Someone dropped the ball on this one.
Yesterday afternoon when my daughter Elizabeth and her husband Ben were told that the Wilm’s tumor was actually of the unfavorable type they were handed information regarding two Phase II clinical trials with Stage IV unfavorable Wilm’s tumors, then told to go home and read them before Monday when treatment would start.
Beth has been poring over the information, reading about how this trial may or may not benefit her child because the combinations of additional chemotherapy medicines are experimental. The potential side effects are horrendous to read.
We are well aware that the survival rate for Wilm’s tumor and other childhood cancers is higher now than 30 years ago because of clinical trials like this one. David and I had to make the decision about a clinical trial study when he faced oral cancer four years ago. The decision was easier; it was a Phase III instead of a Phase II, and erbitux had already shown great promise in preventing a reoocurrance in colon and oral cancer. But at least the radiation oncologist David had explained what would happen either way; whether David participated or not.
NO ONE EXPLAINED WHAT TREATMENT JACOB WOULD GO THROUGH IF HE DIDN’T PARTICIPATE IN THE TRIAL.
This seems like a huge omission to me. How can a parent make an informed decision about their child’s health care without all the information available to them?
The doctors she spoke to who are handling Jacob’s care are soon heading out of the area on holiday vacations. She is supposed to head to Iowa City on Monday to begin Jacob’s treatment, treatment that MUST be started by Monday if he is to participate in any study. The parameters of the study require that treatment begin within 14 days of the surgery, and the surgery was on the 20th.
This seems an impossible decision for parents to make: hit the cancer hard and fast with a combination of drugs that is still experimental, or use the standard treatment that has a 40% survival rate. Either way, if it doesn’t work, live with the uncertainty that the path you didn’t choose was the magical one that would save your child.
Today’s prayer seems simple; That Beth and Ben hear from the doctors and have a semblance of peace about the next step in Jacob’s journey.