I am taking deep breaths, crossing my fingers, sending up some prayers, and overall hoping for the best.
You may recall that back in October we made a trip to Ohio State for genetic testing for Jason and to find out about clinical trials available. We returned in November for his results. Unfortunately, the results showed that genetically he landed in the high risk category for his CLL (Chronic Lymphocytic Leukemia). Had he been low risk, he would likely have never needed any kind of treatment. Bummer.
I have mentioned a drug before called Ibrutinib. They are currently running a clinical trial for individuals who have never received any treatment of any kind for their CLL. The drug is already approved for people who have already been through some kind of treatment. The treatment itself is simply taking one pill a day. Jason fortunately qualified.
The great news is that this drug would be astronomically expensive if it was prescribed, but it is given to us free of charge as part of the trial. The bad news is that Jason has to go to Ohio State once a week for the first month, and then once a month for two years. However, this is a small price to pay for the potential of being cancer free!
His first appointment is March 8th. Extensive testing will be done that day, including CT scans, blood tests, and a bone marrow biopsy, which he is not looking forward to. Blech!
When Jason was first diagnosed, CLL was considered a terminal cancer. Every single day that is becoming less and less the case. We are incredibly hopeful about this treatment. His doctor feels that this drug will eventually be the standard of treatment for all CLL patients, and that death from CLL will essentially be eradicated. Now that is amazing news!
If you are a praying person, please ask God for several things for us:
- safe travels (It’s about a four hour drive there and back. It’s an easy drive, but there has been a lot of traffic and construction the two times we have been.)
- smooth sailing through tests on the 8th
- general peace of mind (This certainly isn’t helping my battle with anxiety. Our boys need it, too. Especially the oldest…he gets a little nervous about it all.)
- the drug will do what it is supposed to do
- no side effects (or at least minimal ones) from the medication
We are very hopeful for good outcomes! Thanks to all of you who do pray for us and check in occasionally on Jason. It’s good to know in the midst of our mess we have people on our side!