September 17, 2019
FINAL ROUND OF CHEMO* day 1 of 5! There is a (very) small chance a 13th/14th round would be done, but I don't believe anyone expects that. I assume they'd need to see further shrinkage from the tumor - which would suggest the chemo is still doing stuff. If the tumor continues to stay completely stable, they will stop at 12. If the tumor grows, they would not continue chemo (as it clearly would not be working). And with it being stable for 6 months, my assumption is that's what we're all expecting. So 12 rounds should be it! Already 1/5 of the way through as I type this =) Her tests last night (due to her dark-colored vomit) did not find anything. X-ray confirmed her feeding tube is in the right spot, and a 'venting' of the g-tube didn't produce any blood. A current theory is she coughed so hard she had some reflex up from her intestines and it was just formula that came out. She WAS coughing an awful lot yesterday. Speaking of coughing - she has continued to cough today. They did some labs and found her white cells a bit higher than they were a few days ago. So they ran further tests to check for infection / inflammation, and everything came back fine. No discolored mucus. No fever. All vitals are great. So the team all agreed that with good results across the board, she was clear for chemo. Everyone always asks for prayer specifics. This is definitely one. When we opted for this chemo, we were told the complication risk is HIGH. Like 80% "something happens". Generally infection. So far Julia has dodged ALL complications. We have one more round... But it's happening at the start of back-to-school season, and with flu season right around the corner. We need her to beat the odds one more time. ~~~~ We toured Good Shepherd in Allentown today. I'll just copy my notes here in no particular order: --- 1.5 hours away. Rush hour was decent. Nothing like 76 into Philly. Though coming home from Philly at 1am... I can make that happen in 40 minutes.
--- She would have a completely private room. If one wasn't available, they would turn a double room into a private room.
--- Rooms have similar amenities to CHOP. Luxury as far as size. No shower though. There is a shared one in the hall, but there is a private bathroom in the room. And a chair that pulls out into a full-size bed. A huge upgrade for Reed! One parent (or any related adult really) is allowed to stay overnight with her, if desired.
--- The local hotels will allow us to stay for up to 30 nights, doesn't have to be consecutive, because we are 55+ miles away. They said sometimes families use that on the weekends to bring other kids up to all be together. It's a nice option to have.
--- She'd have 3 full hours of PT 6 days a week. Sundays off. This would be 1 hour of Speech, 1 hour of OT, 1 hour of PT. In addition there is structured play time with a therapist. There are nice therapy rooms if she's healthy, or equipment can be brought to her.
--- They have plenty of experience caring for children with all of Julia's considerations, though I don't know if they've had them all in a single patient.
--- Given her history, they would have a low threshold for anything out of the ordinary (such as acting weird, neurological symptoms, etc.) They can do all labs and basic tests. She would still be seen at CHOP for her followups (they would transport to/from via ambulance), but Lehigh Hospital is literally in the same parking lot should an emergency arise. That's comforting.
--- This would be a short term stay for acute rehab and continued trach/vent training. 1-to-"several" months. Depending on how much she has to gain.
--- Of course no one can speak for Julia, but they say it's definitely realistic for a kid to come in unable to walk, and leave able to walk. Even if with a walker. That was encouraging.
--- It's very small. And perhaps that's just because my only reference point is CHOP. They have a doctor, nurses, several respiratory therapists on staff. But of course nothing like having the PICU 10 yards away. It makes me uncomfortable, but I'm sure I have no say in that. She can't live in a hospital forever. All the staff there is fully qualified to care for her trach/vent and all typical emergencies. They said for big emergencies they'd dial 911.
--- She would have a pulse-ox monitor, hardwired to the monitors and the nurses phones, just like CHOP. She would lose the chest leads. Which I'm sure would make her happy. She'd keep her chest port for ease of labs. They'd likely recommend braces for her feet... I have no idea why CHOP keeps taking them off honestly.
--- It's way more quiet. There are actual windows that look outside, to rather pleasant scenery. There are outside walkways to take her outside. She can also look outside directly from her bed.... and see sun, and trees, and grass, and snow in a few months. She can't even SEE her window from her bed right now. And if she could... she'd just see another building through tinted glass.
--- Parking is free! However... toll roads are the fastest. So might be a dollar for dollar trade. Good Shepherd, while far, is a potential option give the short term nature of this stay. We will be touring Dupont next week. That is MUCH closer... But if Good Shepherd is our only option, I don't think we'd be unhappy with it. They are very excited to have Julia. ...And honestly, that's huge. Do I really want to force her into Dupont if they don't want her? Good Shepherd got her medical info, and instead of thinking "Oh, she sucks at PT while on chemo, she's not good enough", they saw that she was on palliative care just 8 months ago, and is now looking at rehab! They see nothing but potential. If it were right down the street it would be a no-brainer. Lots to think about. Oh, and... neither here nor there. But I asked what they saw in her records that were sent over, like, did they know her story? And she mentioned she saw notes that she was in palliative care in January, looking at end of life, and the halo was removed in an "emergent situation". That's news to me... I'm very curious as to what that means. I did find it odd that they took her halo off early, but we weren't told there was anything unusual behind it, other than her fusion looked good. I personally found it suspicious that just a few days later we were told she was dying. My personal assumption at the time (and still now) was they already suspected things were going south, quickly, and they didn't want her to die with a halo bolted to her head. So they removed it ahead of schedule - just a few days before giving us the bad news. But that is possibly total conspiracy on my part. I did find the timing odd, and now I find the note odd. But I guess in the long run it doesn't mean anything. ~~~~ Pic: Julia and her beautiful "new" green princess blanket and pillow case! I say new because it's new to her, but I'm pretty sure this was mailed quite some time ago! I found it buried in my trunk. Sorry! She has it now <3 <3 And video of her being adorable last night <3 In comments.
YouTube: https://youtu.be/fUCU44Alhuo .
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. ********** ~~ Julia Adams ~~ *********** ************ Official Links ************** **************************************
Julia's official pages: Website: juliaadamscancerfund.org Facebook: Julia's Fight Against Rare Cancer - Fund GoFundMe: gofundme.com/juliasfightagainstcancer
Julia's official fundraisers: T-shirts: https://bit.ly/2MQc0lF | https://tinyurl.com/y55lh988 Children's Book: https://amzn.to/2CTTN2S Jewelry: https://etsy.me/2E1mR8i
Tumbler: https://tinyurl.com/yy6oamph
Car Magnet: https://tinyurl.com/y4nxr3lr
Where I buy Julia's CBD Oil (CBD BioCare 3500mg bottle): www.naturallywellforlife.com || Coupon code: danaboyd
Chordoma Foundation: www.chordoma.org
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
