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September 4, 2019

Julia's had an OK day.  She's pretty much slept non-stop, just waking up to barf or have therapy.  Both speech and OT visited for about a half hour each.  They're trying to stick to her schedule, but she's just so tired.  As her counts start to fall, she's even more exhausted than while chemo is being administered.  So she was about as cooperative as expected.  Other than that, vitals are all fine.

She just recently woke up and she's pretty happy.  Adorable video in comments.  


I had the most frustrating call with our case management team today regarding discharge.  I feel like I was in the twilight zone. No one was understanding me.  They said they did, but then proved they didn't by the end of the sentence.  Nothing is decided yet, but after a 15 minutes phone call, I was left confused-angry (I actually checked the thesaurus for a word that means both confused and angry, but apparently we have none.)

Here is what I learned:

- Dupont "likely" will not be interested in Julia.  They "likely" will not consider her a candidate for their rehab program.  

- CHOP wants to send her to a shared-room rehab in Allentown (not happening).

- They will be doing her final acute rehab evaluation stupid early, therefor setting her up to fail.  Why?  Who the hell knows.

- PT right now might actually be harming her chances of rehabilitation in the long run.

So, pretty much... After she finishes up chemo, we want her to go to Dupont to complete acute rehab before she comes home.  She has limited rehab options because she's a trach/vent patient.  There is really only one other acute rehab + trach/vent option in the area, but they only have shared rooms.  Her immune system will be compromised for months after chemo, and she will be discharged right at the start of flu/holiday season. 

  Now, they stress that nothing is decided yet, and further evaluation is necessary, but they were REALLY setting me up for "Dupont doesn't want her".

I asked why this other rehab facility will consider her a candidate, but Dupont won't.  Right?  She can either handle 3 hours of acute rehab or she can't.  They couldn't answer that.  (Seems like something you'd want to find out?)  They said Dupont requires three things for candidacy: 1. An exit plan (she has one). So the issue is with 2 and 3: 2. "Rehabable goals" and 3.) Proof she can complete acute rehab.

From an insurance standpoint, I get both.  I'm not arguing the reason for these requirements.  No insurance wants to pay for a patient who has zero possibility of benefiting from rehab.

My issue is with WHEN they are doing her final evaluation to determine eligibility.  Because, apparently Dupont has her info now, and "doesn't think she'll be eligible".  Like... based on what.  She's being injected every 3 weeks with literal poison, and they're surprised she doesn't want to do sit-ups?  Her chemo will be DONE after next cycle.  Everyone at CHOP agrees she performs "remarkably well" at the end of every cycle, when her counts have recovered and her energy and stamina have returned.  You all see it here in my nightly posts.  She's active, and receptive, and smiling, and happy... And yet, the plan is to NOT allow her this recovery time, "and then some", to prove she's a good candidate... 

She is set to be discharged (oncology orders) 4 weeks after her final chemo is finished.  However, 'discharge planning' takes ~3 weeks.  So her final PT assessment will be 3 weeks prior to discharge, therefor ~1 week after her final round of chemo. That's like... now.  In one cycle from now.

Guess what Julia's been doing for the last 3 days?  Barfing and sleeping.

... Due to chemo.  

You all know you can die from chemo, right?  That's how bad it is.  Medically, it's what they have to fight this.  But among the endless list of side effects, she likely suffers from crushing fatigue, nerve pain, joint pain, nausea, diarrhea, focus issues, headaches, confusion... and a big one is anemia (low red blood cells) - this adds to the exhaustion and prevents oxygen to get to her organs (guess what organs need...especially during exercise).

And THIS will be her physical state when they determine her eligibility for Dupont.  This acute rehab program would help her so much... she might leave there in 1-3 months able to sit, and reach, and play... maybe even walk.  She might have some sort of semi-normal childhood after everything she's been through.  She might no longer be stuck in a bed after an entire YEAR...

But instead of giving her a fair shot at this, they plan to evaluate her while she's crippled from chemo... and I seem to be the only one who thinks this is fucking crazy.

"But we'll wait until she finishes chemo," is all they keep saying.  Yes, she needs to finish chemo. And then RECOVER from chemo.  And then START a reasonable PT regimen at CHOP.  And THEN get evaluated for acute rehab.  That is weeks after her final chemo is delivered.  Not *A* week.  Lots of weeks.  I told them I feel like they're rushing her out the door.  They say they're not, but then go right into "but let's keep our options open".


Oh, and apparently PT goes into her sessions with goals every time.  Makes sense.  But doing poorly (like, say, while having toxic chemicals pumped into her heart), could negatively affect her chance at something like acute rehab.  I didn't know this.  I figured we were just doing our best by her, keep her from losing all physical ability, help her maintain while managing chemo, and then when she's READY, see what she's actually capable of.  I guess that's not necessarily how it goes.  

So, scenario, based on our phone call.  PT might go in and ask her to reach for her toy.  She might reach for it 2 times out of 5.  The next day she might reach for it 3 times.  Then 3 times again.  Then 4 times.  All progress.  All proof that PT is working.   But then... she gets injected with poison, and now she only reaches for her toy 3 times.  And then 3 times.  And then 3 times.  Now they've determined that she's no longer "progressing" with PT.  Therefor PT is useless.  Therefor insurance will no longer pay for PT since she's maxed out on benefits.

Obviously a simplified version, but that's what we're dealing with here, which is news to me.  Every round of chemo hits her harder than the previous one.  That is why you can't do chemo forever.  Eventually your body gives out.  So even though Julia is gaining abilities (mostly due to her own efforts), her body is getting weaker.  And every time she does poorly at PT, due to chemo, that could be another mark on her report card that says she's "not a good candidate".  Apparently, completely disregarding how well she will probably do once chemo stops.

I said our "rehabable goals" for Julia is to walk again.  They said she might never get there.  Like... excuse me?  From the start, I assumed that the back-to-back-to-back surgeries and sedation and coma is what has kept her from walking.  And that regaining strength, and balance, and stamina will allow her to walk again.   And I was under the impression that she just kept hitting roadblocks.  Did they clip something during a spinal surgery that I'm unaware of?  Did they remove the 'walking' chunk of her brain?  Did the stroke affect her entire body?  Did the cancer or infection make her 'forget' how to learn to walk?  What the hell is preventing this with time and practice?  Isn't that the point of rehab?

But they said they have no idea, and it's up to PT to determine if she's "reached her peak".


So pretty much they are making her weaker and weaker, through rounds of chemo, and at her very weakest, but "technically after chemo is finished", they are going to evaluate her physically and determine if she's good enough for Dupont.  


And they just couldn't seem to figure out why I had such a HUGE problem with this.  Why I don't just want to send her to a shared room in Allentown.  Why I want to give her another MONTH in CHOP, after chemo recovery, to allow her to regain strength and do better in PT.  Like... no real response other than "Well, let's not put all our eggs in Dupont's basket".

This is insane, right?

Has she not beaten every odd thrown at her?  Has she not proven she's born to fight this?  They left her to die, and here she is.  They said she'd be permanently brain damaged, and here she is.  They said she'd never talk, see, or move again, and here she is.  And we seriously can't give this girl and extra month to recuperate from poison in her veins before we determine her PT worth?  Why is there ANY pushback from CHOP or Dupont?  If the fight, strength, and perseverance that Julia has demonstrated, as a 2 year old, is not what Dupont is looking for, then they're in the wrong fucking business.  


So that's how I walked away from the phone call.  Not happy.  

Then I guess an NP, who was not present on the phone conference, talked to Reed about much of the same.  He made his position clear (which aligns with mine): no shared rooms and she needs to be evaluated at an appropriate time.  He said she seemed more receptive.  He said she said Julia would not be evaluated "too early" (but that doesn't line up with the timeline we're given).  He said she said if insurance stops paying for her PT, they will write letters explaining the situation.  So we'll see.

I'm being told they want "Plan B" in place "Just in case".  But I am predicting that "Plan B" is really "Plan A"... that part just comes to light later when "Welp, we tried, but at least we planned for B!"


If Dupont refuses to take her, I guess she's coming home.  Who needs professionals with degrees and years of experience to rehab your brain stem cancer, spine-fusion, trached, bed-ridden, stroke-patient toddler when mom and dad can do it?  I'm sure our combined 35 years in the computer field will come in handy.


I am REALLY hoping someone along the way has just received some serious misinformation, and that Julia will not be disqualified because they're rushing her out the door.


In other news.

Reed sent me a picture of Julia's eyes crossing mid-line and looking left!  Huge progress!  And poor Big Man Gabriel is sick, and has been calling for "mommy hugs" all day =( But I'm just recovering enough to go see Julia, so I definitely can't see him.  So I had to settle for FaceTime, and watched him bounce his Peppa's (that he stole from sister) on the floor and saying "trampoline".  It was adorable.  Speaking of Peppa - sweet video of Julia and Peppa in comments <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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05 Sep 2019

Hi Amy! I am the one who met you at your work when I had a sick iPad! You were kind enough to tell me your whole story and I have been following ever since. I am also a recently retired nurse. You are brilliant so I am relatively sure you are not in need of any advice from me, but want to throw in my 2 cents worth. Your thinking is absolutely, positively on the mark. I find this scenario a tad hard to believe. The concept of needing time to recover from 12 rounds of chemo is a very simple one. I kmow you are going to, but get down to DuPont and meet face to face with…

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