3/1/19 TMA and Unicorns

As we continue our plans to move home in three weeks, I keep praying and holding my breath, asking God to keep Reese stable and on the road to a full recovery. A few things will happen before we head home to Winnetka. Reese will have a quarterly bone marrow aspiration, to make sure that everything is as it should be. She receives regular peripheral blood chimerism tests, and she has been 100% donor since the summer, what an incredible blessing. We will meet with our team to have an in-depth discussion about our transfer to Lurie. There is so much that needs to happen to make this safe for Reese, it’s overwhelming if I think about it too long. So I have been focusing on day-to-day, and there is plenty to do right now. There have been some strange bumps in the road lately… lots of good, too… but Reese’s path still carries unknowns.
You remember that Reese was diagnosed with TMA a few months ago. This is when the tiniest blood vessels in her body become damaged (in part because of the chemo used in conditioning, in part gvhd, in part bad luck..) She has still been on eculizumab for this, the whole time. This is another immunosuppressant. Well, this week we decided to see if she still actually has active TMA or if the signs we are seeing still are permanent damage. So her eculizumab was discontinued on Wednesday, and we watch and wait. This was the big med change of the week.

There are a lot of helpers in our life, a lot of givers. My team is rallying at home, helping to move us across the country safely. I left in crisis, almost a year ago. I’ve had friends old and new offer luggage (I said, yes!!) and help me plan the transportation stuff for people and things (this is still in the works.) So many moving pieces, I have the best community, my team.

Each time we walk up to clinic, Reese says hello to her hospital room windows, and says, “Please help the next kid who is getting new cells.” The next one in line. My daughters have been blessed by so much giving over this past year… and now it’s their turn to give back. They started this week, when they donated about 30 unicorns to little kids at the Family House, who did not have unicorns. Little kids who are still fighting and need gifts. I was very proud of my trio, the giving spirit is alive and well in these three. My daughters gave a unicorn to a little girl in a wheelchair on her way to clinic, another one to a mom walking to the hospital, who would now have a gift to give her daughter… it was a moving experience as their mom. (pictured) My girls will continue to share their gifts these next few weeks, as we narrow down our belongings to make the trip home. If you were so kind to give to my children in their time of greatest need, please know that your gift may be passed along to another child, fighting their own battle, who can use a gift, too. The next in line. We know so many children, many whose stories have touched our hearts. And have changed the people we are, forever.

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