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Day-2 of This Trip

1/31/2017

We learned today a 'dose' is four pills, not one and she takes four pills twice a day. On the pill bottle label it says "handle with gloves". I wish we'd read that first.

Kidding aside, it is chemotherapy and all things considered, she's rocking it. They draw blood every 1, 2, then 3 hours following the first dose. The next will be late this afternoon and she'll be done for this trip.

Next trip will be Valentines day appointments back in San Francisco, in just two short weeks.

Madison has Formally Been Accepted in to the Trial !!

1/30/2017

This new leg of the cancer 'journey' has been somewhat of a thrill ride. Today Madison was formally accepted in to the trial and will start the dosing tomorrow Tuesday. Hallelujah : - )

Wait, so what's dosing?! It's swallowing a pill. They don't say she'll take a pill, but she will be given a 'dose'.... sounds so medical, aye?! All kidding aside, it is considered a chemo pill and side effects should be minimal, summarized at the bottom of this post.

Next steps: Still in San Francisco for a couple of more days, EKG and bloodwork will be taken tomorrow morning as a baseline measurement. She'll be given a 'dose' and monitored throughout the day. At the six hour mark, they'll take more blood and do another EKG. Assuming everything is tolerated well, a second dose (pill) will be administered (swallowed).

If all goes as planned she'll leave SF with 13 more days of meds (a cycle is 14 days). Day 15, back up to San Francisco to take new baseline measurements, rinse and repeat every two weeks. On week-eight there will be new MRIs and CTs to determine how effective this new med obliterating the rogue lung metastasis, more here.

So how long she have to take these meds? Hopefully, indefinitely... let's expand on that. In a perfect world modern medicine would have a pill that can cure cancer. Here and now there are promising targeted agents that can help reduce tumor size and activity, but nothing (yet) that can forever change her body to erase this type of cancer once the bugger metastasizes.

Taking this med indefinitely would imply it's forever effective, we can hope! However if the effectiveness of a med diminishes at some point in the future, cancer patients play 'kick-the-can' as mentioned in a thread here.

Self Draining Apparatus Installed

1/29/2017

The procedure outlined below went as expected for the doctors, but more involved than any of us expected. While it was an outpatient type of 'procedure'... installing the catheter was in the OR. She was not expecting that level of post-op pain, and she has a high threshold... look at what she;s already been through, aye?

That said, the pain has diminished quite a bit. She'll now has the ability to drain the fluid on her own, vs. going to the hospital every 7-10 days.

Now up in San Francisco again, appointments start at noon on Monday the 30th. Fingers, toes, and all possible body parts crossed, she'll be formally be accepted in to the trial, and can start the new meds this week.... ideally Monday or Tuesday!

Procedure Thursday, Road Trip to SF on Sunday

1/24/2017

Things seem to be coming together nicely. On Thursday Madison will have a catheter installed so rather than the fluid building up and being drained manually at the hospital, a small hose will be installed and Madison will be able to drain it herself.

There is additional interest in harvesting additional cancer cells from this next batch of Madison's fluid build up. Assumption... more will be injected in to mice. Cool stuff!

On Sunday another road trip from Simi Valley to San Francisco. The quest this trip is final acceptance in to the clinical trial, and to administer the first dose of the new med.

On another note, Madison is Jonesing to be a counselor again this year leading blind kids and young adults at XMO Winter camp. More from 2016 Winter Camp at this link.

Madi Mouse

1/20/2017

It was another whirlwind tour to and in San Francisco. Traffic on Wednesday getting in to the city was rough, it was raining sideways, but we finally got in at 8pm.

Starting out at the UCSF Mission Bay facility on Thursday, we shuttled over to Mt Zion for EKG and blood-work, then over to the Parnassus facility for MRI and CT scans. Finishing the day at 4pm and back in the room, do we nap or check local traffic across the bridge and in Oakland, then consider throwing suitcases in the car. Getting out of the city can be rough at the end of the day but the traffic didn't look too bad so we decided to drive home late last night. There's no place like home.

Rewinding back: We had mailed UCSF November MRI, Dec CT and PET scans, pathology reports, doctors 'notes', and more. Last week we met with the the trial coordinator and principle investigator/MD, completed all of the forms/consents, etc. After the physician spoke with the sponsor and called Madison to let her know they accepted Madison. Hooray! But....

This week: We knew blood-work, MRI, CT, etc. was needed to be at UCSF and sent to the sponsor of the drug trial. Our impression was she's in (was told she's accepted), and our assumption was that fresh baseline images and workups were needed just prior to starting the drug. We were told yesterday that acceptance is conditional, that the sponsor needed to analyze everything including actual tumor tissue before it's a 'go'. So keep the prayers and positive energy flowing! Until she has the meds in her hand, we're all a tad nervous.

Next steps: Continue to usher this along without stepping on too many toes. Very hard. As with most professionals, the folks at UCSF are very busy and clinical trails have a lot of moving parts, all of which are time sensitive. On a positive note...

It's official, thanks to the Chordoma Foundation and a shout out to Patty there for coordinating and confirming that Madison's actual cancer cells were injected in to mice in an attempt to make a xenograft mouse model. Good stuff, I'd wager it's a mighty mouse model.

Back in San Francisco

1/18/2017

Madison received the call that the appointments are aligned and we were summonsed up north again today, glad to keep the momentum going.

As mentioned in a thread below, the fluid from Madison's chest was sent to two labs this week. We understand that a mouse in San Antonio may have injected today with Madison's tumor cells. This isn't to try and break the mouse then fix it to help Madison, but an ongoing quest by researchers to learn more about treating and ultimately curing this disease.

(Fluid) Ounces of Prevention

1/16/2017

As mentioned in prior threads, the tumor that showed up in Madison’s lung is actually a good thing. Part of the Clinical Trial inclusion criteria is there must a measurable lesion. We knew the surrounding area was extremely unhappy, but only recently did a lesion form. (Congratulations Madi… you have a lung tumor!) If for example we get a splinter, our body says oh-hell-no… we’re going to form a blister and push that bugger out.

Today Madi had fluid some fluid drained from her chest, her body saying oh-hell-no!! Given her variation of this disease is so rare, her cancer cells are as rare as moon dust. Collaborating with research coordinators at the CF's biobank Madi donated the several ounces fluid to cancer researchers. Our understanding is they may actually transfer the cancer cells from Madison’s fluid in to a zebra fish a mouse.

What's next? We plan on traveling to San Francisco 1/17 for a few days, and again the 24th. Other that that and being there twice a month... not whole lot planed besides MRIs, CAT Scans and blood-work, Oh my!

UCSF - Day 2 of 2

1/13/2017

Day 2 of 2 complete, she's in!

Good evening for those who are following along. Skipping to the end of day-2 first, Madison was formally accepted in to the Phase II Tazemetostat trial! Looking back...

We learned a lot in the last couple of days, a whirlwind tour/road-trip. We learned that clinical trials have several categories/arms: Our lay interpretation... trial sponsors ideally need to identify a broad range of diseases that new medicines may address... makes sense, a good business model, aye? We learned that Tazemetostat has several 'arms' which include rhabdoid tumors, sarcoma, poorly differentiated chordoma, non-hodgkins lymphoma, etc. If one arm/category has filled the available patient slots, patients may be placed on a waiting list. Madison can be classified as a 'kid' in a pediatric trial (< age 25), or as an adult being over 18. The Phase I pediatric trial at CHLA has a waiting list of 40 people...yikes! On day-1 we learned that the UCSF Phase II trial at UCSF has a waiting list. Later in the day we learned the wait-lists are for other categories, but there are open slots for Madison's category, poorly differentiated chordoma if and only if it's INI1 deficient. Bingo!

On the ride home from San Francisco we received phone calls from Scot H, the patient navigator at and Dr. Okimoto the a MD/principle investigator at UCSF: Madison has been formally accepted in to the trial! The significance of this is huge, scroll down to the "Rogue Lung" post lower in the page.

Pictured, Madison standing in front of the Family House. Next to her, a picture of young girl going through treatment with the badge "Courage". Yowza! Above Madison, the sign for the Family House, we had the privilege if staying there this trip.

This morning about a dozen people from Credit Karma brought in breakfast... for 80 rooms... families going through all forms of treatment at UCSF specialty centers. Credit Karma set everything up and the Family House faculty took several of them for a tour.... good for volunteers to see people/patients in the environments they help, versus seeing only people in the lobby while they set up. After breakfast we thanked the Credit Karma San Francisco team.

Next steps, another trip to San Francisco next week and another the week after. Baseline imaging and other tests need to be taken to determine before and during treatments, and she'll be traveling to San Francisco at least twice a month looking ahead.

Thanks to Family House for providing a home away from home... and to volunteers and local sponsors/companies who support them, support us.

Love,
The Jones

So Are We Having Fun Yet?

1/13/2017

Deciding to take a walk by the San Francisco bay on night-2, we happened upon some giant tents. It had been a long day, no sugar coating that especially thinking she would be wait-listed for the trial, then finding out there were openings for her rare disease, then it's not a done-deal (more in the thread below), etc.

Upon further investigation of the giant tents, it was Cirque Du Soleil... "Luzia!" Watching people exit, we finally approached a group and asked for their thoughts of the show. Hearing things like "I've seen them all (Cirque Du Soleil shows) and this is THE BEST EVER", we decided it was a done deal...time for a major distraction, of circus tent proportion.

Success! Can't say it was a officially a 'fun' trip, but one with welcome and magnificent distractions : - )

UCSF - Day 1 of 2

1/12/2017

Hello Everyone, day 1 of 2 complete in San Francisco at UCSF.

We met with the clinical trial principle investigator/MDs in San Francisco today. He's obviously extremely bright, was very patient walking Madison through very detailed next steps and expectations. Later in the afternoon another meeting with the physician and the trial coordinator. Both awesome medical professionals

As mentioned there is explicit criteria for Madison to be considered as a candidate, or excluded from the trial. Today here and now, things are looking promising but all prayers are welcome! Extensive blood-work will be done tomorrow, an EKG too. While in a perfect world Madi would be able to have MRIs and CTs done as well, it doesn't appear that's in the cards for Friday, so another trip next week is required.

Next steps: return home tomorrow night and schedule to have fluid drained that is building up.... even consider a short term temporary tube so she can empty it herself. (reference Rogue Lung thread below). Once she has dates for final baseline imaging, it's back up to San Francisco since all imaging must be completed after written consent is signed (which was today). Imagine and blood-work must all be done on the USCF campus since where the clinical trial is registered. That's the same with blood work every two weeks... bouncing back and forth between Simi Valley and San Francisco.

Once the trial sponsor accepts the inclusion/exclusion criteria after all the tests are completed, only then can she definitively be approved for the trial. Then (you guessed it), back up to UCSF to take more blood, take the med... a pill form chemo tablet, then give more blood later in the day.

Wait, what!? Did I really just read chemo? Yes. There were some assumptions this trial was an immune-therapy but not the case here. The most common side effects with this drug include but not excluded to rectal bleeding, discoloration and/or dislodging of finger and toenails, and lips turning and staying green. <- don't read that again, only kidding but don't you love those commercials on TV?

All kidding aside, the most common side effects for this drug are fatigue.... and there may be some nausea. So how's Madi? As you can see in the picture, she's going with the flow. Madi has some of the best clinical researchers and brightest minds on her bench,

You can see more of January by pressing <<<Previous, lower left

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