3 y/o son's cancer has grown back. Don't know how to cope

S

shadows_and_sparks

New member
Dear Daddit, today I received my son's MRI results following his radiotherapy treatment. It was the worst news and has hit me like a truck. His brain cancer has grown back in several new locations.

I previously posted in AskDocs about his highly aggressive and very rare brain cancer, here.

Whilst not impossible, this type of recurrence makes a cure highly unlikely. I feel helpless. Sick to my stomach. My wife is devastated and scared and it's breaking my heart. I'm holding onto whatever hope we still have but I also know there is a high likelihood that I'm going to lose him.

The immediate future is going to be rough on my family and mostly on my son. I want to be there for him, his brother and my wife. I'm thankful that right now he is full of energy and wants to play - but my heart is breaking everytime I look or think of him.

Death is as natural as life. But the thought of this bright beautiful boy not growing up is crushing me.

Any advise for a dad that needs it?
 
@shadows_and_sparks My son is going to die of a brain tumor. Not as aggressive as yours, but the long term outlook isn’t great. He was diagnosed at 6 months and is now 4.5yrs old. 3 resections, radiation, and just had his second stroke.

Sort term goals:

find a therapist. Don’t try to do this alone. They will have the tools for grief and help navigating this fucked up experience.

Make time for just you and your wife. This could make or break your marriage. Don’t forget why you love your partner. Make time for date nights.

Ask for help. Giveahand.com is a great way to point people when they ask ‘how can I help’ … I felt weird making a place for people to give money but people really want to help. Let them help.

Focus on making the little guys experience as best as possible. What cool stuff can you still do? Cool toys? Lots of attention? All the ice cream in the world? Whatever it takes.

Lastly, give people some grace. No one knows what to say when your child is that stick. Some people short circuit or just can’t shut up and dig a hole. Let it go, laugh it off, tell your wife and smile.

This is a tragedy. I’m sorry you have to deal with this. It’s not fair

I hope my rambling thoughts help in the slightest ❤️
 
@semyamara Thank you for taking time to reply. I'm so sorry to hear about your son to. I'm thankfuk for the advice - and am acting on it. I've read your post and the other responses here multiple times - thank younand stay strong.
 
@shadows_and_sparks Don't isolate yourself. Reach out like you just have, but to the people that can physically be there for you and your family.

My heart breaks for y'all. I am so sorry.
 
@shadows_and_sparks I know this will be difficult but try your best to ground yourself with your son while he's playing with you. He may have cancer, but he's also three. If he's wanting to play, oblige. Make time you spend with him the best possible as much as you can.

I struggle with intrusive thoughts of the worst possible things happening to the people I love, and the therapists I've talked to all talk about grounding. So whenever I'm dealing with those thoughts, I consciously remind myself of where I am and what's around me. I remind myself that my son and wife are okay, flooding my thoughts so I can't think of anything else.

This is just all from my personal perspective, but like others have said, please seek professional help for yourself and your wife. You may even consider couples counseling as well if you haven't already started.
 
@shadows_and_sparks Man…. I’m at a loss. All I can say is fuck that. You have to stay strong for your son and family. Fight the good fight. And like said above, be open with your emotions with close friends or family. Fuck it. Reach out to me if you just need to blow up and vent. Can provide a number and promise no judgement. You do what’s right but whatever you do don’t swallow it and keep it in, that shit will eat you alive. I’m not a super religious man but you all are in my thoughts. Best of luck.
 
@shadows_and_sparks First of all, I'm so sorry, it's an unimaginable situation that nobody can know how it feels except those that go through it. As someone who works in cancer research and treatment and is a father to a 13 month old, it just hurts my soul to read stuff like this, which is all too often. I truly wish you the best.

Second, the very first thing you need to do is find a therapist for you and your wife, either do it together or separately, whatever is most comfortable, but this not negotiable. You guys are going to go through things that will want to break you individually and collectively, an outside hand is needed to make sure you have a communicable outlet to hold it together. Allow yourselves to express those emotions and find psychological ways to hold on, no matter what you need to communicate with each both good and bad. Cry, listen, hug, cry some more, and talk. Let nothing fester inside you.

You need to plan, who knows maybe things will go as best as they possibly can for as long as possible, but plan for the worst. That means mentally and physically, do you have financial needs that have shortcomings, do you have an understanding workplace that can accommodate, do you have money and resources for making life comfortable and the possibility of a funeral in the short term? There are A LOT of places out there that can help in these situations, places that can help with the financial, mental, and physical burden in the coming weeks, months, maybe years. Use them, all of them, don't be afraid to ask for help and don't be to stubborn to deny offered help in all forms.

Give everything to your child, your attention, your love, your strength, and more. Give happiness, absorb their frustration, don't let your anger/anxiety/stress/frustration become theirs whatever it takes. Take each day as it comes and be there, enjoy every second you can.

Find support groups, you're not the only one going through this and listening to others who are going through it or have gone through it will help. More specific advice can be offered by those individuals, ask your doctors/nurses/hospital staff for those resources, they will have them.

Don't lose sight of your relationship with your partner, ask for help such that you two can have a break together, being strong together gives you the best chance of making it through this and that means keeping your relationship strong.

Good luck for you and yours, keep fighting everyday.
 
@alenandy
Give everything to your child, your attention, your love, your strength, and more. Give happiness, absorb their frustration, don't let your anger/anxiety/stress/frustration become theirs whatever it takes. Take each day as it comes and be there, enjoy every second you can.
Click to expand...

Thank you for this advise during a dark time. I tried my hardest to do exactly this and it gave me the strength I needed.
 
@shadows_and_sparks I saw your update thread and, again, I am so sorry. It truly is unimaginable and I legitimately cried when I read it. I hope you find peace in the fact that your son is no longer suffering, strength with your wife to keep moving forward, and as much help as you can possibly get from friends, family, and support groups/therapy. Keep your head up, you are a fantastic dad, and still have so much to live for.
 
@shadows_and_sparks No advice, just another fellow dad who is so sorry you’re son and your family are going through this. Absolutely heartbreaking I can’t even imagine, and I am so sorry. Miracles happen every day, and I will be praying your sons full recovery is one of them.

Fuck cancer
 
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