[Dana]

Our daughter is awaiting diagnosis now. She is 14. She is a cancer survivor , she was born with retinoblastoma. She received chemo at  birth and then again at 2.5 yrs when the cancer escalated and tracked out of her eye. She has done great and has been cancer free over 10 yrs! During one of her survivor appointments she failed her exercise test… no one really thought much about it , maybe she just isent athletic? During that appt she refused to do a PFT . So , during the next year we thought she had allergies and took her to her pedi they gave her meds and I asked for a PFT she failed, we thought she just” was being stubborn”. We noticed a dry cough and she seemed short of breath.. she never complained until one day she said when she galloped her horse she was out of breath. I immediately got her to the pedi who immediately got her to pulmonologist who started all the testing…her CT showed fibrotic changes, ground glass ect. She has now had every test known to man which showed nothing and the last thing is the biopsy (open lung). Her says go easily down to 89’s but with rest will recover into 90’s. I think this will be latent chemo caused fibrosis , the life expectancy from diagnosis is 5 years. How do you tell kids this info? I am a nurse and I have answered her questions but offered no other additional. She has a slight cognitive delay from chemo also. She is also adopted. She was 8 mo old when we adopted her. The waiting is killing us even though we know the outcome. Transplant will be her only chance at survival …