Helping the Hendrix's - Tori's Fund
While our family rejoiced over the birth of a miraculously healthy, beautiful baby boy, we were also grappling with the grim understanding that life for the Hendrix family was all about to change.
The doctors found cancer. Tori was diagnosed with neuroendocrine carcinoma that had metastasized throughout the entirety of her body. Due to its rare and very aggressive nature, treatment also needed to be aggressive and rather experimental.
Tori and family have done the best possible to maintain a sense of normalcy amid the continual rounds of chemotherapy, nuclear medicine, and transfusions – particularly in the interest of their two incredible children. But the fatigue from the treatments has been extreme and limiting in all aspects of everyday life and work. It has been so physically debilitating and demanding that at its worst, it forced Tori to be admitted to the hospital for weeks on end while her husband, family, friends – each of us – took turns sleeping next to her by night and holding her hand by day.
Tori just celebrated her 37th birthday. She is a loving mother to Lucca Valentine (4 years) and Golden Wilde (10 months), and has a devoted partner in her husband Austin. The Hendrix family is tough, and they are resilient. My sister is mentally strong in her resolve and, also, filled to the brim with pride. It was with great hesitation that she agreed to let me share her story so candidly and ask for help after 10 months of fighting this awful disease. Over the course of this past year we have experienced small triumphs and major setbacks. But the worst, by far, is the ongoing feeling of helplessness that permeates our family unit.
The outpouring of love, prayers and support that we’ve received – from friends, family, even strangers – has been truly overwhelming, and so very much appreciated. So many of you have asked what more can be done during this difficult time: I hope that by starting this fundraiser we can come together to help ease the tremendous stress caused by mounting costs. I humbly ask you to consider donating to the Hendrix Family fund.
From the bottom of my heart, thank you for your time and your consideration.
Please feel free to contact me directly with a private message if you’re interested in lending support in other capacities including:
· Providing discounted or free lodging in San Diego for our parents during their extended stays.
· Donating air miles (any airline) to enable me to keep up the frequent commute from Florida.
· If you're interested in sending a meal to the Hendrix family (vegetarian-friendly).
December 14, 1978 - April 26, 2016
There is a part of me that wishes I could openly convey the grim transformation that’s rapidly taken place before our eyes, but I do not wish to so drastically alter the vision of who she is – and to so many, always will be: The vibrant, gorgeous, intelligent, healthy, ultra-feminine, inspiring woman we all adore.
She sleeps more and more. When she wakes, we see less and less of her. In the fleeting moments we are graced with our Tori, I see her strength and fighting will. I see her great love and thoughtfulness. She made me laugh three days ago – I suspect that will be the last time.
Her breaths are so few and far between that I find myself staring – boring holes into her chest – just waiting for her to breathe, my own heart pausing in unison with hers.
They say it’s the natural progression. At 37, there’s nothing natural about it.
We love, we care for, we wait with heavy hearts. We continue to ask for her miracle – for her to have total peace and comfort – no more pain, no more fight.
The kiddos couldn’t be happier to have their mama home. Tori loves to see Golden attempting his first steps: She marvels at how big he is while he squeezes her delicate hands. And every morning Lucca greets Tori by sidling up next to her bedside and whispering; “I love you, Mama! You’re my favorite mama.” The furry members of her family stay by her side, devoted to watching over her and bringing warmth and a fuzzy, loving touch at any chance.
Your beautiful shared memories and photos of Tori (and even kind messages from strangers) have been a blessing for us over these past few weeks. They have allowed us to not only remember our sister / daughter / wife / mother through our own experiences but to experience the love and light she shared with and shone on so many of you. Thank you, also, for your words of support to each of us during this time - even when we do not respond, please know they are powering us through these heart-wrenching moments, day by day.
I can’t say it enough, but THANK YOU for your continued thoughts, prayers, well-wishes, love, light, energy, positivity and care. I know you are all holding your breath and waiting to hear positive news. Please understand we put our best effort into each day as we wait for a change, and when one comes, we will share with all of you, our wonderful cheerleaders and supporters.
I still believe.
My big sister, so tiny – her body, well under 100 pounds, just accentuates her extreme fragility. It’s nearly impossible to believe that less than two weeks ago she surprised me with an outing to find my perfect wedding dress. Of course she spotted it within seconds and had planned the most beautiful wedding to accompany it within minutes… And in such stark contrast to the beauty she so easily creates, these recent days have been ugly and devastating – enduring immeasurable pain, countless procedures, treatments and indignities. She’s been fighting valiantly.
My heart is aching. I can’t do anything to help or change the course. I can only hope that she is comfortable – feeling no pain.
So now I ask each of you to pray for her much-deserved miracle, and take a moment to send your love, positive energy and thoughts. Let her be encompassed by all the love, warmth and positivity we can muster.
I don't know you, and I cannot fathom what your going through, I wish nothing but the best as you go through this difficult time. I do however work with Dr. Lui here in Denver who is a NET specialist. People come from everywhere to see him, his patients always have stories about how they didn't know what to do or weren't given treatment options and he was able to help them.
Hi, you wrote neuroendocrine carcinoma, did you mean carcinoid? I have carcinoid and I'm a RN. I have a TON of octreotide in my refrigerator. If she needs to be on it and and can show a valid RX I can save you a lot of money as the med is very costly even if covered the co pay can add up. I cannot give it without seeing a valid Rx though. Dr. Woltering is excellent but he's much further than Dr. Anthony Heaney at UCLA and Dr. Edward Wolin at Cedars in LA, they are in San Diego and so am I. Please contact me, I have been surviving this for 15 years. I have heard of some aggressive cases, but even those are slow, what you described is very inconsistent with carcinoid so I'm not sure it was written correctly but I'm also concerned there is a misdiagnosis, which is very important to accurate appropriate treatment. We have NO experts in the field of carcinoid in San Diego! No matter what any oncologist tells you, none here are RECOGNIZED EXPERTS! What you describe sounds more like carcinoma which is extremely aggressive, but is not neuroendocrine. Please have Tori be sure her diagnosis is correct!! Second and third opinions on her pathology are exceptionally important, from scratch...perform all tests again, do not simply allow someone to read a report and agree with it. To do this you'd have to get tumor segments to a new pathologist and do not tell them what the diagnosis was, don't give them the path report, don't say anything except "please give a diagnosis for this sample". I have been an expert witness off and on during a 26 year career. You can never be too careful, medical folks can make mistakes like everyone else but if we do it can be very costly in human life!!
I too have NET. I was diagnosed 6 years ago. I am going to Germany to have a treatment called PRRT. You can find information about it on PRRTinfo.org. I have an amazing oncologist at Dana Farber Cancer Institute in Boston. He is a top NET specialist. He is hoping PRRT will be FDA approved in the next couple of years. I don't have that long to wait. I wish I could take you with me. Please look into it. I've known for years that I would need to have this treatment. you can live a long and good life with NET. Please contact me on FB if you would like more information. Our stories sound similar. Like I said, I've done well over the past 6 years, it is just time to step it up! Stay positive, you have a beautiful family! Check out the carcinoid and NET support groups on FB if you aren't already following. Many positive people with great stories and knowledge!
I am so overwhelmed with emotion for you Tori and your family. This is so close to home as my daughter named Lucca Sofia just turned 4 as well and we have a little boy almost 2. I cannot even begin to imagine how hard this has been for you and your family. I just turned 37 as well and my heart goes out to your family and so many healing prayers sending your way. Is there anything we can give along with a money donation? What are Lucca's and Golden's favorite things. I would like to get them a present for being strong for their mama.
There are different kinds of this kind of cancer, you need to know what kind. There's mid gut, hind gut, for gut, pancreatic, lung. Please contact him. There's a webb site called Carcinoid Cafe, its open to all those afflicted with this. I hope you take my advice and follow threw on it. I am sorry this has happened to you and your family. Be praying for you. There's also support groups also, in your area, those can be found on the Carcinoid cancer webb site also.
You need to contact a Dr. Woltering who does nothing but this cancer. He is in New Orleans, LA. He's an expert. I would stop all treatment till talking to him. There are shots of sandostatin and landreotite. Go to I believe the webb site Carcinoid Cancer, com or Org. Has tons of information for you. I have mid gut Carcinoid cancer, was diagnosed in 2008, and doing well. Check out webb site. Dr. Woltering phone number is on the site.
I too lost my 35 year old sister T just a few weeks ago from high grade Neuroendocrine tumours. I'm sorry for your loss and imagine you feel the same heavy grief and wonder how life goes on now. Just know you are not alone. My sister and I followed Tori's journey and I know she took a strange comfort in knowing she was not in the battle alone, against this rare and aggressive disease. I hope our two T's find each other and watch over their babies together from up above X
I am overwhelmed with sadness for the loss of such an incredible woman. I have followed Tori on Instagram and even though we have never met, I have deeply admired her for all that she shares with us. From her creativity to her passion for life and family, there was so much beauty in all the things she did, created, and saw. As a working mother, she was a role-model for being successful in work while being an amazing mom to her children. I (among so many others) have been deeply touched and influenced by Tori just from following her. I am amazed on how much her passing has effected me, but it goes to show how powerful of an individual she was and will always be. I hope your family can find some peace in this time of grief. I am so sorry for your loss.
I am happy to read she's home! I don't know Tori and your family personally, but only though the Internet, but I can feel your pain and I am sending my prayers to you each and every single day! I have a two year old son and I cannot even imagine how hard it must be for all of you! Sending lots pf love ♥
I'm a stranger that just follows your sister's IG acct and as I was getting ready to go to bed something told me to check this page and you just posted and I will pray for her as I have been. As a mom of four kiddos my heart is also with them and I will pray for her miracle, I promise.
Praying. All day, all night. Every word to my children, every moment of silence, a prayer and pouring forth of love for Tori, for Austin, for Golden and Lucca and for her dear family. Praying that she will feel surrounded in love and peace. That all fear will subside. It is unbearable that she must suffer in this way. My heart is breaking into a thousand pieces alongside yours.
I don't you but I am praying for healing for you and peace for you and your family. If it is any help, I own an online consignment (high end and luxury) boutique. For anyone will to donate items in your name, I will give 100% of the sales (I won't take a commission) and I will match the donation up to $200 ( maybe even more I work the numbers to see if I can do more). I will also go through my personal items that I can sell to help out as well. No I don't know you, but you are my sister in Christ and my San Diego community. Keep on keeping on.