Members ryansmumlondon Posted July 20, 2010 Members Report Share Posted July 20, 2010 My son was 14 when diagnosed with ALL leukaemia. He faced it with his usual strength and cheerfulness that was awesome to see. I had had cancer a few years earlier so he was confident he would be ok and so was i. My husband and i had separated 8 years earlier and Ryan wasn't very close to his dad. The hospital quoted an 88% total cure rate which seemed like good odds. We lived in and out of the hosptial from March until July when we had the news that the leukeamia had travelled to his spinal fluid so he would need a bone marrow transplant. They wouldn't tell us at that point what the survival rates were. We saw some kids on the ward leave healthily and one on the ward who had been in over a year since transplant with various rejection problems. Luckily Ryan's older sister was a perfect bone marrow match and he had the transplant in October. The chemotherapy that preceded the transplant and radiotherapy left him with severe neurpathic pain and he ended up on large doses of morphine but we were still sure he would be OK. I lived at the hospital with him all this time. Sometime in the begining of November he got a chest infection and was eventually transferred to the intensive care unit. He seemed to be doing ok and started with a breathing mask only. He was put on a ventilator and sedated about a week later as it was causing his body a lot of strain to breathe. At this point all his blood results came back clear of leukaemia. His oxygen levels were in the high 90%s and they were trying to wean him off the vent. They then diagnosed ARDS which has a 35% death rate. As he kept fighting the ventilator he was completely sedated and unconcious but i used to put cream on his skin which had been damaged by radiotherapy and massage his feet which he loved. The last thing he said to me was we're not going to get home for Christmas are we? On 22nd December his oxygen levels dropped and the hospital couldn't get them up again and told me to prepare to say goodbye to him. I called my husband who came but was rude and abusive to me in the hospital which was even more distressing. I held my boy in my arms when he took his last breath at 6.00pm. I can't explain how that felt, i told him i loved him and i've been slowly falling to bits more and more since. I told him i wouldn't let him die and i did and can't get over that. My 19 year old daughter blames me and is now smoking skunk everyday. My husband wants me to sell the house and leave but i don't wan't to pack up my boy's room yet. How do i start to deal with this? He would have been 16 on July 1 and all his friends still come over which sometimes i feel is nice but painful. They've all done their important exams now and are looking at going to college. He didn't get a chance to do any of that. My daughter has attacked me and her only interest in me is money for drugs. If i don't shell out she attacks me and one time i called the police and that has made our relationship even worse, even though we still live together. I just want my baby back and i can't cope. It's been six months but i feel worse than i did when it first happened. Link to comment Share on other sites More sharing options...
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