I and my one year old baby both have LFS. Late last Fall my baby was diagnosed with Adrenocortical Carcinoma. Since then we have been in the hospital more than out as he had surgery and started chemotherapy where he’s inpatient for five days. Then, so far after each round of chemo he’s ended up back in the hospital for neutropenia. Those stays have been the longest, with the first and second being for ten days and the last one just recently being for sixteen days. Any fever sends us to the emergency room. Any time he can’t keep his hydrocortisone down requires a trip to the ER by ambulance. It’s been really rough but we keep fighting for our precious baby, and pray for the day he will be NED.
Read more stories from the LFS community on the Living LFS blog.
