January 31, 2020
Mostly stable day. No emergencies. We're definitely not in a great place, but she's holding steady. I'm posting early because Reed said he "might enjoy" nachos from Chilis (super random). He pretty much never even thinks about wanting anything... ever... so if he wants Chilis, we're going to Chilis! So I wanted to get this posted before we leave <3 (The last time he said he could go for something was a burger from Outback... we drove separately, and when we got back to the hospital, he had a Burger King bag. I guess the entire meal wasn't enough and he bought himself (several) Whoppers. So when he wants to eat, we need to feed him!) . I talked with one of her doctors again. I started with "I have another list of Facebook questions..." Part of me wonders if they groan when the nurse pages them and says "Julia's mom is here and wants to talk to someone" (lol). But whatever. They're all great, and at least not outwardly annoyed. Here are the highlights: --- The really don't think the rash is infection related at all. He agrees a random pocket of hard-to-detect, hard-to-treat yeast hiding under the skin can't be 100% ruled out, but with her non-response to many meds and the look of the rash, they really don't think that's what's going on. Also, the redness continues to get worse, but her vitals (which would be affected with overwhelming infection) are seemingly unchanged. --- They don't want to do a skin biopsy because they don't believe the benefits outweigh the risks, and that's the game we play with every test now. They've already treated everything 'treatable' that this redness could realistically be. And at this point, a biopsy would create another wound and infection source while providing limited actionable information. --- The team's best guess right now with her red stomach is skin breakdown. The swelling, fluid issues, "poor" nutrition, compromised healing, immobility, certain meds, etc., can all lead to the skin just having a harder time healing and recovering. They will stop the hydrocortisone cream (since it's not doing anything) and said we are free to try one of these miracle 'fixes everything' oils on our own. I'm skeptical, but it own't hurt to rub some fancy oil on her belly, so why not. --- No one (PICU doctor, oncologist, neuro-onc primary) can get behind probiotics right now. They use them regularly in other patients, and are in agreement with their benefits. But they are too risky for Julia right now. With her immune-compromised status and leaky gut, probiotics would be putting bacteria who-knows-where in her system and she might not be able to fight it off. --- I asked what the teams biggest concern is and he said her fluid balance. He described it as a daily struggle that forces them to re-evaluate her baseline several times throughout the day. She pees less, so they drain more, then her BP drops, so they give her fluid, then she starts leaking, so they drain more, then BP drops, then fluid doesn't work, then meds are required, then other meds need to be stopped... etc. (Since I started writing this update, the doctor has been in two other times to make adjustments.) --- They have stopped her feeds indefinitely. They would like to try again every few days and see what happens, but for now, they are stopped. She is getting IV nutrition as a replacement. When they do attempt to run her feeds, they come out through either her mouth or g-tube (as this dark green-colored discharge). First assumption is a blockage, but x-rays show no blockage (and she still poops, so it's not a full obstruction). So we're back at risks vs benefits. They COULD put her through more invasive studies, which would possibly find a blockage, which would require surgery... but it's just not worth it. It wouldn't fix the major problem (out of control cancer). And right now, they can band-aid it with IV nutrition. But the current theory is her gut is just slowing down. --- Her urine output continues to lessen. But some of her markers suggest slight dehydration (because again, super delicate fluid balance), so they upped/adjusted some fluids and will see what happens. After the initial abdominal drain she went back up to 15ml per hour, which is great. This week it's been closer to 5ml per hour. Today it's 1-3ml per hour. So... not fantastic. They will not do more Lasix with her delicate blood pressure, so they're trying to find what her injured kidneys like the most. --- The bed sore on the back of her head looks... I guess 'fine'. I mean, I think it looks horrible, but I've also never seen a bed sore. They agree it's not healing very quickly, but it doesn't look concerning (not infected). It's just hard to keep the pressure off it, and her body is fighting a lot of things. So they are doing everything they can to promote healing, but apparently bed sores can take months to heal. . A lot of these decisions is where 'comfort care' comes in, which many people ask if we're doing. We are. Like, if the team's one-and-only purpose in life is finding out why her stomach is red, they could run all kinds of tests, do biopsies, exploratory surgery, and different med combos... but we're not doing any of that. We are not opting for surgery to find out why her bowels have slowed down. We don't want to keep BP up 'at all costs' and risk serious damage to her limbs due to pressors. Etc. The doctor confirmed that the team's understanding of our treatment wishes are to keep her stable and comfortable while we give the chemo a chance to work. Because if the chemo doesn't shrink the cancer, her red stomach and slow bowels (and the treatment for) don't matter at all. So they have to decide whether a procedure or medicine will possibly give us some answers in one mostly-unimportant area, at the risk of overall decline. Other than that, vitals have been decent today. Small dip in BP earlier (65/40) but responded to fluids. Rest of vitals and vent settings remain unchanged. Cold foot again today. She's had the same level of responsiveness. ~~~~ Charlene showed Gabriel the dancing videos yesterday, and he yelled out "Julia's dancing!" That was super adorable <3 <3 He wasn't even 1 when she came into the hospital and lost all her hair. Like... she doesn't look the same at all, and he was too young to remember her from then (I think). But Gabriel sure knows his sister <3 (Then he said "Julia at hospital. Go get Julia. Pick up Julia") <3 Aunt Charlene and Gabriel tried to surprise me this morning, but I was in the shower and didn't hear them. Little guy was out there calling for mommy and bangin on the door. (I was pretty sure they had a key). So he got back in the car VERY upset that he didn't get to see me. I called her a few minutes later and she brought him back <3 So I got a surprise visit with Gabriel before coming to see Julia. He pulled out all "Julia's Peppa"... again... and stacked them on me. Then harassed Ashes. Then he helped himself to my candy bowl on the counter. I caved and bought Peppermint Patties for the first time in over a year. Peppermint Patties or "minty" was Julia's favorite treat (Reed's too). Reed still has an unopened bag here at the hospital waiting for Julia to be able to have one again. But they were in cute Valentines day wrappers, so I got a pack to add to my candy bowl. Gabriel is obsessed. Just like his sister <3 Video in comments.
YouTube: https://youtu.be/R_pjHP0RNM4 . . .
*********** ~~ Julia Adams ~~ *********** ************* Official Links ************** ***************************************
Julia's official pages:
Facebook: Julia's Fight Against Rare Cancer - Fund
Julia's official fundraisers: T-shirts: https://bit.ly/2MQc0lF | https://bit.ly/35ppbSx Jewelry: https://etsy.me/2E1mR8i 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 2018. You can find them all on my Facebook page or Julia's website <3