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About the Unfavorable CT Imaging in the Monday Post...

9/14/2017

 
Lets start the good news: nausea appears a thing of the past and pain while getting worse, is being well managed. The plan is to keep both that way. Meeting with yet another chordoma expert on Tuesday... the bad news: he confirmed that the latest CT showed aggressive disease progression. Madi had cancer treatments Aug 1, Aug 17, and Sept 5th and while hope and faith remained strong, reality has been looming. The CT confirmed advanced progression of her disease... and beyond her chest. Experts had agreed with the treatment plan early on, including a tumor board. Her actual tumor tissue was sequenced to show the genomic characteristics, and then a curve ball. Lay dads understanding: there's a specific gene that immunotherapy has shown to be very effective in many cancers, but is seems that Madi's disease doesn't have that particular genetic expression, which seems extremely rare for her already rare cancer.  

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. 

Love,
The Jones Family

Discharged... she is home

9/13/2017

 
Pain and nausea remains manageable... plan to keep it that way, and another update tomorrow.  

Hospitalized - No Nausea in the last 24 hours

9/11/2017

 
Nausea is still being managed well and we're hoping it'll subside the farther away she gets from the last chemo train that hit her. Radiation was waived today for a couple of reasons, one of which is with everything that's going on in her chest... and pneumonia is just one factor. Unfortunately the latest CT results were not favorable, there's a lot going on in her chest. Carefully weighing the benefits versus the risks with her team, Madi decided not to get the radiation today/tomorrow. While they wouldn't likely promote nausea, the benefit would be minimal compared to any more of vomiting episodes. 

Sunday at UCLA - Compressed (Was Family/Fans/Friend updates)

9/10/2017

 

Saturday Update - Hospitalized - Compressed

9/9/2017

 
Madi was diagnosed with pneumonia and admitted, no real surprise there but damn... can't she catch a freaking break? 

Thursday Update - Radiation Again Today

9/7/2017

 
Madison and her mom returned home about 1:30 AM this morning, an extremely long day for both of them. From Simi Valley to Santa Monica, to Westwood, to LA, then back to Simi. Madi will have radiation at UCLA-Westwood again today ideally with infinitely less windshield time... a happy thing. This past Tuesday and Wednesday were both long days that included a lot of windshield time during rush hour traffic. While Madi's travel time has been baked in between appointments, it's still amazing how many people sit in traffic for hours every day going to/from work. 

So faith and hope remains strong, but reality is what's prompted experts to recommend radiation... nuke the tumors in a quest to reduce their size and bring the pain levels down. While the pain meds remain effective, ideally less pain will mean less meds. August sucked, no sugar coating that. She spent 11 days in the hospital and the tumors have increased in size quite a bit. Whether it's pseudo-progression (agitated tumors just swelling up due to treatments) or actual disease progression is unknown.... we circle back to faith and hope. 

A Dynamic Medical Case - Wednesday Update

9/6/2017

 
Good day Madison fans and followers, 

Madison's treatment schedule listed Sept 5th for immunotherapy treatment #2. Upon arrival to the clinic yesterday after meeting with the physician, he insisted that another round of chemo first, then immuno treatment #2 in two weeks. We discussed tapping the brake pedal a day given recently discovered variables in her case, but he pushed his point, I made mine, and Madison listened intently to both of us. She is extremely bright and she is the boss-lady... it's her cancer and treatment decisions are hers. So, we switched gears. Yesterday she left the clinic with a bag of chemo-to-go and a pump. Looking at bloodwork, they decided Madison needs another blood transfusion... top off her oil, check her transmission fluid and coolant levels. From Santa Monica, over to Cedars in LA so they could draw blood. 

So busy next steps: Madison will return to the clinic this afternoon with her mom: nurses will remove the chemo-to-go bag/pump, hydrate her with a bag of fluids, and give her an injection to help maintain her WBC counts to avoid infection. From the clinic in Santa Monica, Madison and mom will head to UCLA-Westwood for radiation at 5:30, treatment 1 of 5 which will only take about 30 minutes...  getting there is a whole other story... but travel time is buffered in. As they say on TV, but wait, there's more! After radiation, she returns to Cedars in LA. The blood draw Tuesday night will have been analyzed to c
reate a blood transfusion blend with anything she may have a deficiency in, and then the actual transfusion tonight at 8:30. She'll get two bags, each taking two hours. As mentioned, Cedars has very nice infusion areas. They're not elbow-to-elbow recliners as most are, but separate compartments like the nicest first-class cabins we've all seen on TV. Ideally a nice long nap for Madi... maybe mom can sneak one in too, then jump in the car and head home about 1AM. 

Yes, it'll be a long day. Having asked Madi if she'd like to push the transfusion out a day to limit today to only two appointments, she said 'no... I want to get it over with". (She was like that with her homework growing up.... never procrastinated, also dug in deep, and early)

Love, 
The Joneses  

Happy Labor Day!

9/4/2017

 
On Friday night Madison went to her moms house, first time she could feel comfortable given it's a two-story and her bedroom is upstairs. This isn't to imply that she's doing better, she's certainly not worse, and has acclimated to her current normal needing oxygen, high heart-rate, and managing the pain meds well... all things considered. As she puts it her right lung is wrecked.

Madi's radio oncologist called tonight to review the plan for tomorrow. Given she has visible tumors showing (lumps) under the skin, he's going to nuke those is a quest to reduce the size which in theory will reduce the pain. While that's currently managed with meds, her perfect world would be taking less meds and sleeping through the whole night... what a concept!! 

All things considered, it was a good weekend (so assume no news is good news : ) and a brief update here tomorrow Tuesday. 

Love,
​The Joneses 
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