Kirsten Update – April 26, 2013

I took the girls to see Kirsten at the hospital tonight. Kirsten had a difficult day, and it showed. It was very nice, though, for the girls to see her and for her to see them. The mood was somber, but with a lot of love (with an almost urgent, purposeful feel, which is weird). This situation has been difficult for us all; the gravity of Kirsten’s declining health was evident in her watery eyes.

Kirsten has not had another hypertensive crisis episode since Wednesday morning, but she is in constant pain and her blood pressure rises to the 150+ mmHg (systolic) range. They are running a twenty-four-hour urine test again, telling her they can only test one thing at a time. The serum in blood test showed negative for pheochromocytoma, but they want to be confident of ruling it out with the urine test.

Hayley tells Kirsten all about her recent field trip to Augusta.
Hayley tells Kirsten all about her recent field trip to Augusta.

Dr. Isacke suggested cementing her fractured vertebrae (vertebroplasty) to provide support, as well as manipulative therapy of her spine. Dr. David Keller stopped by today and did the therapy.

Dr. Hedly, head of the resident endocrinology team, as well as Dr. Kulke, Kirsten’s oncologist at Dana-Farber Cancer Institute, thinks the chemotherapy targeted cell lysing is causing hormones (catecholamines) to be released causing high blood pressure spikes. I’m curious how that’s possible, since her tumors are pituitary, which does not secrete catecholamines. I was at work today, and not available to talk to the doctors and ask follow-up questions. I would also like to know why they were hesitant to diagnose anything before completing the myriad tests, but now are quite confident despite not having received the results. Perhaps they just needed time and consulting with each other to narrow down based on what they already know.

While we were hoping Kirsten would come home today, that obviously didn’t happen. She has to be in the hospital to finish the urine collection. After that, they’re going to start her on blood pressure medication, which she will continue at home. They have talked about sending her home with a blood pressure monitoring machine, but that was apparently decided against because heart rate is more easily monitored at home. They will keep her in the hospital until her blood pressure is stabilized. I have no idea how long that might be, obviously.

Because they suspect these current issues are caused by the chemotherapy, they are suggesting a scheduled inpatient stay next month during the course. Also, Dr. Kulke would like to see her in Boston next week, even though our scheduled follow-up isn’t until the end of May. I’m not confident she’ll be strong enough to travel to Boston next week (at least not on the train and subways).

Kirsten is pretty down. Hope and optimism have been mostly replaced with a sober realization of the seriousness of the prognosis and imagining what the future is likely to entail. I hate that someone as sweet and caring and giving and selfless as Kirsten has to suffer as much physically and emotionally as she has. I will never understand what drives people to double-down on god when confronted with these difficult situations. Random is depressing and unfortunate; “Purpose” would be inexcusable and infuriating.

Thank you all, again, for your many kindnesses. We need you now more than ever.

Jenna and Kirsten share a hug
Jenna and Kirsten share a hug
Kirsten and Jenna spend a few minutes together on the edge of Kirsten's hospital bed.
Kirsten and Jenna spend a few minutes together on the edge of Kirsten’s hospital bed.
Jenna, Hayley and Skye visited Kirsten today in the hospital.
Jenna, Hayley and Skye visited Kirsten today in the hospital.
Kirsten and Skye embrace at the hospital, while Jenna watches.
Kirsten and Skye embrace at the hospital, while Jenna watches.
I love Kirsten!
I love Kirsten!
Kirsten orders up some baked breaded haddock for dinner.
Kirsten orders up some baked breaded haddock for dinner.
Hayley looks on while Skye and Kirsten share a hug.
Hayley looks on while Skye and Kirsten share a hug.

5 Comment

  1. Tanya Safsten says: Reply

    Brent, will you give Kirsten a hug from me? Thank you. I love you guys.

  2. The love that shows even in photos between Kirsten and her family takes my breath away. You have something that few families will ever know. I heart aches that this could be taken away.

    My thoughts are with you all!

  3. The love that you all share is always there, even when hope and optimism flag.

  4. kathy longacre says: Reply

    Love to each of you. Brent thank you for sharing. Your family and the bond you and Kirsten have created is wonderful and amazing. Kirsten has always been such a pillar to you, the girls and everyone around her. Hugs to Kirsten. I so wish she didn’t have to go through the pain and emotional strife. My heart goes your to Kirsten and you and Skye and Jenna and Hayley.

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