I woke up early to get ready for my drive to Columbus, Ohio for Jason’s visit to the James Cancer Center at Ohio State University to visit Dr. John Byrd, one of the leading specialists in the treatment of CLL (chronic lymphocytic leukemia) the cancer Jason was diagnosed with a little over four years ago. We had waited over three months for this visit, and I was filled with anxiety I didn’t realize was even there. Not long after being in the shower, the buried feelings crept to the surface. I had to cut my routine short, feeling as if I might pass out. After a quick exit to lay down for a few minutes and gather my composure, I felt I possessed enough nerve to continue with my day. I simply didn’t know what to expect, or what the outcome of this visit would be.
The ability to make this visit was a precious gift. When we were first referred to Dr. Byrd, our insurance did not cover the appointment. For most doctor visits, this might be a non-issue, except for the fact that he highly recommends expensive genetic testing to help him determine the best course of treatment, should any be necessary. Fortunately, our insurance underwent some changes which allowed this visit to now be considered in-network. That was the first major victory.
Upon our arrival, we were efficiently directed from one place and one person to the next. The process was all very quick, and I felt grateful not having much time to focus on my surroundings. One of the more difficult aspects of visiting the Simon Cancer Center at the IU Med Center a few years back was seeing all of the super sick people there. As Jason has not yet presented symptoms, I didn’t like being reminded of what the future might hold.
Those of you who know our family are probably waiting for the bottom line. It is difficult to take a very lengthy and complex discussion and give you an accurate picture. However, the good news is that Dr. Byrd and his assistant were both very hopeful about Jason’s prognosis. Much knowledge about CLL has been gained since his diagnosis in 2011. We return to Ohio the end of November for the results of the tests. If Jason is in the low risk category, there is a chance he may never need any kind of treatment at all, and according to previous blood work, the doctor speculates this is the case. If he is in a high risk category, there is a clinical study available for him to participate in, where he will simply have to take a pill that has been shown to have few side effects. The drug is called ibrutinib, and to quote from an article published online, “Essentially all CLL patients respond well to ibrutinib, which lacks many of the side effects of chemotherapy and frequently produces long-lasting remissions even in patients with high-risk genetic lesions,” says study co-leader John C. Byrd, MD, director of the division of hematology and a CLL specialist at the OSUCCC – James. – See more at: Breakthrough Leukemia Pill Shows Lifesaving Promise. The drug has been approved for use by patients with CLL that have already undergone some kind of treatment. They are still studying the effects of the drug on patients who have not yet been treated, but Dr. Byrd is hopeful.
Sometimes, when people raise money for research, it can be seen as just throwing money away. October is breast cancer awareness month, and some of the tactics have gotten a fair amount of criticism. However, this is one situation (among many) where research has definitely paid off. When Jason was first diagnosed, we were told there was no cure and the disease was terminal. Although there are still no guarantees, this kind of cancer no longer feels like the death sentence it once was.
If you or a loved one has a health issue they are struggling with, I highly encourage you to pursue someone well versed in his/her condition. Our oncologist here is wonderful, but she readily admitted she didn’t know enough about CLL, especially in Jason’s case because only 1% of people are diagnosed with it before the age of 40. The doctor we saw in Indianapolis was familiar with leukemia, but not specifically CLL. There may be treatments available elsewhere that local doctors are unaware of.
On a related noted, our boys had decided to get rid of some of their books. Normally, they sell them. I suggested we let the moms in my group at church take whatever they might want and allow them to contribute to a donation box for the Leukemia and Lymphoma Society if they were so inclined. Jason has a co-worker whose young son has another form of leukemia and they recently raised money for a walk for the society, and we wanted to support them. We ended up with $71, which was more than we could have gotten actually selling them. How exciting that we could give some kids some great books, help out a family, and raise money for research…research we know firsthand that is powerful and effective.
We would love to hear next month that Jason is low risk, but either way, we are grateful for those who work tirelessly to find cures for the many diseases that ail our society. What a joy to have a greater amount of hope for the future!