Purgatory

Traditional Catholic teaching represents that there is a place after death that is neither hell nor heaven. It is a place where a soul rests and is prayed for while it awaits final ascensions to heaven. Angela sent this picture to me shortly after our meeting with Maris. It has an other-worldly quality to it, to me it looks like Christi is either emerging from the light or is willingly submerging into it. Nonetheless, we are currently caught somewhere between heaven and hell.

The disease has responded to treatment,(YEAH) but, unfortunately at a high cost. Her bone marrow has been extremely suppressed and her counts are not expected to recover for some time yet. Further, we have attempted most available treatments and it has not rid her of the disease, so we have nearly run out of promising options.

One final option may be to attempt BSO/L-Pam. This is a toxic combination that has been used with some success against NB. As of this writing this is our next step. It is a closely monitored treatment that Christi is not really eligible for at this time, however, Dr. Maris has agreed to attempt to get a one time compassionate release for her from the FDA. The reason for the caution is justified by the fact that there have been some deaths associated with BSO/L-Pam treatment.

We have faced mounting pressure from our caregivers at CHOP to keep Christi in Philadelphia where she has access to supportive care. At this time we have made the decision, given her dire prognosis, to bring her home for as much time as possible. Although this has a high risk associated with it, we feel it is the best decision. She continues to feel very well with few outward signs of disease.

So I expect that they will be flying home today with Eden and her family. We hope that she will be in school tomorrow.

Shayne