Posted in cancer, Jacob, Wilm's tumor

Cancer, clinical trials, and informed decisions

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.

Author:

Author, public speaker, and workshop presenter for community colleges, libraries, women's groups and for grief support groups, Hospice and retreats. Certified grief counselor and Senior Service librarian for the James Kennedy Public library. Popular public speaker and workshop presenter on the topics of writing, couponing, utilizing your creativity in everyday life, and finding hope in grief. "Coupon Crazy: The Science, the Savings, and the Stories Behind America's Extreme Obsession" was published by Familius Publishing in 2014. "Chemo-Therapist: How Cancer Cured a Marriage" and "Refined By Fire: A Journey of Grief and Grace" were released by Familius in 2014. "Mary & Me: A Lasting Link Through Ink," co-written with Mary Jedlicka Humston of Iowa City, was published in September 2015. Grief journal to be released in 2018.

4 thoughts on “Cancer, clinical trials, and informed decisions

  1. Have they thought about calling Sloan Kettering in NY and talking with a doctor up there to see if they will look at Jacob’s case and help answer some questions? I know many of the children from my area who are dealing with cancer receive much of their treatment up at Sloan. The doctors there work very closely with their local doctors here in VA and are able to handle some of the procedures here, but those they can’t, they go up to NY and receive their treatments up there.
    My heart just breaks for all of you. I don’t know how they can expect to slap parents with this news and tell them to read papers and make a decision ready for a plan on Monday with out talking everything out with them in a conference with all of the doctors on Jacob’s team. I know Elizabeth and Dan aren’t thinking straight right now, they have had so much handed to them. How can they possibly make these decisions when they don’t fully understand what is going on.
    Prayers for all of you that God guides you all to the treatment best suited for Jacob, and for the doctors to realize these parents need guidance in this unfamiliar territory.
    Kim in VA

  2. I, too, was going to suggest Sloan Kettering or perhaps St Jude. There is no way they should have been able to leave that hospital without someone (a doctor) giving them all the information they needed. The previous poster was right–a conference with all the doctors involved clearing explaining all treatment options was needed. I have a hard time believing that this happened at a children’s hospital. Pediatric specialists should know better! I will continue to pray.

  3. Mary—-My continued prayers are with you and your entire family during this tremendously difficult time. I hope that Beth and Ben can get some answers regarding all aspects of treatment for Jacob! jacki

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