***HELP NEEDED DESPERATELY***
My precious daughter was unfortunately diagnosed with Multiple Hepatic Adenomas in November 2021. She has currently got 12 of these tumours in her liver. In January 2022 she had a liver resection, as the largest tumour was hemorrhaging at the time. The right half of her liver was removed. The resection was carried out by two surgeons, during a 5 hour operation at Manchester Royal Infirmary.
At the time of the surgery she had a total of 10 tumours, the largest measuring approximately 9cm. Within the right half of the liver which was removed, there were 2 more tumours as well as the largest one. Now, instead of having 7 remaining tumours, she has a total of 12 tumours. The remaining tumours have not only grown but have further multiplied.
More recently my daughter has had 2 embolization procedures carried out at St James's Hospital in Leeds, to treat the two largest tumours, as they had been hemorrhaging. The embolizations were done in February and April. Unfortunately the second embolization resulted in some complications. The capsule of the largest tumour, which measured 11.3cm before the embolization, has ruptured and the tumour has gone into the capsule of the liver.
Unfortunately, as my daughter's condition is so rare and complicated, it was discussed at various MDT meetings at various hospitals in the UK, including Cambridge and Leeds last year following the resection. We decided to go with St James's Hospital in Leeds for the embolization, as it was closer to home than Cambridge, both places being two of the top liver centres in the UK.
We have recently been told that any further embolizations will not be possible for her, due to the complications and also the level of pain that my daughter has been in. She was totally bedridden for over 2 months following the last embolization, due to the acute pain and sheer exhaustion. She has been on palliative level pain medication since last year. More recently her pain level has gone to an extreme level. She describes her pain as feeling as if someone is stabbing her in her liver at times. No doubt you can imagine how incredibly distressing this is for a parent to hear.
Sadly a liver transplant is not an option for my daughter. She has unfortunately got some serious underlying health issues, which would increase the risks in any further operations on a huge scale, such as a liver transplant.
● In November 2014 my daughter unfortunately suffered from an extremely rare type of stroke - Cerebral Venous Sinus Thrombosis. One third of her Superior Sagittal Sinus vein was blocked with a massive clot. She was so lucky to have survived that stroke. One of the main causes of the stroke was a Protein S deficiency. She has been taking blood thinners since the stroke, initially Warfarin for many years and then switched to Apixaban.
● My daughter's lung quality is also very weak. She suffers from extremely bad asthma, to the point that she was about to undergo a very invasive procedure on her lungs just before we were hit with the covid pandemic. She was due to have Bronchial Thermoplasty to help open up the airways in her lungs but she never managed to get it done due to her extensive shielding period from covid, followed by the diagnosis of her liver condition taking precedence over everything else.
Therefore, due to both of the above reasons, all the risks involved in a liver transplant would be far more heightened for her.
Earlier this week, we were given some devastating news in that the largest tumour is now compressing the outgoing venous flow from the liver. Potentially, with further growth of the tumours, the blood going into the liver could also be compressed. This would ultimately result in the liver not functioning properly at all.
As a desperate mother, I am now trying to reach out to anyone around the world who may be able to provide any other kind of treatment, to give my daughter some quality of life. Even some minimal level would really be something, as right now she has no quality of life whatsoever.
My daughter is in constant severe pain, even though she is on palliative level pain medication, which has recently escalated further and become excruciating. She suffers from extreme fatigue and her energy levels have recently totally plummeted. She is bedridden now again for the majority of each day. She is unable to walk very far and has to use a wheelchair.
We urgently need to find anyone who has been in a similar situation, suffered the same condition and has managed to come up with a solution. We are desperately looking for help, as we are quickly running out of options. Please can someone help to improve my precious daughter's quality of life?
Explaining transplant to our 5 year old daughter 
My wife has a Bilirubin of 43 which has increased from 16 in February. 
My mum, advice greatly needed
Advice needed please for my dad
Liver resection planned
