Blog Archives

Tumor board results are in

10/25/2013

The chordoma tumor met yesterday. They informed the healthcare provider today of their treatment recommendation who in term, reached out to Madi. The provider to date has been awesome, demonstrating they provide excellent care 999,999 times out of a million.

Another one in a million today: The Jones' healthcare provider verbally agreed to defer to the experts, and refer treatment to the Stephan L. Harris Center for Chordoma in Boston at Mass General... the chordoma A-Team.

Next steps

10/21/2013

Specialists are meeting at a 'tumor board' on Thursday October 24. From that, a surgical/treatment road map will be outlined to determine what the next steps are, and when. Updates as they're available.

From the Jones', a sincere thanks for all of the support and positive energy. Madi will beat this. Period.

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Get well and lots of love

10/13/2013

A dear family friend Windi spearheaded an effort to have friends to hold up get-well-soon signs, Rodger and Carlie took the batons and ran with them.

Windi collected the photos and created an album. To say it made an impression would be the understatement of the year.

It's not too late! If you want to send Madi some love, simply make a sign, have someone take your pic, and send it to [email protected]. It will be printed and added to Madi's album.The pictures will also be uploaded to Madi's photo gallery... check them out!

Ellen DeGeneres

10/8/2013

Madi's stepmother Angela and her girlfriend had tickets a few months back but were seated in a side ("Riff Raff") room to watch the show air on TV monitors. Everyone who was in that room was given tickets for Nov 5 are guaranteed seats. Angela's girlfriend 'can't make it' and has given up her ticket to Madi.

Angela wrote to Ellen several weeks back to promote awareness about this rare form of cancer, and Madi's quest to beat it. The Chordoma Foundation is doing great things to better understand the cancer and treatments: Madison has agreed to donate part of her tumor to help advance the research, as well as taking part in another test that might somehow link the DNA genetically.

If the stars align and Madison is in SoCal vs. traveling to Boston for treatment, tickets are for November... stay tuned.

6 weeks and 1 day following surgery

10/6/2013

The family went out to celebrate two birthdays. Madison waited until dinner to take her neck brace off. Best birthday gift ever! (Photo in the gallery)

The third opinion in progress

10/3/2013

Another Chordoma expert confirmed today that she received all required reports/notes/images, and her team met at 4 PM today to discuss Madi's case and treatment recommendations. It's an immense amount of data but we hope to know more Friday or Monday.

On Sunday 6 weeks after surgery, Madison will be allowed to eat without her neck brace!

Today we were given the first opinion

10/2/2013

We met with our primary care provider today. The bad news, they concurred with the second opinion (which was actually communicated to us first).

The bad news was seconded: another surgical resection will reduce the risks of recurrence and the long term benefits outweigh the risks associated with another surgery. The better news: this should not be as intrusive and she could be out in 3-4 days (vs. the last stint...10 days in ICU).

So how's Madi?! Rattled at first as her family was, but heads held high. Chordoma will not win. The third expert opinion is due this week.

Madi gave a presentation to a local high school on September 30, 2013. It was very spiritual and inspirational. When asked how she felt about it afterwards, Madi said if she helped just one person become stronger with his/her faith, will, and determination, it was worth it.

... and this, with a neck brace on with radiation in her future. Wow!

The second opinion is in regarding a second surgery

10/1/2013

We have a second opinion in regarding our primary provider recommending surgery to remove residual tumor. The second opinion team does believe that this will reduce the risks of recurrences.

We anxiously await the treatment road map outlined by our provider on 10/2: We will then compare with second and third opinions as they come in.

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