Blog Archives

West Joins East - East Meets West

8/30/2014

Madi's BF/BFF Rodger and Chris' wife/Madi's step mother Angela flew in early this week. Both are an important part of Madi's care and well being but neither could depart SoCal right away. Given the Jones family was able to leverage donated frequent flyer miles for the most part, almost free... everyone's favorite price. Angela and Rodger have to eat somewhere... might as well be Boston, aye? Again, food, cabs and the like are not paid from gifts/fund monies and each already had a place to stay.

Rewind back to June: Dad Chris and mom Colleen met a wonderful man at MGH at 'Eat Street', the hospital cafeteria. Eat Street has good food and it's remarkably reasonable. Madi was at MGH for surgery, and Scott was going through Proton Therapy, series 1 of 2. In common, chordoma... an unspoken bond. Madi was in post-surgery in ICU and couldn't entertain visitors.

Scott had just finished round 1 of 2 PBT, but the stars weren't aligned for them to meet, and both left for their respective coasts to recuperate for the next stage of their treatments. Scott and his wife Suzi are east coast and Madi, west coast. They did have messages for one another... you may have seen them on Facebook.

This Thursday the stars did align. Scott is about 3 weeks post-op and he and Suzi visited Madi in her hospital room... east met west! Scott's a musician who lives in the Florida Keys brought an original CD that he made. He couldn't sit in a cab given the location of his surgery, so standing on the inbound train it was. Madi and Scott have an uncommon bond and it was great that they could finally meet face to face.

Madi was discharged from the hospital today. MGH took very good care of her and managed the side effects of chemo well. For dinner tonight Madi had 3 tacos and for desert, a bowl of ice cream.

The MGH Radiation Station

8/27/2014

Madi, her mom Colleen and dad Chris traveled to Boston from Simi Valley CA on August 23. Why Boston? Again, we feel that Mass General Hospital (MGH) has the best team on the planet specific to Madison's complex case, and chordoma requires a multidisciplinary team and collaborative excellence.

For Madi's scenario everything and the kitchen sink has been recommended by the medical team to reduce the risks of recurrence. As Madi is one in a million, so is chordoma... sneaky boogers that require aggressive specialized treatment.

Madi was admitted to Mass General Hospital on Monday August 25. Treatment this week is Proton Beam Therapy (PBT) mornings, and chemotherapy evenings. A double whammy for the first five days. Next week (no chemo), PBT Tuesday-Friday and the following, PBT Monday-Wednesday. The plan, leave Boston Friday 9/12 and finish chemo treatments 6, 7 and 8 in Woodland Hills, CA.

There's a phenomenon called anticipatory nausea as explained by Madi's oncologist. When you're standing on the tracks, you know the chemo train's coming and you hear the horn: thoughts and fears of prior experiences are resurfacing, and are real: It's something that can be debilitating and is very real as explained by her doctor.
Fortunately after a fine box of wine with crackers and a can of spray cheese, Dad was feeling much better. Woof... that was close.

All kidding aside, Madi is doing very well to date considering the shotgun approach. The medical team seems to have a firm grasp of managing the side effects of chemo, the nurses are awesome, and Madi has a private room this week. Three more gifts/blessings.

This picture is actually of Madi: Her custom made mask secured to the table, a warm blanket, and I think Monday was country western music day. No hospital gown for Madi, nope! Day 1 she wore a pair of leggings and her "Boston Strong" shirt.

We touched and humbled by the support, love, and prayers. Thank you!

Love,
The Jones'

Simi Valley Newspaper

8/22/2014

As mentioned in a prior update, Girl Scout Troop 60232 hosted a garage sale/fundraiser on August 2. They were awesome as were all of the friends who helped and contributed.

That story and Madison's journey were featured in today's local newspaper. You can read it at this link.

Madi and her family are continuously touched by family,friends with all of the love, support, and prayers.

Cleared for Take-Off

8/19/2014

Madi had a doctors appointment with the awesome Dr. Storch, the head of Pediatric Oncology at Kaiser Woodland Hills. It's rare for patients to form a bond with their doctors... but Madi is clearly extremely fond of Dr. Storch. A sense... the feeling is mutual. To date, she is our favorite doctor of all time and we've seen plenty. Dr. Storch represents passion, compassion, and excellence. Her whole team does, including the staff in her office and the nurses on the 3rd floor.

Rewinding back to November of 2013: We were on our way to Boston and connected in Denver... no plane change required. What surprised mom, dad, and Madi is everyone left, included the crew. Huh! Wondering if they left the ignition keys Madi and dad wandered up to investigate, arguing who would be left seat (captain). Madi won the flip.

While peering in to the cockpit, the new captain came aboard. Seeing we were in awe of the instrumentation he invited her up to take a seat. Cool!

Fast forward to yesterday: Madison's blood work came back normal and Madi is cleared for takeoff to Boston this Saturday.

Getting Ready for the Next Leg of the Journey

8/14/2014

During the last doctor’s appointment leaving Boston in July, the doctors made an additional recommendation… another 4 rounds of chemo concurrent with the final proton radiation treatments. Since chemo impacted Madi’s tumor initially and the fact that it was impossible to get clean margins during surgery, the chemo recommendation is a proactive measure to reduce the risks of recurrence.

The family travels back to Boston an August 23rd. Madison will be admitted to Mass General on the 25th.

Madi's chemo regime week-1 is M-F. She'll have proton radiation the same days. Madi will be discharged on Saturday. Week-2 in Boston will outpatient radiation M-F, and week-3 will be proton radiation Monday and Tuesday. Wednesday and Thursday will be exit appointments in Boston, and we're planning on returning to Simi Valley on Friday September 12.

When you rewind back to June 26, the second major surgery that week.Today is the 7 week mark and she has not had any pain meds for a month, which is absolutely incredible.

We went to a pool party last weekend. I think friends were stunned to see how strong she looked and how well she's doing.

A Heartfelt Thank You To Girl Scout Troop 60232

8/2/2014

Our close friend Windi and Girl Scout Troop 60232 have been planning a fundraiser to support Madison and her family. Saturday, it happened big... very big.

It was an OMG moment that touched us to our cores. They presented us with the proceeds... $1,260. Mind you it's not just the money to help offset medical expenses, but all of the people who made this such a success. A heartfelt thank you to Katie Elias and her daughter Bridget, Dee Peason and her daughters Dallas & Dana, Nanette Metz and her daughter Amelia, Tess Blankenship and her daughter Kai, Mirian Markley and her daughter Amanda, Tim and Lisa Friedman, Bambi Corso, Jo Anne Tuers, Bob Corso, Trisha Ballenger, Lola West, Dale & Colleen Burow, Gina Nielsen, Pepe & Celia, Matt Rodela, and a special shout out to Windi, Anthony, Amanda, Daryn, Ryan, and Tylor along with the awesome Girl Shout Troop 60232 for their love, support, and dedication.

As mentioned on another tab at this site gifts/donations are used explicitly for Madi’s treatments, deductibles, and related travel expenses from CA to MA. While excursions, food, and activities are important to maintain a sense of balance, the family covers them out-of-pocket and not from the gifts/donations. We'd be eating at home anyway, yes?!

Neck Braces: you gotta wear them somewhere....

8/1/2014

Madison is supposed to wear her brace while in public, in a car, but should take it off when she is relaxing, eating, or sleeping. The doctors want to keep her spine protected for 8 weeks, but also increase her neck strength and mobility by having the brace off.

We've seen this a dozen times but finally captured a picture.

It's been 5 weeks since Madi had two major surgeries... she hasn't needed any pain meds for a few weeks. Amazing and inspiring...