Please Help, Lovely Son is Medullablastoma survivor of 14 years, sorry it is very long

[Robyn Hood]

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

[Allison DeSoto]

Hello Robyn I do not have direct experience with medullablastoma cancer but I am also a childhood cancer survivor.  As far as the sleep goes, I know that for me sleep is crucial to me being able to function properly in the morning, some nights I do feel the need for 12 hours and every once in a while that is okay but I am not usually that tired.  I will need at least 8 and a half hours to function properly so I would say that his sleeping as much as he does is abnormal (though again I had a different cancer experience so I cannot say for sure).  I think its really good that you went to a sleep specialist but I'm sorry to hear that you didn't leave with an explanation.  At the same time though, it at least rules out quality of sleep abnormality.  He sounds very intelligent and hardworking so I think when it comes to him not seeing the logic of another alarm clock is mostly just stubborn-ness.  A lot of people have a hard time admitting that they need extra help because they want to be as normal and in control as possible, but we as cancer survivors need to be extra vigilant in taking the necessary steps that will lead us to function as normally as possible.  This also leads my next question, you said that he tried antidepressants and that they didn't work, how is his mental state now?  As you already know, extreme fatigue is a big symptom when it comes to depression.  Is he seeing some kind of counselor or something?  I found that counseling helped me a lot!  Also was his car accident just this past January??  That could have something to do with it, maybe his body is still healing or maybe something in his spine got damaged a little bit and is affecting his circadian rhythms.  A neurologist, neuroscientist, or neuropsychologist might be a good idea if you think that that could have something to do with this.

[Robyn Hood]

Thank you Allison so much for your reply to my long rant!  What kind of cancer did you have and congratulations to beating the beast! Did you have radiation therapy? Jan. 11, 2013 was the accident.  As you stated... be extra vigilant…function as normally as possible... He does with health, vitamins, works out, food, etc but nothing in regards to sleep/rest.  I am at the stage of having to let go in some areas, he is 19 and if he will not take that extra step to make sure he gets up then so be it.  After my rant here we discussed the alarm issue and I let him know I will not wake him no matter what. Me being completely out of the equation may jump start him straight into maturity with the alarm clock. He turned 19 in Dec. and started college, he is doing amazing as a survivor and radiation to the brain is a beast.  I wonder sometimes, is it too much.  Maybe college is too much for now.  He asked during winter break to quit school, and cried when he said, I will go because I do not want to let you and Dad down.  His workplace now is where he wants a career, he told me there is no college degree required to become manager. His argument is that he could be working FT now and getting "seen" by the company instead of at college for 3.5 more years when this is where he wants to stay.  It is not like with his processing skills he can do any of the things that he could prior to the tumor.  So he IS limited and loves where he works.

And LOL at a counselor, absolutely not, no way.  He will not do it, I tried this past spring again. He went when he was younger after the surgery & he owned the sessions by not speaking to the therapists.  He wouldn't say a word as to say, I don't want to be here, at age 7, 8 & 9.  I quit work the moment he was diagnosed and refuse to work until he is on his own. SO with that, I give my all to him, communication, support and love so I can stay aware and him able to vent as best through some of this pain he has endured, without enabling him, and trying to understand what is that fine line like I said of what is actually the radiation that has destroyed brain cells, and what is just simple 19 year old behavior.  He swears to me he is not depressed, he is fine except for those days he will sleep until 3 or 4. He slept til 4 today, as soon as he awoke, chipper and all yappy.  I discussed all this at that moment, he explained again that he is just tired, all the time, and when he has no where to be, he prefers to sleep most of the day. So I have to sit with that and be OKAY that he is sleeping his day away on his day off.  He changes and his symptoms change every few years.  And like I said this started 2 years ago.  So is all this just one huge challenge for me, and he is fine considering?

[Elizabeth Allen]

Hello Robyn!

I am a medulloblastoma survivor of 9 years, and although I can't say I have experienced the extreme sleep patterns your son has been going through, I do know that, just as Allison was saying, I need a good amount of sleep to function. I need at least 7 hours to function, preferably 8, and anything more than that is always a bonus in college. I would say, however, that I probably don't sleep more than 10 or 11 hours in any one night (and that would usually be on the weekends). This is probably because I try to keep as regular as possible a sleep pattern throughout the week. Sometimes keeping that regular pattern, and keeping your "internal clock" set regularly, is all that needs to happen. It seems like getting your son to this point may be the difficult piece. Either way, congratulations to him for beating all the obstacles he has faced so far. I am sure you and he will be able to work through this struggle, as well! 

[Robyn Hood]

Hi Elizabeth!

Thank you so much for your reply.  I scanned through your posts and I am very impressed with your dedication to your health.  It is refreshing to see.  I see that you are currently in college and obviously doing well!  We are at the point of withdrawing him from college which will be next week. I don't think he can handle work and school, and he chooses work over school right now, because of what I said in previous post.  I am trying to find survivors with long term side effects that may start 7 plus years out.  I feel he has hit a wall with fatigue, where others may be losing their appetite per say.  And then others like you may be just fine.  He has always done amazing, and something is just off, I can't place it.  If you have any NEW side effects you would be willing to share, I would love to hear about it, no matter what they are.  I assume you had the standard 35 radiation treatments?  Again, thank you so much for your reply, the past year has been so frustrating because I feel so helpless with it all.  I have not felt this way with him in a very long time.

[Elizabeth Allen]

Hello Robyn! I apologize for taking so long to respond to you! I did have the standard 35 radiation treatments. In terms of new side effects, nothing has shown up for me in the last few years. In general, I have been pretty lucky in that sense. I have experienced a slight hearing loss in the upper frequencies, but that has since stabilized. In junior year of high school (so about 4 years off treatment), a "cavernous malformation" (cluster of abnormal, tiny blood vessels) showed up on one of my brain MRIs as a rare side effect of radiation treatment. It was noncancerous (as all malformations are), but it was removed with brain surgery, regardless. Other than that, I haven't experienced any side effects recently.

Best of luck to you and your son! I hope you find the answers you are looking for.