In denial?
 

Hi, my son was diagnosed with severe aplastic anemia at the beginning of July 2013. He is 19 and was expecting to start university this September, but we were informed almost immediately that that was not going to happen.

Since then he has been getting weekly blood and platelet transfsions. We were all tested, but none of us is a match for him. The doctors were hopeful that his sister might be a match, but sadly no. My son id quite laid back about his condition. He seems to have little interest in learning anything about it, and acts as if it is nothing. In some ways it is good, because he is quite relaxed, and when he found out his sister was not a match, he just said "oh well, never mind". It means that he doesn't seem to be worrying, but on the other hand, he is not facing the reality of what lies ahead. Is it just better to leave him be in his relative ignorance so that he doesn't get depressed. He doesn't seem worried about his future like many others here on the forum. I am not really sure how 'aware' he should be. The doctors are not giving a huge amount of information. He is just beginning to ask questions, and they are very careful to answer only the questions he asks.

The doctors have him on the list for a transplant and are currently doing more detailed testing on his bone marrow to deternine how likely he is to find a donor quickly. They are not yet considering ATG treatment, as they have said that BMT is his best option at the moment.

Would be grateful for your thoughts on whether you think his approach to AA is usual and if I am worrying unnecessarily about his apparent lack of interest.

Thanks

denial -
 

Hi - Boy have I been there!!! I have had either aplastic anemia - then MDS - and now evolving into AML for 20+ yrs! I have had ATG, Vidaza, Decadron - Rituxan - and now going to have a transplant if I am fortunate to find a match. Do not be upset that none of the family matched - I dont know the exact percentage but family is not always the match. There are many that find 10 out of 10 matches thru the seaches. I have learned so much again - you are always learning more and more - research is consistantly goin on - but nothing cures but the transplant. All the treatments are for prolonging - they are good dont get me wrong - like for myself it gave time for transplants to be researched and have better outcomes than 10 yrs ago. I would ask the doctors if that is how he should be handling it right now - everyone is different. Be supportive - treat him the same - try to know when he needs extra loving and understanding - spend some special time with him - those are the things that mean alot to some one going thur this - just my feelings. Bless you alll - Susan

Kleen - My son is 17 and is the exact same way, although right now he's doing good so it's kind of a non-issue. But he doesn't worry about it at all, he's had to hug me when I cried.

I think it's the age, teenagers don't think about the future too much (why else do they jump off hotel balconies into the pool?). I've heard their brains aren't really cooked until about age 24. Like you said, on one hand it's good that they don't stress about their illness (like me!), but on the other hand it's like you want them to understand the seriousness of their illness.

So sorry about him not being able to start University. Is it possible for him to take some online classes?

Hello Kleen, sorry that you have become a member of this club. I honestly think that it may just be his coping mechanism.

I have a 19 y-o son who has been fighting SAA since 2004. He initially did well and then had a relapse and pretty much has been see-sawing with this disease. Well believe it or not, my son has ALWAYS had that "whatever" attitude! Pretty much from the get-go, but I've learned that he actually knows exactly what is going on and does understand that it is serious. He just doesn't worry the same way that I do. He's told me repeatedly that worrying won't change a thing so he just goes with the flow of things.

I agree with edithr that the best thing to do is just be supportive and ready to discuss anything he might want to discuss in his due time. I believe he'll be asking when he's ready.

Hang in there and God bless...

Thanks guys, it is nice to hear that my son's reaction seems pretty normal. I think i do enough worrying for both of us. I have suggested he lok for online courses but had a pretty luke-warm reaction from him. I guess it has to come from him...

Thank you again for all you kind words. It is nice to have some support! It seems like itnwill be a long road ahead...

I am 53 and my reaction was at first shock, then....oh well, at least its not terminal, and it could be worse, it could be degenerative like, MS or Parkinsons, or dementia..... I am aware that its serious, but personally I just want to get on with living - they are researching all the time and I hope that one day they find a cure. I prefer not to trail the internet, being a clinician I know that a lot of research is based on very few people. I think your son may just be coping the best way he knows best? and....at that age they don't really have the same concept as us oldies! - may he always be like this, and just keep telling him he will beat it....I believe in self fulfilling prophecies. best of wishes to you all xx

Hi, I'm 19 and was diagnosed at 12. From day 1 I had the attitude that it's going to happen whether I worry about it or not... What's the point in getting stressed out and worried over something that I'm completely powerless over. I hope things work out for your son :) x