2/19/19 Vedolizumab, the drug that saved her

I don’t have an update on invasive aspergillosis, yet. Unfortunately, this scare came just before a long holiday weekend, so the soonest her galactomannan could be sent out was this morning, which we did. Results will come, hopefully by Thursday. Reese had a lovely, healthy, energetic weekend. She is eating and living her best life since transplant. “I love my new cells.” And we love them, too. And as my oncologist said, we sure are glad that they are finally settling in! They sure did cause a ruckus upon entry… those t-cells are powerful and quite a force. Just like their new owner.
We have been cautiously watching Reese for… anything. We are very aware of the threat this galactomannan antigen level brings. She developed three new “spots” over the past two days. These are being watched, and if her galactomannan is still elevated on Thursday measures will be taken. She also sneezed three times tonight, another sign. It sounds crazy, this is a crazy world we are still in. She hasn’t had a fever and we are holding our breath for good news.

We are doing an important taper this week. Her Vedolizumab infusion is being withheld tomorrow and we are moving to biweekly. Her levels skyrocketed recently (from under 10 to 31.) So I don’t anticipate a rocky week? But this is THE drug. The one that saved my sweet girl from gvhd, the 4th line agent that isn’t FDA approved for this purpose, the one that my brilliant doctors tried (we heard things like: well, this isn’t used on children, and there aren’t guidelines on levels…but….) and it worked. Thank God. But now it’s time to taper these immunosuppressants that are collectively holding her immune system hostage, and it’s vedo week.

OPERATION SPRING IN YELLOW is well underway. My daughters made a paper chain to count down the days to the yellow house, home. My doctors are working with the Lurie team to ensure that Reese has a smooth transition. We do not have a doctor at Lurie… our oncologist left and we never got to transplant there, so this will all be new, and big decisions are being made. Work is being done on our house. Our house sitters are helping. Friends are rallying to help… The last time we lived there I had two 3-year-olds and a 1-year-old. Now, exactly three weeks after we return, the twins will turn FIVE and then Claire THREE. We left five days after my twins turned 4, so that is one year, gone. We are so grateful my children will be home to celebrate their birthday, to start a new chapter, in a home. Their home. We are still working on the details of how we are getting there. We also need to get a year’s worth of things home with us, and we have three suitcases.

One of my favorite quotes of the week, by Reese, “I think I’m going to need another suitcase.” Indeed.

So getting things from SF to Winnetka is also on my list. I am grateful to have this problem, what a blessing! Details are coming together. It takes my breath away, this excitement.

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