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
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
