u/Ordinary-Force-3871

I use to love the me time when kids use to be asleep or when they are at grandparents or out to play. Lost my daughter just 2 days back and now this silence is killing me. I have a son too but I just don't know how I will spend the rest of my life. I am searching for her every time in the whole house. I know I will never be able to see her but I still keep searching, thinking she will come and hug me. I don't know if this feeling will ever get better with time or no! But it's the worst ever. My world collapsed. I don't know how to survive without her. I don't know how to stay happy. I just love her so so so much.

Fighting with cancer since November 25. After completing 7 cycle of chemo her tumor was gone but she developled. Irreversible liver damage. The damage was so fast that my child expired. My 8 years old daughter expired and I am. Missing her so so so much. I don't know how to live the rest of my life without her. I just love her so much and I am missing her a lot

After a long fight to cure her and when doctors told now nothing can be done we went for palliative care and we knew what's in store for us. Yet we use to give medicine with some hope. Now she has stopped taking feeds. It gradually decreased. She just has one thing in the whole day and is sleepy most of the time. Today she refused the medicine also. She just threw it out of the mouth. Now I am sitting and thinking why should I give the medicine when even after giving the condition is getting worse day by day and I am just watching. If the nature is working against us and we have already given up because we had no choice why I am even trying to put those pills in her mouth.

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I have always taken care of her medicine her diet her health since her birth as she had a birth defect. We tried are very best in every way but God has other plans. It's the worst to see her go everyday little little. But again have no choice.

My daughter is 8.5 years old, she was born with birth defect got a liver transplant done when 4 years old. 8 years she was detected with blood cancer and during the chemotherapy she started rejecting the liver. Now she has so much high billirubin. Doctor tried to stop but her body is attacking the liver. Only option is re transplant. Re transplant will increase her life by few years and it will be filled with doctor and blood tests. I fear loosing her I fear I might not be the same again. I fear when I go home I will miss her in every part of the house, I want the time to stop here. The moment that I am hugging her and sleeping. I want things to just stop because the thought that I might not get to hug her is scary. My life revolved around her.. I don't want to go through this. A part of me wants this transplant done. But then the doctor did tell us once chronic rejection happens chances are more it will Happen with another transplant as well as her body has learnt to attack the organ. It can and cannot. Why do I have a choice. Once I made a choice of transplant and ended up giving a painful life. She got cancer as a side effect of transplant. She faced life threatening side effects of chemo. Doctors also gave a word she might not survive but she did. Now again liver failure. Why why why. All these treatment have side effects and ome thing leads to another. I don't want to loose her but I don't want to give her more pain as well.

My daughter had a liver transplant in 2022 when she was 4 years old, she faced 3 rejection was on tacrolimous, mycept and steroids. After 4 years she got lymphoma cancer due to ebv virus. Doctor says ebv virus is very common and 90℅ people are affected by it. Even in transplant rare 5% people develop cancer tumors. After 3 chemotherapy she developed life threatening side effects. After staying in hospital for 24 days she was stable and we got her discharged. She couldn't walk on her own. Slowly slowly she gained her health and we started with other chemo drugs. After completing 6 chemo session she suddenly developed jaundice. We got scans done now the tumor is completely gone but she started rejecting the liver. Doctor were shocked as in between chemotherapy the immunity is low and no one rejects the organ but she did. Now her billirubin is high. Got various tests done but levels are not coming down. Doctor says she might need a re-transplant if she doesn't stop attacking the liver. Again she is admitted in icu due to high ammonia in blood. She was unable to think and got violent and showed confused behavior. She is only 8 years and in so much pain. If this liver doesn't work and doctor suggest a re transplant me and my husband are not going to opt for it. Feels like we are just giving a life of pain. At times I sit and wonder if after a few more years she would have required a re transplant I would go for it. She is not emotionally stable, irritated and to small to go through so much pain. She is not able to process it. She is missing her life not able to enjoy. We don't have the courage to go through re-transplant. We feel like we are just stretching her life. Since December when we came to know about cancer it's been a rough road to walk on.

Edited: the doctor told us that there are high chances of chronic rejection even in re transplant if once a person has chronic rejection. Please help me. Are there people who are living good after re transplant