I hate the start of these new sections of treatment… mainly because I don’t know how Jesse will react to the drugs they are giving her. One of the side effects (all be it a rare one) is sudden death. Yippee Skippy.
This morning Jesse and I will head to clinic to get her consented to be part of a study on the antibody. Then a stop for EKG and Echo-gram. Next week we’ll have the bone marrow, MIBG, and CT Scan.
Our doctor gave me the consent to read ahead of time. I hate the wording of these things. It’s “our choice” that Jesse participates. Some choice we really have in all this. If we don’t do the antibody, we get to live with the guilt of having not tried it and her dying. And then the whole section on you will not be compensated and you or your insurance will have to pay what we won’t cover aggravates me too. I’m so glad that everyone is making a stinking profit off of my 2 year old daughter’s fight to live. I have also been downloading EOBs this morning from our insurance company. CHKD has tried to charge over $1000 a day that we did radiation… Interestingly our insurance has only agreed to pay $150-300 of any of it. And that doesn’t include the anesthesiologist… They bill separately.
It’s just so frustrating on so many levels.
And then to read the side effects… it really makes me want to run screaming in the opposite direction. Well off to clinic we go…