I went to bed way too late and got up early this morning in preparation for Allistaire’s bone marrow test that was scheduled for 9:30am. On my way to the shower I asked the nurse if Allistaire’s labs had come back. BLAST! Her ANC had dropped to 74. I knew this meant that they would likely cancel the procedure and reschedule for Tuesday. When I returned, this was confirmed. No test. Gotta wait longer. Ugh!
Last night, I went to wash up dishes from Sten and I eating some tasty baked Ziti (thanks Kaitlyn and Tracie). I once again got caught up talking to one of the parents in the kitchenette. This dad has been here with his 9 year old son since June. His son also has AML and has FLT3. He had his transplant in September and has had an insane ride. His dad told me all about the saga, the tongue so swollen that the end sloughed off, the 108 degree fever that actually burned his skin, the scary virus after scary virus. I asked him how does he do it – how does he survive. His advice to me was this: don’t get too happy, don’t get too upset, find a good middle ground. When he said this my brain accepted it as a reasonable idea.
This morning when the test was cancelled and I felt the tug to be upset about it I remembered this dad’s words. I think he’s right. Things just change constantly here, it is the norm. Every day we test so many precise little things going on inside our child’s body – their temperature, blood pressure, weight, hematocrit, white blood cell count, platelet count, how much phosphorus, how much calcium, etc. These numbers are important, but like a lot of things in this world, there is constant fluctuation. To use the words of my dear friend Kirsten who visited this morning, “if you ride every high and every low, your adrenal glands will just explode.” (Kirsten is a neonatal nurse at Swedish by the way and I take her at her word 🙂 ) As one who is by nature a planner, this sort of world is not at all conducive to the way I want things to go. But wouldn’t it be amazing if on the other side of all this someone might actually describe me as “easy going.” Anyone who knows me would never use this descriptor for me. It makes me laugh out loud just to imagine. But really, it would be wonderful.
Thanks to those of you who have prayed for Solveig. She still has a slight fever but her cough is better and her cheeriness is returning. Tonight we used Skype to talk with Solveig on JoMarie’s (Sten’s mom) computer. Even though there is terrible lag time and the picture isn’t the clearest, it was so fun to see Solveig’s sweet silly face and see all her expressions. She and Allistaire laughed at each other. It was great to be together as a family of four, if even in this very limited way.