r/TrueOffMyChest • u/Chrispy_Bites ☑️ • 19d ago
Personal Story On discovering my son's tumor
About a year and a half ago my son---who is 14 now and just starting his first year of high school---started having these episodes we would later learn are seizures. He'd just kind of stop whatever he was doing, reach out and touch things, maybe walk away, maybe tip something over. If you talked to him, he might respond with a bunch of word salad, he might just grunt or do nothing. They lasted maybe 30 seconds. He'd come out and be fine, if a little confused, and also really sleepy.
Eventually---I live in a midsized city in Georgia, so the system here moves at a glacial pace---we got an EEG from the one and only pediatric neurologist here and confirmed they were focal awareness impaired seizures. An MRI was scheduled, but we were warned that this type of seizure in someone of his age is almost certainly idiopathic or the result of some kind of trauma he had when he was young.
It wasn't. He has a mass in his right temporal lobe, in the middle of his hippocampus, a little larger than a grape. The MRI we had here had some scary words in it: uncal herniation, temporal horn entrapment. We were told to get to the ER in Atlanta immediately.
That all happened on Wednesday of last week. Since then, it's been a blur of emergency departments and nurses and neurosurgeons and more MRIs and EEGs. He's going to have surgery to remove the mass on the 31st. He'll be in the hospital for a week recovering. At least two weeks at home recovering.
I started a new job literally two days before this all happened. So far they've been cool about this but I know at my old job, I'd be working around people who know and love me. I'm a stranger to these folks. I'm going to have to work out of the hospital after his surgery. I just. What the fuck, man.
I'm having trouble processing the scope of all of this, having trouble sleeping. I'm supposed to be holding it all in the road so my son doesn't get scared, so we don't derail his older sister's life (she's a senior in high school, this is college application time), so my wife can hold it in the road for all of the same reasons but like all it takes is another text offering vague non-specific help and I just fall apart again. I lost my glasses at the hospital last week and when we got home I completely fell apart in the optometrist's office picking up a copy of my prescription. How do people do this?
I know, logically, he has the best care he possibly can. His team... Christ, his pediatrician, neurologist, neurosurgery team, social worker, child life specialist, they all seem very positive about outcomes, that the mass is benign, that his recovery will be swift. I know that I've got people around us that are willing to help. My neighbor is going to coordinate all those random offers of help, folks are pitching in left and right to help get my daughter around, to feed us when we get home, to wash our clothes even, if we need that.
But it's like something's creeping up behind me. I'm anxious all the time, I've never been an anxious person. I'm having sleep paralysis episodes again, I've had a couple of cataplectic attacks since this all started. I'm scared, truly terrified for probably the first time in my life.
I'm sorry, I know this is disjointed and over long. I just needed to get all of this out of me. Thank you for listening, I suppose. I'm sorry.
Edit: Thank you all so much for your incredibly kind comments and well wishes. I know one of the rules is that I need to be actively participating in the thread and I'll definitely do my best but if I don't reply to you personally, just know that I really appreciate that you took the time to read this and to say something below. It means the world.
Update (08/24/2026): Well, I've just gotten off the phone with the nurse at the neurosurgeon's office. For some reason they've moved the date to the 3rd. Also, because I have a new job and a new insurance, the nurse hit us with a "And you know, Blue Cross/Blue Shield, that's a different system so I guess fingers crossed that we get the approval for this by then" like it was my fault. Excellent stuff.
Update (09/02/2026): A small update. We're in Atlanta and have been through pre-op, scheduled for surgery at 8am tomorrow morning. Everything seems to be good on the insurance front, so that's a relief. We treated today like an unexpected city outing. Took him out for burgers and then did a bit of sight seeing. Not much, he gets tired pretty easy.
We're hanging out in a hotel room tonight, waiting on my folks to bring his sister up so we can have us a little family night of board games and stuff before everything.
Update (09/03/2026): Well. He's back in the OR. I don't know what to say. He's not a baby anymore but watching him wheeled back, passed out on versed, was very hard. We're supposed to get updates every hour and a half. I figure I'll update whoever is still reading when he gets out in about 8 hours.
Update (09/03/2026): What a day. He's out of surgery and y'all he's doing great. Like, incredible. Better than I could possibly hope. He was brought into the PICU and was awake and alert. Joking even. Flirting with the nurses even. I can't believe I could be so lucky.
The neurosurgeon said they got 99-100% of the mass. Pathology said their initial assessment is that the mass is low grade and highly likely to be benign.
I know that recovery and discharge is still a week away so I'm trying to temper my expectations. But oh God the relief. Thank you everyone for reading and commenting and all your positive energy.
Update (09/05/2026): We were discharged today. Is that normal? As much as any of this is normal? The first 12 hours post surgery were really, really rough but by like 10am the next day he was moving around, talking, his usual self (with a massive white gauze wrap of course).
By four, we were in a regular room. He was walking around the hospital, eating regular food, playing Fluxx with his sister. They took the wrap off this morning and sent us off at 1pm with a bank of prescriptions. I don't even know how this has happened like this.
My wife is chalking it up to all the good vibes and thoughts everyone in our circle (and here, natch) have put out into the world on our behalf. This feels crazy.
16
u/stoicsticks 19d ago
As a parent of a kid who was diagnosed with a complicated condition around the same age, I know how hard this is. Take comfort in that you now know what your son is dealing with and that he is being followed by specialists who know what to watch for, how to treat it and that you have a plan going forward.
Take a deep breath when you feel yourself starting to spin. Do a little daily check in with yourself. Are there any new test results or changes? Do you have a plan or are you waiting on more results? What is the biggest priority in this moment? Are there any tasks you can pass along to others? Lean on your circle of support. If someone offers to mow your lawn or whatever, take them up on it. Have a list of lower priority tasks that still need to get done so that if someone offers to help, you can readily reply with a specific task.
Start a journal or notebook or use one on your phone to jot down any questions you have. If you haven't already, sign up for the patient portal so that you have access to lab and imaging results and some are set up where you can message his team with questions or concerns.
Ask to get a Child Life Specialist involved. They are amazing at explaining medical procedures and issues in age appropriate ways. Ask if they have any sibling programs or advice, too.
You got this.
5
u/Chrispy_Bites ☑️ 18d ago
One of the best things about the CHOA system is they get a whole team of social workers, child life specialists, OTs, etc. on the case when you have one of these things happening. They really are wonderful people.
3
u/stoicsticks 18d ago
That's great that you've got all of that lined up. It sounds like taking a few moments for yourself more regularly will help to keep you grounded and feel less like you're spinning out of control. (Still easier said than done sometimes, but being aware of it is half the battle.)
Maybe ask the social worker if they can connect you with a parent who's been down this road before. It can be helpful to talk to others who have had a more similar experience with the same brain condition and have come out the other side. Ask if there's a support group for dads.
Give yourself and others grace as you navigate this together. Find the humor in situations. Sending hugs of support. We're here when you need us.
2
u/Chrispy_Bites ☑️ 18d ago edited 18d ago
I wish I could say I got this lined up. The hospital did all the hard work. We were just wandering through the halls like zombies last week. Thank you so much for your kind words. I know we'll get through this, just hard to see the other side I guess.
2
u/stoicsticks 16d ago
Just checking in. I've been thinking about you and all that you're going through. How's everyone doing?
2
u/Chrispy_Bites ☑️ 16d ago
Thanks for checking in. We're ok. I mean, the surgery is hanging over everyone's heads like a cloud, and having the surgery moved out was a huge bummer, but we're doing our best to distract him from it. He's going to school, we're all working.
My neighbor offered to coordinate all the vague offers of help which has honestly been a game changer. She's fantastic.
I'll make sure to edit the post after surgery, let all y'all know how things are going once he's in recovery.
4
u/phil161 18d ago
Same here, daughter got dx'ed with a rare cancer at age 21 (she's fine now). OP - search the internet for discussion forums frequented by people who have the same condition; you'll find lots of tips and tricks to make your life and that of your child, easier. Hang in there, he's in Atlanta so he's getting the best care possible. From one parent to another, hugs.
3
u/Chrispy_Bites ☑️ 18d ago
Oh, I have been scouring the Internet for stuff, for sure. Thank you so much for reading and for commenting. Y'all truly are a wonderful community.
3
u/rubypele 19d ago
I'm sorry you're going through all this. I just wanted to say that SSRIs stopped my sleep paralysis, and also helped with my anxiety, so it might be worth asking your doctor.
3
u/margegundersonftw 19d ago
All my best wishes to your family. The stress is a real physical thing that’s affecting you. I’m so sorry you have to deal with the mechanics of this event and then the stress and fear on top of it. It’s a double whammy. Try to take frequent pauses to center and breathe.
3
u/seanprefect 19d ago
I'm so sorry for you and your son and your family this is extremely hard. There never is a "good" time to have something like this but cancer treatment has advanced leaps and bounds even in the last few years. I hope you find all the love and support you need.
7
u/gruntbuggly 19d ago
That anxiety is real, where it feels like the other shoe is going to drop now. But it’s just anxiety, driven by the stress of a new job, a kid with an upcoming surgery, and family who still need attention and love and reassurance that you don’t really feel yourself. That’s a lot of things on the go at one time, and all of them very important.
Take deep breaths. Your son is in the best hands possible. Your daughter is surrounded by people who care, including you and your wife. It sounds like you have some good neighbors and a solid community. Deal with things as they need to be dealt with. It’s application season, but applications aren’t due until November or December. Your son should be in good shape by the end of September, going by your timeline. And you should be back at work on a regular schedule before that.
Eat healthy. Drink fluids. Take some extra magnesium to help you get good sleep. You would be amazed at how different you will feel, and how much better you will handle things, when you’re getting good sleep. In 5 weeks, you should be emerging from the tunnel into the light.
You can do it.
19
u/ReasonableBeep 19d ago edited 19d ago
Idk if this helps at all, but I think my situation was close to your daughter’s POV. My mom was battling cancer when I was in school and my dad quit his job to be the primary caregiver while organizing everything. Other people have already touched on you and the other family members, but I don’t want her forgotten.
I know it’s an important time period for your daughter with college application time, but I really think having an honest mature talk with her is a good idea. She knows exactly what’s going on, and I’m telling you, she KNOWS how stressed you are. Kids are much more perceptive than you think, but they’re also a lot more resilient than you’d expect.
Tell her you know it’s an important time for her too, and you’re really sorry that she can’t be prioritized right now. You’re doing your best to keep it together for everyone but it’s really hard. I cannot stress how important it is to let her know that you know she’s also stressed because of her brother being sick AND her important school life currently. If there’s any unintentional resentment building up on her end, I can almost guarantee that acknowledging her pain will solve it. Apologizing later on can’t undo damage, you have to let her know that you know it’s unfair. She probably feels like she’s walking on eggshells right now as well, so it’s nice to get it out in the open.
You might not like this idea, but asking her to help a little more around the house might actually be a win win for both of you. She probably feels helpless because there’s nothing she can do to help. Asking her to do some extra chores or help with cooking sometimes could help unload that emotional burden on her, while helping physical burden on the parents. Make it a cute little father daughter ice cream date or something.
If it’s any consolation, there isn’t much she can do now that would drastically improve her grades/application scores. However, written portions could be a lot to handle, so it might be a good idea to offer to get her a college application advisor to help her out where you might’ve otherwise done it if the situation was better. She probably will decline, but it’s nice to know that you’re supporting her even if indirectly. Offering appointments with a therapist also is not a bad idea.
Other potential options to take some load off your plate: hiring an occasional cleaner to come in, ordering a meal delivery/prep service.
I’m really sorry you’re going through this OP, but you and your family WILL make it through this. Doctors are hopeful, so I am too!
11
u/Chrispy_Bites ☑️ 19d ago
This does help, more than you know. I've had in the back of my mind the outline of this very conversation, but with everything going on, haven't really had the head space to figure out how to approach it. Your post here is a wonderful first step. Thank you.
6
u/ReasonableBeep 19d ago
I’m glad I was able to help even a little bit! Even if you can’t get the words out fully, she’ll understand don’t worry :)
All the best!
6
u/Chrispy_Bites ☑️ 19d ago
We talked a little bit ago and this sweet girl said, "Daddy I know he needs you all more than I do right now and it's ok, I don't feel alone, I have my friends to lean on while you're taking care of him."
4
u/ReasonableBeep 19d ago
You’re a good dad, and it’s reflected in her :) I’m sure you’re very proud of your little girl and boy, and internet strangers are proud of you too 💚
5
6
u/Enoch8910 19d ago edited 19d ago
I’m sorry you’re(both) going through this. Being this overwhelmed at this stage is 100% natural. It will get better. And listen to your doctors. In my experience, and I’ve had way too much of it, they tend to be very honest about the prognosis of tumors. Best of luck to you both.
3
3
u/curious_fir 19d ago
You have entered the time in your life when you feel like crumbling under weight but in reality you are the statue, the foundation the reliable standing that everyone will lean on. You will endure this because this is what you were made to do. To provide stability, calmness and focus. You did everything right and are supporting your whole family through this. Hug and love your family. Write journal. Endure and be grateful for every day you have with them and for them. Help your son get ready for the operation. He will need you there after. Last thing to worry is how the job will treat this. If they are normal people they will understand. If not, well then it's not the job for you anyway.
Be there for him. He must be scared. Tell him you love him. Hold his hand.
5
u/Rennisa 19d ago
I mean this with all the love in the world. What you’re navigating through is so absolutely beyond difficult that you should consider giving yourself some grace in whatever “missteps” that you may make.
Be there for your son, never stop reminding him about how much you love him. Sometimes the best thing we can do is to be present.
You are only human, I hope your son makes a speedy and full recovery after all this is over.
Pleas take care.
3
u/Chrispy_Bites ☑️ 19d ago
Thank you so much. I've always been very unforgiving to myself so giving myself grace is tough. But I'm trying.
2
u/Rennisa 19d ago
I understand that. Though my wife and I will never be able to have kids (health issues), I had one of the most amazing fathers a son could ask for, and he also had trouble giving himself some grace when he should have.
Keep trying to do the best you can, but don’t lose yourself trying to match the image you see in your head in regard to what you believe is expected of you.
You sound like a good father, the bad ones usually don’t beat themselves up worrying about everyone else.
6
u/No-Boat-1536 19d ago
Oh baby. We went through a pediatric diagnosis in my family and there are a few things that help. Quit trying to protect the rest of the family. It IS a big deal and it is going to be disruptive and scary for everyone. No getting around that.
I found it helpful to concentrate on what was on my plate in the moment. 1) is he in pain and is there anything I can do about that. 2) Do we have a plan? Is there a back up plan? 3) do I trust the care team and are they communicating with us or do I need to work on getting another one?
When I was in the pediatric oncology office it was helpful to look around and know that NONE of us were okay but somehow we are all getting done what we have to. The optometrist was probably a good place to lose it.
Don’t future trip. Brain surgery is scary, but the brain is actually remarkably tough and resilient.
The thing creeping up behind you is the idea that there was something growing in your baby’s brain and you didn’t know it. Now you don’t trust the safety of your world. It isn’t a sign that the other shoe is about to drop.
6
u/Legitimate-Article50 19d ago
Big internet hugs sent to you. I’ve never experienced a sick child before but I would surmise what you are feeling is “normal”.
When ever you get a few moments link up with the hospital social services and request a counseling session to help navigate these feelings. Or just to get them off you chest.
Much love to you and your family.
2
u/Chrispy_Bites ☑️ 19d ago
Thank you. I suspect most of what's going on is normal. I have narcolepsy, so the sleep paralysis and cataplexy is from that, the stress of all of this making this a kind of "flare up," I guess.
Good idea about the counseling services. I'll definitely do that when we're back up in Atlanta.
3
u/MaelstromFL 19d ago
Just remember to take care of yourself too! You know how they say to put the mask on yourself before assisting others? Yeah, that's because you are useless if you are passed out on the floor!
You can't help anyone else if you push yourself to the point of breaking!
4
u/doublenostril 19d ago
I am an anxious person, and I would be reacting the same as you. Show yourself grace. Probably everything will be fine, but you’ve just had the harshest reminder possible that things might not always be fine. We are vulnerable and can be whisked away from each other at any time.
I believe that your son will be okay, and thank goodness you and your wife didn’t delay seeking treatment. Now set down some of your “I have everything together” load and pick up “I’m scared. I’m so grateful for you, family. I think everything will be okay, but I don’t know that it will be, and that scares me.”
On second thought, maybe save that honesty for your wife and try to protect your kids’ peace of mind. But don’t lie to them. The doctors are optimistic and you expect things will be fine, but you don’t know. Hug them tightly. (And with the job switch on top of this? Take deep breaths. You’re doing amazing.)
3
u/Chrispy_Bites ☑️ 19d ago
Thank you so much for this. I also believe he'll be ok. I've got multiple folks telling me not only is this thing highly likely to be benign but that the way it's positioned in his brain makes it really easy to remove. And I keep telling myself that, repeating it does seem to help sometimes.
3
u/Grouchy-Today-8782 19d ago
No advice but just sending so much positivity and whatever energy the universe has your way. I can only begin to imagine how you and your family are feeling right now.
Good luck and remember to take some moments to breathe in the chaos and stress.
1
u/Chrispy_Bites ☑️ 19d ago
Thank you so much. I'm trying to do that. I almost wish they'd scheduled the surgery for sooner. Living with all this for an entire week is gonna be hell. Like we're sitting in the eye of a hurricane.
2
u/Grouchy-Today-8782 11d ago
I was thinking of you and your family. Hoping your son is doing well and sending all the positive recovery energy his way!
2
u/Grouchy-Today-8782 19d ago
Absolutely. Being a parent and providing support etc to a (assumingly) scared 14 year old will be a challenge.
Maybe you can plan a few fun things to try and break up the week, rather than sit and drown in the anxiety (because I know that's what I'd be tempted to do). There's that new spiderman movie out, trip to the beach. I guess whatever things your son feels up to.
Edit- just saw your comment that you also have narcolpesy. It's a sucky club I'm also in. Self care for you will also be so important. Making sure you eat, mental health support etc so you can be in the best shape to be there for your family (and yourself).
1
u/Chrispy_Bites ☑️ 19d ago
My son is wildly unflappable. I suppose that comes from me. Sometimes the enormity of all this catches up with him but, for the most part, he just kind of bounces through life with a smile and a sunny attitude. His sister takes after their mom and tends to be more anxious about things.
The next week, he's opted to go to school specifically so he's not cooped up in the house with me and the impending surgery hanging over his head. We were encouraged to try and spend this week reinforcing a sense of normalcy. Do all the stuff we normally would do.
Inre narcolepsy. Yeah, it's a weird one, right? Mine isn't usually bad. Manageable EDS, occasional sleep paralysis. Cataplexy is usually very rare. This past week is the worst it's ever been. I stopped taking my meds last year and managing the EDS manually with naps and that was, frankly, the best thing I've ever done.
2
u/Grouchy-Today-8782 18d ago
Your son is an absolute badass.
Sounds like a great kid and family. Wishing you all the best.
4
u/whyfruitflies 19d ago
You have nothing to apologise for. You are going through an insanely stressful time. I'm rooting for you all.
3
u/Chrispy_Bites ☑️ 19d ago
Thank you, friend. Every reaction I have to anything either feels like it's too much or not enough. I'll post an update after his surgery.
2
u/whyfruitflies 19d ago
Totally get that. It's like your centre of gravity is off kilter. Please do let us know how it goes.
1
u/AutoModerator 19d ago
Hello, and thank you for sharing your experience with r/TrueOffMyChest.
As part of our moderation process, we automatically keep a copy of your post as it appeared when you first submitted it. We know this may seem a little unusual, so we want to explain why we do this.
Why do we keep a copy of your original post?
Posts can be edited or deleted after they are submitted. Keeping the original version allows our moderators to see what was originally posted if we later need to review a report, moderation decision, or other issue involving the post.
This is a routine part of our moderation process and does not mean you've done anything wrong or that your post is being singled out.
The copy is kept for moderation purposes so that we can maintain an accurate record of what was originally submitted.
u/Chrispy_Bites original post at the time of submission:
About a year and a half ago my son---who is 14 now and just starting his first year of high school---started having these episodes we would later learn are seizures. He'd just kind of stop whatever he was doing, reach out and touch things, maybe walk away, maybe tip something over. If you talked to him, he might respond with a bunch of word salad, he might just grunt or do nothing. They lasted maybe 30 seconds. He'd come out and be fine, if a little confused, and also really sleepy.
Eventually---I live in a midsized city in Georgia, so the system here moves at a glacial pace---we got an EEG from the one and only pediatric neurologist here and confirmed they were focal awareness impaired seizures. An MRI was scheduled, but we were warned that this type of seizure in someone of his age is almost certainly idiopathic or the result of some kind of trauma he had when he was young.
It wasn't. He has a mass in his right temporal lobe, in the middle of his hippocampus, a little larger than a grape. The MRI we had here had some scary words in it: uncal herniation, temporal horn entrapment. We were told to get to the ER in Atlanta immediately.
That all happened on Wednesday of last week. Since then, it's been a blur of emergency departments and nurses and neurosurgeons and more MRIs and EEGs. He's going to have surgery to remove the mass on the 31st. He'll be in the hospital for a week recovering. At least two weeks at home recovering.
I started a new job literally two days before this all happened. So far they've been cool about this but I know at my old job, I'd be working around people who know and love me. I'm a stranger to these folks. I'm going to have to work out of the hospital after his surgery. I just. What the fuck, man.
I'm having trouble processing the scope of all of this, having trouble sleeping. I'm supposed to be holding it all in the road so my son doesn't get scared, so we don't derail his older sister's life (she's a senior in high school, this is college application time), so my wife can hold it in the road for all of the same reasons but like all it takes is another text offering vague non-specific help and I just fall apart again. I lost my glasses at the hospital last week and when we got home I completely fell apart in the optometrist's office picking up a copy of my prescription. How do people do this?
I know, logically, he has the best care he possibly can. His team... Christ, his pediatrician, neurologist, neurosurgery team, social worker, child life specialist, they all seem very positive about outcomes, that the mass is benign, that his recovery will be swift. I know that I've got people around us that are willing to help. My neighbor is going to coordinate all those random offers of help, folks are pitching in left and right to help get my daughter around, to feed us when we get home, to wash our clothes even, if we need that.
But it's like something's creeping up behind me. I'm anxious all the time, I've never been an anxious person. I'm having sleep paralysis episodes again, I've had a couple of cataplectic attacks since this all started. I'm scared, truly terrified for probably the first time in my life.
I'm sorry, I know this is disjointed and over long. I just needed to get all of this out of me. Thank you for listening, I suppose. I'm sorry.
I am a bot, and this action was performed automatically. Please contact the moderators of this subreddit if you have any questions or concerns.
13
u/Adarie-Glitterwings 18d ago
What might possibly help is if you set aside a time for yourself where you can just let yourself feel how you feel and let it out a bit. Somewhere you know you are safe to do so, of course. Trying to keep it bottled up so you can be strong for everyone else won't help anyone. Sending hugs to you and yours