fast forward.

In order to tell you about our recent trip to the University of Michigan as promised, I need to fast forward from September of 2008 (Josh's diagnosis) to the present. I'm hoping I can do this in one clear, concise entry. Well, one clear entry anyway.


first six months.
In my last entry I mentioned "medical advances" that revolutionized the treatment of CML patients. One of the advances is Gleevec. First approved in 2001, Gleevec is an oral pill that effectively treats about 80% of CML cases. While the drug does not "cure" the disease, it targets and turns off the specific proteins in the cancer cells that cause the cancer cells to grow and multiply.

We were thrilled to hear about Gleevec and its success! How wonderful that a drug could treat the cancer and allow Josh to go on with his normal life!

Josh immediately began the treatment and his blood counts went back to a near-normal level. For awhile. Within six months, his white blood counts started rising again and spiked to around 100,000. Josh had his second bone marrow biopsy and some further testing done. We were told that Josh's cancer cells were rejecting the medication. We needed to try something else.

try, try again.
Next up to bat, Sprycel. Discovered in 2006, this extremely powerful pill can only be prescribed to patients who have already tried Gleevec. Its intended results are similar.

Josh's first set of tests came back great. After nearly six months his blood counts were all stable (step 1) and his cytogenetic "chromosome" response (step 2) was at a good spot. Dr. Zakem told us that as long as his cytogenetic response continued to improve, we would be on the track for success!

A few months later, we went back to re-test the cytogenetic response and Josh had his third grueling bone marrow biopsy. Unfortunately, Josh's results showed that his cytogenetic response did not improve. While Josh continued to maintain his normal blood counts (step 1), his "bad" chromosomes (step 2) were not decreasing.

Dr. Zakem advised us that it was time to head down to the University of Michigan Cancer Center to meet with a CML Specialist to be evaluated.

our trip to the big house.
What a day. 2 hours down, 5 hours at the hospital, and 2 hours back. Thankfully, we swung into IKEA on the way home, so we could bring back some fun new furniture along with our ENDLESS supply of new information.

Some things we learned:
*** Dr. Talpaz is a CML extraordinaire! He was part of the initial study and prescription of both Gleevec and Sprycel. He has worked with CML for 30 years. 30 years!!! He moved from MD Anderson in TX to the University of Michigan about four years ago where he is now able to work with Josh. He is a straight shooter and a genius... two things I love.

*** We were transferred to U of M for two reasons. One, they are the best - they have the best doctors, the best knowledge, and a collaborative team. Two, they are the only facility in Michigan that can oversee clinical (experimental) trials if something looks promising for Josh down the road.

*** Josh's current response is okay, but it is not Optimal. Our goal is to eliminate the level of risk and protect Josh from the progression of his disease.

*** I am a talented note taker. Both speedy and precise. This was pointed out by both Dr. Talpaz and my husband. Although this is not relevant to CML directly, it is noteworthy! ;)

*** Josh provided several (and by that I mean 10) vials of blood for more testing. We need to know... Why isn't Josh responding to the medication? Is the disease moving and if so, in what direction? Are we happy or concerned? What is our next step?

*** It is time to become familiar with bone marrow transplant. Although this would be a last step measure, it is never too early to be prepared. Currently, Josh's two brothers are being tested to determine if they are a match. They each have a 25% of being a match. Please go to the Be The Match link on the left of the blog to find out how you can help!

*** Finally, we were told that we are not allowed to have a baby at this time. It is not safe to conceive a child while Josh is on his powerful medication. This is something we were not prepared to hear.


Obviously, we still have a many unanswered questions. And we have some concerns. While we do not know yet what God has in store for us, we do know is that God is in control.

We ask for your prayers - for strength, for healing, and for wisdom for our doctors.