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
Again drs are amazed at his resilience, the very modest amount of pain meds he takes, and how “well” he appears... ( most people with his amount of disease would have died a very long time ago) Casey is so sweet he says it’s because of my care, but he’s a perfect patient never complains. Today they actually told me the news as Casey was asleep and asked if they should tell him, I said no, it should be me. So I woke him and delivered news that no young man should hear, but it’s my job and no one else’s. I will continue my around the clock care for him, medication,
p/t, healthy foods, fresh air, lots of hugs, kisses, & kitties. And when he’s resting I continue researching & pray his numbers drop enough that we have one last Hallelujah trial in us, and in time.
We are just both emotionally exhausted and deeply numb. No humans should suffer like this, my heart breaks over & over.. I wonder somedays how it’s still even beating. I rarely cry but today I allowed it because I know in my heart that a world without my best friend is a world I’m not interested in existing in either. Thank you for reading and sharing in our journey of love, agony, frustration & bravery. Forever M & C
Casey has blood draws & ekgs every HOUR today!
All his urine for the day must be collected and on ice ( literally one entire bathroom at the clinic is reserved for him ALONE all day)!
His new trial is in pill form. ( for those curious M8891 is the trial, not much data/research if you look it up he’s like one of the first humans taking it ... lots of have though...it’s for solid tumors and the hope is it slows tumor growth... honestly we’re just happy to have ANY treatment options.
He will take this pill every single day indefinitely (if it has benefit). Side effects are nausea/vomiting which he already has & of course blood clots ( he gets ultrasounds weekly). Trial starts off with LOTS of Hopkins visits 3 days a week.... then visits will slowly taper down. Lots for me to remember. With dosing / bloodwork / appointments/ drug interactions/ pt/ movement/ blood clots etc... He also doesn’t get a bed/chair or a room per protocol for this trial ... so we literally are here 12 hrs like nomads, couch surfing cancer :/ then back to hotel & back tomorrow/Thursday .. what an adventure. My brain hurts, but we must keep on rocking.
I always, everyday around the clock am in touch with Hopkins, NIH, Penn etc. But trials are very VERY strict. Some trials make you wait 4 months for a “wash out” period before you can start another trial, some are 28 day wash out periods. Also doing one trial or having had one chemo or immunotherapy drug will cancel you out FOREVER of lots of trials. Having ever had a blood clot, or certain infections, or advanced disease will cancel you out. Also you have to score high enough on a basic wellness exam , can you walk ? Are you fully sedentary? Also blood results, Caseys liver numbers are always a concern and too high for most trials.
Just because a trial exists and looks compelling , does not mean by any stretch your gonna land a spot for a zillion different reasons. I always have him on multiple waiting list. He would not be eligible for Car-t (the most promising treatment) until Jan. ( 4 month wash out).
We met at Hopkins today to discuss a very early phase one trial , should he get accepted/enrolled. Another Liver biopsy ( yup even though he had one last week!!!) ct scan, ekgs, echos, tons of blood/urine, insurance clearance etc would have to fall into place.
Please know the only reason I can do the things I do ( 24/7 around the clock care/advocacy/research/admin meds/food prep etc) and not open my store is because of all of you that donated to us.
Please know everyday I say thank you to you all, because without the financial support there would be no way in hell I could not work and do all I need to do to fight & feed & care for Casey.
They said for his amount of disease to be taking such a low dose of pain medication is astounding....anyone else would have been at the Er months ago. Casey’s pain tolerance is ridiculous .. but obviously we are taking measures to bump that up... but still conservatively and not knocking him out. I will of course continue trial hunting but I have a very small window as amazingly his bloodwork & organs are still all functionality but he has very very aggressive disease and growth. His body is so strong the amount of disease he has would have killed 90% of people along time ago. He is hands down stronger then most humans. I’m sure many people will want to start visiting as you should... I ask that you check in with me too as I don’t want him overwhelmed. But I strongly encourage visitors.Love, M & C