New Update re 23 yo son with brain cancer

Specialties Oncology

Published

I did not know whether to keep the previous thread going or start out fresh. If you are interested or have been following this - please read the previous long threads if you wish - so much info from everyone -

Where we are now to so many who have asked:

My son finished out his radiation tx a couple of weeks ago and is now back with wife and baby girl in Grand Forks.

I spent the last week+ with him going to tx's and talking with his rad/oncologist. Asked some big questions. Some of course had answers - most were answered with "some, maybe, possible, probable, could be, might be, it has been known to, in some cases, not always," He could then hear what he needed to hear.

He asks: What do we call this...is it a tumor or is it cancer? (with brain stuff this is a tricky kind of question) Onc says: It is cancer.

What is this stuff about 'survivorship' my mom keeps saying and I read?

Onc says/mom says together....You are 'surviving' from the moment you are given this diagnosis. Mom says...You are NOT DYING from this brain cancer or tumor...You are LIVING WITH a brain tumor.

What do I tell people? Onc says - You may say anything you like. You may say "I have a brain tumor; I have been treated and now we are going to monitor it." This is all you have to say or you may go on as you see fit.

So I will have 'this?' the rest of my life?

Yes.

How will we know if this (rad tx) works?

Onc says: Our goal for you is to minimize the side effects of the tumor - on your vision or anything else.

(silence)

Onc continues - along with mom in explaining - "You will return to Mayo at the end of May for another MRI. At that time we will see what has happened in re to tumor and compare it to original MRI from December. We hope to see it diminished in size. We will then decide how to followup to keep track of it's potential to grow. We hope it does not grow anymore.

Will my vision improve (most disturbed about the obvious esotropia at times)

and is there surgery that will correct this?

Onc sort of answers: We would hope to see the tumor press less on the 6th cranial nerve so you vision could possible improve.

Will my hair come back? (it has vaporized in 6 obvious spots on his head - so he's been shaving all of it - but the shawdow still remains and you can tell it's not shiny bald) -

Onc and Mom: It may take awhile...Onc: sometimes it doesn't or it may come back thinner. Usually starts in about 6 months....

Weight? (he's gained 32 lbs in the 7 weeks there as a result of dexamethasone and godzilla appetite)

Onc and Mom: When you are totally off the steroids - you will feel more like moving around and not as hungry and be able to go back to the gym and get healthier....

and there was more.....

I asked specifically again WHERE this tumor was - as Mayo had a scan that was more definitive than the MRI from Grand Forks. It originates in the midbrain back toward the cerebellum - down through the pons and into the upper medulla. Sucks, huh?

So the second trip I was with him - it was good/better than the first. I actually don't think I cried. We ate our way through Rocester - we laughed that buffets - especially Golden Corrall - should have sign on their door that said if you are going through radiation or chemo at Mayo - you are only allowed 4 plates of food - not more.

He is mentally fuzzy. This may be a result of...radiation, steroids, other, sleep deprivation, and should improve....or is it a result of the tumor and may not.

He has to return to the AF and determine if he will be able to continue as he wants to make this a career - or if he can crosstrain into something more 'easy' than being a crew chief - he's worried...about life.

But...he also says that this may have been one of the best things that happened to him. (gulp from Mom and fignting those tears) This is because he sees the priority of the bigs stuff now - he is totally committed to being there for his young family - seeing that no matter what - they are supported and taken care of - He's gone home to be a 'house daddy' with his beautiful 5 month old while his wife returns to work part time - He gets to BE with this precious gift of life he helped create - and see that life will always go on.

--------------------------------------------------------

I've struggled with wanting to immediately move closer - and then as I've seen him return home and have felt he's somewhate safer there than far away at Mayo - I've relaxed - maybe. Planning on (today) staying in Texas and getting myself in a position to travel for extended times to be there if needed. My mom, another son, and my sister are all here. And yet...I've got my MN license in hand if I need to go.

Most of all...I want to thank each of you for the many, many incredible GIFTS you've given me in love, prayers and ideas. You just can't imagine what it has meant...

God Bless,

Pamela

Up Vote Up Vote ×
Specializes in cardiac med-surg.

pam thanks for the update

i wish the very best of things for your family's future

hang in there

Up Vote Up Vote ×

My prayers are with you, Pamela. As a mother of two boys, I can't even come close to imagining how you must feel. Hang in there--and do for you, too.

Linda

Up Vote Up Vote ×
Specializes in Pediatric Pulmonology and Allergy.

Thanks for the updates. Best wishes to your son and family.

Up Vote Up Vote ×

I appreciate your sharing with us.

My prayers have been with you and your son and family.

My oldest son will be 24 this month. My second son is 22. I cannot imagine walking in your shoes. You inspire me.

steph

Up Vote Up Vote ×

Dear Pamela, Thanks for the update. My prayers continue for you and your son and family. {{{HEALING HUGS}}} being sent to you all.

Up Vote Up Vote ×
Specializes in SICU.

Thanks for sharing with us. ((BIG healing hugs)) to you and your family.

Up Vote Up Vote ×
+ Add a Comment