About to make a long post sharing some from inside the ropes. The following link is to an autopsy study of 3 children with DIPG. Among other significant conclusions, the study makes new suggestions on biopsying and discoveries of “previously unknown targetable pathways”. We are proud to announce that Emilie was one of the 3 children in this study. There are so many to thank that if we named any, I’m afraid we would leave someone out. That list extends from San Francisco to Houston to our own home towns. For us, making the decision to donate Emilie’s brain and tumor was both tough and easy. It started with Emilie though.
While we were at St. Jude, Emilie never balked at being a part of a study (though we always tried to avoid extra needle pokes). She always fought hard and regardless of how painful or how many sticks it took for a blood draw, never refused to stick her arm out for another.Deciding to donate wasn’t a decision we talked about early, but it was one that hung over us , looming in the back of our minds while we worked to fight and make Emilie’s time as happy as we could. But, when the time came to call an end to the fight and bring her home, we worked to set those plans in motion.
Truthfully, that was some of the hardest paperwork I have ever had to sign. I signed it and then focused on the time left with my girl. I still have the pen somewhere. Then the night came… Halloween night, 2017… Surrounding by friends and family, Emilie left us. While our hospice nurse began to take care of the arrangements to pick up her body, I took a quick walk around the block in the rain to let myself grieve for a moment. I felt like I didn’t have time for much more than that. There was still one job left to do and I wanted to be the one to take Emilie to her final appointment. This was her last chance to fight.I was full of anxiety as I had read about the need to hurry. I didn’t want to let that tumor have a chance to get away before researchers could unlock its secrets. We got Emilie loaded in the funeral van and I jumped in my car to follow. On the way, I think I called Dr. N. several times making sure we were doing the right thing, going to the right place. When we got to the morgue a dear friend was there waiting to help and support. We wheeled Emilie into the morgue and I lifted her up one last time and placed her as carefully as I could on that cold table. If I could have stayed, I would have. My final prayer was please let this all be worth it. Let them find something.I knew pieces of her tumor were supposed to go to Houston and Washington to study and attempt to grow more in an attempt to find a cure.
A year after I laid her on that table, I learned that it didn’t work. All of the tumor samples died (for lack of a better word). Part of me was heartbroken as if I failed again, but the other part of me was glad that Lord Voldetumor was gone for good. Then, out of the blue I received this paper from Dr. G. I wasn’t expecting it at all. On the one hand there was a little PTSD from the memories it brought back. But on the other, there are specific findings that come straight from Emilie’s tumor that give hope to ending this monster. To quote Princess Leia, “I only hope that when the data is analyzed a weakness can be found, it’s not over yet”.The researcher in me recognizes the small sample size in this study. But, I pray that the findings from these three brave kids makes a difference in this fight. Again, a big thank you to all who helped us make her donation possible, the researchers for their hard work, and those who funded their work. Without each of you there would never be light.
The link to the study, “Global activation of oncogenic pathways underlies therapy resistance in diffuse midline glioma,” can be found here: https://rdcu.be/b5JzX
First of all, I want to say that our hearts go out to all who are in pain from all of the hurtful events that have happened in America not only over the last few months, but especially the last few weeks. I apologize for not writing sooner, but I suppose I have just been processing like the rest of the world, and as an introvert, I process, and I process slowly and deeply. Many people have been wronged and hurt, and both my husband Trey and I hope that now that we are aware of this pain, we all will find ways to be open to learning, open to healing, and open to moving forward with love and acceptance at the forefront.
That
being said, I have a job to do, one that Trey and I believe is now our purpose
on this planet, and that is to support children with cancer and their families. Unfortunately, cancer is blind to cultures
and color, so all are potential targets, and there is no method to its
madness. Also, a child is a child is a
child no matter the color, creed, or nationality. Initially, I was inspired to write when I was
listening to a podcast earlier this week about a social worker named Elizabeth
Shuman who was diagnosed with Cystic Fibrosis when she was seven years
old. Cystic Fibrosis is a condition
where mucous builds up in the lungs because of bacteria that grows, and the
individual is never able to expel it.
There are other complications with digestion and energy levels, and for
people like Elizabeth, their daily lives are regimented life-saving routines of
medicine and doctors’ visits that sometimes culminate into hospital stays. She spends two hours each day wearing a vest
that shakes up the mucous, and she pays special attention to rest and
nutrition. Everything is calculated, and
she is constantly working to live life day to day. What should be ordinary, daily, mindless
routines become major stressors requiring energy that she may or may not
have. Much of what she was saying
resonated with me, as cancer took a similar toll on our daughter Emilie,
stealing what energy it could, making her miss out on swim sessions or school
with her friends. At one point her
medication was a job within itself. We
were managing it all—different medications, different doses, all at different
times, day and night. MRIs, blood draws,
doctors’ visits, and hospital stays were her regular routine. BUT the similarities really struck home when
Shuman said that the average age of survival for Cystic Fibrosis when she was
diagnosed in the eighties was twelve years old.
There is no cure for Cystic Fibrosis, just like there is no cure for
DIPG. The truly amazing thing, though,
is how far Cystic Fibrosis has come since the eighties. The average age of survival is now 38, and
here is what really got me excited. She
said that the money that helped advance research and that helped extend this
survival rate was not from federal dollars.
The research money that extended the lifespan of Cystic Fibrosis came
from foundations and from people who were able to give ten dollars here and
there. The idea that such huge strides
adding 26 years to these people’s lives came from many, many donors giving up a
coffee here and there and donating.
These little donations turned hopelessness into hope and then into
results to where a childhood disease is no longer just a childhood disease.
As of now, Diffuse Intrinsic Pontine Glioma (DIPG) is for all intense purposes, a childhood disease. The average lifespan is nine months after diagnosis, and the disease shuts down the child’s brain, interfering with all bodily functions, movement, and communication, and inevitably ends in death. It is a horrifying disease, one that I would like to see eradicated, but the only way we can do that is through research. The best way to ensure research is through donations, not only to advance DIPG research, but to advance the cure of all of the pediatric cancers that have taken innocent children’s lives. I feel so very strongly that my sweet, tough, and deeply insightful little girl is cheering us on, maybe even doing a little dance in celebration of every step we take to make a cure a reality. Elizabeth Shuman’s story has inspired me in that it has proven to me that a village can make a world of a difference with just a few dollars and some long term persistence. I also feel like in this time of turmoil when many of us feel powerless, what better way to be the good in the universe than contributing to ending pediatric cancer? Why not gather round in solidarity against pediatric cancer, making us one step closer to a cure?
Our fundraiser on Facebook for Emilie’s birthday (June 15th) is for the American Cancer Society’s “Fund the Mission” campaign. 100% of our donations will go straight to pediatric cancer research. So, when you donate to the Fight Like Emilie Foundation in this campaign, your dollars will go to fund the mission. ALSO, the Fight Like Emilie Foundation will be giving an additional $2,500 to their pediatric cancer research campaign. Please give Emilie an incredible 13th birthday by helping find a cure.
Author of the above post: Candice Gibson For those who are big on sources, my references to Elizabeth Shuman come from Jonathan Singer’s Social Work Podcast.
Emilie is
our amazing forever 10 year-old girl and best friend to her big brother Alex.
During the summer of 2016 she began to have headaches while swimming. After an
MRI on September 9th, we received the words no parent should ever
hear, “Your child has cancer”. We quickly learned that she had a rare brain
tumor called a Diffused Intrinsic Pontine Glioma (DIPG) which had no cure and
that 50% do not make it 9 months after diagnosis. Emilie survived 14 months.
During her battle she had surgeries in Shreveport, Memphis, and San Francisco.
She endured many MRIs, countless needle pokes, 40 doses of radiation, and three
phase 1 trial treatments. With courage beyond her years, she battled cancer
with sass, humor, song, and an occasional dance under her many crazy hats.
Finally, her fight came to an end at home on Halloween night, 2017 surrounded
by family and friends. On that night,
she passed the baton to her family and friends so that we could continue her
fight until the day cures are found for all children. 8 months later, around
the time of her birthday, the Fight Like Emilie Foundation was born.
OUR MISSION
The Fight
Like Emilie Foundation exists to support research, institutions/organizations,
families, and initiatives, as well as to raise awareness in the fight to defeat
childhood cancer.
2019 FINANCIAL AND ACTIVITY REPORT
Thanks to
each of you we feel that we made an impact in the fight against childhood
cancer in 2019. During the 2019 fiscal
year the Fight Like Emilie Foundation raised $13,748.37 from individual giving
through Facebook, Amazon Smile, Give for Good, and monies raised through
special events. Not bad for our first year. Of the $13,748 raised, we spent
$13,034.18. Of that, we are proud to report that 82% ($10,684) went straight to
performing our mission and 18% ($2,349) went to administrative costs. Now that
this first year is passed, we can and will do better.
FLE Spending
$13,034 total
expenses
Percent of expenses
Direct Family Support
$8,050
61.8%
Childhood Cancer Awareness
$2,634
20.2%
Administration Costs
$2,349
18.0%
WHAT DID WE DO WITH FUNDS RAISED?
ADMINISTRATION COSTS – Since this was our first year, we started off with some
one-time administration costs that we could not avoid that included paying for
our amazing website developed by Richard Creative. Those costs will
be less for 2020 and beyond. As part of our responsibilities in running the
organization, a good bit of our administrative expenses went to insurance.
Absolutely no monies were used for salaries. This is a good spot to recognize
our wonderful board and those who have volunteered their time and effort with
us!
SUPPORTING FAMILIES – $8,050 went directly to supporting families. That means that
nearly 62% of your support went directly into the hands of families who needed
it most. We did this in two ways. First, we gave direct grants to 5 families
that applied during the 2019 year. Community Foundation’s annual Give
for Good had a significant impact for two of our families as we raised
nearly $2,000 total and then added from our own funds to give each family
$2,000. Secondly, between Christmas of 2018 and 2019 we sent out Amazon cards
to children who were fighting this horrible disease. Of course, those cards
were sent out from Emilie.
AWARENESS
– 2019 was a great
year for us in terms of working on awareness of childhood cancer.
First, it
was the first year of our partnership with the intercollegiate debate
competition organization, the International Public Debate Association
(IPDA). In 2018, with the help and support of friends and the organization’s
officers, childhood cancer became its official charity. The mission was for its
participating programs to raise funds for their childhood cancer charity of
choice. It is estimated that members of the organization raised nearly $20,000
in their first year giving to several different charities. The Fight Like
Emilie Foundation awarded participating programs with plaques of recognition
and individual participants with commemorative coins.
Secondly, we made one of Emilie’s dreams come true. During her battle
with cancer, she announced that one of her “bucket-list” items was to be in a
parade. Thanks to incredible supporters, she and her brother rode in the 2017 Highland
Mardi Gras parade. She had a blast. Prior to the start, she asked her
father why there wasn’t a float for childhood cancer. I responded, “I guess
we’ll just have to work on that”. That was Emilie’s last parade and she never
got to fulfill that dream. As a family, we weren’t able to make that happen in
the year following her passing. Well, in 2019 we did make that happen. Emilie’s
float launched in the same Highland parade that made her wish come true. It was
small, just a truck with decorations, but what made it really special is that
our first rider was a precocious little girl who just had one of her eyes taken
in order to “cure” her cancer. Everything was unicorn themed and everyone
absolutely fell in love and awe of our first queen of our Emilie float. Lots of
people donated beads and throws to give our queen an amazing experience.
Selfishly, it also made Emilie’s dream come true for us.
Thirdly, we made connections and
partnered with some wonderful groups during 2019 to help raise awareness for
the fight against childhood cancer. No monies from Fight Like Emilie were used
in these efforts, but we are discovering how valuable partnerships are as we
fight this foe.
In partnership with the American
Cancer Society Cancer Action Network, as father of Emilie and not as a
leader of FLE, our Executive Director, Trey Gibson was sent to the Alliance
for Childhood Cancer Action Days in Washington DC where we advocated
for the childhood cancer fight. Thanks to Representative Mike Johnson, Emilie’s
unicorn Elete and I were able to speak in front of many House representatives
about her experience. It was a humbling, yet wonderful experience, and much was
learned.
Likewise, we
volunteered with the ACS CAN in Louisiana’s Cancer Day at the
Capital in Baton Rouge. During that time, our story and presence helped get
children included in palliative care legislation.
A PEAK AT 2020 AND BEYOND
2020 has already turned out to be a
unique year. COVID 19 has impacted and changed many of our lives. However, it
has not changed our mission. To date, we have already supported two families.
We have also significantly raised our game during this year’s Mardi Gras
Highland parade. We partnered with Foster-Somerland who built our
float and Audio Home Solutions who provided the trailer and sound
equipment to create Emilie’s Castle. This time we had two cancer warriors and
their brave siblings tossing beads and throws. You all overwhelmed us with
donated throws this year and thanks to you our warriors had a great time. We
continue our partnership with the International Public Debate Association and
encourage donations to any organization that fights childhood cancer. In 2019,
the Louisiana legislature created a Palliative Care Advisory Council. That
council met for the first time in January of 2020. FLE’s Executive Director,
Trey Gibson was appointed to serve. This is in no way tied to Fight Like
Emilie, but certainly represents another avenue to help make a difference for
all children, not just those fighting cancer. Finally, in addition to
supporting families and raising awareness, we also hope, with your help, to
advance our mission to support research again.
THANK YOU!!! THANK YOU!!! THANK YOU!!!
All of this
would not be possible without your support. There is still so much to do.
Unfortunately, every day children will be diagnosed and parents will hear those
hurtful words, “Your child has cancer”. It is by far the scariest set of words.
Every day we miss our little girl and that heartbreak we feel fuels us to do
more. Please keep all cancer warriors in your hearts and please help us help
them by donating and sharing that childhood cancer needs more awareness!
Emilie and Trey Gibson prior to a blood draw in San Francisco, 2017
(Bossier City, LA) Co-founder and Director of the Fight Like Emilie Foundation, Gordon “Trey” Gibson has been appointed by Governor John Bel Edwards to serve on the newly created Louisiana Palliative Advisory Council. Gibson is currently awaiting confirmation from the Louisiana State Senate.
Gibson, who is an instructor of Leadership Studies at LSU Shreveport is the father of Emilie Gibson who was diagnosed with a rare brain tumor at age 9. Over the course of her 14-month fight, she received treatment in Shreveport, Memphis, San Francisco, and Houston, all while trying to be a normal little girl.
Gibson states, “During Emilie’s fight, we experienced
palliative care, both for her, and for us as a family, from incredible people
and at every place we went all the way up to the end. We know how important
this is. I am deeply honored by this servant leadership opportunity to
represent those with chronic illnesses, especially children and their families,
on this council and will do my best to help.”
The Louisiana Palliative Advisory Council was established
through legislation in the 2019 session. The American Cancer Society states, “Palliative care can provide better
quality of life for cancer patients, and those with other chronic diseases, and
their families by focusing on relieving the pain, stress and other symptoms
associated with cancer and its treatment.”
Prior to the first meeting of the council, Gibson plans to use social media to reach out to families to gather stories about palliative care to share with members. If any families from Louisiana have a palliative care story they would like to share, please send a private message on Facebook to Trey Gibson.
Today is the 3rd day of Childhood Cancer Awareness Month and in 6 days, it will be the 3rd anniversary of being told that our daughter had cancer. That was just one of many of the worst days of our lives to follow and I miss my daughter more today than I did yesterday. And since this is Childhood Cancer Awareness month, I wanted to share some insight as to what it is like on the inside to be a parent of a child who has/had cancer.
Attached to this post is one of my favorite pictures with Emilie. I still remember that moment when she put her head on my shoulder. I still feel that moment in my heart. I miss that moment in my heart. I think that anyone looking at this picture right now would see it for all of the love it expresses between my daughter and I. And there are a lot of beautiful pictures of amazing warriors and their families out there that are also full of love. However, for us, as families, that is just part of the picture.
When I look at this picture, I also see that big bottle of water. I would make a bet that no one really looked at that. After all, its just a bottle of water. Well, that half of the picture makes me hate this picture, something that none of you would ever know.
As Emilie’s parents, and for all of the other parents of kids fighting this horrible disease, we had to watch, sometimes make our children go through terrible things. Specifically, for Emilie, blood draws were a big fear. It wasn’t that she was afraid of needles, just afraid of how many times nurses would have to stick her to find the right vein. Sometimes it took up to 3 times. Once, they even had to bring in an ultrasound machine and dig around with the needle while watching to see if they could get it in. Meanwhile, while Emilie screamed, we could only hold her hand and try to say words of comfort that really meant nothing in the end. Well, Emilie finally figured out that if she drank enough water, maybe, just maybe, they could tap her vein in one stick. It was her strategy and for a girl who won more games than she ever lost, strategy was her thing. It worked more often than it failed. So, this picture was taken far from home and down the street from UCSF Benioff Children’s Hospital the morning of a blood draw. The bottle of water in the picture was Emilie’s and she was preparing herself for another needle stick.
I don’t pretend to speak for other parents, but I think they would agree. We are torn between two worlds and it is impossible for some to see. For me, this picture represents intense love and the horrible fight our daughter waged. Nearly every picture of Emilie during her fight has dual messages of love and terror. Even her crazy hats remind us of the joy of her goofiness and the reason for them.
To wrap this up, to start this month of awareness, I wanted to share something from inside the ropes. There are parents who have lost that are trying to put on the best smile possible, while feeling the gut wrenching pain of loss. There are parents fighting who are cheerleading for their child while feeling the deepest exhaustion and anxiety of uncertainty. Though these may be things we all could have guessed at, I hope that this picture and the history behind it, can shed a little more light.
I see that water bottle and all of the memories it represents come flooding back. On a good note, Emilie would call herself a “Blood Draw Professional!” So, her strategy worked more often than it didn’t. I was and always will be so proud of her courage. Still, no child should have to be a Blood Draw Professional.
I also see Emilie, resting her beautifully goofy head on my shoulder. I would do anything for that moment again.
Bless you all and bless all of the children and their families who have fought, are fighting, and will fight childhood cancer.
The most unexpected phrase in the world has to be, “We found a mass in your child’s brain.”These words began our 9-year-old daughter Emilie’s trek into the madness of childhood cancer and sent our whole family hurtling out the other side into The Fight Like Emilie Foundation, our answer to destroying cancer forever.
Terror, sheer terror followed that unexpected phrase, and then the thoughts, “It’s not cancerous, it can’t be cancerous. If it is, then it will only be a stage one or two. It has to be.” That is what I told myself on September 9, 2016, after receiving the news in a Chic-Fil-A parking lot. While driving down the road, tears threatened to smear my line of sight while my child sat unknowingly in the back seat — unaware that her world, that our world, was about to be twisted into something I can only explain as the other side of the rabbit’s hole. Somehow, probably since all was unknown at this point, I held myself together. Masked by my sunglasses, I silently cried at every stoplight, and I have no idea if she noticed the occasional gasp for air, but somehow, I made it home.
Avoiding eye contact and silently holding myself together was common in the months that followed because my daughter had the worst of brain tumors, something called DIPG (Diffuse Intrinsic Pontine Glioma). I had never heard of the disease, but the average survival rate is one year after diagnosis. Unlike my husband, who soaked up every bit of information he could, I could not look too far outside of our family bubble.
The cancer community has a mantra: Minute by minute. I had to take life minute by minute — make sure she went to her appointments, took her medication, and received the rest that she needed. Always, like most cancer parents, I hoped that the next treatment would be the miraculous answer we needed. We heard so many stories about how that one lucky kid magically responded to treatment against all odds. I hoped that Emilie would be the one.
The crazy thing about our story is that there weren’t many signs pointing toward cancer. All I knew is that my daughter started having headaches, which we called the doctor about, but they were attributed to possible dehydration. It wasn’t until she complained about having headaches with flip turns at swim practice that we decided this problem needed to be addressed because Emilie had found her passion, and we weren’t going to let that love for swimming go to the wayside over headaches. When we saw the doctor and she pointed out Emilie’s lopsided smile, I was dumbfounded. I suppose I was so close to her all of the time that I didn’t even notice what was right there in front of me, nor did I even begin to comprehend the fight ahead. Cancer in general is difficult to understand. Not only does it have so many different mutations that can affect so many parts of the body, but cancers such as DIPG adjust to treatment and find other ways to mutate, adapt, and grow. Then every child responds differently to the disease, as well as to the various treatments.
Emilie had radiation at St. Jude in Memphis, immunotherapy at Benioff Children’s in San Francisco, then more radiation in Shreveport, followed by immunotherapy at Texas Children’s in Houston before her fight came to an end. Throughout most of the journey, most people could not tell she was even sick because outside of a lazy eye and a drooping mouth, she functioned like every other normal kid. She went to school when she could and kept up with swim practice. Because of her seemingly normal demeanor, some of her schoolmates had a hard time understanding that she was even sick, but they didn’t see the in between times when her life was anything but normal. We were lucky in that the immunotherapy available had very little side effects, but even so, Emilie’s daily routine was often uprooted with a nomadic quality of traveling back and forth from hospital to hospital hundreds of miles away.
One incident far from home regarding an expired vaccine set us on edge wondering if Emilie was going to receive the treatment when she needed it or if we were going to have to wait until a new batch came in. Our room had a large window that looked out over San Francisco. I can remember my chin on her shoulder and my arms wrapped around her while she was kneeling backwards in her chair, looking out over the city. In a most serious and grounded manner, she asked me, “Don’t you just wish this was all a dream?” Oh how I wished with all of my heart that all of the blood draws, long, drawn-out shots, midnight ER runs, surgeries, steroid side effects — rage, constant hunger, sleepless nights, lost energy — and that horrific tumor that never stopped completely growing — that all of it had been a nightmare that our whole family could have woken up from at that very moment.
Unfortunately, it was a harsh reality that smacked us in the face every single day, and all we could do was put one foot in front of the other. Emilie definitely did that, and when she could spontaneously sing and dance while facing the hard truth in front of her, she did. In her last few weeks, she would often say, “Mom, you know what is stuck in my head?” and I would answer, “Let me guess, a song of some sort?” and she would break out singing the chorus to “Fight Song,” or something from Moana. She had an endless playlist in her head that changed with her mood, but reflected an amazingly strong outlook regardless of the fact that her body began to shut down. It wasn’t until the summer of 2017 that her balance began to waiver, and by the end of the summer, she was using a walker. DIPG attacks the computer center of the brain, shutting down all gross and fine motor skills. The child eventually becomes bedridden, where the parent has to bathe, feed, and change the child because she can no longer do for herself. We were lucky that the last stage only lasted a couple of weeks, and thankfully, we believe Emilie did not suffer much, sleeping a majority of the time until she passed away October 31, 2017.
Once cancer has entered the picture, it is impossible to ever see the world the same again. We walk on the other side of the looking glass, and cancer is the monster we see everywhere; therefore, we cannot ignore it. The only way to make sense of what happened to our witty, spunky, competitive, Hulk-smashing and unicorn-loving girl is to turn her tragedy into a catalyst for good. The Fight Like Emilie Foundation is our answer to continue the fight because Emilie was always putting others before herself. She would have jumped at the chance to help other families struggling with cancer, which is what we aim to do. We want to give money to research to end this disease, make sure that people understand how complex DIPG and all cancers are, and we want to help families make it through survival mode when they find themselves hurtled into the unknown.
Our first move as a foundation has been to form an initiative with the collegiate International Public Debate Association. Teams from various schools across the nation are choosing their own childhood cancer charities and using debate to raise funds. We have also donated money collected through Facebook and restaurant fundraisers to the Michael Mosier Foundation, a charity that gives 100 percent of its proceeds to research hospitals devoted to cures for DIPG.
One of Emilie’s bucket list wishes was to be on a Mardi Gras float and while walking past all of the floats the day of the parade, in true Emilie style thinking about all of the other kids fighting this disease, she asked why there wasn’t a float for Childhood Cancer. To promote awareness and to make her dream a reality, we are working to make that happen. We plan to grow with our fundraising efforts, and there have been ideas regarding future golf tournaments, game nights, along with more restaurant fundraisers.
If you would like to become a part of the fight, The Fight Like Emilie Foundation can be found on Facebook (@fightlikeemilie), and our email is fightlikeemilie@gmail.com. This is just the beginning. Having been through the hell of losing our joy and heart, our purpose is clear, and we won’t stop until cancer is defeated for good.
