Blog Archives

San Diego at Safari Park

10/31/2017

Nov 1: added a couple of pictures. All things considered, the pain is quite manageable. Madi and her mom are kicking butt!

Madison's uncle Kenny works at Safari Park in San Diego, so Madison, Colleen, and Nathan had a backstage pass. Colleen mentioned a tiger cub was confiscated from someone trying to smuggle it in from Mexico. Given the cub was becoming overly aggressive 'playing' with humans, Madison wasn't allowed to handle it. Bummer, but they were able to snuggle other babies and they saw a pair of extremely rare dingbats pictured below.

Day by Day, Living Large

10/30/2017

When the opportunities presents themselves, Madison is staying as busy as can tolerate. A week ago, she had declined in to a 36 hour hibernation, but with the introduction of a new med, she seemed to rebound remarkably.

This past Saturday the Chordoma Foundation and MDA in Texas hosted a community conference which is recorded HERE. Later in the morning I let Madison know I was watching it live and online. She asked if they have found a cure. "Sorry sugar, not yet" to which she simply replied "dang-it."

Madison and her mom Colleen drove down to Carlsbad yesterday, joined by a Nathan, who is a BFF of Madison's. Pictures of their activities will follow as those plans unfold.

Love,
The Jones Family

Saturday Evening Outing

10/28/2017

This evening Madison and Mama-bear participated in a hoedown of sorts, pictures below. This past Tuesday evening Madi needed to hibernate for about 36 hours for a new pain med to kick in. Needless to say there are still some 'highs' left in her journey, thank God for that!

Saturday Morning Update

10/28/2017

Madison basically hibernated Tuesday night, all day Wednesday and most of Thursday requiring significant doses of pain meds every two hours. She didn't appear to be in pain and basically slept through that storm. As we awaited the new to med to kick in, we gradually throttled back on the pain meds allowing her to slowly come out of hibernation mode. She was pooped on Thursday, slept until about 7 pm but was baited to the couch by one of her favorite TV shows "Survivor", which we'd recorded. About 9 pm, she fell asleep on the couch so we ushered her back to bed.

The new med is seemingly effective. While we were optimistically hoping it'd kick in sooner, appearances are that it has kicked in. Friday was a less crappy day for her in that she required less and less pain meds, but small doses more often is the key. Over the course of the morning/early afternoon, she asked for only small doses of meds when awakened for her schedule meds. By about 3pm, Madi was ready to get out of bed. Her physician came by about 5pm and seemed pleased that of the effectiveness of the new med. He's obviously been involved every step-by-step down this path of her journey, and peer-reviews each next-steps with his colleagues, with direct from Madison. Her quest remains to be as awake and alert as possible, of course balancing that by managing the pain.

When awakened at 7am this morning for her scheduled meds, she asked for only a small dose of pain meds, another indication of the additional meds effectiveness. We'll post more tonight or tomorrow morning.

Love,
The Jones Family

Midweek Update

10/25/2017

Unfortunately the pain crept up again last night (Tuesday), and Madison required large hits of meds throughout the night which basically puts her in hibernate mode on Wednesday. Her care team was and stays engaged and as per usual, added a dash of another med. We're hoping that will kick in by Thursday.

Weekend Update

10/22/2017

Madison and BFF Marleigh had the opportunity to fly a helicopter out of Camarillo, up to Santa Barbara, then down the coast. The Paparazzi was tucked quietly in the back seat, pictures below. After numerous attempts to get the helicopter started, it finally fired up. Hearing all of the racket and feeling the vibrations and what seemed to be grinding, it's amazing these things even stay in one piece... much less fly. All in all, a very nice flight. Once north of Santa Barbara the pilot requested a flight plan back down the coast. That control tower "replied negative, too busy". Wait, what? We're up here and there's no other aircraft visible. About a minute later the pilot requested again to turn west towards the coast. Same response, "too busy... too much (invisible) traffic". The pilot whispered to us that he's not letting this go, and asked again. The control tower replied back "stop talking". Not 30 seconds later the tower said "helicopter 444NV, turn west towards the coast and contact the Camarillo tower." Okay then! We flew down to about 400 feet absorbing the pristine coast... it was beautiful. An interesting observation on the way north... a few sharks. Wow! Wait!! There are surfers down there too. Perhaps that's the norm, but we'll certainly think twice before putting on a wet-suit impersonating a seal.

Approaching the Camarillo airport, we hit what the pilot called a 'wind shear'. Uncertain how many feet we dropped in an instant, I heard someone on the intercom say "WHOA". (damn... was that my outside voice)

Mama bear Colleen and Madison have plans next weekend, and in to the following week. As those pan out, pics to follow.

Love,
The Jones Family

The Bucket List

10/20/2017

Madison's home care team is awesome. When the pain creeps up they huddle, and add a pinch of this and a dash of that. They've ' got this' and once again, Madison'a pain is under control.

One of the realities Madison and her family are facing is that we are all mortal beings. Throughout this journey there have been so many things that simply became irreverent... dreaming of winning the lottery as one example, or that nitwit tailgating or texting on the freeway. Even when the lottery is hundreds of millions of dollars, it doesn't matter... that type of hope is meaningless. The things that do matter have become more clearly defined in so many ways... to Madison, and as demonstrated Madison... faith and love.

Last year we had the opportunity to hear the former Chaplin in the oncology ward at UCLA speak about death and dying. After hundreds of bedside discussions, there were three consistent themes: to 'go' pain free, quickly, and while asleep. Seeing the trend, he then asked the cancer patients "if you could time-travel back to the date you were diagnosed and pass-on pain-free, quickly, and in your sleep... would you rewind your life, avoiding the surgeries, radiation, chemo, and all of the associated stresses and treatments associated with cancer?" Overwhelming the answer was 'no'. Huh, had to ponder that! Seeing the transformation spiritually and emotionally within Madison, I now get it and watched Madison pay-it-forward without really understanding what a pillar of inspiration she is... XMO as one example.

As mentioned here a couple of days ago, her pain levels increased and with that her care team increased the base level meds. Those meds are best suited to keep her comfortable without being a zombie, while providing overall relief. It worked again, we see the pattern, so what's next?!

...the bucket list! Chatting last night about them, our intent is to always have something to look forward to....pictures to follow.

So what's on your bucket list... plan, then do... don't just dream.

Love, the Jones family.

The Bucket List

10/20/2017

'I Know You're In There...'

10/18/2017

After Bailey wakes up, she wants to make sure everyone else is up. One of the morning rituals is closing Madison's bedroom door. If it's open, Bailey wanders in and stubbornly insists that she get's Madison's attention. The first few sounds are soft woofs... then the yelling begins (barking GET UP!). Needless to say we can't have that so we close Madison's door, which obviously doesn't fool Bailey.

Unfortunately Madison's pain levels have crept up over the past 24 hours, requiring more meds, which prompt more sleep. Madi went to bed at 8pm last night... couldn't stay awake. She awoke at 1am this morning, took some meds... couldn't get back to sleep. She said that she watched some TV and bounced around on various social media sites until about 5am this morning, so if you see a "covfefe" comment on one of your social media feeds... it's just nonsense that only sometimes is explainable :-)

This afternoon Madison was treated to a luxurious facial with her mom, a great treat!

Stargazing

10/16/2017

Madison loves nature. The ranch Madison went to last weekend is in a very remote area of Bishop. The family who invited her up has horses, llamas, goats, chickens, etc... it sounded wonderful!

Their acreage is simply stunning, the picture below is of their backyard. It was pitch black Saturday night and her church family friends filled up an air mattress with pillows and blankets. They got Madison aboard and towed her out by canoe to the middle of the lake so she could gaze at everything that happens in the sky when it's pitch black outside. It was so beautiful and a highly emotional experience for Madison.

A HUGE thanks and kudos to Nathan, Derek, Debbie and Doug for making the magic happen last weekend!

Please click on the "Previous" button (lower left) to see additional pictures :-)

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