26 August 2003

As you know, Liddy's cancer has been particularly resistant to all of the chemotherapy drugs that have been used against it and it has metastasized to her lungs and her brain. It is relentless. As painful as the 8-day chest tube process was, it did not work. She now has as much fluid (if not more) in her lung lining than was there before the procedure was done. This makes it increasingly difficult for her to breathe when walking. (Amazingly, biking continues to be fine.) The fluid build up is in response to presence of the tumor. When she is released from the hospital, it will be with a portable oxygen unit. She has referred pain in her shoulder from one of the lung tumors, which apparently is also compressing her laryngeal nerve, giving her a weak/soft voice. 

We (Liddy, Tom, Bev and Bruce) met with her oncologist, Dr, Keohan, very late yesterday afternoon. We had many questions about various treatment plan options given where we are with this wretched disease. Each option takes a certain amount of time to determine if the cancer is responding to it or not. This typically involves two cycles of the treatments followed by CT scans, MRI scans, and/or X-rays that are contrasted with the base-line tests to determine the effectiveness of the particular option. Furthermore, each option comes along with a set of side-effects that can have a significant impact on her quality of life. Some side-effects are much more serious than others. Most of the options before her are physically, psychologically and emotionally demanding. Lastly, the outcomes of the options against her cancer are unknown, given the lack of history of the use of most of the options with adults with her Ewing's sarcoma/PNET. 

Time. Quality of life. Potential outcome. These difficult and complex considerations where immediately driven home when Dr. Keohan told us that we are dealing with months, not years, as Liddy's life expectancy. Given such devastating news, we take life one day at a time, as the gift it is.

Liddy elected to begin chemotherapy last night with toptecan and cyclophosphamide (with appropriate pre- and post-medications) to attack the tumors in the lungs. If these drugs work, we will rejoice and give thanks. If not, some difficult decisions lie ahead. We ask for your prayers and thoughts for Liddy and our family to guide her and us through the quality of life and life expectancy issues.

Hopefully she will be released from the hospital either Thursday (the 28th) or Friday. Her ability to actually use any specific option after these drugs is limited by her general health, her blood counts, etc. Some of the options that would be considered are: harvesting stem cells 10 days after chemo is over in case she would undergo High Dose Therapy (HDT) using thiotepa, melphalan and etoposide; undergoing either whole brain radiation or stereotactic radiotherapy to treat: (a) the tumor near the occipital lobe (b) any potential material left behind during the neurosurgery, and (c) any micromets that might exist in her brain; using radiation and hyperthermia to deal with the lung metastases; using vaccine-based immunotherapy to deal with her sarcoma; and palliative care.

Copyright © 2003 The Shriver Family: Last modified: 01/06/04.