F*** You, Cancer! Catch all

I am so sorry to hear that. No child should ever have to go through that [email protected]

So sorry to hear.

WizardM0de, so heartbreaking, sorry your son has to fight this. My thoughts are with you and yours.

My heart breaks for you and your family.

Wizard my heart breaks for you and your family.

Devastated for you guys. F*ck cancer. F*ck it all the way back to hell.

Oh man. I'm so sorry to hear that. I'm sending all the good thoughts and wishes to you and yours. And if there's anything actual I can do, please don't hesitate to ask.

My mom just found out the node my mom's doctor wanted to check, but the others didn't want to, with a biopsy, is metastatic. If he didn't get his way, they would have treated everything else, but this little son of a bitch would have still been there doing its thing. I passing she said "stage 3," but her doctor is cautiously optimistic. So here's hoping.

So, an update which will be a wall of text, then an ask for your advice:

We almost lost him again, but my son is still here. He's been in the hospital for over a month now on this latest stint. The gameplan going in? As usual, get him back into remission (for a 5th time), and since the transplant was no bueno on its own, re-try KAR-T with the donor's new immune system/T-cells since his own (prior to transplant) were such crap and petered out in the lab. Sounds simple enough, right?

Hah.

Variables this time around:

-New bone marrow transplant still in the process of being eased into service with immuno-suppresants to prevent graft-vs-host disease

-Leukemia came rushing back. Started out barely detectable in his marrow and in a matter of days was over 70% of the cells in his peripheral bloodstream.

-Immuno-suppresants had to be immediately halted so his new immune system could fully participate in the dance-off (TO ARMS, TO ARMS!) with the rapid onset of leukemia while they torpedoed him with heavy-dose chemo.

-The chemo did its thing, wiped all his cells out, but the halting of the "easy there, pardner" immuno-suppresants caused ACUTE graft-vs-host disease in his entire body, which essentially means this rad new immune system started devouring his brain and other organs instead of just bad cells.

-Yes, this flavor of acute GVHD is usually fatal, we've spoken to several families who lost their own to this precise situation.

-But my son being my son, I guess he just doesn't go down that easily. The immune response was so strong that his brain essentially took its consciousness offline so it could attend to basic physiological function and buy the treatments time without stress response getting in the way.

-So my son went away and was replaced by a snarling, furious, scared, and completely confused childwolf who didn't know who he was, where he was, who we were, why he had all this stuff going in his body, what was happening, etc.).

-When you're depending on the patient telling you what ails you so you know what to treat in such a situation, and all the patient can do is cry, attempt to punch you in the face, and scream for his Mommy (who's right there, he just doesn't know it), responding in the moment to these rapidly evolving issues becomes problematic. This lasted over a week and we all had to troubleshoot on his behalf based on our circumstantial evidence and their scans and tests.

-He finally came around as the leukemia was killed off and anti-inflammatories, drugs to reduce brain fluid/swelling, etc. went to work. They wanted a brain shunt, we said no. It was a huge risk that paid off. It could've easily gone the other way.

Where we are now: familiar territory, though with new variables of course. His counts need to come back so he can leave the hospital and they can extract millions of T-cells to be reprogrammed as super solders (again, but remember: new recruits). But his counts just. aren't. coming. back. Why?

Each day is a new guess. We've gone through theories bleeding around his g-tube site in his gut (multiple procedures to scope and remove clots down in there), to viruses that got treated, to certain medications being too count suppressant in combination with each other to other things. Right now the theory is parvovirus is being burdensome again (yep, that good ol' slap cheek disease that most kids get and they're done in 3 days...he got it after he was diagnosed 5 years ago...it's still there), so we're back on heavy IVIG treatments this week to see if it does the trick.

Here's where you come in:

Imagine for a moment you've been living this hell since you were 4. It's all you know, and the entire time you've been good natured enough to not have a reason to feel defeated. There's always been a plan, always progress. Yeah, a step or two back here and there, but always within your mental parameters of being able to "keep your sh*t together," mentally speaking (literally speaking each day is a fiasco in that department), and your parents have remained hopeful and confident throughout, so you go with it, feeding off their energy.

Now you're almost 10, a month into yet another hospital stay - and you've had at least half a dozen long stays - after you just got done with the "Final Answer" of a months-long transplant process to the point of various hospital and family celebrations. You felt liberated, and now you're right back there.

Your go-to board games, Fortnite/Overwatch/whatever video games you love, your favorite candy and snacks (when you can eat them), cuddling with mom, your favorite jams on the JBL boombox in the room, all the movies on Netflix and Disney plus you can watch, care packages galore, your favorite Youtube streamer bros, FaceTime with friends and family, any fun activity from any fantastic child therapist you could imagine....well, you've reached a point of diminishing returns on all of it after such a long battle. All you want, all you need, is to get out and go home.

But you can't. That's not up to you. It's up to your body responding to what the doctors can do. You have zero control over it, and every day they round on you, they have more bad news and questions than answers for you. The only tool you have is your lifelong carefree spirit, resilience, and your positive outlook regarding the future.

Bad news, your carefree spirit and resilience are shells of what they used to be and your positive outlook regarding the future is a bulb that's dimming more and more by the day. Your guardians in the room are trying their best, but you can see they're struggling as well, and they're not able to give the exact energy you've been feeding off of this entire time.

So where do you turn? Is there anything you've come across in your life to help you relate to such a situation that you can fall back on for perspective, to identify with, be inspired by, find support in? Is there a book you read about resilience and positivity in the worst of times? A movie? Was there a purchase in your life that was life-changingly glorious or a hobby that totally gave you a drive and sense of purpose you never had before, now that you think about it? Anything out there that would slap your brain around some and not give you a choice but to chin up and have some fun, lose yourself, etc. (not associated with illegal substances)?

I'll do anything for this kid, and it's go big because you can't go home territory, but we're not going to add anti-depressants to the laundry list of things we're pumping into his body. I'm just out of ideas.

Fortunately I have not faced these issues, but I know those who have. I'll have to pick their brains to see what they think or what they have done.

Right now I can only offer positive thoughts for stable health and uninterrupted internet.. oh and unlimited cuddling from mom.

WizardM0de wrote:

I'll do anything for this kid, and it's go big because you can't go home territory, but we're not going to add anti-depressants to the laundry list of things we're pumping into his body. I'm just out of ideas.

Man, I wish I had some good ideas. That was a genuinely wrenching read, and my heart goes out to you, your son, and your family.

Holy f*ck I am sorry.

-So my son went away and was replaced by a snarling, furious, scared, and completely confused childwolf who didn't know who he was, where he was, who we were, why he had all this stuff going in his body, what was happening, etc.).

-When you're depending on the patient telling you what ails you so you know what to treat in such a situation, and all the patient can do is cry, attempt to punch you in the face, and scream for his Mommy (who's right there, he just doesn't know it), responding in the moment to these rapidly evolving issues becomes problematic. This lasted over a week and we all had to troubleshoot on his behalf based on our circumstantial evidence and their scans and tests.

Holy hell that's scary. That you are functioning at all at this point is a testament to your love for your child. Wow. I'm in awe of all of you.

Do I have a go-to? Not really. I'm one of those weirdos who finds comfort in the depressing. For instance, Viktor Frankl's Man's Search For Meaning is a favorite of mine. The first half of the book, which is the part I would recommend, is all about his experiences in the concentration camps and observations he made. The biggest take is it's shocking the strength folks have and that laughter can be found even in the grimmest of places.

Is it a good book for you? I have absolutely no idea if now is the time for it, for you, but it's entirely about persevering through the worst of times. (The second half of the book is about his brand of therapy, which can be skipped.) It's a powerful and moving book, nonetheless.

I'd also possibly suggest creating things. Writing, drawing, other crafts. Heck, needlepoint is something designed to help pass the time and keep you occupied. Music! Get a keyboard/guitar/etc. Whatever they'll allow in the hospital. Those sorts of things can help bring back some of the vibrancy to life that watching videos and playing games can't. There's just something about creating that is uniquely human. I'm sure the therapist and others have given you plenty of things to create, projects, crafts and such, so maybe this isn't entirely a great suggestion.

Regardless, nothing but love to you and yours, and hope for the future.

Edit: Oh, movies. I have a soft spot for What Dreams May Come. Cheesy and whatnot, also depressing and probably not meant for kids, but maybe good for yall. Dunno.

Thanks for the well-wishes and ideas, thanks for reaching out to friends MaxShrek.

Garion, Man's Search for Meaning is a favorite of mine, one that I've debated reading to him several times throughout this given the subject matter, but one that I always recommend to others in situations where attitude is all you have left. Given him now being 10 but mature well beyond his years and the uncertainty of what's to come, maybe it's just time to go for it. It's a great idea, and validating for me. I'll pick up another copy (I always give mine away).

Creating things is something different I've yet to consider at all outside of the craft activities they do with him. Music Therapy has been MIA since COVID hit, which was always great for him, so this is actually a really solid idea. I'll look into good lap-sized keyboards, perhaps even a drum machine/sequencer he can play around with. He has headphones, but bonus if it's bluetooth and can hook up to the JBL and double bonus if it can easily sync with a macbook for storage and uploading). Great thread to pull on there! If anyone's dabbled in this stuff more than me (which was decades ago), let me know.

WizardM0de wrote:

If anyone's dabbled in this stuff more than me (which was decades ago), let me know.

I may be able help in this area. I'd need to do a little research to get up to speed on what's entry level these days, but I know a lot about synths and audio production.

Damn, WizardM0de. Just reading that hurt. I can't even imagine what it's like to be living it. I'm truly sorry.

I sadly don't have any suggestions or recommendations for you and your son outside of leaning hard into whatever things he shows interest and excitement in, which you have clearly done.

The only other advice I have would be to make sure that you and your partner are also getting the help you need so you can be strong for your son.

Podunk wrote:
WizardM0de wrote:

If anyone's dabbled in this stuff more than me (which was decades ago), let me know.

I may be able help in this area. I'd need to do a little research to get up to speed on what's entry level these days, but I know a lot about synths and audio production.

Certainly don't want it to be a science project for you or anyone, but any recommendations or guidance you might have would be great. Don't need anything pro level but would be need to have an easy peasy sampler, sequencer, pads, whatever that could let him put something really cool together without too much of an on ramp.

OG_slinger wrote:

Damn, WizardM0de. Just reading that hurt. I can't even imagine what it's like to be living it. I'm truly sorry.

I sadly don't have any suggestions or recommendations for you and your son outside of leaning hard into whatever things he shows interest and excitement in, which you have clearly done.

The only other advice I have would be to make sure that you and your partner are also getting the help you need so you can be strong for your son.

Thank you. We have an incredible support network that is giving us all they've got, truly. We're lucky in that respect. That said, there are massive things going on inside both of us that we're afraid to even acknowledge while we're in the washout in hopes of keeping things on the rails for him and our other kids at home.

Now that it is what it is, where it is, and when it is, we're both having horrible nightmares most nights about our family that would make Stephen King shudder. We've both admitted we're going to need a lot of help down the road, come what may. Right now there are no outlets, world's spinning too fast - a dangerous place to be but we're surrounded by love and avoiding self-destruction thus far.

This doo hickey popped up in my ads recently, looks like a fun little music maker. https://artiphon.com/pages/orba-spin...

Sending good thoughts WizardM0de.

My wife's step-mother passed away today. Once she was diagnosed, she went downhill fast. From the sound of it, it was about as peaceful as you could hope for, I guess. Since my wife first met her, they've had a fairly contentious relationship, but over the past 5 years or so they've been able to really work past it and get along quite well.

They live over 200km away, and my wife is almost post-term pregnant, so we weren't able to say goodbye. We aren't able to see her father or go to the funeral, and the rest of their family are either dead or overseas. I guess being unable to mourn together is a pretty common thing in these Covid days.

All the best to you and yours, half.

Hopefully your wife gets some time with her dad. Hopefully the upcoming grandkid can fill some of the loss too.

I will also again plug grief counseling. We are not built to do this alone or experience this alone or not talk about it.

My mom didn't make it, she passed away a little while ago today. At least she's not in pain anymore.

Truly sorry for your loss Max.

Thanks. They were trying to get her oxygen levels under control before her cancer treatment, and her body just gave out.

Very sorry to hear Max. My thoughts are with you and your family.

My deepest condolences.

Sorry to hear about your Mom Max, we'll be thinking of your family as time and healing finally can kick in for you all.

My son's sort of in that place too, where they're scrambling around to answer for mysterious daily fevers and why his counts aren't coming back. It's nerve-wracking - you never know when the body has just had it with any part of all this, and there are many, many parts to all this.

The cancer's chilled out, because no cell counts good or bad, and we should've already done apherisis for the next KAR-T attempt, but we're stuck managing side effects/collateral damage/viruses and other things that happen when you're in a hospital for so long with no immune system. It's infuriating.

MaxShrek wrote:

My mom didn't make it, she passed away a little while ago today. At least she's not in pain anymore.

My deepest condolences on your loss.

So sorry, Max.

Im so sorry Max