Langerhans cells histiocytosis killed my lovely baby

by chong cs
(jb, johor,malaysia)


My daughter was a healthy baby, the symptoms of this disease started when she was about 6 months. But we thought all those were normal. Scalp problem, itchy. Fever and diarrhea, was due to her growing teeth. We went to see doctors for many times, but couldn't solve her problems. One of the doctor wrote a letter for us, he suggested us to send her to hospital for a check-up.

After 3 months, the specialist told us she diagnosed with Langerhans cells histiocytosis, a very rare disease. Her chances to be cured was 50%. I searched a lot from the internet, i knew what it is, some of the websites say the outcome for the patients of LCH, who are below 2 years old are poor. That means, no one survive....

When she was undergoing the chemotherapy, i hadn't never tell my parents about that, i was hoping she'd get well, and be the lucky one who survive from this illness!!!! But.... She'd gone after about 9 months of treatments....

I feel so regret, guilty.... Grief... Desperate... She was such a lovely, smart, and obedient girl. Though she was only 22-month!!! She understood what we said, she was so sweet to make me smile when i was angry even she was sick, and pain... I'm so sorry, baby... I'm not a good mummy... I'll repay you in my next life!!!!!!!!!!!

Comments for Langerhans cells histiocytosis killed my lovely baby

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Nov 03, 2014
Be at peace
by: Anonymous

I feel the same way, my daughter just passed away 3 months ago, she's been battling langerhans cell hisyiocytosis for almost 2 years, my daughter was 18 months when she was diagnosed.she underwent 3 different chemotherapy and nothing worked, until she develop another complication, it's a very rare disorder HLH. With both LCH and HLH, I know in my heart that she will not last long, until she developed a cardiac arrest on August 3, 2014. It's so painful that words cannot express how I feel, there is not a day , that I don't think about her, it's been exactly 3 months now, and I missed her terribly. Life will never be the same to us , but what's giving me hope is that knowing that she is in a better place and not suffering anymore. Be at peace, and trust in The Lord,

May 12, 2014
grieving
by: Anonymous

My niece was diagnosed with that illness at 17 months. She died 5 months later right by my sisters side. It's horrible. She grieves everyday. She blames herself for her death. It's something that's out of our hands. I think about my chubby cheeks as I called her, every second of the day. I stare at her picture on my wall. It's hard but we know now she's no longer in pain.

Feb 27, 2013
my heart is with you
by: Anonymous

Oh, I SO sorry for you... Of coarse you were a great Mom - you loved your girl very much and she knew it. My son got diagnosis when he was 16 months old and we had a touch therapy here, 2 years of it. So I know what difficulties and pain did you pass through. It is extremely hard - to watch you child suffering and have nothing to do but to hug him. She is very-very beautiful and smart (looking in her eyes). And it is definitely unfair she left us. God bless you

Feb 03, 2012
your baby is so lovely
by: juls

and it's all so sad,have just been told my baby girl has it she is 9 months old am heart broken

Apr 29, 2011
I know how you feel
by: Anonymous

My little girl also died from LCH. She died two months ago at the age of 5 months. I know how you feel.

Mar 08, 2011
Words of sympathy
by: Anonymous

I'm so sorry for you loss your little girl is so beautiful rest in peace

Mar 02, 2011
thanks...
by: cs

I miss her. That's what in my mind....

Feb 15, 2011
your beautiful child
by: Anonymous

Please go easy on yourself...you were facing a terrible situation. I'm sure you did the best you could for your beautiful daughter.

I lost my son six months ago. He was sick for two years before he died. Caring for someone who is so sick is heartbreaking and difficult. You are only human.

I'm sure she is looking down on you with love.

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