October 30, 2003
First E-Mail
Hello everyone,
This e-mail feels overdue, I am glad to be finally sending it, although it is hard to know exactly what to write. When I thought about how we were going to explain Joe's illness to his first-grade classmates, I pictured using a scale, with weights, to represent the different parts of his situation. It is an image I have come to like; his scale is currently looking pretty good to me.
On the one side is his cancer - and the scale tips heavily down on that side: Joe has been diagnosed with Ewing's Sarcoma, a type of bone cancer. On Tuesday, October 14th, I felt a lump on his left forearm. He was seen at Iowa City Family Practice where they first talked to us about Ewing's. We went from there to the University of Iowa Hospitals and Clinics and received a preliminary diagnosis of Ewing's that was later confirmed through a biopsy. If you would like to read a general overview of this type of solid bone tumor, you can do so at the following website: Also on that side of the scale is the heavy weight of fear. I am often afraid. I am afraid of the pain of treatment for Joe, I am afraid of the uncertainty of the results, I am afraid he is going to die, I am afraid of feeling helpless.
On the other side of the scale there are many weights in his favor, the addition of each slowly causes the scale to shift and the sum total causes this side to outweigh the other.
Our blessings feel almost overwhelming. The first is Joe. At 7, he has an enviable ability to live his life one moment at a time. So even those horrible moments pass almost completely and he is on to the next one. And he continues to make us laugh practically every day. [At the hospital, after his fifth basic exam-by-a-different-medical student, he asked the student why couldn't the first one write all the information down and share it with the others?] He is also in otherwise excellent physical health.
The next is that we are here in Iowa City, with first rate medical care available to us just minutes from our front door. There are approximately 150 cases of Ewing's diagnosed in the United States each year - the doctors we are working with see 5-10 of those each year which puts them in the expert category. Dr. Buckwalter is Joe's orthopedic surgeon, Dr. DiPaola is his pediatric oncologist, and Mary Schlapkohl is his pediatric nurse manager. I mention them by name because they have already been so great and all the other staff is as well. The cancer itself has positive aspects. We are thrilled to report that his Ewing's is localized to the lump in his forearm and that all his "staging" tests came back clean.
The treatment he is receiving is the current, well-developed standard for this type of pediatric cancer. He is participating in the Phase III national cooperative study for the treatment of Ewing's Sarcoma. Under this protocol, he will receive chemotherapy every three weeks for 14 cycles (this will take us to the next school year, approximately). He just finished his first cycle, 3 days in-patient. It went well and his discomforts were minimal. His next three scheduled cycles begin November 14, December 4, and December 26. This treatment regimen has a good track record; the doctors have quoted a cure rate to us of 65%-70%. For those who want more detailed information about this, you can look at the protocol here. The plan is to shrink the tumor with the first four cycles of chemo and then do surgery in January. The next time we will receive detailed information about the state of the tumor is currently December 15, 2003.
The love and support and kindess that is completely surrounding us all the time is the biggest weight on Joe's side. It is already impossible to completely list out all the wishes, prayers, visualizations, distance reiki healing and good energy Joe and our family continue to receive. Our families are right here with us, even those that live far away. Our friends and and work colleagues have outdone themselves in their support. All kinds of people in our various circles of community give us help.
I can't really explain fully what a gift it is every day that we receive the best that people have to offer. My weak analogy is the day I went into the secretary's office at Hoover School, where Joe and Seth are students. There was a bowl of miniature candy bars on her desk, and when I said, "oh good, I could use some chocolate," she opened her desk drawer and gave me the whole bag. It has been like that every day. The Hoover community is also a significant weight on Joe's side and for our whole family. They have already made it possible for Joe to go to school whenever he can in a seamless, "normal" way. And all of Joe's friends keep him solidly in the every day world of first grade.
For those who like specifics, the next thing to picture is that the tumor responds to the chemo with minimal impact on Joe's otherwise healthy body.
We will have extra help in the side effect arena as well. Joe will receive Healing Touch therapy from two very qualified practioners here in town, in an effort to minimize the side effects of the chemo. The NIH is currently funding a randomized study on Healing Touch for chemo patients at the U of IA Hospitals. While Joe will not be part of that study, we are lucky that his practioners are the two retired nursing professors conducting the study. That therapy will begin before his next round of chemo. From what I have already seen of the side effects of chemo, (Joe missed two days of school this week), I am encouraged at the possibility of reducing those effects.
This is much longer than I intended. It is hard to adequately express our gratitude for the many blessings in our lives. I love thinking about this e-mail list and picturing you all at the same great picnic (or perhaps baseball game) together.
Thank you very much.
Love,
Jenny, together with Tom, Seth, Joe and Happy the dog
October 29, 2003
Welcome to Joe's Web Page
Here is Joe's Web Page. Many, many thanks to Joe's brother, Seth, and our friend, Ray, for putting this all together. Here you will find all of the update e-mails to date, pictures included (they are in reverse chronological order). We use this page to keep everyone up to date on Joe's journey. We send out e-mails when the page is updated. Family and friends who are not on the update list and would like to be can send an e-mail at jenniferbritton@yahoo.com.
Thanks to everyone for all of your love and support.
Joe, Seth, Tom, Jenny and Happy the dog.