Thursday, May 22, 2014

Day -7 We Are Checked In and Ready to Go

We were up by 4:00 AM this morning and checked into Seattle Children's at 6:00. (This is after I stayed up until almost midnight packing and then spent an additional hour or so trying to shut off my brain and go to sleep.)

Ryan had surgery to remove the port in his chest and replace it with a different type of central line called a Hickman. One of the main differences is that there are two access points, which is necessary because of the amount of simultaneous things that will be going in and out of his body all at once (chemo, blood draws, IV fluids, pain meds, etc.)

A second surgeon performed a procedure to remove a tiny piece of testicular tissue. Half of the sample is being sent to Children's Hospital of Philadelphia (CHOP) as part of a clinical trial to experiment with multiplying the stem cells. In primates, researchers have seen some very encourage results in restoring fertility when they have done this same process and then re-implanted the stem cells later. The other half of the sample is Ryan's to keep. It will be cryopreserved and stored in a freezer at the University of Washington for his future use, if he desires (or even needs it; there is no way to know whether the chemo will affect his fertility, but it is a risk.) By the time he is an adult, the hope is that the research will have progressed to successful re-implantation in humans, resulting in live births.

I managed to squeeze in a fair amount of work during Ryan's surgery and again later in the afternoon. I am trying to average working at least half of the time so that I don't burn through my PTO so fast. Some days I get in a half day, sometimes I am able to work a full day, and then other days I have to take a day of PTO. It's a challenge, but I am trying really hard to juggle everything and make it all work. I am really thankful for the support of my boss and co-workers in being understanding and flexible. Hopefully by this time next year, things will be mostly back to normal.

Tomorrow, chemo starts to destroy what remains of Ryan's bone marrow. Once chemo starts, there is no going back. I was forewarned today that the team will be showing up in blue hazmat suits in the morning.

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