Having met with another expert on Tuesday and seeing the genomic reports in black and white, there are "no FDA approved drugs, no active clinical trials, and no targeted (immuno) therapies" for this extremely rare genetic expression.... and the physician asked if we've had 'the talk'. Given the rapid progression of the disease and lack of any data for success for any drug treating it, does Madi grasp at straws and potentially destroy the quality of the life she has left, or stop treatment and embrace each day living life to the fullest? Madison has decided to complete her journey on her terms and is unwilling to grasp at straws. It's her decision and her's alone, the choices while not-good seem simple: does she desperately hold on to any hope that there's a miracle cure and burn all of her energy chasing a 'cure' that may likely adversely impact the quality she has left, or concede that she's mortal as we all are, is being cheated out of the rest of her life, but live every day like it's her last. She chose option 2, and I'll say again after all that she's been through, she is by far the bravest and most inspiring person most of us have ever known. Acceptance is not approval, this is not okay.
So how does one cope, how do you navigate the emotions of what's next, the 'how long do I have', what will end this mortal life and transport each of us in to the next? Madison's faith is immense, she is SO loved, has an excellent therapist who has extensive skills, tools, and experiences... they've had a relationship since 2014, and she's been Madison's trusted therapist much of this year.
So no-news wasn't good news these past few days. Madi had to reach out to people who love her and let them know there are no viable treatment options remaining, her mom, dad, and Angela did too. We couldn't post anything here without having had 'the talk' with friends and family. We agreed not to discuss this with anyone who might be driving, so it took days to even have just a little time to call people. As we each spoke them, we let them know it's okay to say something to others, and it's okay not to also.... it's a heartbreaking conversation to have on both ends of the phone. That said, news spread and people are twitching in the shadows to know more but didn't see anything posted here, are desperately looking for updates, hence this long thread. If you weren't directly contacted, understand our family loves you too but we had to deputize a few people to spread the news so this post wouldn't come as a complete shock. Madi's spiritual faith remains extremely strong and she's been told by her medical team that her mortal life won't end in discomfort or pain. Hope for remission has faded, and she's faced with faith and reality.
So.... what's next? Getting her out of the hospital. We met with home care teams at the hospital on Wednesday with a list of prepared questions. One company sent a sales rep with brochures… did a nice pitch in fact. Another company sent two RNs and and insurance coordinator. One RN jumped into the medical details to review her case, the other answered Madison's questions. She is the boss, she's in charge, and selected the second care provider for numerous reasons and signed the agreement. An hour later the company dropped off a ton of supplies, they will unhook the other rental company for us, and coordinate having the scuba shop ("portable" oxygen) take back their tanks replacing them with more compact units. While the preference of the medical teams was to transfer her by ambulance, she's in charge, so we drove home from the hospital Wednesday afternoon arriving at 4:00 pm. A new antibiotic she didn’t have at home was delivered at 4:30, and an RN arrived at 6:00. She's set for pain meds but with the pain escalating, their Pain Management physician was scheduled to meet her on Thursday evening, which went well.
Madison has communicated the news to a number of her friends by phone, but there just isn't time to call everyone. Her trusted therapist visited her at the hospital on Tuesday and that was just awesome, truly a Godsend. She's an expert and helps guide people through the emotional challenges/stages of life, and the transition beyond mortal life. The message... acceptance is not agreement, and there are several stages as people approach the transition. There are still little triggers that make it very real… how long does it take to order a hospital bed at home for example... an eventuality. It was one of the compiled questions to ask the home care team, but when actually asking the home care nurse, Madi’s process-driven logic was briefly overpowered by emotions… how could it not be... the reality. All things considered, Madi is okay... perhaps a tad afraid of the 'when', the 'how', acceptance of the inevitable, with the understanding that acceptance is not approval. This is not okay, she is having adult life taken from her.
So how is Dad? All things considered, doing okay with similar fears. Acceptance... getting there. Concurrence, no... this is not okay... so very unfair. Having a good therapist and an extremely strong network of friends who love us is so heartfelt for us, for Madi especially and her immediate family. She worries about her moms and dad, shouldn't have to, but she knows people are hovering behind Windi to see how they can help in any way. We truly feel the love to our cores.
How’s Mad's mom Colleen? The same..., okay considering. She was spending long noisy stress-filled nights at the hospital, She asked a question I think she knew the answer to... Can she stay here once in a while... Madison's only one-story home. We have a room for her… she has a key to the house, can come and go as she pleases with her pillow and suitcase and stay through the duration, coming and going and without knocking.
How’s Angela, Madi's step mother? She’s okay considering, afraid, strong, and very supportive. This week she was joining dad at UCLA just to have lunch, hold hands, visit with Madison, etc. Given the 405 freeway is a log-jam day or night, it’s a 7-8 hour commitment to spend only a few hours at the hospital. Her radar is on at home... something needs doing, she does it.
Madison and her family feel the love and faith remains strong... hope with absolute faith that as Madi transitions from this life to the next, it'll be peaceful and pain-free surrounded by people she loves, who love her.
The Jones Family