Chris Elliott Fund

Bringing HOPE to the lives of brain tumor patients & their families

December 17, 2014
by Susan Kellner
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Death With Dignity?

Dellann just completed a compelling interview with Laura Martin from the award winning British documentary company Love Productions. They are putting together a documentary on “Death With Dignity”. As we all know, this is a very controversial law, accessible in only 3 states so far. Dellann’s viewpoint on this matter?

“I personally believe all humans should have access to “Death with Dignity” when a terminal illness is diagnosed. What I want to caution all of us about, and why I agreed to do this interview in the first place, is that I do not want to see those newly diagnosed brain illness/cancer patients just jumping into Death with Dignity before they’ve been made aware of their options. It is SO imperative that the newly diagnosed be A) treated by a brain tumor specialist at an actual brain tumor center and B) create a “Plan B” for when the brain cancer/tumor returns if current Standard Treatment/Standard Protocol does not create survivors. Currently, those that are surviving this disease are those that are seeking out IMMEDIATE ACCESS to advanced treatment options and Clinical Trials. When and if the time comes…where there are truly no more options for advanced treatments and one’s quality of life is no longer “good”, then all should have access to “Death with Dignity.”

Blessings,
DellannElliott Mydland

A Message from Love Productions: We would be very grateful to hear from anyone who wants to find out more or who is willing to share their experience on this subject.   All conversations would be 100% confidential and not for broadcast.  Please contact me on laura.martin-robinson@loveproductions.co.uk, be sure to say you heard about this project through the Chris Elliott Fund.

 

December 16, 2014
by Dellann Elliott Mydland
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The Logistics of Caregiving from a Women’s Perspective

As many of you know, the Month of November was National Caregiver  month.  The Chris Elliott Fund, since then, has been posting several great books and/or tips for Caregivers to read.  I believe we are on Post #9 and have planned a total of 15 posts on this subject. It is in this spirit that I write this BLOG post.

For the last several weeks, I’ve been reflecting on my past experience as a caregiver for my late husband, Chris Elliott.  Boy, I can truly say, this was definitely the hardest thing I’ve ever had to do so far during my 53 years.   To read a bit more on how I managed this while still raising our two young children, please read “Chris’ Story”.

Young families where the Dad has brain cancer has been what I’ve been thinking a lot about lately. The Chris Elliott Fund and I have  been involved recently in many brain cancer cases where there are young children involved and typically, it is the man in the family that has brain cancer and his wife also works outside of the home.  I was thinking about this aspect of caregiving this morning while listening to several phone calls  that had come in over the weekend from women whose husbands have brain cancer.  Typically, they have had a seizure and or surgery and at the present time, they are unable  to drive. The calls lately have been centered around getting 2nd/3rd opinions and IMMEDIATE ACCESS to advanced treatment, driving the patient to/from work and medical or legal related appointments, etc.  This morning I started wondering how does a women, who is a mother, wife and who also works outside the home do it all when her husband has been diagnosed with brain cancer?  How do these women manage it all?  How do they carry  on as a “Mother”, as a “Wife” and as an “Employee”? The emotions related to this topic are real and they are scary and the logistics and management skills required to manage this scenario are quite extraordinary.  These women have my utmost and full respect.  This particular experience in a way, makes us “sisters”.

I know and understand what drives these women – they are determined to find a cure for their husband’s brain cancer and God only knows where they get the strength and energy…actually, we do know; it is their love for their husbands and their children that drives them and gives them the necessary energy, strength and courage to continue on and to “muster up the ability to keep being strong for their family and to keep seeking out any and all possible treatments to save their loved one’s life”.  It  is also their fear that keeps them going.  It  is  a very scary  time and truthfully, the stress that comes out of this situation does make one age quickly and other health problems can arise out of the stress these women are put under. These women, my friends, deserve our utmost respect and our help in navigating through the fight of their lives.  I am working on a new FACT SHEET that will address this very real  need and hope to have it published by the end of March 2015.  I will share it here as well as on our website and  would love to have a gathering in our Community Center at our Brain Cancer Patient Support Services & Call Center in Redmond, WA.  I will keep you posted.

I can tell you from personal experience as well as from all of the experience I  have working with these women and their personal stories, that the cheerful attitude and the smile they have on their face is there because they have to have it.  If they did not, they would break down and cry for all the things their family may lose, such as the father of their children, the love of her life, the life and future that may not come to be.  No matter how great the support system is that these women have, they are scared and are already mourning the life they used to have because the new life is all about doctor appointments,  logistics related to who is going to drive the kids to school, to practice, who is  going to pick up the prescription, who, who, who, who. The answer usually is  the mother…the wife… the woman who loves the brain cancer patient.

I don’t know how I did it 14 years ago and I most definitely don’t know how I would do it now.  I want all of us to remember to help these women.  These women are proud and they are strong and they feel they have to be strong and to take care of their family and their loved one.  I want us to remember to “understand this” while at the same time, figuring out ways to help these women.  It is a fine line as they don’t want to feel like they need  help.  I want all of us to figure out ways we can help  these women, while at the same time, help their families as well as the brain tumor patient. I want these women to feel the love and support of not only others but also the love and support of the Chris Elliott Fund.

I am seeking ways we can support these women together.  Please contact me with your ideas on how WE can help the Caregiver with their loved one, their family and their own health during this very demanding period of time.

Sending my Healthy & Happy Holiday Wishes to Each of You.

Blessings,

 

Dellann Elliott Mydland, Founder & President

The Chris Elliott Fund

www.ChrisElliottFund.org and www.EndBrainCancer.com

800-574-5703
425-785-8489

 

December 9, 2014
by Dellann Elliott Mydland
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It’s OK to Feel Sadness & Anger for your loved one that has passed away without receiving advanced brain cancer/tumor treatment, but…….

Please turn your anger and sadness into something good as a way to honor your loved one.  I might be able to help you with that. At the Chris Elliott Fund, we talk “LIVE” all the time as well as via email/social media & online support groups with many caregivers, loved ones and the families of brain cancer patients that have passed away.  Something I have noticed is that often times, there is anger and sadness expressed when a new treatment or a possible new treatment/clinical trial becomes available or anger arises when the loved one is not able to participate in a clinical trial for  various  reasons.  Most  of the anger and sadness stems from the following:

  • Receiving “Compassionate Use” of the treatment under study is so hard to get, and
  • The parameters to get into a Clinical Trial are very tight (this is what Al Musella, The Musella Foundation” is working on.) The idea would be to lesson these parameters and to make the actual time spent in the clinical trial shorter.

Brain Tumor patients and their  loved ones often feel anger and sadness that their loved one did not get the opportunity to have a new and/or promising treatment.  I understand this and even today, 12.5 years after my  late husband, Chris Elliott, has passed away from this disease, I often think that although I am beyond delighted as a brain cancer patient advocate that new and promising therapies are being developed and even though I often have something to do with “IMMEDIATE ACCESS” of  these treatments for brain cancer patinets, I still think about how great it would have been if Chris had had access to these treatments too.

Having said this, I do want to share that although there is a piece of me that is saddened that Chris did not live long enough to see these new treatment options, I am also beyond THRILLED when I learn of new possible treatment options and am thrilled because then, I have something new to talk to brain cancer patients about and to try to get them into this treatment.  This is what I do to honor my late husband’s life.

While writing this BLOG post, I  realized that it  may be helpful to share that the role of CEF’s Health Information Concierge (HIC)/Patient Advocate (PA) is to help those seeking advanced treatment and to help them get into the treatment fast.  The role and goal of the HIC and the mission of the CEF is to shorten the GAP it takes from a patient’s brain cancer diagnosis and the time it takes for the patient to learn about and get into advanced treatment/clinical trial.  CEF feels that if we can do this, we can aid the patient who is seeking advanced treatment to fight their disease because let’s face it, present standard protocol to treat GBM is not creating a healthy amount of survivors.  All of us want to change this – we want these patients to have IMMEDIATE ACCESS to advanced treatment that may save their life.

The CEF feels that if we can have patients and their families contact us immediately at diagnosis or better even yet, have the general public know that they need to contact us at the time of diagnosis and BEFORE SURGERY, we feel that we can cause a “shift” in and close the “GAP” between a brain cancer diagnosis and the time  it takes to learn about advanced treatment and the time it takes  to get into a clinical trial.  If we can  do this, we believe we can give the patient and their loved ones more “HOPE” in fighting this disease and from a research standpoint, we feel that we can “feed” the research with more tumor tissue as well as more patients. When we are successful in this endeavor, there is a change then that it will become easier to get into clinical trials and the length of the trials themselves will be shortened.

I  invite you to learn more and join us in this effort at www.ChrisElliottFund.org.  I also invite you to learn more about our mission and day-to-day work by checking out the job description for our Health Information Concierges.  In early 2015, CEF is expanding our free brain cancer patient support services and will be hiring another Health Information Concierge, (link). Please consider spreading the word and joining forces to help those families and loved ones of brain cancer patients know and understand that we “hear” you and understand your anger and sadness that your loved one did not have IMMEDIATE ACCESS to advanced treatments.  We know the system is broken.  I’d like  your help fixing it.  Info@ChrisElliottFund.org.  We CAN DO THIS Together!

December 1, 2014
by Dellann Elliott Mydland
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Brain Cancer & Cell Phones?

I don’t know if cell phones cause brain cancer or not but what I do know is this.

When my late husband, Christopher Stewart Elliott, was diagnosed with brain cancer, the first thing that went through my mind, after the shock of this diagnosis, was WOW!  My husband has been in the telcom business for many many years, used to use one of the first large cell phones that got “hot” when used and he used to use it a lot as he was in sales and used to be on his phone all the time between and during appointments……

While Chris was going through his chemo treatment, at that time, it was BCNU, the young man who was typically seated beside him each week was being treated for  testicular cancer. He shared with Chris that he too was in sales and often dropped his cell phone into his lap between using it while driving, which he spent most of his day doing.  I can remember Chris and I having a discussion on the possibility of the use this person’s cell phone and “carrying it in his lap” could potentially be a cause of his testicular cancer.

Also, many many years ago while in DC., I attended a conference on this very subject.  Although, I love my cell phone, I came away from  this conference feeling like a “Best Practices” philosophy is warrented when using cell phones, such as always either use it on speaker, use earbuds, alternate sides of the face/ears that one uses their cell phone on, do not sleep with the cell phone anywhere near your head/body, etc.  So, I’ve always had a feeling of wonderment and suspect when it comes to the use of Cell Phones and if they may have something to do with brain cancer.  I am often also asked this question and can only share what I am sharing here until now……

Over the weekend, I read several reports on this subject related to a new study on this topic.  The link for one of these reports is here: The Risk of Brain Tumors from Cell and Cordless Phones.  Again, I am not a doctor, scientist, researcher, etc. but I am someone who will follow this research going forward and I will most certainly not be shy about speaking to the general public and especially, parents of pediatric brain tumor patients, about this information and the “sensibility” to monitor their child’s use of cell phones given what we now think we know about their possibility of causing brain cancer.

Blessings,

Dellann Elliott Mydland, Founder & President

The Chris Elliott Fund

November 25, 2014
by Dellann Elliott Mydland
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HOPE for Brain Cancer Patients

Do you ever have those really rare “Pinch Me Moments”?  Every once in a while, they DO HAPPEN.  Ever since last Friday AND Saturday the  15th, I have been kind of “skipping” over the last week because  I am just so  “Happy & Hopeful” for brain cancer patients.  Let me tell you why…….

Most of you know that I’ve been in the brain tumor/brain cancer space for 14.5 years and most of you know it is because my  late husband, Chris Elliott, was diagnosed  with GBM at 39.  During  the last 14.5 years, I have never felt so much HOPE in treating brain cancer like I do now.

I’ve been involved  in a project for the last three years, that although was made public last Friday, much is still  not public knowledge,  so the details  that I can share are limited.  I am increasingly becoming convinced that to KICK BRAIN CANCER BUTT, it will be a combination of surgery, radiation, device and chemo/vaccine/immune therapy. A new device, The Voyager, is going into clinical trials for solid tumors and the first category of solid tumors is GBM.  This device has been in Research & Development for the last 16-18 years in San Diego  and here in Seattle.  Dr. Santosh Kesari first introduced me to  the Chairman/President/CEO and the COO of Nativis, the company that developed the technology for this  device, John & Lisa Butters,  3 years  ago.  It has been REALLY exciting to see this technology and  this device  come  to “light” with the prototype that will be used  to  treat GBM in clinical trials. I am very  pleased and  proud to call Lisa and  John my friends but more importantly, I am so thankful to them for  their vision, persistence in bringing their dream into the lives of brain cancer patients and  am equally thankful to their stakeholders for continuing  to  fund this technology and this device.  Please go to these two links (the 2nd link is related  to  the  canine study  and results that lead to clinical trial of the Nativis Voyager System in humans) to  learn more about one of the things/new treatment I am so excited about for the brain cancer community:

http://clinicaltrials.gov/ct2/show/NCT02296580?term=NCT02296580&rank=1

http://youtu.be/zX6eEWuSEQI

AND, On Saturday, 11/15,while in Miami at the annual Society of Neuro-oncology meeting (SNO), where about 2000 national and worldwide researchers, scientists,  neuro-oncologists, neuro-surgeons, investors, advocacy groups, etc. gather once a year to listen to presentations related to  the outcomes of  and/or  clinical trials in the pipeline.   Truly, when one is fighting this disease, you often feel very alone and sometimes  you wonder “WHY ISN’T THERE BEING SOMETHING DONE ABOUT THIS DISEASE?”.  If you  were to  ever have the opportunity to attend this meeting, you would be encouraged and see firsthand that truly,  there are many around the world truly dedicated to fighting  brain cancer AND there is very encouraging news coming out of the research community.

I don’t know if I  can adequately convey how I felt when Dr. Stupp was presenting a “New  Standard of Care” for GBM patients and was speaking about a “Paradigm Shift” in treating his disease based on the outcomes of the EF-14 clinical trial, a multi-center  trial  of NovoTTF together with  Temodar compared to Temodar along in patients with newly treated diagnosed GBM.  Go to this link to read more about the awesome  outcomes of this year’s  SNO conference provided by our friend and partner, The Musella Foundation and Al  Musella: Highlights From the Society Of Neuro-Oncology 2014 Conference  The last section talks about this “Paradigm Shift”.  After you read it, you will understand more about the “Pinch Me Moment” I am trying to express. I kind of felt that I was living in an “Unbelievable  Moment” and I had a lump in my throat as I  realized what  this meant to brain cancer  patients, their  families and  IMMEDIATE ACCESS to this treatment.  As some of you know,  I’ve worked  closely for years with the company, Novocure, who produces and markets  the device known as the Novo-TTF, newly named “Optune” and have been involved in bringing this device to market for several  years even before I testified to the FDA Medical  Devices Committee on why this device and this treatment option must  be approved  for  brain cancer  patients.  I kind of had a moment where I felt like God and Chris were looking  down on this announcement, smiling and shaking hands.  It’s as if they  were almost  saying “Well  Done”.

I am so proud to be fighting every day for IMMEDIATE ACCESS for  the brain cancer patient and their  family.  Thank you for allowing me to  fight for you!  We just got access to more treatment options and therefore,  more HOPE to a CURE!

During this Thanksgiving Time,  I am truly feeling blessed.  Happy Thanksgiving to you and your family from  the Chris Elliott Fund and I.

 

Blessings,

Dellann Elliott Mydland, Founder & President