Support Registry Update

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The Steinhaus Family
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We came home from the hospital on Tuesday afternoon. As we anticipated, being home has been good—it’s been nice to sleep in our bed and be with our kids—and also really hard. Pain control has been difficult. Fortunately, Andrew’s palliative care doctor (whose job it is to manage pain and other symptoms) is very responsive. During an office visit yesterday, she changed his pain medication and then answered further questions and gave updated instructions after hours last night when it wasn’t going well. Today he’s been able to manage pain much better, which allows him to be more present. 

 
We had a big day of appointments yesterday in the oncology clinic. In addition to palliative care, we saw his oncologist, a dietician, and clinical trial researcher. We confirmed intentions to start chemo by the end of next week after Andrew gets a follow-up transesophageal echo (TEE) and also talked through potential chemo side effects and how they’d be addressed. Generally they anticipate more GI-related side effects on his chemo regimen and say he may get to keep most or even all of his hair. The schedule will probably be one day of chemo every other week. All of his providers will conduct their appointments with him during his infusions, which sounds efficient. Still, these will probably be 6-8+ hour days.
 
Tomorrow we see the cardiologist in clinic. I am hoping this goes well and scheduling the TEE for early next week is simple. I have been worried about hearing this doctor will be too busy to schedule it so soon after our initial visit. But we know the in-patient cardiologist, as well as Andrew’s oncologist, briefed him on the urgency.
 
We are very grateful to our family and friends who have shown up for us in incredible ways. So many have reached out with encouraging messages, prayed with us, visited in the hospital and at home, sent gifts, dropped off delicious food, and held and loved our babies. Thank you so much. Andrew says he appreciates every text or call (even if he hasn’t responded yet). 

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Comments

Karell Roxas

So happy you're home and love that picture of your two boys. Those sound like long days but also like a solid plan. I hope it feels good to know the next steps even though this is a journey. Keep going. We're here to surround you with support and love and all the snacks.
  • over 1 year ago

Bob Cagle

We are praying for miraculous healing and peace. Much love, The Cagles
  • over 1 year ago

Wendee Skeehan

Sending you our love and prayers - and so glad to hear you are back home now.
  • over 1 year ago