Today was rough for us mentally and honestly, emotionally..... although Matthew seems to be in high spirits which always brings smiles to our faces. Matthew was discharged late Friday evening since he didnt present another fever and his AT & ALT liver levels had began to drop from 563 to 510 that morning. This morning he had follow up labs to determine if his liver levels were low enough to start back up treatment. While waiting for that call, I got another and unexpected call from my work. My HR was nicely saying that I had to either go back full time, take Family Leave of Absence or go hourly instead of salary. Do not get me wrong, my job (I work remotely) has been more then generous, patient and understanding during this time, so I do not, after 4 months, question their position and am just grateful they gave me this much time. However, in the midst of this call, I get a call from CHOC. I ask my HR to hold a minute to answer. Its Dr. Lin, Matthews doctor and she is calling directly. Not a clinic staff, but his Oncologist. This cant be goo...... His AST level has stayed the same of 386 but his ALT has climbed back up and to 600 this time. This is scary to me since he has now been off his Distbnib for nearly two weeks and off any other medication that has liver side effects and delayed his ongoing treatment since that is what they believe was the cause of the climb. Being off treatment and or several long delays, leaves him at risk of the leukemia becoming uncontrolled and or building a resistance to the treatment in all. After receiving this news, I had to get back to the call with my HR about the option of loosing nearly half of my income if not more or not being able to be there for Matthews treatment and care. Again, not the best day for me. While admitted, GI consulted with us per the request of his Oncologist and said that if the increase levels occurred again, or they did not get better or even worse, he would be inclined to biopsy because each time this happens, pieces of his liver die and do not repair(permanently damaged). He doesnt want to wait to the point where treatment and or transplant is no longer an option due to a damaged liver. Dr. Lin (his oncologist) is having Matthew continue with labs every other day and said she will consult with his GI again as to next steps. In mean time, they are keeping a very close eye on him. It brings some ease, that they are on top of this. Our decision for my work is not a hard one, as the health and care of our children much-less a sick one is and will ALWAYS be first. It just means the rough road just got a little rougher and financially tighter.
Posted on: Tue, 20 May 2014 04:08:15 +0000
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