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.
Conglomeration of Joy 
Thinking about you as I tear up reading your blog. My heart is broken for you. You see the gift of life in a way that only a parent on an oncology floor can. It is dear and sweet but can be incredibly painful…beyound words painful. I thank that Lord for the precious gift of that happy, silly, wiggly girl of yours! Kenzie thought she was such a fun little girl!!
Ha!
I can totally see you emerging as ‘easy going’ . . . I can already hear it in your posts (trust me, I love you as a crazy planner and as an easy going ‘go with the flow-er’).
I love the dad’s advice to find the middle ground… it seems like the more one comes into intense awareness of all the good/bad that swirls around daily, that it can only produce a calm, knowing perspective and simultaneously produce keenly aware urgency. Meaning, knowing when to let it go and knowing when to spring into action (whether in body or just heart) . . . like knowing when to hold em and when to fold em. (that was for all the Kenny Rogers fans out there).
I remember one of my profs said ‘The more I learn about the depth of the realities of life (spiritual, physical, etc), the less I laugh and the less I cry.’
I remember chewing on that one for about a year. Well, I guess I still chew on it, 16 years later.
Moving on…. I love hearing about Solveigh. And, I loved imagining you all on skype together. And, I’m so so so so thankful that you include details like that (even down to the insufficient skype buffering that delayed your image etc)… it so makes me feel like I’m there with you (not that it’s about me, but you know)!!!
Dear Jai, Sten an Girls,
I am a nurse, have been in Bozeman’s medical community, knows Sten’s Dad since he did knee surgery on a friend and from Church. I listened in as Sten’s Mom shared about Allistair after Community Bible Study last week. I was touched and reflective as a college friend of mine has just been through this with her daughter and grandaughter who was diagnosed with AML at age 2 and just completed treatment this past year at age 5. The situations sound so similar, that I think you might be interested in sharing. I could let you know how to get in touch if you wish. In the meantime I am admiring your strength and insight, following your postings and keeping you in our prayers. In His love and caring, Bethel Halladay
Bethel thank you for your prayers and for being willing to connect us with your friend. We will certainly keep her as a resource in mind!
Jai. Kirsten’s comments to you about riding the highs and lows made me smile. God is so gracious to give us friends like Kirsten. I continue to pray, particulary for the challenge of learning to change Alistaire’s dressing and for precious, elusive solitude.
Sounds like you got some good advice! Glad you were able to talk to that dad… Sounds like he’s been down a long road. So great you could se Solveig today, even for a bit. Really praying she feels better soon and for Allistaire’s numbers to go back up. Hope you and Sten have a good night:)
Jai, I only met you once but I swam with Sten in high school. I am praying for your beautiful little girl and for your entire family. You have a beautiful way of expressing yourself during this terrifying time. Thank you for sharing your journey and I will continue to pray as the days go on.
Thank you Caty for your prayers! I’ll be sure to pass this on to Sten.
Jai, I weep with you as I read your posts, and I love seeing the precious pictures and videos (even when I need to turn my head sideways to see them!). I love you, and I’m praying for you and Sten and both your dear girls.