I'm writing fast and am tired. And I am no scientist, so you are getting the high level, bullet point version here. Excuse the typos.
So, today was a gauntlet (with apologies to medievalists who actually know what that means) for Jeff. He was heroic. Amazing. He underwent the alphabet soup of tests. It was intense. I may miss some but he had a PET scan, a bone marrow biopsy, EKGs, x-rays, an MRI, etc. And... we are still waiting for definitive results.
That said, it now seems quite certain that Jeff has a variety of B-cell leukemia or lymphoma. Specifics still to be determined after some tests pathologists will run with lasers (insert Dr. Evil voice here). We don't know any details about treatment other than that it will include chemo, it will be tough and last months, and it will start ASAP.
We will share more as soon as we know. Please keep Jeff in your continued prayers and thoughts.
I also can't remember if I mentioned that we (as in me and the girls) have been ably and wonderfully supported by Emily and Robin the past couple days. I'm going to send out many calls for help, to be sure, but we are doing okay at the moment.
A lot of you may also be wondering about Stella and how she's taking things. Overall, I think she's coping remarkably well. It's been a doozy of a year and a hell of a week for her. I got to talk with an awesome child-life specialist from UCSF today and he had some excellent advice. We are trying to follow her lead in what to communicate to her (i.e., not saying, "well honey, there are blood cells and those cells are sick blah blah blah"), to speak to her in child-appropriate language, and to maintain as much of a sense of normalcy and routine as possible. If anyone has questions about how to interact with Stelly - please feel free to contact me directly.
Love to you all, sorry this grew so long.
Katina
PS - Random alert: no flowers allowed on Jeff's new floor at UCSF.
4 comments:
I had never heard of a child life specialist until I started volunteering at a pediatric pallative (hospice-ish) care center. What an amazing resource they are! I hope that you have all the resources and experts you need and deserve during this time! Sending lots of love and prayers.
I read this passage this morning and came back to it as I read your awful news.
"I love God because he listened to me, listened as I begged for mercy. He listened so intently as I laid out my case before him. Death stared me in the face, hell was hard on my heels. Up against it, I didn't know which way to turn, then I called out to God for help. 'Please God!,' I cried out. 'Save my life!' God is gracious-it is he who makes things right, our most compassionate God. God takes the side of the helpless; when I was at the end of my rope he saved me.
I said to myself, 'Relax and rest. God has showered you with blessings. Soul you've been rescued from death; Eye, you've been rescued from tears; and Foot, you were kept from stumbling.'
I'm striding in the presence of God, alive in the land of the living! I stayed faithful, though bedeviled, and despite a ton of bad luck." PS 116
We cry out to God with you and pray for rest, knowing you are in his care. <3 Christine
Katina - I'm so sorry to hear what you, Jeff and the girls are going through right now. I'm glad you're reaching out and I know your family and friends will be a wonderful source of support. Scot and I are sending hugs and good vibes and fervent wishes that you're all doing OK and Jeff can beat this quickly.
Karen - I have thought of you often since all this started. Thank you for your kind comments.
Lauren and Christine - love to you both for your wise words. My new career aspiration might just be Child-Life Specialist, but the thought of returning to school is pretty gnarly.
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