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Late Friday Update

8/18/2017

Friday was a mostly good day but the pain crept up in the late afternoon and lingered until bedtime. All in all, a decent day considering a few appointments were accelerated from late next week, to mid-week. Unfortunately a rough evening from a pain perspective

Next steps:
Saturday, Sunday, Monday... rest and recondition, calories and hydration. This weekend a palliative pain specialist will come to the house. As luck would have it their office is in West LA, but the PA lives in Woodland Hills... about 30 minutes away. Keep in mind "palliative care " is simply outpatient symptom relief nb a pain management specialist.

Next Tuesday the plan is 24 hour bag of chemo in Santa Monica. Madison will be hooked up to a pump-in-a-bag that will be a slow trickle and comes home with her and will be removed Wednesday... which will be a busy day. Madi also has an appointment with the UCLA thoracic surgeon, and another with a radiologist on Wednesday. As mentioned in prior posts, surgery is highly unlikely but radiation is probable: neither would be curative but the idea is symptom relief until the immunotherapy meds kick in, and kick her cancer butt. Faith and hope.

Love,
The Jones Family

Friday Update

8/18/2017

Still a good day all things considered.

Immunotherapy Treatment #1 Complete

8/17/2017

Thursday Post, hello Madison followers! Today she had her first immunotherapy treatment. Early next week we hope to meet with an expert pain physician, and have appointments with a thoracic surgeon, an radiologist, and her oncologist for another round of chemo. While surgery is highly unlikely and wouldn't be curative, a chordoma expert at UCLA suggested a thoracic consult, so she goes. Radiation is likely on the horizon for her. It wouldn't be curative either but may ease her pain by reducing the size of the tumors, and may complement the effectiveness of the immunotherapy. Chordoma is so rare and her variation the rarest and most aggressive, there simply isn't a how-to cookbook to treat it. Yet.

Last night was a no-so-great sleep night, but she rebounded amazingly today. After 12 days in the hospital mostly horizontal and coming home Tuesday night, yesterday and last night were rough on her. Today knowing she had to go to Santa Monica and would be vertical all day, she really did amazing. Truly amazing!

Friday through the weekend, she'll get rest some, recondition her body and soul from the stint in the hospital, plans to pack on some weight she lost in the hospital, while keeping the faith and hope alive!

Love,
The Jones Family

Faith, Hope, and A Reminder About Reality

8/16/2017

Wednesday 9:20 PM update: some clarification regarding the pain. It has not really been reduced and unfortunately she's feeling mostly rotten. The reason it's tolerable is increased oral meds. Getting out of the hospital was dependent upon finding the balance to eliminate the IV meds while relying solely on the oral/patch meds. Given the pain was increasing during the 12 days in the hospital... it was a moving target. With that said, we celebrate being discharges and take it one day at a time.

As written in the noon thread, Madison starts the immunotherapy Thursday 8/17. It will be a half hour IV bag, and the next treatment will be in 1-2 weeks. We're hoping and praying for maximum effectiveness with minimal side effects, having faith it'll stop the growth and ultimately start shrinking the masses quickly. The unfortunate 'reality' part of this equation is hard to ignore. She had visitation requests today... but just she's just not up to it. Common sense might suggest she's out of the hospital, she must be feeling 'better', less pain, right? She must be 'getting' better too, look at that smile in the pics, right?! Unfortunately not the case. Just more meds required to tolerate increasing pain. So please don't stop asking to visit! If you don't get a timely reply, know she loves you too, we love you... just rotten timing.

Love,
The Joneses

Wednesday 12:50 PM: Madison returned home from the hospital last night. Both updates yesterday were brief because there was a lot going on. She got some solid sleep last night, awakened by pain in the wee hours but had the meds to take, then able to go back to bed.

We wrote about Faith on many levels: spiritual faith, faith in the meds, faith in the expert medical teams. We wrote about hope... not losing it or losing faith either. That said, a dose of reality that she is keenly aware of. Madi has angry and aggressive tumors that metastasized to her chest in June or July. Given it's a bone cancer, unfortunately it's destroying several ribs, hence the significant pain. While the pictures taken (post below) show a smiling and twinkle-eyed Madi, that was the sweet-spot when she wasn't in too much pain, but wasn't feeling too dopey from fresh meds. All things considering, SO glad to have her out of the hospital.

Keep the faith, have hope, lots of people saying prayers. I think family and friends following along are aware of the reality, but we celebrate little victories like being discharged from the hospital, but we can't focus solely on faith and hope because Madi has a realistic grasp of all three... Faith, Hope, but her reality.

Love,
The Jones Family

Tuesday, No Updates

8/15/2017

Pain Control is Trending in the Right Direction

8/14/2017

Monday 9:00 PM Update: another decent night sleep considering. Today Madi's GI said she can continue with normal meals. Given this 3 day planned hospital visit is on day 11, a nurse said it was okay to sneak in Madi's dog Bailey, who wore a clever disguise.... a Guard Dog in Training vest. When it was time for Bailey to go, it took all three of us to get her blockhead shoved down and zipped into the carrier. With luck, crossing all cross-able body parts, prayers, and faith, we hope to bust Madison out in the next day or two.

Monday - noon update: Madi had another not-to-bad night, slept very well considering where she's at. The pain seems manageable and there are rumblings in her tummy that implies her intestines may be waking up.

So then, when's she going home?! She may be free of IV meds tomorrow or Wednesday. If that's the case and she can intake and export food effectively, perhaps in another day or two.

Love,
The Jones Family

A Even Better Not So-Bad-Night

8/13/2017

9:00 PM Sunday update: Madi did another two-lap loop around the floor today, and tonight she pushed herself to three. Just simple walking seems to help oxygen level increase and while her heart was revving like a sewing machine at 150 PBM, it's now in the 130s doing the same thing just a few days later. She appears to being feeling better too, a happy thing. Let's hope and pray that tonight, she has the best not-so-bad night yet!

Noon Sunday: Two un-crappy nights in a row and Madi walked two laps around her unit at Simi Adventist hospital this morning pushing her IV tree, with the nurse wheeling the skinny two wheeled cart with her oxygen tank. To quote Madi "best nights sleep yet". The primary meds addressing her pain are oral and a patch, with the IV becoming more secondary, a happy thing. Anyone who has had surgery or been hospitalized with heavy opiates knows first hand that they slow... if not shut down the intestines. This is why doctors want patients out of bed and moving as soon and as much as possible, and off the strongest IV meds. Pill form opiates slow everything down too, but to a lesser degree... our observation.

Next step, shake her innards awake and lose the IV tree, then bring her home. The oncologists agree that they can't start chemo and/or the immunotherapy treatments with her body unable to process the input and output of food... she must have real calories.

Have faith and hope, thanks for following along and with love,
The Jones family

A Not-So-Bad Night

8/12/2017

Nothing new to report. Madi seemed much less uncomfortable today than yesterday... we hope the trend continues!

Love,
The Jones Family

Still Incarcerated In the Hospital...

8/11/2017

Friday 8:30 PM update: Remember, Faith & Hope. The abdomen pain is not cancer or tumor related per the report that was finalized this afternoon. Until then, we only knew what it wasn't, so she can keep her appendix.

This afternoon we spoke with oncologists, a pulmonologist, a palliative team to assist with the pain spikes, and an OBGYN, and they seem to have a good handle on what's causing her abdomen pain and how to reduce/manage it. Faith, hope, with perseverance.

Faith and Hope

8/10/2017

Thursday, 9:00 PM update: Madison met with a slew of doctors today. The pain she felt in her ribs (where the mass is) seems well managed with oral pain nerve blocking meds, a good thing! The pain she has in her abdomen seems to be the what drives the need for the IV meds. They're going to do a CT to see what's going on in there. We'd heard some speculation today that perhaps its her appendix, an angry ovarian cyst... only speculation, but the imaging will be worth a thousand words. Being released on Friday while it sounds great hearing and saying, the reality transitioned from hopeful, to not likely but faith remains...so Madi adapts. Absent a plan to address pain spikes without access to IV meds at home, she knows hope and faith are not reasonable action plans, and her reality is that she knows where she needs to be until the cause of the pain understood.

Thursday 11:00 AM, a message if I may: An extremely wise therapist told me we must embrace two important things. Faith, and everything that means to each of us.. For us: we have faith in God, faith in the medical team, faith in the expert's treatment road-map, second opinions, tumors boards, etc. Hope, equally important... can not lose hope.

A friendly reminder on visitors: allowed, does she want them? It depends on the timing. Again, 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 and sleep deprived at times. Any questions, text or email her dad or Angela during the day/evening, or mom nights.

Last night was a bit bumpy, pain crept up and she needed the IV meds. The pain specialist will be in later today and we suspect he may add a dash more of this and that.

Current treatment plan: # 1, get her pain stabilized with oral and pill form, but no spikes that would require IV meds. The next chemo treatment is scheduled for 8/22, with an immunotherapy drug to follow shortly thereafter.

Love,
The Jones Family

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