Please Help, Lovely Son is Medullablastoma survivor of 14 years

Tiggy65

Hello, I just joined this network today.  I am in dire straights of trying to figure out where the line is of what is possible back lashes from radiation and chemo, or if it is something else.  I am going to get right to the issues.  My son is my world, I don't want to argue with him anymore about these issues, I want him to live in harmony, I want him to have peace, love and the best life I can provide for him while he is still at home.  He is an amazing kid, he has done amazing things, and I am so very proud to have him as my son.

My son is a smart kid.  He makes A's and B's easily, but obviously since the radiation he has some issues.  And there is no way to tell what EXACTLY they are.  Sure.. from testing in school, one is reading and comprehension because of some processing issue.  He would test very high in this area before the radiation so we know it is due to it.  But let's get to life, the process of life, the responsibilities, the stubbornness, anger, emotions, love, etc.  Is that all exactly the way it would have been prior to the radiation?

My son is 19 years old, he works at Publix (grocery store), he started college this past August.  He works as much as he can forgetting he needs to rest and not get home at 11:30 or midnight, then get up at 6:30 and go to school.  There are mornings I have to wake him up because he doesn't hear alarm due to being so tired of all the work, school, etc.  I do not mind waking him up, but I feel it is wrong because he is 19 and should not be enabled.  I bounce this in my head daily, when I don't wake him up the guilt to watch him suffer the next day is horrific.  He will then sleep through the alarm again in a week, and we start the process all over.  I have given him another alarm to wake up by, he won't turn it on.  Maybe I should be turning it on for him?  OR do I make sure I wake him up on these mornings instead of him suffering through life just because of this one thing, not always hearing alarm.  And just to be clear, he loathes it when he is late or doesn't hear alarm, and this is not every morning, it is only mornings when he is exhausted that he doesn't hear alarm.  That all may sound petty and how is this some huge issue.  But there is more.  It all adds up into this deep pot of ongoing turmoil with me of always wondering and second guessing my decisions because of the possiblitily of what if this is some sort of radiation aftermath as it is with the reading/comprehension.

My second issue.  He goes to work, school, etc.  Then there is the day off, or the day he doesn't have to work until 6pm say.  He will sleep until 2, 3, 4pm.  This has been going on for over 2 years.  He does this as well during the summer when he is more rested due to not being in school.  I have tried everything to get him out of this habit.  He even went to a sleep study doctor.  The doctor said he just needed good sleep hygiene.  My son goes to bed on these nights at 1230, to 130pm.  It is not like he is up all night.  I start trying to wake him around 11, then I do it hourly.  Other times I don't touch him until 2, sometimes he will get up at 2, sometimes 1, other times 3.  Today he got up at 3 and I feel that is only because he had a chiroproactor appointment at 3:30. Well I know it is why! If he had to be somewhere in the morning every day, he will get up (IF HE HEARS THE ALARM) but if he has nowhere to go, he will sleep and sleep and sleep.  He even does this on vacation at the beach, with his best friend with us who gets up at the crack of dawn to go fishing and we cannot get my son, Nick, to move.  He would get up on vacation earlier than here, it would usually be around 12 to 1.  So this one is do I let him continue, do I force him to get up.  Do I support him through this knowing this may be some sort of depression and this just is what it is.  We tried anti-depressants, they did nothing for him, actually the side effects became dangerous and we took him off after a month.

This next paragraph may tell you all a little about his personality to wrap this whole post up.  And I hope it may help you understand him through this quick summary of my precious son who is doing wonderful in all areas especially after what he went through.  And he went through a lot.  From not able to walk after surgery to them saying he may never be able to walk again, to fully able to walk again now.

Nick was involved in another car accident Jan. 11, some kid looked down and ran into my son from behind going 55mph.  My son was at a stop waiting for a car in front of him to turn right.  His car was totaled.  Nick is having some back pain, nothing huge, but the obvious reason for the chiropractor.  Nick had just finished perfecting his Celica with uprages like new head unit, speakers, etc. from Xmas gifts, the cost of installing all of that a week before the accident to new tires, maintenance $$ of $600ish 3 weeks before the accident, several repairs he did himself over the past month and this does not include the entire year of him taking care of this car to make it run the best possible way it could run.  He was not making this car into a fast car or anything fancy like that, this is just a kid taking pride in his car and what he learned in Auto class at school, to do various things to it to maintain and make it last for a 13 year old car with 160K miles on it.  It then gets totaled.  He then has to find another car and start the same process all over again.  This accident took loads of my time and his that was not needed, the stress of this wreck was unbelievable.  The perfectionist part of him comes out yet again, but this time not in the slow let's do this all in a year, it had to be DONE NOW.  The new tires on this new car obviously is a must, and the timing chain issue cannot be put on side burner, the maintenance of spark plugs not sparking, yes... it all had to be done NOW.  Did he know this when he bought the car?  Of course not, and he wanted to purchase the car by himself, he wanted to be independedent and do this on his own.
He has missed school due to this accident, he did not miss one day first semester.  He has missed work as well.  He has also missed both work and school due to working on the car until 3 or 4 in the morning. 

On Thursday morning, he was to go to school early with his friend he car pools with to do makeup WORK.  He had everything laid out and planned in his room to go.  He also worked on his car that night until about 10:30 and with my help.  He ended up running into a snag, the car would start but it was not driveable, we found a fix but wouldn't know until morning, he went to bed at 12ish.  He overslept through the alarm.  I wake up at normal time for him to go to school and he tells me he is not going to go, I find out later because he didn't want his teacher knowing he was so irresponsible that he slept thru alarm.  I am sure he made some BS excuse up to prevent the wrath.  I normally would have set my alarm as well for 6AM to make sure he woke up.  I being so mentally worn out and emotinal from everything I have just written, I totally forgot.  I had a complete meltdown when he told me he was not going to school.  I understand now with his reasoning why, he is very shy, so I get that.  What I do not get is why he will still not go through any extra steps to make sure he wakes up, like another alarm clock. He doesn't even ask me to be his insurance.

This is all where I am torn.  How much is enabling him if he is not even learning.  Then you watch him work on a car and see how intellectual he is and how he learns so well that how can he possibly not get or want to get that he NEEDS an extra alarm.  How do we know for sure we are not overstepping into a fine line of a struggle inside themselves because of the radiation.

All I need to know is to be okay with him sleeping until 1 or 2 or 3 pm, then I WILL BE OKAY.  I am trying to raise my teenager at them same time understand there are some horrible radiation issues, I just can never say, OH THAT is from the radiation.

I hope this is an easy read for all, as I need help and hope there are some of you with experience on this out there.  I have not stopped crying since Thursday morning.

Thank you for reading and I apologize for the length, Robyn

 

 

djwill5

Hang in There

My husband had brain surgery January 9th to remove a brain tumor.  He's had no radiation or chemo, or anything out of the ordinary as far as medication goes.  He now sleeps MOST of the time.  He is exhausted all of the time and just little things (walking from the car into the store to get an electric scooter) wear him down, quick.  We take every day as a blessing.  The days he sleeps, I try to keep the kids quiet.  The days he's up and peppy, we try to do something family oriented.  As hard as you are on yourself, try to remember that your son is not only dealing with being a teenager, but dealing with his illness as well.  Prayers for the future 

Tiggy65

djwill5 said:

Hang in There

My husband had brain surgery January 9th to remove a brain tumor.  He's had no radiation or chemo, or anything out of the ordinary as far as medication goes.  He now sleeps MOST of the time.  He is exhausted all of the time and just little things (walking from the car into the store to get an electric scooter) wear him down, quick.  We take every day as a blessing.  The days he sleeps, I try to keep the kids quiet.  The days he's up and peppy, we try to do something family oriented.  As hard as you are on yourself, try to remember that your son is not only dealing with being a teenager, but dealing with his illness as well.  Prayers for the future 

Thanks

I am glad to hear your husband seems to be doing well, and yes sleep is definitely good medicine.  Nick is 14 years out from the surgery and radiation.  I do know 100% he is fatigue due to the radiation and other factors.  We do our best to beat that with nutrition, greens, working out, etc.  It helps a TON!  He misses one dose of this or that and he can tell the next day.  I think it may just be the new reality, he needs that extra sleep for the past two years.  He told me yesterday, he is tired every single day, no matter what he is doing, he is tired, so when he has no where to go, he prefers to sleep. As a mother with everything we have been through and able to fix and cure, help with most of the issues, when there is one that is not so black and white, it becomes very frustrating.  I am the type that wants to know why and may need convicing but if it is as simple as him needing that day to sleep because of the fatigue then so be it.  It is hard to watch, when he goes to school full time, works as much as he can, then sleeps all day on days off.  It gets to the question of what is the point of doing all that if you are that worn out and cannot enjoy your day off.

24242

Side Effects

I have struggled with exhaustion most of my life and got worse with a cancer fight just trying to get through all the treatments.  I actually found out there that I have a sleeping disorder that actually makes us worse and it is because we do not reach REM in our sleep necessary to actually get rest.  I do not dream and rarely have through my life and it takes till afternoon till I wake up though I am truly a morning person. 

We all need to find a new norm and that might be what you have to do as his mother.  Nothing is the same and actually doing all he does seems quite an achievement.

I hope you find your way,

Tara