Chris Elliott Fund

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

January 28, 2015
by Dellann Elliott Mydland
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You know that “I can’t breathe” feeling?

Right now, I am working with 6 women who are either having a routine MRI this week or have a husband who is having one; MRI’s ordered with the sole purpose of checking on the stability of their brain cancer.  I can just about  hear the “sigh of relief” that is experienced when one’s brain tumor specialist or neuro-oncologist shows them the MRI  film and  states, “all looks good.  No  new tumor  growth”.  Having personally been in that NO’s room several times before, I still get that nervous feeling when a patient or a caregiver with the Chris Elliott Fund tells me “it’s that time again for my routine MRI.  Please pray that it  is  clear……”.

I wanted to acknowledge this feeling of fear experienced by both the patient and the caregiver or family member during this time because I know it is very real.  The days leading up to  a routine MRI to determine  if  there is  new growth or  not has often times been  described as a “roller coaster”.  It is  indeed.  The reference to  “roller coaster” refers to the feelings that  one experiences the week or so before the MRI. One moment, you are confident that all is going  to be ok, that there  will be no new growth and the  next minute you are terrified, wondering if this MRI  could likely reveal tumor growth.  I want to tell  all of you reading this post that this is SO REAL and SO NORMAL.  It  is very stressful.  I remember because I was scared too.  Just prior to my  late husband’s routine MRI’s,  we often didn’t get along the best we could have because both of us were simply scared to death.  I do wish I had some great advice  here……

I would like to open this up for discussion and would welcome your input because I’d love to be able to create an Educational Piece, perhaps  a FACT SHEET that speaks  directly  to this subject.  I encourage those of you  reading this to please step in and  share your thoughts on this subject especially if you have “tips” on how  to cope during this time as either a  patient or  as a caregiver.  I do  know how important helpful advice on  this subject would be  to others. Please feel free  to reply here or email me directly atDellann@ChrisElliottFund.org to share your thoughts.

Thinking of all of you this week who are having your routine MRI’s and praying for clear results as I know this leads to a breath of “relief” and a trip back  to enjoying your routine and your loved ones.

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Blessings,

Dellann

January 15, 2015
by Dellann Elliott Mydland
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I Might Have The MOST Rewarding Job Ever!

Last Friday night, this thought was once again confirmed. The Chris Elliott Fund held its “2ndAnnual Patient, Caregiver & Partner Community Open House”.  Our Brain Tumor Patient Support Services & Call Center is open to the public all year long but we desire to make sure that the patients, their families, our community and our funding partners know that at least once a year, we want them to walk through the doors so that we can say “Thank You”.

As I write this, I have a lump in my throat.  As the Dad of a patient we have helped got  ready to leave, he came forward with  teary eyes, very humbled and said “I just have to give you a hug and say thank you for what you and the Chris Elliott Fund does for brain cancer patients.  I had no idea how much you serve this population.  I want to get involved”.

When my late husband, Chris Elliott, and I started the Chris Elliott Fund on May 18, 2000, our goal was to not only fund research but also to assist brain tumor patients and their caregivers/families with the sharing of our own story, our own experience, what we learned through our experience and what we would do differently as well as assisting them into getting into advanced treatment, treatment that is more than standard  of care.  I’m not going to lie, it has been a long, hard, 12 ½ years while trying to serve others the best that we can given our limited resources & funding.  There have been days were I have considered throwing in the towel because simply getting and bringing in enough funding to meet the enormous need for our free services is one of the most difficult things I have had to do.  BUT, WOW!  When a patient, caregiver or family member comes to me with tears in their eyes and says “Thank You”, I makes it ALL WORTH IT!

I will not pretend to know what it is like to have a child, young or old, with brain cancer, but I do know what it is like to have a spouse with a terminal illness and pass away from brain cancer.  I am grateful for people like the  father who expressed his “Thank You” to the Chris Elliott Fund and I last Friday evening.  These are beautiful gifts.  Thank you for allowing me to work in this field each and every day.

This is also a great time to give a “Shout Out” to all of you who are interested in joining our 2015 Committees.  Please contact me at Dellann@ChrisElliottFund.org if you are interested in joining us in the following ways:

  • Join our Board of Directors
  • Join our Board Vitality/Nominations Committee
  • Join our 5thAnnual “Brains Matter” Awareness, Auction & Celebration Luncheon Committee.  Event is 5/28 at the Bellevue Club
  • Join our 14thAnnual “Chris Elliott Fund Education & Celebrity Golf Tournament” Committee to be held in June or July, Seattle/Eastside area
  • Join our Development/Funding Committee
  • Join our General Event Committee (Seattle area Events and National Events)

Thank you to each of you for your support and for “Being Part of the CURE!”

January 6, 2015
by Dellann Elliott Mydland
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New Clinical Trial!

Happy New Year to each of you!  2015 is starting off with a BANG with a focus on brain cancer patients and new treatment options for rGBM.  I am delighted to finally be able to BLOG about a new clinical trial that is recruiting at the Seton Brain & Spine Institute in Austin, TX and will soon be recruiting as well in Seattle, WA.  I am not at liberty to say more about the Seattle site at this time, but can talk further about this trial in Central Texas.  To learn more about the Seton Brain & Spine Institute, click here:http://www.setonbrainandspine.com/treatment/tumors

Take a peek at this video to learn more about how this DEVICE works on Solid Tumors.  This device is now known as the “Nativis Voyager System”.  This video reflects how well it works and worked on canines.  The data from its use on canines was so incredibly positive, that it was used to get the human trials stared for recurrent GBM.  I have eagerly been sitting on the sidelines watching this technology, the canine clinical trial results and potential treatment for rGBM for the last 3 years. I am now DELIGHTED to see this potential new treatment for rGBM become available for brain cancer patients.  Check it out. Video is located at: https://www.youtube.com/watch?v=zX6eEWuSEQI

The Principal Investigator at Seton is Dr. Brain D. Vaillant.  The contact for this trial if you are interested in getting information and possibly participating is Heidi Herdon, RN, 513-324-7000, ext. 77713, hheerdone@seton.org. This trial is noted as NCT02296580.  I am proud to say that Dr. Santosh Kesari, one of CEF’s Medial Advisory Board Members, is the Study Director for this study.  To learn more, click here: >https://clinicaltrials.gov/ct2/show/NCT02296580

If you are in the Central TX area and interested in enrolling in this trial, please contact Heidi Herdon and it you are in the Pacific Northwest and interested in learning more about this trial, including enrollment, please feel free to contact me directly at Dellann@ChrisElliottFund or at 425-785-8489 or at www.ChrisElliottFund.org.

2015 is already starting off with more and more treatment options for GBM patients.  Let’s keep the momentum going!!!

Blessings,

Dellann Elliott Mydland, Founder & President

The Chris Elliott Fund

 

December 30, 2014
by Dellann Elliott Mydland
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Dear CEF and EndBrainCancer Friend, Partner & Supporter

As 2014 draws to a close, I am thankful for the work that I get to do each day and have been doing for the last 14.5 years, inspired by the late Christopher Stewart Elliott.

I am thankful that the Chris Elliott Fund and I make an IMPACT and a DIFFERENCE in your lives, and shorten the GAP between a brain tumor diagnosis and the time it takes to receive IMMEDIATE ACCESS to ADVANCED TREATMENT OPTIONS.

Thank YOU for your support of the Chris Elliott Fund. In case you intended to, but haven’t yet, made a Year End gift, you can do so online by clicking HERE.

I would also like to personally invite all in the Seattle Metro Area to CEF’s:

2nd Annual Patient, Caregiver, Partner & Friends Community Open House Friday, January 09, 2015, 4-8pm @Chris Elliott Fund Patient Support Services & Call Center, 14959 NE 95th St., Redmond WA 98052

You will have the opportunity to meet our staff and learn more about the work we do every single day on behalf of brain tumor patients across the country, including IMMEDIATE ACCESS to advanced treatment and clinical trials PLUS learn about our exciting 2015 expansion plans. Refreshments and light appetizers will be provided.

To help us with planning, we are asking that you pre-register HERE.

Finally, I hope that each and every one of you had a Blessed Holiday filled with joy, love, and family time and wish you a happy and prosperous New Year!

Blessings,

Dellann Elliott Mydland

President & CEO

The Chris Elliott Fund

800-574-5703

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.