Leigh, Kym, William, Jorryn, and Macyn … and our adventures!

We have a plan!

We spoke with Dr. Pacek today, and we kinda, sorta have an idea of what’s going on!

Here it is:

1. The tumors in Leigh’s neck are coming out. This will be done in (most likely) two surgeries, and if what Dr. Kebebew spoke to us about in clinic a while back holds true, it will probably be something like this: the right side will be done first, and as long as everything goes well, both during and after surgery, the left side will be done a few days later.

2. The tumor in Leigh’s chest is coming out. Even though there has been talk that this may be secreting, and secreting lesions are typically removed first, this one is considerably smaller than the two in his neck, and is much more easily removed. Basically, it presents less of a problem, so it can wait a little bit longer. Dr. Pacek said that it will probably be done about three weeks after the two neck surgeries are completed.

3. The tumor(s) in Leigh’s ear is/are staying in, at least for the time being. After consulting with the Radiation Oncologist, Dr. Pacek said that this needs to be radiated instead of removed. He said that it will probably be 20 – 25 treatments, but we don’t have a timeframe for when this will be done, other than assuming that it will be after the first three surgeries.

In more good news (having a plan is good news!), Dr. Pacek confirmed that there is NOTHING of concern in Leigh’s liver!!! (This was the kidney/gallbladder/liver scan that was added toward the end of his testing at NIH.)

Karen, our AWESOME clinical coordinator/Super Woman, will be working with Dr. Kebebew to get Leigh on the surgical schedule, and hopefully (although again, I’m assuming), we’ll have some dates to add to this plan by this time next week. If nothing else, we’ve got forward momentum, and that’s a very welcomed change! We know that there is a lot going on behind the scenes, and we’re very grateful for all the work everyone is doing to get us the answers we want and need, but sometimes, it’s just frustrating being a patient and not knowing what is going on!


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