Casey has F-ing Cancer
So on top of the pain and agony of the disease & super aggressive treatment that makes you terribly ill.... You can't work , you realize your insurance and short term disability are laughable, and half your meds and supplements are out of pocket. Cancer is truly the fastest way to emotional and physical bankruptcy. Unfortantaley our story is all to common.
We have be inundated with incredible friends & family that keep asking how they can help and wanting to "help" , as anyone who is sick or a caregiver can attest too, that question is unanswerable.... I need a miracle , I need a million dollars, I need more time.... But what you can do is provide any financial gift. As many know this type of cancer is super aggressive so we need to be just as aggressive on all fronts, we can't wait.
Funds will allow us to pay co-pays, try all forms of treatments that are out of pocket, get to and from out of state hospitals, pay the bills, & keep fighting hard and giving it everything we got. No one wants to ask for help but since many have, that's really what we need. Thank you for all the positive energy we do feel it and I will continue to update.
Xo- Casey, Michelle, Tutu & Betty
We are also at Hopkins today (next 3 days) for round 3 of his Listeria/immunotherapy trial. Very difficult like always. Next cycle he will have to be re liver biopsied, an extended stay, unfortunately he can not be put to sleep for this very painful procedure and it is a requirement of the trial. Caseys weight has be ticking down and I’m not happy about that. Steroids certainly helped keep weight on, but he is no longer on them and he can not take steroids on this trial... so we will continue to try other things to stimulate his appetite. This trial has 6 total rounds, 6 times infected with Listeria. 6 injections of experimental drugs. What seems like buckets of blood samples.6 very painful, nauseating, feverish, convulsing cycles...and you have no clue if it’s even doing anything. Hopeful xo M & C
Days have been filled with extreme pain, poking, prodding, nausea, ivs, fluids, pain meds/nausea meds, biopsies, experimental/investigative drugs, severe rigors(uncontrollable shakes), high fevers(purposely induced) , fatigue, boredom, sweats, sleep deprivation & hope!
This trial consists of giving Casey Listeria, yes Listeria, we’re poisoning him basically. Though the bodies reaction to Listeria is scary, severe and visually unsettling, if he didn’t react, that would be bad news for the trial, as we need to know his body is reacting and recognizing Listeria.
Which his did and is still!
( intense rigors set in, blue lips, blood pressure & heart rate shot through the roof, followed by high fevers & sweats ). Then immunotherapy drugs via infusion are received. The Listeria is suppose to lead the immuno fighter drugs to the tumors... at-least that is the theory.
So trial treatments will be 3 very intense days in a row every 2/3 weeks for months.... You have to stay as close to hospital as possible in case of any complications.
So this is our new journey.
For 16 months without relief or regression, Casey has endured the undeniably strongest/toughest chemo regimens that exist. He has suffered from the worst side effects that he still carries with him every second of everyday, not to mention the crippling effects of having a body full of tumors. And now we enter a new chapter, a brand new facility, new drs, completely new staff, and an experimental new treatment that only about 10 people are in, and he’s 20 yrs younger then any of them!
He might be in medical journals!
My commitment to him & the best care possible remains as strong as day one. If it’s pushing him in a wheelchair or collecting his poop samples, wiping his tears or not sleeping at night to monitor his fevers. It is my honor & privilege to have the responsibility and trust to care so deeply for another human being. I am humbled & in awe everyday by his strength & will...it’s the greatest motivator.
We will keep everyone posted throughout. Your continuing support, love, prayers & friendship keeps us fighting even when we feel so very separated and cut off from the healthy world. Thank you all for not distancing or dismissing us, but for sticking with us. For continuing to talk/play music with Casey & shop at Mesh & talk about topics besides cancer :) Maintaining these normal human connections is so very important to the patient & caregiver.
M & C.
Trial is all we have. IF, A BIG IF, we can find one that will accept him. ( stage iv pancreatic patients are about the most difficult to get accepted)
With that being said I will be exploring trials all over the entire country. Which means that if one agrees to interview him and or enter him into a trial I have to have the financial resources to very quickly book flights & accommodations for the entire treatment cycle. This is all the patients responsibility,
( insurance plays /pays no part).
I would love to be able to throw a fundraiser, ( I do believe in entertaining & giving back to folks that donate) , but unfortunately I do not have the luxury of time or resources, as I have been basically doing everything myself for the last 15 months. Help is needed immediately.
My full efforts have to be on securing a trial by any means possible ( the amount of paperwork is enormous and you have to do it all yourself, it’s a full time job), continuing my around the clock care of Casey, meal prep, medication prep, fighting with insurance/Cobra running a business & maintaining a home etc...
Am I emotionally drained, you bet, have I even considered once giving up NEVER, never even a thought. Even if we were turned down for every trial , I will take him for Mexico for alternative treatments (if I have the funds). I’m asking if you donated once , maybe a year ago, to consider another gift.. now would be the time. Any amount helps. I need to know no matter what happens we collectively did everything and anything to save my best friend. Thank you for your love and unwavering support. Michelle , Casey , Betty & Tutu.
Yet he continues to push!! So I will continue to be there to catch him, pick him up or push him along, quite literally. We have a lot of very troubling things coming our way, losing his(our) healthcare in a few months, then we may lose his current treating hospital/Dr, not being on chemo or any treatment, no plan, looking for a trial and anticipating mostly all turn downs, potentially closing my business to be his full time caregiver, loss of my income etc.... lots of big frightening losses... but not the biggest loss, so in that I am temporarily grateful. Caseys continues to defy the odds. With his positive attitude and will to live, create, & pursue all the things he loves regardless of his pain.
Always with our deepest love & gratitude.
M & C
Thank you all once again. My outcome may not be certain, but your love and generosity is, and nothing can change that!!