing, I was told, 'We put local news first.' Okay...I can handle that. A local event...I have a list of them.

The shock of a family receiving a breast cancer diagnosis on an October Monday afternoon, and taking their six-year-old to the Emergency Room on Thursday only to be told, “There is a large area of swelling in the brainstem; we suspect a mass.” We could always throw in the comic relief of the words, “My mom has a mass!” coming out of the mouth on that happy little face.

How about a mother leaving the Pediatric Intensive Care Unit late that night to go home because she knows she needs to get a good night's sleep before attending an Interdisciplinary Clinic early the next morning...where her own treatment plan will be recommended?

How about a local pastor, husband, and father being given the specifics of his son's grim diagnosis and prognosis in one hospital while waiting for news of the specifics of his wife's diagnosis and prognosis from the Cancer Center at another hospital?

How about an 11-year-old boy and an 8-year-old girl being abruptly pulled out of the routine world of reading, writing, arithmetic, language, history and science as taught to them by Mom at home...and being thrown into a class on brain anatomy and abnormalities (specifically their little brother's) taught appropriately and compassionately by an MSU med school professor...who also happens to be their brother's new oncologist?

How about a six-year-old who finds himself no longer able to play the piano, the violin, or the cello because he has lost the strength on the left side of his body?

How about a mother waking up in her child's hospital room one morning, showering, and walking downstairs for her lumpectomy...while her husband takes over the duties of hospital parent and waits anxiously in his son's room for news of his wife's surgery?

Looking for a human interest story? Try the same mother moving back into the hospital early on a Sunday morning four days later so that her husband, a pastor, can be in church...only to watch in disbelief as her fun-loving, active six-year-old--determined not to have an accident--becomes too weak to sit up to go to the bathroom on a bedside commode. What about the willingness of that little boy to allow the nurses to help him even with the most private of things...because he knows his mother is recovering from surgery and he is concerned for her well-being?

Not sensational enough? Let's fastforward to Saturday, November 24th, 2007...two days after Thanksgiving. A mother sits in a hospital room with her sleeping son. She ends a phone call because she hears an alarm she has never heard before, an alarm letting the nurses know that her son's oxygen level is dropping. Soon the room is full, and it is determined that the child is disoriented, then staring ahead...completely unresponsive. Somehow everyone moves with the child on that bed through the hallways to the Pediatric Intensive Care Unit where the intensivist begins the work of saving a precious life. Aside, the question parents never want to hear, though one that must be asked, “Given his prognosis—do you want us to resuscitate him, if necessary?” The father, who has just arrived, breaks down in the unbelievable stress of the moment. The mother realizes the urgency of the situation, pushes emotions aside, and asks, 'Do we know what is happening?' The answer is no. 'Then, yes, we want you to do everything you can for him.' She stands at the foot of the bed with one of her son's oncologists. Together, they watch the PICU team work...with purpose...like a machine. The mother steps outside the room only when the child is intubated. The drama continues, as the entire department revolves around that one room...that one little boy.... The eyes of those outside the room...every nurse, every resident, every doctor...are looking in the same direction. The parents sign permissions as they are handed to them, and the work goes on. Everything seems to be happening in slow motion. Finally, the intensivist approaches. The child is critical, but stable...on life support....

I have just highlighted the first month of our new life in the pediatric cancer world. I am aware of five precious children who died recently—within five days—as a result of just one type of rare cancerous brain tumor, the same as my son’s. Skyler...Adam...Mara...Brynne...and Lauren. They belonged to all of us. What will it take for people outside of the childhood cancer community to notice what is happening to our children? What will it take for everyone to understand the urgency of the situation? What will it take for the federal, state and local governments to finally engage in the fight? Will it be the cancer diagnosis of a celebrity’s child or the child of a political leader? Will it be the death of a child belonging to someone in the media? Will it be your child?

Please, join the effort to raise childhood cancer awareness. Show your support by wearing a gold ribbon, and by making the issue an important topic of conversation. Distribute copies of this letter in your place of employment, in your place of worship, and in your community. Contact government officials, and express your concern.

A decade ago, we noticed a person wearing a pink ribbon on a t-shirt or lapel. It didn't take long for pink ribbons to raise breast cancer awareness in the public eye, and to mobilize our society to action. I hope that in 10 years gold ribbons will be as common as pink ribbons...and that the survival rates for pediatric cancers will be comparable to those for breast cancer. With your help, it will happen...one gold ribbon at a time.

With Hope for Our Children,
Sandy Smith
Breast Cancer Survivor & Mother of a Child who is Battling Brain Cancer

http://www.justonemoreday.org/ © JustOneMoreDay@cfl.rr.com

Thursday, February 5, 2009

Just One More Day for Love, Hope & a Cure

DIPG Digest

DIPG News brought to you by:
Just One More Day for Love, Hope & a Cure

February 5, 2009
Foundations News

http://www.riahsrainbow.org/ : Introducing Riah's Rainbow
Helping children enjoy art as much as Mariah did
The ultimate goal of Riah's Rainbow is to bring smiles to the faces of children who have to endure a day, a week or even months in the hospital. Our mission is to be able to give local hospitals new coloring books,crayons, markers, craft items, puzzles, etc. to pediatric patients.

http://www.smilesforsophieforever.org/grants-for-families.asp : Smiles for Sophie Forever Family assistance
Knowing of the heart-wrenching emotional strain, compounded by the financial burden of caring for and treating the child, the Grant Committee made the application process as simple as possible. There are only three documents required in order to be considered for a $500 renewable grant; applying families are eligible for three grants in a calendar year. The requirements are: the completed SFSF grant application, a letter from the attending physician, and a copy of the patient’s birth certificate.

http://www.kraftwerks-remodeling.com/ : There's a Monkey in my chair
There's a Monkey In My Chair is a program developed by the Love, Chloe Foundation. It is designed for pre-school and elementary aged children who are diagnosed with cancer.
Each child is provided with a "monkey kit" which includes a big stuffed monkey that takes their place in school when they are unable to be there. The kits include the monkey with a backpack, a book, and other items that can be utilized by the child and/or their classmates.
http://www.lovechloefoundation.org/ : Love, Chloe Foundation

Advocacy Call

http://www.justonemoreday.org/Advocacy/NCBTPreventionNetworkActof2009.html : National Childhood Brain Tumor Prevention Network Act of 2009 S. 305

http://www.justonemoreday.org/Advocacy/NCBTPreventionNetworkActof2009/LetterToCongressionalRepresentativeandSenator.html : Sample Letter to Congressional Representative and Senator

http://www.justonemoreday.org/Advocacy/NCBTPreventionNetworkActof2009/LetterToStateRepresentativeAndSenator.html : Sample Letter to State Representative and Senator


For past issues of DIPG Digest please visit http://www.justonemoreday.org/ParentPointers/DIPGDigest.html

Please submit information you feel will be helpful to DIPG families to JustOneMoreDay@cfl.rr.com subject: DIPG Digest

Copyright 2008 - 2009 Just One More Day for Love, Hope & a Cure, Inc. All rights reserved. The materials and links provided on this site have been prepared for information purposes only and should not be construed as advice or opinions on any specific facts or circumstances. Medical research concerning disease and treatments is an ongoing process. Readers should not act upon this information, but should obtain advice from physicians, medical institutions or other professionals, as appropriate.