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Class 5 Rapids

7/31/2017

To say the past weekend was an emotionally and energetically charged flurry of rapids would be the understatement of the year. Going in to Friday for a simple port placement, it transitioned into a very frightening chain of unrelated events. Madi was yet again incarcerated in a hospital, then transferred to another, more in the posts below.

Madi's home now and resting comfortably with the disclaimer... all things considered: she's a "go" to start the chemo regime tomorrow, and dang glad she's not in the hospital.

The dose will be over a 24 hour period, so they'll start midday tomorrow, and send her home after a few hours with the chemo bag and a pump. Madi will return on Wednesday and they'll unhook her, pat her on the head, and then blood tests next week. This regime is far less harsh than her prior regimes requiring hospitalization and again, she shouldn't lose her hair or feel the effects of prior chemo treatments.

Next steps: Most large cancer centers have Tumor Boards. Oncologists share their complex cases with their colleagues, and discuss each in a forum. Madi's case will be presented during the UCLA Tumor Board meeting this week.

She's Home!

7/30/2017

While Madi's treatment was scheduled to start Monday her oncologist suggested she postpone it at least one day so she can catch up on sleep at home... since sleep is so evasive when hospitalized.

The next step will be a mild chemo regime and following that in a couple of weeks, immunotherapy.

A Lot to Process

7/29/2017

Two very unusual symptoms on Friday morning were reported by Madi: Heart was racing and very low oxygen level, but she elected to go the surgical center (versus ER across the street) for the port placement. Upon arrival she spoke to a nurse immediately. Long story short and with physician stakeholders concurrence, the port was surgically placed ~1:30 PM without incident. Home by 3 and just settling in, she had red some foamy spit come up within minutes. We called the surgical center that placed the port. Unrelated to placement procedure, they said "get her to ER". They didn't speculate but her symptoms implied pulmonary embolism. Madi said "something is wrong"... Could see it in her eyes.

The ER physicians ruled out an embolism with a CT. We're used to seeing images and reports of the chaos going on in her chest... new to this ER doctor. You should have seen his face... his thought-bubble projected extreme concern and 'how much do they know'. We knew, but could see in his eyes and by his demeanor that he didn't know we knew. That said...

Given no blood has ever bubbled/been coughed up prior and his interpretation of the CT, the ER physician advised transporting Madison to the UCLA trauma center by ambulance: she arrived about midnight Friday night. Speculation with input from physicians:

An artery to her lung may have been compromised, which can be an extremely dangerous scenario with a high-risk surgery if/as warranted
One time anomaly/trauma, her 'rogue lung' oddly and suddenly bled, then stopped.
IF a significant amount of blood suddenly does flow, emergency surgery would follow. We were told late today that the 'suspect' artery is not a major one, so IF that's the root of the two hour span of the blood (about a teaspoon five time gradually less red over a two hour period), it would NOT be life threatening.

Next steps: assuming no more blood is coughed up, she may be discharged Sunday. Assumption: start IV immunotherapy or the recommended chemo treatment on Monday as planned. While it's all mapped out, it's subject to change.

Notes:

Madison's surgeon in 2014 at MGH probably has performed more chordoma surgeries than any other physician in the country, maybe the planet. He's IS the man. In May/June, he left MGH and is now the director of the Chordoma/Sarcoma center at UCLA.
Madi's new expert chordoma oncology team (the 'dream team') has affiliations with UCLA. We spoke to her new oncologist last night. Asked if he knows Fran Hornicek, he lit up and responded "yes, very well", adding "everyone in the chordoma world knows Fran".
In both scenarios... Karma, or a blessing... we personally don't believe in coincidence

In closing: our minds were swimming in the some terrifying what-if's scenarios for the last 36 hours: interpreting the conversations with numerous physicians we spoke with... the disease may have progressed suddenly, the last remaining engine was ablaze, (threads below) and the wing may be catching on fire. The copilot was instructed to call a "mayday", thinking we may end up in the Hudson.

Or... a one time oddity, cause TBD. That's the hope! The engine catching the wing on fire doesn't appear to lay our lay patient or her parents to be the case: physicians as well and now, A lot of what-if scenarios by physicians over the last 36 hours is a lot to process. Madi's spirits seem very good all things considered. Given the rarity of her disease and complexity of her case, she has the best-of-the-best focused on every aspect of leveling this plane (analogy below). Step one, put the engine fire out. Scheduled start, Monday the 31st... updates to follow.

Love,
The Joneses

(psssst... don't go dark: yesterday I heard her giving someone a bunch of lip on the phone as I reentered her hospital room :-)

Treatment Scheduled to Start Monday!

7/26/2017

Wooo hooooo!

Port Placement Scheduled Friday

7/25/2017

So today has been a good day for Madison. The port will be placed this Friday at 11AM, sleep was not as evasive last night as it's been the last few days, and pain seems more easily manageable.

Thoughts on bravery... or is it faith and determination? Madi was told she had cancer at age 18, endured grueling treatments through age 19, and then another highly intrusive procedure at age 20,,, unrelated to cancer but one of the toughed to date. In December last year at age 21 after being disease free for two years, she's told the cancer again... it's metastasized. 11 trips to San Francisco this year participating in a clinical that proved highly effective for the existing tumors, she's told last week at the age of 22 that the meds suddenly stopped preventing new tumors from forming. She must be very brave, aye?! Who truly knows how brave cancer patients actually are, or are they just taking the ride and rising to the occasion as the bar is raised... and perhaps perceived as brave?

To quote Madison quoting Joyce Meyer: "Courage is fear that has said it's prayers and decided to go forward anyway". And to quote Madison "so we walk forward in faith and courage... cancer will not steal my joy today."

Love,
The Joneses

Brief Update

7/24/2017

Monday update: the consult for the port-a-cath was late this afternoon. The surgeon plans on placing it this week.

Oncology: We have an expert second opinion that aligns with the Dream Team's treatment roadmap, so that's really good news!

Today Was Pretty Okay All Things Considered

7/20/2017

I was asked by a friend if Madison was hospitalized (she feared the worst case scenario)... so a few points of clarification and an update. In brief:
Madi's home and as mentioned below, is managing the pain fairly well! Several doctors reiterated that if you're in pain while awake, you haven't taken enough. If you're asleep a lot of the day, too much. Madi has slow burn 12 hour time release, and high octane instant release. The 12 hour slow burns can be taking every eight: the key seems to be maintaining that balance and use the fast relief when waking up and if/as behind the pain.

DNA sequencing will be performed looking for specific genetic traits and gene expressions... an negative expressions. Ideally tissue for this is from her original surgery in 2013, pre-radiation and pre-chemo samples versus the June 2014 surgery. The 2013 slides are being located and will be sent to her new oncology team for a deep dive.
She signed the paperwork today for the new trial opening in Santa Monica, LA, and other locations globally in August. These two drugs are approved in Europe and chordoma experts there have tested them with very promising results.
We're in the process of scheduling the chemo port: and she'll likely start chemo August 1. Mentioned below, the term "off label". It means if an FDA approved drug for leukemia also shows effectiveness for breast cancer, insurance companies routinely deny them for breast cancer because it's a "leukemia drug" branded by the FDA. If declined, the medical team will contact the manufacturers soliciting 'compassionate use'. This example would benefit the manufacturer by providing data for their drugs effectiveness with breast cancer... one lay dad's opinion.

Her oncology team is hands-down awesome. Each physician offered their direct cell numbers and non-vetted email addresses... impressive!

Today is the first day in a week Madi hasn't given blood. Today is the first day she wasn't in the hospital or traveling to/from or staying in San Francisco, or fighting traffic getting to/from Santa Monica and all things considered, a pretty okay day! Don't hesitate to text Madi that you love her, are thinking of her, etc. I suspect people may think she's curled up in a ball sucking her thumb. Not so! Pictured below she's napping on the couch: both dogs can feel a disturbance in the Force.

On Tuesday things almost seemed like they're falling apart. In just two short days things are falling in to place.

Love,
The Jones family

#dogtherapy #caninelove

Will ya shake my hand already!

The Other Engine Caught On Fire

7/19/2017

This will make more sense if you scroll down to the July 11th post and read that with the analogy, and work your way up to this thread. So lets start there, continue here.

We met with the doctor at UCSF yesterday. While the clinical trial meds stabilized and shrunk her existing tumors, unfortunately it didn't prevent new lesions from growing very recently... and quite rapidly. The pain in Madi's chest/ribs is because of them. Based upon a number of factors most importantly a 'washout period' of her system, the trial med has been discontinued. Madi is finding balance treating the pain appropriately and she's close to nailing it... next steps, maintaining it.

We returned to Simi last night and today we met with chordoma specialists in Santa Monica to discuss plan-b. Her new oncology team collaborated and came back with a recommendation: they want Madi to start an IV chemo regime asap. If all involved agree, she'll have a chemo port installed and begin that treatment asap... an infusion one day every three weeks. She won't lose her hair and we're told the side effects are nothing compared to the horrible chemo concoctions she's had in the past. In parallel they recommend starting an immunotherapy med... you can read more about that at this link. That'll be an injection every three weeks, one week before the chemo. There's a promising clinical trial opening up in August, and we understand that to be plan-c.

So that's it in a nutshell, updates to follow as she she earns her frequent flier miles in this 'journey'. Our apologies for posting such an unfavorable update, but it's impossible to call everyone who loves Madi to give them the news.

We proceed forward with unwavering faith and absolute determination to slay this two headed dragon.

Love,
The Joneses

Madison Called it a "Go"

7/17/2017

This morning Madison felt well enough to travel and she called the trip today 'go'. We blasted up to San Francisco and arrived in plenty of time for imaging here at UCSF... required by the clinical trial.

We meet with the physician/principle investigator in the morning and he'll review the results. Depending upon how late the appointments go tomorrow Tuesday, we may stay in SF... it's always a pain getting out of the city in the afternoon. If we end up staying another day, we'll update the the page tomorrow evening from here. If we make a run for it and head home, updates will likely be Wednesday.

Love,
The Joneses

Well That Sucked!

7/16/2017

Hospital schedules while necessary, truly suck... even with excellent care. There is no day, no night... people coming in all day, all night. Why would they draw blood everyday at 5-6 AM? So it gets processed by the lab, and physicians have current info when they make their morning rounds... one of many zero-dark-thirty examples.

Madi was hospitalized for three days, three nights. Her temperature came down and has been normal but she's had mind-melting headaches, which seems to fuel nausea. The doctor ordered an MRI of her melon today, all reported normal. Stress factors include but not limited to knowing bone cancer can metastasize south to soft tissue in the chest... but can it travel up? Here and now, not(!) thank you Lord.

She was discharged late Sunday which took traveling to UCSF today off the table. If Madison feels up to it, we'll head north ~7AM, completely her call. We considered flying (how can you not, especially with mums Southwest points : ) Given hospitalization tends to knock the wind out of everyone, going through the airport systems at Burbank and then again at SFO would be absolutely exhausting. Flying offers zero opportunities to nap and eliminates departure options. While driving isn't optimal, she can recline/nap the whole way. The added time to drive really is insignificant: the benefit... we can leave whenever we want to, and don't have to train, taxi, or Uber to/from SFO to Mission Bay.

So if Madison feels tomorrow morning like she does now, she's calls it a 'go'. Her decision: if she feels she's not up to it, we defer a day or two. Part of the trial criteria is CTs, blood-work, EKGs as required. Then... if all looks good, another four weeks of meds are offered. She has two additional days of meds here and now, so that's a good buffer.

Updates to follow, additional info in the threads below, and we'll update more here as this 'journey' evolves. To see the rest of the July posts, press <<<Previous on the lower left below.

Love,
The Jones Family

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