How do I tell the kids that DH needs surgery?

[ExcitedMama]

I'm a trembling mess and really can't think straight. My DH needs brain surgery. Words I really don't want to write or say. Local doctor said it should happen within the month. I'm trying to get in for opinions from the top places and I have no idea when that will happen or how quickly they could be scheduling him for surgery. I need to be ready to tell the kids but I have no idea what or when. Can anyone give me links or experience with this so I can be ready? They have no idea what's going on and haven't realized I'm crying in the next room but trying desperately to keep it together for them.

[Pink and Green Mom]

I don't have any advice for you, just a lot of :grouphug:  :grouphug: :grouphug:  :grouphug:  

[prairiewindmomma]

When my dd was dx'd with a brain tumor, my kids were 6, 5, 3, and newborn.   Looking at the ages of your kids, I would keep things very simple in your conversation.  Daddy went to the doctor, and they took a picture of his whole body to look at the insides.  The pictures of his brain showed that there is a sick part in there.  The doctors are going to take the sick part out.  He will go to the hospital for the surgery and he will stay there for a few days and then he will come home.

 

Your kids already know something is off. Nearly all kids have very very good intuition about such things. It's ok to say you are scared. It's ok to say that you don't know what will happen.  

[prairiewindmomma]

Also, I assume you are sending out scans to various tumor review boards? Usually there is a protocol for such things, and the turn around time is about a week.  If it's straightforward, sometimes such things are not necessary. If the location is weird or it's a specific subtype that you need to go to a specialty center, then you can do the reviews.  Sometimes they will want you to do radiation first to get clean margins for the surgery, sometimes they don't.  In any event, expect that stuff is going to start marching forward in the next week or two. 

 

Get meals in the freezer.

Line up childcare.

Call in your ranks of friends.

Spend time together as a family. Laugh. Cry. Freak out.

Know that it is normal to be numb, fuzzy brained, and downright disorganized.

 

Feel free to keep pm-ing me. 

[Ethel Mertz]

I did some googling of resources for you:

 

http://www.helpstartshere.org/health-and-wellness/living-with-illness/talking-with-children-about-a-parents-serious-illness.html

 

http://www.brighthorizons.com/family-resources/e-family-news/2011-talking-with-children-about-the-serious-illness-of-a-family-member/

 

 

:grouphug:

[Mom25girls]

Sending hugs, prayers and wishing that I lived close to you. If you're on the East coast, drop me a PM. 

[Monica_in_Switzerland]

My mom had brain surgery when I was in 5th grade.  I think my mom and step-dad simply played down the BRAIN SURGERY aspect of it.  They referred to it as "having a pituitary tumor removed" and it was only sort of vaguely mentioned that the pituitary was located in the brain.  

 

When my dd was dx'd with a brain tumor, my kids were 6, 5, 3, and newborn.   Looking at the ages of your kids, I would keep things very simple in your conversation.  Daddy went to the doctor, and they took a picture of his whole body to look at the insides.  The pictures of his brain showed that there is a sick part in there.  The doctors are going to take the sick part out.  He will go to the hospital for the surgery and he will stay there for a few days and then he will come home.

 

Your kids already know something is off. Nearly all kids have very very good intuition about such things. It's ok to say you are scared. It's ok to say that you don't know what will happen.  

 

This sounds exactly right to me.  But I would attempt to mention your own fears as little as possible.  You can also mention that when he comes home, he will rest a lot and probably want to be in a nice, quiet, dark room.  

 

Prayers for you.  

[Cinder]

:grouphug: :grouphug: :grouphug:

[Mbelle]

My dh had surgery about 10 years ago.  Family helped out for the week he was in the hospital.  Recovery lasted about 3 months and I had no idea that it would be so hard emotionally and mentally.  It really took it out of us.  I wish we would have asked for more help.  

[happi duck]

When my dd was dx'd with a brain tumor, my kids were 6, 5, 3, and newborn. Looking at the ages of your kids, I would keep things very simple in your conversation. Daddy went to the doctor, and they took a picture of his whole body to look at the insides. The pictures of his brain showed that there is a sick part in there. The doctors are going to take the sick part out. He will go to the hospital for the surgery and he will stay there for a few days and then he will come home.

 

Your kids already know something is off. Nearly all kids have very very good intuition about such things. It's ok to say you are scared. It's ok to say that you don't know what will happen.

I agree.

 

My mom had many surgeries during my childhood. Matter of fact and not negative is good. Kids don't have the same framework to worry about specific whatifs and I'm glad my parents did not go into how serious my mom's diagnosis was.

 

(Hugs) and more (hugs)

[MEmama]

No advice, just sending you lots of hugs and positive energy.

Edited May 26, 2016 by MEmama

[wapiti]

What the PPs said - keep it simple.

 

My advice would be to look for a neurosurgeon who is a cranial specialist.  Some only do cranial stuff occasionally, whereas others that's their main thing.  Ask your neurosurgeon what their caseload is like, spinal vs. cranial.  (My DH had a benign tumor removed from the CP angle about 4 years ago.  We were willing to fly but fortunately had a great surgeon locally.  We made a lot of calls to be sure, e.g. dh called his college buddy who was a doc who knew a ped neurosurgeon locally who then confirmed that we were seeing the best.)  I have pretty much blocked out most memories of the incident - seems like it must have been a bad dream.)

 

Work on lining up care for the kids while you are away.  That is a huge pain to handle but will seriously take a load off!  We had to patch together help from different areas of our life, e.g. one lady from work watched the kids for a few hours in the very early morning until the cleaning lady could get there.  You'll want to stay overnight with your DH after the surgery.  Also don't forget you'll want to be at the hospital for the day, the day or two afterward.  I remember the next day, I went home, changed clothes and returned to the hospital (30+ min drive)... then around lunchtime, I got a call from school that one of my kids just threw up (of course!) and my very kind neighbor went to pick him up and bring him home.  Hello neighbor, would you do me a favor and pick up my puking child...

Edited May 26, 2016 by wapiti

[arnold]

Keep it matter of fact, straight to the point and somewhat vague if necessary.....keep your emotions out of it.

[G5052]

We've lived this for over a decade now. I can't even count the number of surgeries and outpatient procedures. Usually it's 1-2 surgeries and 10-15 dangerous outpatient procedures a year, mostly some distance away. The next one will likely be this fall involving a 3-day hospitalization, again out-of-state.

 

Always with anything spinal/cranial, I stay with them as much as I can stand, and certainly the first 24 hours. DON'T trust the medical personal. There will be some good ones, but watch for the bad ones.

 

It will indeed take a toll. You need to watch both yourself, and your children and get professional help if you need it. It's OK to be human. This will be messy and difficult.

 

For young children, I'd keep it to the basics. Make sure that someone they trust is taking care of them.

[displace]

Just wanted to send hugs and good thoughts :(

[trulycrabby]

As arnold just stated, keep it straight to the point and as vague as possible. Just tell them that the tumor in the brain is making dh feel bad and needs to be removed so he can feel better.

 

:grouphug:

Edited May 26, 2016 by trulycrabby

[Anne]

Praying - and sending hugs!

 

Anne

[FaithManor]

No advice just  :grouphug:  :grouphug:  :grouphug:

[ktgrok]

Do you live anywhere near a large teaching hospital? When my mom has lung cancer she ended up going out of state, to Duke University, as the doctor that pioneered her surgery and developed the tools for it practiced there. They have a large, well known cancer team. I would not just go to any local hospital.

 

Edited to add: The insurance not only paid to have the surgery there, they also gave a stipend towards a hotel and travel expenses. Call your insurance to see if they have that kind of program. 

Edited May 26, 2016 by ktgrok

[zoobie]

I would go to Duke for brain surgery.

 

I don't have advice for your kids. If you have a local children's hospital, you might be able to call their child life department for advice on discussing medical issues with children. They're usually excellent resources.

 

Thinking of you all. :grouphug:

[Xahm]

Whatever you tell them, I recommend you write it out and give it to all the caregivers, not to give them a script but so that they know what the kids have been told. I've watched little kids while their mom was in surgery and I didn't know what the kids had been told. I didn't want to say too much, but I also didn't want to avoid "where's mommy?" In a way that felt dishonest.

Maybe get some kids books, like Curious George goes to the hospital and Madeleine that show a (minor) surgery and that include the idea of recovery time. I'd preread first, of course, but those might be reassuring for kids.

[PinkyandtheBrains.]

 

 

Simple

Straight forward.

Don't mislead or lie, but they won't need every detail.

[Alessandra]

Whatever you tell them, I recommend you write it out and give it to all the caregivers, not to give them a script but so that they know what the kids have been told. I've watched little kids while their mom was in surgery and I didn't know what the kids had been told. I didn't want to say too much, but I also didn't want to avoid "where's mommy?" In a way that felt dishonest.

Maybe get some kids books, like Curious George goes to the hospital and Madeleine that show a (minor) surgery and that include the idea of recovery time. I'd preread first, of course, but those might be reassuring for kids.

I can in no way speak to a situation as serious as yours, but when dd was 5 and had to have eye surgery, she read the Curious George hospital book and other age appropriate hospital picture books multiple times each night.

 

Another thing that helped was that the surgeon gave us a blue gown, slippers, hat, mask, and bowl for throwing up. Then, at the hospital, the gowned workers were not as scary. Will your kids be visiting at all? Masks were the scariest for my dd at that age. If you have time, take kids to hospital, walk around lobby, and eat in cafeteria before your dh has to go in. For kids your ages who may have no idea about hospitals, it can be reassuring if surroundings are a bit familiar.

 

Again, I do not have experience in your situation, but my dd was around the age of your kids for her surgery. I told her all the side effect type of bad things to expect. Not any serious complications, but that she would not be able to see and would probably throw up. I was glad I did when I heard another child start screaming he was blind.

 

I also recommend some new stuffed animals and a freezer with ice cream. Let your kids be involved by making or buying get well cards.

 

Once more, I apologize for relating my experiences in a much less serious situation. I'm hoping there might be one thing that could be a help. Or, if not, just (((hugs)))

 

ETA

 

Seconding childcare arrangements. *Redundant* if possible. Once, I had to call from my own hospital bed -- called my church and begged for somebody, anybody to go to my house, as my sitter had her own emergency. You can bet that to this day, I always volunteer whenever the kind woman who went over needs help, lol.

Edited May 27, 2016 by Alessandra

[ScoutTN]

  :grouphug:  :grouphug:  :grouphug:  :grouphug:  :grouphug:

I will pray for your Dh and you and your kids!

My Dh had brain surgery last year (for a different issue). He is fine, though he may need future surgeries. It was a long recovery emotionally.

 

You have already gotten good advice. Seconding the back up meals, multiple childcare options and keeping conversations with kids simple.

 

[Melissa in Australia]

:grouphug:  :grouphug: :grouphug:  

[goldberry]

Just some  :grouphug:

[Melinda S in TX]

Keep the explanations about your dh basic, but do prepare your children.  After surgery, tell them beforehand that dh will look different (head shaved, scar, bandage), he will be tired, etc.  As best as you are able, let them know the plan:who will take care of them, where they will sleep, when will they see you.  Call your children if  you can't be with them.

 

How quickly they do the surgery just depends.  Steven was diagnosed with a brain tumor in the er on Saturday.  They kept him inpatient because it was the only way to get him a detailed mri quickly.  They released him Monday afternoon after the mri.  He had surgery Friday, just under a week from finding the tumor.  He was in icu for a couple of days, regular room for a few days and then released.

 

Do your best to take care of you, whatever that means for you.  Sleep is essential.  Eat real food if you can, and not lots of fast food or vending machine.  Get a water jug to carry with you everywhere.  Keep a notebook where you can write down your questions and the answers.  Accept all the help you can.  Grab a quiet moment when you can to just breath.

 

I'm so sorry your family is having to go through this.  If I can do anything for you, pm me.

[Janeway]

Your kids are young. Very young. All they should be told is that Dad will have surgery and not details about how bad things can go. If they go poorly, then deal with that then. If you try to explain this or that could happen but likely won't, they won't understand. They will just see it as it WILL happen. 

 

(((hugs))))