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.

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,
Erika
m/o Ella Hope, forever 7
http://www.caringbridge.org/visit/ellahope

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.
http://www.angelfoodministries.com/

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.