Today One Month after my daugther passed away, My wife and I still missing her. We are still recovering from the sadness. So i would like to dedicate this song for those in same situation like us. This song is very thouching.
HLH - Hemophagocytic Lymphohistiocytosis
2 years old girl had HLH disease in Malaysia. She was treated under HLH 2004 Protocol treatment. This blog to share the experience with this Rare Disease. Hope this info will help others in this world especially in Malaysia. She had passed away on April 2011.
May 3, 2011
Ending
Finally Dr. decided not to do anything with my baby. Their plan were just to support her, Dr. did not want her to suffer more. Our side as parent after had discussed with Dr. we had to accept this decision even though it were very hard. We had to let her left us because we did not want to be selfish and made her became more suffer.
She passed away on April due to the internal bleeding.
Jan 24, 2011
No more chemo
After was allow to go back. The doctor decided not to continue chemo for her. Now she only will be support if having problem. Since the HLH 2004 protocol is not response to her. The ANC value and Neut still very low. This show the result.
As a parent we are very surprize but we had ready for it. Not expect to be today.
As a parent we are very surprize but we had ready for it. Not expect to be today.
Jan 18, 2011
Lung infection Again
Started when she had appointment for chemo, but had to withhold because she got upper lip swollen. After a week giving antibiotic she was well. Unfortunately a day after stop the medication, she got fever. So she had to treat for lung infection for a week. It look okay. Suddenly her temperature spike again, so the Physician had to give her the most power antibiotic which is called ampho B. After a week she look find.
She was withhold the treatment for a month. As i can see her stomach become bigger again. I thought should be caused by limp and spleen enlarge. We only hope our child will get well soon on her lung, and the treament will start again.
It is really difficult time.
Updated
She just recover mean no fever and antiobiotic is off. No more nassal prone. Only monitor the oxigen level. Waiting for go back rest and come back for chemo again.
She was withhold the treatment for a month. As i can see her stomach become bigger again. I thought should be caused by limp and spleen enlarge. We only hope our child will get well soon on her lung, and the treament will start again.
It is really difficult time.
Updated
She just recover mean no fever and antiobiotic is off. No more nassal prone. Only monitor the oxigen level. Waiting for go back rest and come back for chemo again.
Nov 13, 2010
Update November
My daugther had infection at CVL again. This time she responded to cloxa antibiotic stayed at the ward for a 9 days. During admission she was transfused blood component (FFP) and also was given VP 16. She seem very sensitive with CVL. Even though we do the dressing everyday, but still can happen.
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