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August 21, 2019

We had our meeting today.  Lots of info below, but nothing related to cancer status (we don't have any new imaging). Julia's day has gone pretty well.  Her sleep schedule is backwards so she's slept most of the afternoon.  She's back on her HME and is tolerating it (yay).  Speech and PT teamed up in an effort to get a productive session... it went about as well as the other recent attempts =) They did get her out of bed though!  They had her on the floor mats, and the goal was to point at a specific flash card (speech therapy) and then put it in a bucket (physical therapy).  She absolutely refused to point to cards on demand... instead she would rip them out of their hands and throw them away with an angry toddler yell.  And if they tried to put them in the bucket, she'd grab those out and toss them too.  She wasn't having it.  

But earlier in the day she happily played with Reed... a similar game.  She had her grocery basket, would pull out a food, look at it with her big O face, look at daddy, chuck it across the room, and then look back at Reed and clap.  So... I guess PT? 


Lots of info at the meeting.  It was probably about 45 minutes and included 12 people - someone from every area of her treatment and the head of the neuro-oncology department (sitting in for our oncologist who is out of town).  

We talked about what the future looks like, what possible additional treatment options are, where she might go after discharge, etc.  A lot depends on her next 2 MRIs.  She should get one next week, and she will get one after chemo round #12.  Her options will depend on if they show shrinkage, stability, or growth.


The current plan is to complete the 12 rounds of chemo, and then assuming MRIs are as expected, wait for her counts to recover and send her home.  A 13th/14th round of chemo is possible under specific circumstances: if the tumor is still shrinking and they believe her body could tolerate 2 more rounds.  After that, no additional treatment is scheduled.  Ideally, they'd like to send her home and "see how she does".  They'd monitor every 3 months with MRIs and just let her body recover.  If/when growth is detected, more treatments would be discussed.  

Should the next 2 MRIs, or MRIs in the future, show growth, there ARE additional treatment options.  There weren't initially, because she was in such bad shape and declining rapidly.  All typical cancer treatment options are on the table, with varying success rates with chordoma: different chemo, immunotherapy, clinical trials, radiation, debulking surgery.  But we're all in agreement that we want to see how she does before jumping into anything else.  And they'd like to see some stabilization in her respiratory status (trach / vent / secretions) before exploring another option.

The oncologist did confirm that he's never seen 'just' chemo wipe out this tumor, but he's seen it put into a "prolonged state of stability".  I asked if "prolonged" has ever been "permanent", and he said no.  So. according to experience, this tumor is expected to start growing again at some point - weeks / months / years, (assuming it has stopped in the first place, which we still don't know).  


So, assuming the MRIs are OK, the current plan is to discharge her roughly one month after her final round of chemo.  My own unconfirmed math puts that at late October / early November - looks like she'll hit the 1 year mark.  At discharge we have three options:

- She comes home

- She goes to a transitional care facility

- She goes to an acute rehab facility

Comes home:

We'd need to have several things in place for this to be a possibility: home nursing would need to be sorted out (meaning we have her shifts covered), she'd need 2 fully qualified caregivers (me and Reed), and the house would need to be ready (accessible, a generator, correct electric, all supplies, appropriate room setup, etc.)  The biggest pro is she'd finally be home, and most people agree that kids tend to thrive once they're finally home.   Some cons are... she will no longer be surrounded by medical staff and life-saving equipment (maybe just a con to me...), and any PT/rehab would be done in an outpatient facility (not at home), and limited to like, 2x a week.  

Transitional care facility: 

This would be a facility with 24/7 nursing: fully qualified to care for her and able to provide training to her caregivers.  This could happen if we're not ready, our home isn't ready, home nursing isn't ready, etc.  It means she doesn't need PICU facilities, but for whatever reason, isn't quite able to get home.  There are no transitional care facilities conveniently located, so we'd be looking at a commute - 40 min+ depending on what our insurance covers and who has available beds.  This could be either a short or long-term arrangement.

Acute Rehab Facility:

This would be a place dedicated to her rehabilitation.  She'd do intense PT/OT/Speech at least 3 hours a day (in addition to being in a facility that can care for her). I haven't confirmed on Google yet, but I believe the closest one is 1hr15min away.  Because she is a trach/vent patient, she has limited options.  Many rehab facilities accept trach-only patients, not patients who require a vent.  Even the rehab facility at CHOP does not accept vent patients.  I'm not sure if there is a reasonable possibility she would be off the vent by then.  

My biggest immediate concern with the acute rehab facility is they don't offer private rooms.  Julia's immune system will be compromised for 2-9 months after chemo.  So we'd potentially be putting her into a shared room with another child, who possibly (likely?) isn't immune-compromised, right at the start of flu season.  And worse... holiday season.  Will there be a constant stream of grandparents and cousins and friends and sick kids?  Sitting 10 feet away, sharing the bathroom, touching the same remotes... Will these visitors care that Julia can't be around even the mildest cold germ? Can we risk it?  Serious alarm bells.  But I will call and discuss options.

Also, to get into an acute rehab facility, she needs to prove her eligibility.  And swatting at the nurses and throwing her flash cards isn't the way to do it.  Obviously insurance doesn't want to pay for a patient who can't / won't participate.  So if that's what we decide we want to do, PT/OT/Speech will do their best to help her candidacy.  They've noticed a pattern of her absolutely refusing to participate during and immediately following chemo.  But in the week before the next round, when she's at her best, she actually does pretty well.  So they're looking to give her a break during chemo, and then try to come by every day for longer sessions when she's at her best.  The goal would be to get her ready for the intense PT as well as prove she can do it / would benefit.


So they asked what we thought about the options.  I said it depends on what oncology is thinking.  If, with everything they know about her status and her cancer, they think she's going to go home to live for 6 months, then I'm not interested in putting her through intense rehab.  But if they think she might see her 5th birthday... or her 8th... and have some possibility of a semi-normal childhood, then yes, a few months of intense PT is probably a good choice.  

The oncologist said he was comfortable speaking for himself and our regular oncologist on that one.  He said no one ever expected to be here, having this meeting.  Julia was in bad shape in January - everyone expected her to die.  Her cancer was out of control and she was minimally responsive.  He said the entire team is absolutely thrilled with all her scans, her miraculous progress, and her clinical presentation.  He said nothing he has seen would lead him to believe she only has 6 months to live.  

So that's easily the most positive thing we've heard in a year.  Things could change with the next MRI, but right now, today, the head of neuro-oncology does not believe she's on her way out.  


So... a ton of information.  We need to start researching these facilities, and give some serious thought to what the best option is, with consideration to the time of year.  We should have more information and direction after her MRI next week.


Oh, and at some point in the meeting, an announcement came over the loud speaker.  The nurse confirmed I had heard: they were testing the Code Blue bell, and to disregard.  She wanted to make sure I was ready for it and wouldn't be alarmed.  20 seconds later the Code Blue went off and I 100% blanked out.  The same thing happened that happened a few weeks ago when my PTSD counselor said "brain stem" in an unrelated context. The PICU doctor was speaking, I could see him, and hear him, but his words made no sense.  There is about a 1 minute gap in time where I just can't pull up anything from my memory.  Even being ready for the alarm, it completely shut my brain off.  Weird.


No video tonight, because it's late and she grumped all day <3  .


. ********** ~~ Julia Adams ~~  ***********    ************* Official Links ************* **************************************

Julia's official pages:  Website: Facebook: Julia's Fight Against Rare Cancer - Fund GoFundMe:

Julia's official fundraisers:  T-shirts: | Children's Book: Jewelry:

Where I buy Julia's CBD Oil (CBD BioCare 3500mg bottle): || Coupon code: danaboyd

Chordoma Foundation:

If you're new and want to know what's going on, my first post about Julia was on October 31st. You can find them all on my Facebook page or Julia's website <3

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