Hi everyone,
I am disappointed to let you know that Joe's pathology was not the clear one we wanted. There was a significant percentage of viable cancer cells in the tumor they removed, and the margins (of the tumor) were positive for cancer cells.
So, Joe will most likely start radiation to his forearm along with his next round of chemotherapy. His next round of in-patient chemotherapy will most likely be from January 30 - February 1. The radiation would continue on an out-patient basis for 10-14 days.
Normally, I would wait to share until I could speak more definitively, but I also want to keep everyone in the loop. We will meet with the radiation oncologist, Dr. Buatti, mid-week next week. He is the director of radiation onocology at the University of Iowa Hospitals and Clinics. I am hoping we meet with the orthopedic surgeon again as well.
It is a huge comfort to for all of us to imagine and feel the large circle of love and good wishes that surrounds us all the time. You are all a part of that and we are grateful.
Love, Jenny

Hello everyone,
Joe's surgery yesterday went well. It started at about 7:15 a.m. (our day started at about 5 a.m.) and finished about 11:15 or so.
We met with Dr. Buckwalter after he was done. His pronounciation was that it went well and that Friday was a "good day." They removed 7-9 cm from his radial bone and replaced it with a bone graft. He described the bone graft as a good fit. (yes, I know I said it was the ulna bone, more on that in a minute). Joe's pain level has been very managable so far - morphine post-op yesterday-just plain Tylenol has been enough today. He has been keeping his arm very still, only has pain when he tries to move his fingers. It is far to soon to tell if all the hand function is still intact, but so far so good. He can move each finger and seems to have sensation throughout all the fingers. He will be in a splint until any signs of swelling are gone and then in a cast.
We will get the results of the pathology report at his follow-up appointment sometime in the next two+ weeks. Ideally, we want to see no viable cancer cells remaining in the bone they removed. If that's the case, then onward with the chemo. Percentages of "dead" cells about 80% are good, below that, we would have to decide what to do next (most likely radiation to the arm). For now, I am picturing 100% dead cancer cells.
I am pretty tired and home for a nap before going back to the hospital. Joe will most likely be in until at least tomorrow, maybe longer. So far, minimal fever, and he is eating fine today (fine in his mind since his day started with a Krispy Kreme doughnut). He will most likely be at home all next school week.
On my bone mistake, all I can say is that early on, I thought they said the ulna, and then after that, everyone always said "the bone" or "his arm" or "his forearm." Even the consent form said just "left forearm." (I went back and looked). So imagine my surprise when Dr. Buckwalter said the radius after surgery. It is a good lesson for me - nobody's perfect. And at the end of the day, the outcome is what's important and it sounds like it went well and we are all feeling good.
Again, we are SO grateful for all the blessings everyone sends our way, you are all keeping us afloat.
Love, Jenny, Tom, Seth, Joe and Happy

Hello everyone,
Happy and healthy new year to everyone.
Joe's 4th cycle of chemo is (thankfully) behind us and his surgery is in front of us. He was in from 12/26 - 1/31/03 and got discharged just in time to spend a nice New Year's Eve at home with us and his Britton grandparents. His five day chemo stay included an MRI under general anesthesia. The combination caused enough nausea that he stayed an extra day in the hospital, but has otherwise felt fine since then.
According to the MRI from 12/29/03, the tumor has shrunk approximately 40%! Joe will have testing done this week (bone scan, chest CT, x-rays) to continue to check for any metastases. Assuming there is none, Joe's surgery is currently scheduled for 1/16/04.The short explanation of the surgery is that we will say good riddance to the tumor, gently say good-bye to the radial bone in his forearm and welcome a bone graft where his radius used to be.
The longer explanation of his surgery is the majority of his left radius bone in his forearm will be removed to excise the primary cancer site. That bone will be extensively examined and a pathology report will indicate an approximation of how many (if any) viable cancer cells remained in the bone. That pathology report will take anywhere from one to three weeks. At that same time of surgery, a bone graft will be implanted to take the place of the radial bone. Joe's forearm will be in a splint for an extended period of time after surgery to optimize the bond of the graft.
[Joe's bone graft will actually come from a bone bank. I would like to take a moment to make a general plug for organ and tissue donation. For those of you who live in Iowa, do you know that just marking "yes" on your driver's license is not enough? You have to register at www.IowaDonorRegistry.org. I will confess that Tom & I have only just now registered while writing this e-mail.]
We met today with Dr. Buckwalter, head of orthopedics, who will perform Joe's surgery. (bio) The chemo will resume after his forearm is sufficiently healed, probably in early February.
Our prayers and wishes list feels long right now. We want Joe's tests to again all come back clear, we are hoping that Joe's tumor is 95%-100% nacrotic (not viable), we don't want to see any other cancer cells in the bone tissue from his arm or at the margins of the graft, we want the bone graft to solidly bond and we want his white blood count to stay high throughout. We are also hoping that no nerve damage will occur during the bone removal. There is a relatively good possibility that there will be some damage to the radial nerve in Joe's left hand, but it is not a certainty.
Joe is nervous about the surgery - and Tom & I are feeling optimistic but a little overloaded. In the meantime, before the 16th, we will enjoy our time at home. We will celebrate Seth's 12th birthday tomorrow (he was born at 12 noon). For those who like sending e-mail, you can say happy birthday to Seth at s.saeugling@mchsi.com. If you would like to send Joe an e-mail greeting while he is in-patient for his surgery, you can do so through the hospital's patient e-mail greeting service here. [Remember, he won't be there until 1/16/04.]
And, just to make sure everyone's included, this time the picture includes our dog, Happy.
Thank you all for your prayers and good wishes. We really appreciate them.
Jenny, Tom, Seth, Joe and Happy