Blog Archives

Weekend Update

10/15/2017

Madison had an opportunity to go to her friends cabin in Bishop on Friday. Her cell phone carrier doesn't cover that area of Bishop, but her friend (and RN) Debbie sent a couple of pics from her ATT phone.

It looks like they had a splendid time... perhaps a religious retreat/experience. Madison should be home in an hour or two, so we may have more pictures to post tomorrow.

Pain Levels Are Again Managed

10/12/2017

This journey hasn't been without it's lessons on so many levels. On October 8th I wrote that her pain levels had increased, so lets talk about that. There can be muscle pain, bone pain, nerve pain, dull pain, sharp burning pain, throbbing pain, etc. The core level of pain relief is slow acting, taking 2-3 days to become effective... even just cranking them up a notch. The purpose of these is to avoid the highs and lows requiring pain meds every two hours by providing a continuous levels of slow-to-act but long lasting relief. Madison takes those 3 and 4 times a day. One drawback is that these don't cover all of the pain variations. On Saturday afternoon and Sunday Madison's pain level increased significantly. Her doctor authorized us to crank up the slow acting meds, and crank the instant relief meds to maximum levels, which basically put Madison in to hibernation mode. Every two hours she needed a huge hit of instant relief meds, and then would go back to sleep... and that lasted about 36 hours. Her care team also suggested large doses over-the-counter ibuprofen and another prescription of an anti-inflammatory. By Tuesday night, the (slow-to-act) long acting meds had kicked in, and the anti-inflammatory meds also provided significant relief so much so, that Madison's was able to throttle back the instant relief meds. Her quest is to be as awake and alert as possible, versus being heavily sedated. She calls the shots balancing how little how much she needs to control the pain without compromising her comfort. That said...

On Wednesday a drive through the Santa Monica mountains via Topanga Canyon, up Fernwood to the peak was in order. From the summit you can see the ocean so hey, we're this far, right? We took Tuna Canyon down to the coast, then PCH over took to the Malibu pier and she went for it: Madi walked to the end of the peer and sat on a bench, watched the surfers and absorbed the other sights and the cool ocean breeze.

The moral of the story... there will be bad days and there will be worse days, but when there are not-so-bad days, try and make each count. To quote Kung Fu Panda: "yesterday is history, tomorrow is a mystery but today is a gift... that's why they call it the present".

Love,
The Jones Family

Cancer Fight or... ?

10/10/2017

In January when we were in San Francisco (before Madison was accepted in to the clinical trial), there was a magazine in a waiting room and when Madi read the article, she handed it to dad. While the author was unknown, the theme struck true... seemingly for both of us. In quotes below:

"I had no control over what was happening to me and my life and my body. It's the reason that nothing drives me more batshit than when people even with the best of intentions, call me an inspiration or a warrior or something that implies I even did a thing. I think 'cancer witness' is more appropriate. I watched it happen. I saw abnormal numbers in my blood-work. I read my scan report, tumors two, maybe three. I watched the chemo nurse push the vincristine in to my IV. I didn't fight. I didn't battle. I just sat under the blankets and tried to swallow my vomit. My body was just a vessel for this happening, this squashing of a mutiny launched by some cells with a God complex".

And to quote Madison quoting author Joyce Meyer: "Courage is fear that has said it's prayers and decided to go forward anyway. So we walk forward in faith and courage. Cancer will not steal my joy today".

Love,
The Jones Family

Weekend Update - Revised to compress the timeline

10/8/2017

October 5 Update

10/5/2017

We can tell it's time to update this site because of text messages asking "how's it going" (phishing for an update, which is fine :-) Yesterday Madison's childhood friend Erin (who now lives in Colorado) visited, and they went out and had pedicures. Today Erin and Madison went to Zuma beach. So how is Madison anyway? Determined while respectful, Madison asked "would it be okay if Erin and I go to the beach?" I think both of us knew she wouldn't -not- go, which is fine... that is Madison.

Madison's dad Chris received an email that was forwarded from his aunt Sara from a distant relative, King K. Jones. King is a retired minister who lives in Seattle, and Madison's 1st cousin three times removed. King has been following this site and offered his observation... perhaps a revelation. So I say to King K. Jones, my 1st cousin twice removed... thank you for this gift in italics below (and wow).

Love from all of the Jones family.

“As I have tried to follow Madison’s experiences from a distance through her journal, it has seemed to me there have been times of encouragement from a visit to the beach, snuggles with her dog, attendance at church, some relative control of her pain, to the grand gathering of family and friends, and a weekend at the beach with her church family. Of course, all these encouragements are set within the larger reality she has so bravely embraced. I am sure, however, she and others within the family are grateful for every small victory.

Returning to the grand gathering, I would add a comment. Madison, as she reflected on the experience, had several words which came to her to describe it. One thought (or word) which came to me as an outside observer was “revelation.”

Such a very large group of family and friends coming together in one place at one moment of time was a “revelation” – a revelation of the impact she has made on others. Most people, regardless of the length of their lives, have not made such an impact on others. What a legacy to leave for all whose lives have been touched by her! Selfishly we wish her life might have better prospects for the future, but it is gratifying that she has been such a wonderful influence on so many in such a short period of time. And I join with her, her family, and her friends in expressing gratitude for each day of that future which becomes a reality.”

Weekend Events

10/1/2017

On Friday night and Saturday morning Madison and her mom attended services at Sycamore beach hosted by their church. Needless to say, Madison was surrounded by faith and blanketed in love.

Forward>>