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Hairy Cell Leukemia - Mentally Challenged Son

Posted by @betz2468 in Cancer, Dec 22, 2011

My son age 41 going on four, severely mentally challenged, non-verbal (from spinal meningitis at 14 months of age) diagnosed with hairy cell leukemia. I didn't want to make him have chemo, can't explain why he is sick, he would not understand. Doctor says his blood levels are getting low enough that I have to make a decision
(his Dad is deceased so this one is all mine). If I do nothing, they give him three years to live. And they probably won't be good years as he will be susceptible to most anything, including more cancer of a different nature. I'm not sure what I should do for my boy. I love him, he loves his life and everyone that knows him loves him because that's just his nature - he just loves everybody. If I don't try the chemo, I'll feel like I killed my own son without trying if he dies. Yet taking him for these horrendous IV poisons just doesn't make sense to me either. I don't know what to do. Help! Anyone out there have a situation like this?

Tags: Cancer

bigluke likes this

Posted by @nwaegel, Feb 26, 2012

We faced a very similar situation with our dearly beloved son who had Down syndrome and was diagnosed with ALL leukemia. We chose hospice care. It was a family decision. We were fortunate to have input from friends in the medical field as to the side-effects of treatment and the prognosis for quality of life. We talked with a lot of people including some who had similar situations and chose a different path. Our son died 7 months ago. I miss him every day, but am very at peace with our decision. His last two months of life were filled with love. He died peacefully at home.


Posted by @betz2468, Feb 27, 2012

My heart goes out to you at the loss of your son. Only a parent of a child such as this realizes how much love they have to give and how much you love them "just the way they are"! I had told the oncologist "no chemo" when my son had his bone marrow. However I was not aware of "hairy cell leukemia" which can to thrown into remission for years. This has made my decision much more difficult. However, I feel I have to try to save my son's life. He will be starting a very low dose of chemo soon. I pray that God will allow him to go into remission and live a while longer. I have no clue what to expect but the doctor assured me that he may not even feel sick at all, possibly just fatigue. Praying that it goes well for him, as you - I'm doing what I feel I can live with and pray that God in His Mercy will allow my son some more years of his life - a life he loves. Blessings on you and your family. I would have done the same thing as you had Brent had the more difficult to treat leukemia.


Posted by @nwaegel, Feb 27, 2012

Thanks for sharing your story. I hope all goes well for you and your son. I'll keep you in my thoughts and prayers.

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