Charlene was not a happy camper with me this morning. My post last night definitely could have come across as suggesting she sent me a pitiful picture of Gabriel waiting at the door as sort of a cruel "where are you" sort of thing. That's not the case at all. I was expected to go over all day, so it was more of a happy "he's waiting for you mommy". It just made me feel bad after the fact, when I didn't go. She had fallen asleep before my update, but said if she had seen it at midnight, she would have woken Gabriel up, stuffed his tired butt in the car, and driven him over to see me. So, nothing malicious there. And to be fair, Gabriel stands at the door waiting for all kinds of random people. ~~~~ Julia's had a fine day. No emergencies. I think that's the new standard we're trying to hit. They stopped the Epinephrine around 9am as a test to see how her blood pressure would hold. So far so good... it's been 80s/40s all day. Of course we'll all kind of wary, because nothing has changed (that we know of) that would allow her blood pressure to all of a sudden be stable. But of course we're super happy the Epi has stopped, at least temporarily. Everyone agrees her stomach is softer. It's still big and plump, but not harder like it was a few days ago. It's a bit veiny today, but that might be from the Epinephrine. Also her abdominal drain had some leakage and started getting some blisters, so they made a super fancy dressing that keeps the pressure off, and already it's looking much better. And her bed sore head wound is also healing nicely. I guess the wound care team came in and scraped it? They take off some of the scab / dead cells to promote healing (gross), but they are happy with the progress. She still has her thousand-yard-stare, but she can find people, and we got a few 'dada' mouth movements. She found Peppa several times with no problem. We've not seen a twitch of movement out of any limb in quite some time - maybe over a month, I'd have to check my post history, but at least several weeks. So I guess we're just seeing if her BP continues to hold without medicine. But today was certainly an OK day for her. (That's all for her medical update.) ~~~~ I've learned from this long process that any time there is a 'downer' post, like last night, the mentions of hospice and palliative care come up. It's almost like when people (think they) see me doubting, they can finally let their true feelings out. I'm not doubting our decision, or Reed's and my ability to handle it. I'm not doubting Julia's will to live. I AM doubting her body's ability to do it. And medicine's options for chordoma. And 'miracle cures' and their success stories. But I'm not doubting that a miracle is possible, or that given the right combination, chordoma can shrink. And everyone who has been here for a year watched it happen in real time. From a deadly brain stem cancer, coma, paralyzed, unresponsive, 'no hope', machines-keeping-her-alive, 'just give up and let her die' state. Much like where we are now. I know lots (not all) of these suggestions come from a good place, so I just wanted to talk about palliative care a bit. Julia's entire team knows how bad her situation is. Back in October the cancer was found to have returned with a vengeance... those are the kinds of meetings in a big room, with 15 different people, doctors you've not yet met and social workers waiting for the parents to freak out, and the oncologist with her hands on folded up pieces of paper. "Do you want to see the scans?' She always ask. And the answer is always the same. No. We don't. We trust when they tell us things are bad, and that the cancer is everywhere. Seeing it with our own eyes isn't going to make it more real. At this meeting back in October, palliative care was recommended. Since then, our room gets enough visits from social workers, psychologists, child life specialists, and chaplains to drive Reed crazy. Well, he particularly likes the chaplains... but you know things are bad when they start "just stopping in to say hi" more often. Julia's primary doctor, who handles the final decisions on all her care, is on the PACT team. PACT is CHOP's palliative care. It stands for Pediatric Advanced Care Team. I think it's a nice way of putting 'palliative care', just like they call hospice 'comfort care'. Whatever makes parents feel better about their sick kids, I guess. This consulting team does all kinds of non-dying, useful things: communication between family and doctors, decision making, improving both family and child's quality of life, improving management of uncomfortable symptoms, providing emotional, social, spiritual and bereavement support, educating, conducting research, etc. Since Julia's doctor is on this team, by default, their services are close by. They've asked several times if we want to "make it official" but we do not. It's not the sort of support that Reed and I find useful. I'm pretty sure I referred to the PACT team as "death eaters" at some point in my posts last spring. Our feelings haven't changed. When her primary used to visit, I'd ask her what team she's part of today: 'making her better', or 'keeping her comfortable'. Because shoot her up with Fentanyl and get to the 'making her better' part. And I don't want that to be misconstrued. These professionals on the PACT team are amazing at what they do. They are knowledgeable, and caring, and compassionate, and sympathetic. And they want to 'be there for you', and 'be an ear to listen', and 'just sit in silence'. Which is great... I think... for another family. Not us. My therapy has become this blog. I have all of you to listen. You easily give as much emotional and practical support as a therapist, and you don't charge me $120 an hour. When things pan out however they will, and my deep-rooted issues are above your pay grade, I will consult a professional. But I'm not interested in busting open that dam while my focus is still on a (living) Julia. And Reed is... different. I've not officially talked about his differences in my posts. But he doesn't need emotional support like the majority of people. All of the discomforts that come from hospital living, that would drive any other person crazy, don't affect him. The psychologist mostly just seems confused when they speak. His world is black and white. Right now, his answer is 'yes' to all life saving treatments and procedures, and that's that, in his mind, and there's nothing more to discuss. Gabriel is too young to know what's going on with his sister. She went into the hospital when he was 11 months old. This is all he knows. "Talk to daddy?" "Daddy's not here." "Daddy at hospital, with Julia. Talk to Julia". That is his life. Julia is at the hospital. With daddy. So the services PACT offers are great, but just not what we need right now. I have no problem communicating with her team; I speak my mind and make my desires known. Julia's quality of life is as good as it can be. Her uncomfortable symptoms are being managed. We don't need additional support, emotional, social, spiritual, bereavement, or otherwise. And the sum of education I can get (and seek) online for chordoma, treatments, and alternative, is more than one individual at the hospital can give me. So that is why we have not 'officially' switched to PACT. It wouldn't give us anything other than more visits to the room which would drive Reed up the wall. That's why I don't mention palliative care in my posts. The hospital has offered at appropriate times, but they know we are generally not interested. And we certainly aren't interested in hospice. Been there, done that. ~~~~ As always, suggestions are totally fine. I know people are new and I certainly don't expect anyone to go back and read my 450-some posts. I know suggestions come from a good place. I know showing up now, seeing a very sick little girl, seeing parents still fighting, can often look like we're in denial (we're not). But either way, I don't mind the suggestions. However, I did tell my sister she can come in with the ban-hammer if people talk about suffering. Which came up quite a bit last night. No one at this hospital - professionals, in all disciplines, who do this for a living, and are far more educated in this field than anyone reading here - thinks she's in pain. Neither Reed nor I, who know her better than anyone, think she's in pain. She HAS been in pain, but she's not 'in pain' daily. So if by just the photos, pictures, and descriptions I choose to share, you with your deep understanding of the situation decide she's suffering, just keep it to yourself. And consider this your (apparently not common sense) memo that this is never an appropriate "just saying" comment to leave on a page like this. ~~~~ Video in comments. I found the celebratory '8 months past days to live' video, showing her progress coming out of coma. I thought that would be relevant tonight especially since so many new people have started to follow (hi). The first several clips show her in coma, paralyzed, unresponsive, not even able to move her fingers. And you can see over February and March of last year, Julia, with the right combo of long-shot drugs, fought her way out of coma and to the happy-smiley-Peppa fan we got to watch all summer. It's happened before, maybe it will happen again. Also included a video of Gabriel coming to see mommy today <3 <3 YouTube: https://youtu.be/6g8kyABrC6c . . .
*********** ~~ Julia Adams ~~ *********** ************* Official Links ************** ***************************************
Julia's official pages:
Facebook: Julia's Fight Against Rare Cancer - Fund
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