Blog Archives

Thursday Updates

8/31/2017

Hello Madison fans and followers. Hopefully most people perceived the prior post as no news is good news. Very little change relative to Madison's pain, so no updates here. She had consult with a cardiologist this afternoon for her elevated heart-rate. He's starting her on a med that should not impact her blood pressure, nor should it have an adverse reaction with the other meds she's on. She meet with a swallowing specialist tomorrow Friday.

With the holiday weekend coming up, we're hoping for three days of no-change, and then the fun starts up again. Five days of radiation begins Tuesday the 5th at UCLA. Again, it's not a curative treatment but may reduce the tumor sizes offering pain relief so less meds, and might even compliment/enhance the immunotherapy treatment, another one of those is also scheduled next week. Interestingly there's a clinical trial open on the east coast testing that combination... immuno+radiation, so we suspect the wicked smart people are on to something. One of the things we learned early in this journey... you don't want to look back from the future and wish you'd been more aggressive early-on, so chemo, immunotherapy, and radiation, oh my.

Love,
The Jones Family

Monday/Tuesday/Wednesday Update

8/28/2017

This week will be about Madi managing the pain (she's got a good handle on it), catching up on sleep, and anxiously waiting for the treatments to begin again next Tuesday. She'll see a cardiologist this week to determine why her heart-rate is so high and other than that, this week should be far less chaotic than the last few.

Sunday Update

8/27/2017

Saturday was uneventful all things considered, Madison's pain continues to be well self-managed. Her heart-rate was a tad lower than yesterday until the season finale of Game of Thrones... that sure jacked it up :-) The hose for the home oxygen unit is 100' long and bright green, so it's easy to find Madison. If she's in the bathroom or sitting outside... it's obvious. So what about traveling...

Next week should be uneventful. Madison will meet with a cardiologist to check out heart-rate and possibly get a medication to throttle it down, and next week she'll have an immunotherapy treatment in Santa Monica and then get radiated at UCLA in Westwood on September 5th.

With love, thanks, faith and hope,
The Jones Family

Saturday Update

8/26/2017

Returning from Cedars about 1:30 AM, Madison was tuckered out last night and went straight to bed. This morning she mentioned how nice the infusion center is at Cedars. Rather than recliners set up elbow-to-elbow, Cedars has dividers/pods like the luxury first class cabins on international flights, each walled off with it's own TV. If you need to be stuck in an infusion center for seven hours, its good to have a private space that allows for a nap.

This morning Bailey was crawling around under Madison's covers and finally popped her head out. Madi's heart-rate is just a tad lower than yesterday so we're still watching it. Her pain level was a '2', so she and her mom went to church. All things considered... it was a good day.

Cedars Sinai

8/25/2017

Madi and her mom left for Cedars in LA at 3:00 pm to get the transfusion mentioned in the post below. At 5:00 they took some blood, analysed it, and then made two custom bags based upon what the saw in the analysis. Bag #1 started about 8 pm, and bag #2 will start about 10. With any luck they'll be home by 1 am :-(

Love,
The Joneses

UCLA Day-2

8/24/2017

Today Madi met with the radiology team again at UCLA in Westwood for A CT simulation... it's basically to get fresh imaging of what's going on in her chest, then determine how much radiation to give her. She's scheduled for her first dose on September 5th.

From there, off to her oncologists office in Santa Monica for bloodwork and just a general how'd-do, any new symptoms, vital signs, etc. Her heart-rate is still humming fast like a sewing machine but he didn't seem concerned... the radiologist at UCLA wasn't either. But... given her hemoglobin count was low and her WBC counts were high, they'll give her a blood transfusion tomorrow at Cedars. Nothing we perceived as urgent, but rather knock it off the list than have it looming in the future.

UCLA Day-1

8/23/2017

This morning Madison met with a thoracic surgeon at UCLA. We knew that surgery wouldn't be curative but UCLA chordoma experts suggested a consult to determine whether something could be done surgically to help ease the pain. The thoracic surgeon was great, already very familiar with Madi's case before even meeting her. We knew going in to the consult that surgery was unlikely. The surgeon explained that first step should be controlling the disease (hope and faith with the treatment plan), and then evaluate whether something that can be or needs to be done after that.

After lunch Madison met with a radiation oncologist. We knew radiation wouldn't be curative, but it can be an un-intrusive solution to reducing her pain levels, and ultimately reduce the drug regiment.

Love, hope, and faith...
The Jones Family

Pseudo-progression?

8/22/2017

The term 'pseudo-progression' in the prior post: several Madison followers didn't Google it and just saw the word 'progression'. Basically it can be like fake news: consider it like a loudmouth at the podium creating racket to get attention. After immunotherapy, tumors can increase in size causing intense pain. We like to think of them as agitated ideally before there is a reduction in size or in a perfect world, go away.

Pasted from this link: "We continue to learn about some issues that are very specific to immunotherapy. One of those is the concept of "pseudo-progression". As the name implies, it looks like progression, but it actually isn't -- in fact, it may precede a good and prolonged response to the immunotherapy".

Madison's pain increased considerably, and the pain management specialist added another pinch of this and a dash of that. Given several Madison followers read the post below focusing only on the word 'progression', they perceived it as fact. Being full of hope and faith, we've decided that all of the racket in her chest causing Madi's increased pain is just pseudo-progression... an alternate fact.

With love, hope, and faith,
The Jones Family

Sunday Update

8/20/2017

Good day Madison followers, happy Sunday.

Yesterday after the PA increased two existing pain meds and added another, Madison's pain became much more tolerable. By 10pm last night she was falling asleep on the couch... okay, time for bed. Given she had almost no sleep Friday night and with her pain eased, we were amazed she was even still awake at 10.

Madi needs her pain meds every two hours around the clock. Both mom's and dad all but insisted we gently wake her up every two hours, hand her the med, and one of us would return in another two hours. Point being, if she misses a dose or two sleeping, the pain can be intense. Since she can't get IV meds at home, it'd take 30-60 before a pain pill kicks in (vs. IV, which is less than 30 seconds). But Madison being Madison, she set a reminder in her phone and had doses of meds on her nightstand. Very directly she declined to have one of us come in throughout the night. She set alarms in her phone, woke up, took the appropriate med, and noted it on a spreadsheet that has the types and times, and went back to sleep. Looking back to when I was 22, I'd have done the same (stubborn : ) thing. She's got this, doesn't need to be babied (nor will she allow it).

So yesterday, the pain was such that we had to bring her her meds, spreadsheet in-hand, and setting our phone alarms. Today, Madison is flopped on the couch, the TV remote in one hand with her phone in the other (typical for an unemployed college dropout (her term, not ours : ), with the med time & type spreadsheet by her side. We glance at it, but she's on top of it all.

So how's Madi now? She's well medicated but mostly awake and surprisingly coherent. We'll see her eyes close with her cell phone in- hand. When it beeps, she opens her eyes and and types away. So... don't be surprised if she likes a Facebook post and replies, or responds to a text with 'covfefe'.

Love,
The Jones Family

Saturday Updates

8/19/2017

An awesome Nurse Practitioner (NP) came to the house this afternoon after discussing Madison's scenario with the Pain Management expert physician. Since a NP can write prescriptions, she wrote a new one and actually stopped by a pharmacy on the way to our house to pick up the new med. (told you she was awesome : ) Madison is resting better, the pain crinkle on her forehead between her eyes is much less. With modern chemistry and a bit of luck, we hope Madi get's less crappy sleep tonight than last night.

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