Blog Archives

A Pinch of this, a Dash of That

8/9/2017

8:30 PM Wednesday update, a partial retraction: I checked my notes... I was given bad information, fake news. I was told that "IV pain meds were required on-time all night (which is every few hours) and they're not cutting it". Incorrect, they must have been thinking of someone else. I learned since the post below that she needed them only a few times over 24 hours. Phew! That said even if only required a few times, Madison said she'd rather stay in the hospital another day and know for sure she doesn't need any via IV than risk coming home and then learning what she has might not be enough. The physician tweaked the pill-form meds a bit, and we'll see how she does tomorrow Thursday. If the stars align and she's comfortable with the newly adjusted pain regime, Madi may be released Friday.

To the doctors point, work up with a pain patch and oral meds, with the IV med as a contingency. She needs assurances that once discharged, she has the proper level of pain control and will have no need (and will have no access) to IV meds.

What a Difference a Half a Day Makes!

8/8/2017

Tuesday Aug 8, 8:00 PM update: Throughout this afternoon Madi has required less IV meds, in fact her last shot was available for her at 3:10 but she waved it off... not needed yet, her pain level is manageable. The other time-released meds seem to be kicking in, and the goal of course is to -not- need IV meds, and tweak the pain patch and pill form meds accordingly. The pain management specialist came in this evening, very pleased. Madison was sitting in a chair with her feet up on the bed albeit briefly.... having just returned from a very short walk.

They can't prescribe IV pain meds for take-home use: required, trained nurses with all of the electronic monitors and resuscitation equipment in case of any respiratory challenges. Assuming we get her home this week, she may or may not come home with an oxygen tank.

Up until yesterday they didn't want her out of bed and things seemed to deteriorate since her arrival Friday. She's still on IV antibiotics for the pneumonia, her can heart rev like a sewing machine at times, oxygen level a tad low... which may be her new normal. What a huge difference a half a day makes!!

Next steps are to be IV free, try and get her home this week, then fatten her up like a Thanksgiving turkey, ideally to be physically prepared to continue with the current treatment roadmap, while exploring all options her expert chordoma team may consider.

Love,
The Jones Family

A Wave of Nausea - Updates Posted Through August 8th

8/5/2017

A wave of nausea came in to her raft about 3 PM last Friday afternoon (August 5th) that prompted vomiting. Long story short, Pneumonia and hospitalized Friday the 5th.

Soooo, visitors... allowed, does she want them? It depends on the timing. Madi requests that there are no pop-in's, but text her. If she doesn't reply, she's asleep (so no : ) If she feels yucky and doesn't reply, trust that it's not personal, she loves you too, just rotten timing. Any questions, text or email her dad or Angela during the day/evening, or mom nights. Unfortunately flowers are not allowed given her recent chemo.

Love,
Team Jones

Still hospitalized, the newest updates will be at the top:

Tuesday Aug 8, 9:30 AM: The pain management specialist's plan was a success. Taking her off morphine and adding the med that blocks nerve pain along with two other pain meds worked well last night. While the pain seemed to increase over the past 24 hours, adding a a touch of this and sprinkle of that resulted a decent nights sleep considering where she's at.
Monday Aug 7, 9:00 PM update: Madi's pain has increased over the past day and we met with a pain management specialist this evening. He has a plan to increase her meds without risking other issues. The physician also added a nerve pain-blocking agent that taken as-needed before, seemed to really help. Team Madison is by her side 24x7... not because she needs it but to be there to just sit and chat, not chat, or just sit quietly and watch TV with her.
Monday Aug 7, 1:00 PM: Nothing noteworthy to report, sleep in hospitals is evasive in general. A knock on the door, a "hello, sorry... can I come in", the lights go full-bright and they draw blood.... when it's still dark outside. It makes sense, the doctors want to see the reports before then do morning rounds but dang, just plain noisy and unsettling even in the best hospitals with the best nurses.
Sunday Aug 6, 5:30 PM update: No changes, she napping off and on, watches some TV, fiddles with her phone, and reads a magazine to ease the boredom while pummeling her with IV antibiotics.
Sunday Aug 6, 11:00 AM: still incarcerated. Her spirits are fairly good considering the situation. They did hint at maybe keeping her until Tuesday :-(
Saturday Aug 5, 9:00 PM update: No changes... they're still planning on discharging her on Monday.
Saturday Aug 5 1:00 PM: Madi's mostly been snoozing, a good thing. She was awake for a bit and seemed in fairly decent spirits... comfortable being hospitalized (versus hating it). As she said last night, "it's not my first rodeo". She's a very gracious young woman, very kind to the staff here and kind in general. She told a joke a few days ago that's a great "ya get what ya get" reminder. On an imaginary menu: "Coffee, black" costs $2.99. "Coffee please" is $1.99. "Hi, good morning! May I please have a cup of coffee" costs 99 cents.
Friday night: hospitalized for IV fluids to treat pneumonia.

Love,
The Jones Family

So How's Madi?

8/4/2017

Sleep and pain management have both been evasive but here and now, pain is a 4 out of 10. She had to take another trek to Santa Monica yesterday for an injection that should keep her WBC counts from crashing. If that happens, she'd have zero immune system, would be at risk of an infection which might require hospitalization for a few days of IV antibiotics. With the good things the infections does, one of the side effects is bone pain: adding insult to injury, so cranking up the pain meds a notch.

She had mild nausea earlier this morning but nothing like when she had the chemo regimes in 2014... those were brutal. In the infusion center this week she met another young woman who had the same chemo that Madi had in 2014, and has have the same chemo that Madi is on now. She said what they're taking now is a "2", compared to the toxic regimes of old being a 9-10. While all disclaimers apply, Madi seems to be tolerating the chemo here and now okay... all things considered.

Day-1: A New Leg on the River

8/2/2017

Wednesday Morning: Madison returned home yesterday evening with a bag of chemo in a shoulder-bag with a pump in it, with a six 6' hose attached to her port. While it was a long day in the clinic and on the road, it all went without incident. All things considered, she's feeling okay. Today she returns to the clinic for a few hours: they'll probably give her another bag of iron, maybe another bag of steroids, and unhook her chemo pack.

4:00 PM update: Madi's in a lounge chair in the infusion center in Santa Monica, fast asleep: it's a noisy environment so she was tired..Sleep was evasive last night but she took a nice long nap today!

Another Wave Her Way Comes

8/1/2017

Madison on the Kings River in 2008, far right. This past weekend wasn't her first time in turbulent waters. Very tired, she feels much better today than yesterday... as prepared as she can be for the upcoming rapids. Is it really a 'fight'... one doesn't win or lose to a river when there's no other choice to reach calmer waters. Through prayer and positive energy, we all help tighten her vest, she'll paddle like crazy, and take the ride filled with faith.

Love,
The Jones

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