(Sorry, just noticed this was sitting in drafts!)
New Year's Day. Longest post yet! Julia has been sleeping, as expected, but even a little more. We haven't really seen her open her eye since early this morning. She has wiggled a bit, and moved her mouth, but she hasn't woken up all day. Last night her heart rate climbed to the 180s, which in the past has been a sign of dehydration, so they gave her some IV fluids. But then she started having trouble with oxygen saturation, eventually requiring 40% oxygen support. Because of her difficulty breathing, they did another x-ray and found a large accumulation of fluid around her left lung (previous unaffected lung). I guess, due to that being her only real good lung, and the breathing difficulty it was causing, the plan was another chest tube in that side, today. But a few hours later when they used the ultrasound to help guide the procedure, they saw that the fluid was a lot less, suggesting her body did eventually start absorbing it. Right now her vitals are all decent, with just her ET staying around 50. That's all for her medical update today. I do have a video, but upload isn't working from the hospital. I'll upload it from home - it will be later. .
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~~~~ (Not medically important stuff) ~~~~ I've had more "spare time" lately, since I haven't been working much and now Julia is just sleeping. So while I've been sitting here, I decided to type out some random thoughts. We are likely approaching the end of this Julia blog, and I wanted to share some insight, of things I've found helpful and not helpful, to hopefully allow you guys to better support another family in the future. Some of these thoughts apply to having a sick kid, others apply more to having an online blog like this while having a sick kid. . When Julia was first diagnosed, word spread fast in the 'cancer mom' community. I had never known a child with cancer - I had never known anyone with cancer until my dad - but all of a sudden everyone knew about me. They messaged with all kinds of helpful, loving, encouraging messages. It was overwhelming, with everything else, but also great. However, with all these messages of support came a common warning: people will forget. "They" won't forget, these other cancer moms. They've been there; they know. But everyone else will forget. The shock of the horrible news will fade, and all my friends and family will get back to their daily lives of work, and school, and family outings, and they will forget that my child is fighting cancer. The weeks and months will pass, and the support will slowly go away, until people stop asking about Julia completely. They will get exhausted with always hearing about how sick she is. They will feel awkward about not calling me, and then will stop calling me altogether because they won't know how to make it un-awkward. I will eventually feel like I'm fighting this battle alone. That no one cares. That it's easier to pretend Julia doesn't exist, because it's too difficult a conversation, and the battle can last years. But when everyone else goes away, these moms and dads who have been there before, some with living children some without, will be there. That's one reason I started updating every day. These messages scared me. I didn't want anyone to forget Julia was fighting cancer. I often think about how loved she is, but then I remember that... every year 15,000+ children under 19 are diagnosed in with cancer in the US; which is about 1 in 285 children. More than 300,000 children are diagnosed with cancer worldwide every year. So statistically, a family is given this awful diagnosis every 3 minutes. How many of these families are fighting alone because others have forgotten? Or worse, how many of these kids are actually fighting alone because they have no family able or willing to visit? I try not to make assumptions, but living this hospital life for over a year, I know what kids' rooms will always be empty when I walk by. . So with that, I've been putting down some thoughts on what, over the past year, I have found helpful and definitely not helpful, so maybe you can better support another family in the future. . The best thing you can do is be there. And stay there. After it's draining and awkward. Maybe not physically "there" (some people might like that, but I personally find it overwhelming), but "there" in thought. You liking my posts, commenting, messaging, sharing, offering help, etc. I know it sometimes doesn't feel like you're doing anything, but you are... you're not forgetting. You can't cure Julia's cancer, but making it clear you care that she's sick, and that it makes you sad that she's going through this, does lift the burden of supporting her. It certainly IS doing something. And I really appreciate the people who have specifically said they will be here through the bad, until the end, if that's our future. I know we all thought we were witnessing a miracle this past year, and it does make me sad to post about her decline rather than her newest achievement. I can't help but feel like she's let people down. And, watching a child die to cancer might be one of the hardest things anyone can do, so everyone who is still here with her is amazing. I certainly appreciate the easiest thing to do right now would be to peace out. . Speaking of 'liking' posts, I personally like seeing the heart emoji reaction (or thumbs up) way more than the sad face. Yes, this entire situation is extremely sad, but there is a feeling of depression, rather than support, that comes with seeing the sad face. I just imagine all of you, with your emoji-of-choice attached to your face, visiting her in the hospital. People who 'like' and 'heart', would show up and smile at her, and tell her how amazing she is, and complement her pretty new hair, and be mom-excited that she peed a little on her own. You'd read her books, paint her nails, and play with her Peppa toys. While I imagine people who do the 'sad face' would walk in her room crying, and stand beside her bed already mourning even though she's still here fighting. You'd be so overcome with grief that you wouldn't tell her how great of a job she's doing, because you're just too sad at how sad this situation is. Being an extrovert, I feed off of other people. And seeing a bunch of sad faces when I give an update on Julia can really bum me out. Even on her best days over the summer, with her biggest accomplishments, there were tons of sad faces. In my opinion 'hearting' something like this does not mean you love the situation, but rather that you love Julia. So consider that option in the future. . And to speak of the more practical help, I appreciate people who just "do stuff". This has been going on for so long, that I'm mentally exhausted. In my normal life, I'm a grade-A planner. I love planning and could throw you a wedding tomorrow. But right now, I don't ask people for anything because I can't think far enough ahead to know what I might need tomorrow. So a person who sees something that needs to be done, and does it (and continues to do it), because they can, are amazingly helpful. . Participate in fundraisers. The t-shirts, and bracelets, and ornaments; all the things family and friends put together to raise funds. The money is important (sometimes very important), but again, it's about the support. It's about being involved, and not forgetting. We've done several fundraisers over the past year, and the best part was hearing time and again that they've "never seen such an outpouring of support". If a t-shirt goes online and 100 people buy it, that tells me 100 people want to wear a t-shirt with Julia on it! And it was soooo amazing seeing people get "Julia swag" as Christmas gifts this year. People love her enough, and talk about her enough, that their family members ordered Julia shirts as gifts. The $9 we get from that t-shirt sale adds up, but it makes me so happy to know Julia has become such a part of your family. (We are personally doing OK right now financially, thank you so much for your support over the past year <3 Please continue to help other families if you're able.)
. Speaking of gifts, all of the gifts are also very nice, not because getting presents is fun, but because it means people care enough to do more than like a post. You found something you thought Julia would like, or made something, and spent time time to package it, and spent the money to send it. Everything from cards that three year old's have scribbled on, to way expensive gifts. They've all been awesome. Speaking of gifts, I received a gift many months ago, and was told that they preferred me not to say anything on Facebook. So I haven't, and I still won't (and no I won't tell you if you message me!). I don't even know who sent it because they wanted to stay anonymous, but I wanted to take this opportunity to say thank you. It is amazing and perfect, and over-generous. All I know is you're from Texas. But, a difficult part of receiving gifts is not having the mental capacity to be as gracious and responsive as is customary and expected. Most people at least would like a thank you for gifts, many would love to see them in a picture with Julia. And if I were to receive one thing a month, that would be easier to do. But sometimes... the amount coming in my door has been pretty overwhelming. My coworkers can attest to that. Especially when that Warrior Julia drawing went out last January. I had stacks of mail over my head. I could build a fort at my desk. Even the mailman eventually asked what was going on. (I still have every drawing by the way - haven't decided what to do.) The same outpouring of support has happened around holidays and when there is big news, either good or bad. I hate to admit it... but I have no idea what 'you' sent. And it makes me feel ungrateful for even saying it. But I get messages like "did you receive my gift last week?" And I'm wracking my brain trying to figure out what may have arrived last week. I certainly don't remember the name on the package. So if you do choose to send gifts to a family in this situation, do so knowing you might not get much in return. They are likely very overwhelmed and forgetful, but that doesn't mean it's not appreciated. The same goes with messages. I get a LOT of messages. I try to read them all, but sometimes all I have time to do is a quick emoji response. And I feel bad when people send me a big long story, and all I do is the heart-eye emoji and move on (I do read it though). That's not how I'd normally be, there are just so many, especially when things are bad. . Oh, and speaking of messages, I guess we'll get to some not helpful things. (And please don't take most of this personally, even if you are 'guilty' of doing these things, that's not my intention.) First, in regard to the content of messages. There is a happy medium, and a large gray area, between "She's definitely dying soon" and "Don't worry, Jesus will heal her". One is heartless and unnecessary, the other feels like it's trivializing a very real situation. Pick something in the middle. . It's also not helpful to receive messages such as, "Just letting you know, my X just died to cancer". I imagine this is an attempt to relate in some way, but... this is very difficult for someone in my position to read day after day after day. Which I do. It's often nothing else, no helpful or encouraging message, just an FYI. And every FYI like this is a huge punch in my gut. I'm being reminded over and over again that people don't beat this disease. And it's a million times worse if it's a kid. If it's a kid who has a following, my inbox is filled with a thousand messages of "just letting you know". My advice, if you feel compelled to share this in attempts of relating, is to also add something that is either encouraging or helpful. And if you can't do that in your current state, which is totally fine, maybe resist the urge to share. I just can't carry your burden right now in addition to my own. . Oh, and speaking of that. What is absolutely, 100%, NOT helpful, is telling me how painful losing a loved one, especially a child, to cancer is. I've received so many comments and messages about people who have lost dads, who say things like how they are "just as sad now" and it's been 30 years. Or their child died last year and the pain is so bad they don't want to go on living. Or that their parents lost a child 20 years ago and they've never seen them happy since. I can't even describe how depressing these statements are. My dad did die a year ago, and Julia is likely headed that way. It's been awful and it will be even more awful. But please, I don't want to hear that these are unrecoverable losses. No one wants to hear that. I already find myself Googling articles about "is there happiness after the death of a child". I don't need to be told that's reality. I don't want to be told I will be missing my dad just as much in 30 years. I don't want to be told I will think about driving my car into a tree every day after Julia dies. If this is all you can offer, please just don't. Not to a family in my position. Don't trivialize impending losses with "everything will be OK", but perhaps this is just a subject better not discussed without having personal, encouraging experience. . Sharing alternative treatments and links to suggestions is a mixed bag. I have received some amazingly helpful, well thought-out, well researched suggestions. But it's not helpful to just get messaged a link with absolutely nothing else. Like, I don't even know if it's safe to click. That's how malware is spread. But I've actually gotten messages saying, "I didn't read this, but, thought of you..." with a link to some miracle cancer cure. And of course, I have to read it, because I can't leave any stone unturned. So I end up spending 15 minutes of my life reading an article that has absolutely nothing to do with anything, and the 'miracle cure' is something that might possibly maybe be in the works a decade from now. My point is, if you want to be helpful, be helpful. Take a few minutes and read the article before sending it. . Also in the not helpful category, I get some amazingly inappropriate and heartless comments and messages. Some people are cruel to be cruel (and there's not much to be done about those people), but others just don't think. And when you're dealing with the family of a dying child... now is not the time to 'not think'. For example, my focus is "Julia has cancer"; the entire point of this Faceook page has been "Julia has cancer"; so if you share something on my page, I am going to (rightfully so) directly relate it to "Julia has cancer". Then I ask myself: Why did this person say this? What's their point? Like the person who recently shared an article about nail polish causing cancer on the post where I painted Julia's nails. What was the point? Because when asked, they swore they weren't suggesting anything. I'm more baffled than anything in that situation. Like... why? I've also received messages of "Isn't it time to end her suffering?" Like they want me to slip cyanide into her IV or something. Like, even if I agree, what am I going to do about it? And when engaged, they backpedal and swear they "didn't mean anything" and they are "praying for my family" and "I took it the wrong way". Take 30 seconds and think about what you're typing before you type it. If you aren't totally sure it's an appropriate thing to share on the page of a terminal child, then just don't. . On that related note, I personally prefer to call people out for the stupid things they say, and I really appreciate it when you do as well. As the owner of this page, I can absolutely delete comments and block users. I have a handful of times, but I do so sparingly. On purpose. Sometimes people need to be told they are being extremely inappropriate, and then hopefully they will refrain from posting a similar comment on someone else's page in the future. Some of you can get a little harsh, and we could probably tone it down a bit, but attempting to keep the initial negative comments off a page like this is appreciated. . Oh, and back to a helpful, it's super helpful when you are able to answer questions in the comments. Julia gets new followers every day, and I don't expect anyone to go back and read all her updates, though I understand some people do. So when they ask a question that has been asked a million times, I really appreciate when someone else answers them, with patience (because they are likely new). Other than it just being helpful that I don't need to repeat her birthday for the 5,000th time, it reminds me that you guys know enough about her that you KNOW her birthday. So it's both helpful in a practical sense, and supportive emotionally. . And as a final thought, I understand this situation is very depressing and can be extremely awkward. I know that some people "just can't". And that's OK. Some people have hurts too deep of their own to support someone else. Some people just have no idea what to say and back away. Some people haven't reached out in so long that they are now kind of embarrassed to. I want to say, for me personally, "we're good". A friend of mine since we were teenagers messaged the other day and just apologized for not being involved lately, and said she feels bad and wants to go out to dinner. That was awesome. No hard feelings at all. She doesn't have kids and can't possibly relate to what I'm going through. But it was really nice to hear from her. I had a huge online gaming community that's been a major part of my life for over a decade, and obviously gaming is not something I've had time for lately. So I never talk to them anymore. I'm 90% certain they're all aware of what's going on, but I don't know for sure. I have no idea how many of them are on Facebook. I hopped in one of the games for a few minutes several weeks ago, and got messages saying they are thinking about me and were happy to see me again. That was awesome. I'm sure it was awkward for some of them to message me, since we went from 'hanging out' nearly every day to not talking at all, with this hugely depressing event between us, so it was really nice. My point is, no one is prepared to handle something like this, or support someone going though something like this. I don't expect you to be an expert. If I wanted professional support, I'd pay for a therapist. I am OK with everything my friends have done, even if it's been to back away. When things settle down, come back. . In conclusion... (Reed has been patiently sitting next to me waiting for me to be done so he can play Civilization, and I keep saying "30 more minutes". He has unlimited patience). Anyway, you being involved is enough. Or showing up later after being unable to be involved. That's OK too. You "just being another number" in Julia's following is enough. You might have upped the official count by just one, but between all of you, there are more than 130,000 people watching Julia's story. That's huge. And the support is felt. Do the same for another family. Be involved if you can, in whatever way you can. Nice things are very much appreciated, even if they aren't acknowledged. Don't say stupid and inconsiderate things, and help protect the family from people who say stupid and inconsiderate things. But most importantly, don't forget. The child might be in for a short fight, or a very long, exhausting fight. If you're able to, stay involved the whole time. OK, Reed can play his game now. Video will be up later tonight. . . .
*********** ~~ 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 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
