It has been a frustrating week long wait in which Laura’s neurosurgeon, great as he might be with a knife, failed to act to get her in front of a neurologist as her legs have continued to decline. (Laura fell 2 nights ago. She didn’t hurt herself, but is now using a walker and is always accompanied. ) Then more lost urgent messages for her oncologist today… Grrr.
Finally I got connected with her oncologist who said that we should stop dealing with the runaround and get to Boston right away. I quickly reached her neuro-oncologist at Dana-Farber and he told her to get to the ER at Brigham-Women’s.
Fortunately Laura’s parents came up on Tuesday, so we could leave the girls at home. But we’re sad to since Lily was very upset when I told her my intention to take her mom to the hospital in Boston. After all, I’ve been spending the last month trying to ease her anxieties by ensuring her that I would never abandon her. And Naomi has a birthday party on Sunday.
Anyway, here we are. She was quickly admitted and a plan will be presented shortly. Probably more scans again to start with.
If I can I’ll post updates on the comments section to this post. .
In the ER
Fri, May 2nd, 2008 10:32pm by dkulp
Tags: Uncategorized
17 responses so far ↓
1 David // May 3, 2008 at 2:08 am
Standard tests, xrays, CT scans done. All clear. Determined that Laura is not “acute” and is in the process of being admitted to the oncology ward.
So unfortunately she won’t get any attention from a neurologist until sometime tomorrow. Stroke and similar patients understandably take precedent. But it looks like our hope of a quick work up and return home are dashed.
2 Joe // May 3, 2008 at 2:40 am
Ashfield Report: The girls enjoyed watching “The Electric Company”. After story time with Yaya, they were off to bed without a peep! All is quiet. Hope you both rest well.
3 David // May 3, 2008 at 4:35 am
Laura was lucky to be scheduled for an early MRI. She was just wheeled away. Usually an urgent in-patient MRI is within 24hrs. This means results this morning and subsequent followups today, not Sunday.
4 DonnaCasey // May 3, 2008 at 7:44 am
Thinking of you….prayers continue.
5 Aunt Cathy // May 3, 2008 at 7:51 am
Holding you up.
Aunt Cathy
6 David // May 3, 2008 at 8:41 am
Plodding along at hospital pace, not ER pace. It’s faster, of course, than dealing with a problem piecemeal at home, but we wait now without much schedule: “doctors usually make their rounds some time this morning.” It’s familiar territory, but being far from home makes it more frustrating. What do I say to Lily if I call on the phone? Should I cancel Naomi’s party already?
One good outcome already is that Laura’s pain is much better controlled. She hasn’t been sleeping well because her legs have been aching and nothing she took at home reduced the pain. Here, she’s had some relief and is snoring away as I type.
As we have been interviewed repeatedly since last night, Laura’s decline over the last 2 weeks is now clearer. 2 weeks ago she walked unassisted, alone down our uneven dirt road for a 1/2 mile round trip walk to the mail box. She struggled to pull herself up the stairs by this past weekend, but only got a cane on Monday as a precaution. On tuesday she could move pretty quickly across the floor unaided and drove by herself to visit friends.
Her balance worsened so that by Wednesday night she fell with the cane. By Friday she required a walker and mostly walked in limpy half steps.
7 Steve // May 3, 2008 at 9:29 am
Hi David, Please let us know if you need us. We’d be happy to entertain the girls. I believe Victoria is in Northampton with Charlotte. I’m at work until 2pm. My cell phone is 413/530-2991. Victoria’s cell phone is 413/330-9113. Steve
8 David // May 3, 2008 at 10:33 am
We got the first word about the MRI. “Thickened nerve roots” in lower spine. This is consistent with lower body troubles and also consistent with medical papers I’ve been reading online about patients with leptoneningeal disease and troubles walking.
But we don’t know more than that now. Will see a neurologist later.
Ps. Still in the ER waiting for a bed.
9 Stanley Karel, Terri and family // May 3, 2008 at 10:52 am
David and Laura,
Sorry to hear that Laura is back in the hospital. We think about you all everyday and will continue to pray for her health. Sending love and better days your way…
Love, Stanley Karel, Terri and family
10 David // May 3, 2008 at 1:14 pm
We met with a neurologist who did a further work up and confirmed that Laura’s symptoms describe a nervous system problem, not muscular, even though it’s grossly manifest primarily as weakness. And the MRI showing “clumping” of nerve roots where cancer cells are probably massing is consistent with her symptoms.
It was the grim diagnosis that we expected, but hoped not to hear. Laura said, “I’m dying from cancer again.”
A neuro-oncologist probably won’t be seeing her until tomorrow, but the neurologist guessed that steroids and radiation are likely to be palliative.
A radiation oncologist may visit today.
I’ll be leaving for Ashfield shortly for the night.
11 David // May 3, 2008 at 2:41 pm
Laura was just moved out of the ED to room 20 on floor 15-A. Phone is 617-732-4636.
12 David // May 3, 2008 at 2:55 pm
Oops. That’s 617-732-4637.
13 Elena // May 3, 2008 at 3:38 pm
Thanks for the updates. I’d love to call Laura, but is she up to it?
14 Mary Ann Payne // May 3, 2008 at 4:13 pm
Remember Hawaii. Love to you and Laura, Mary Ann
15 David // May 3, 2008 at 4:19 pm
Quick big news. Laura will be transferred (by ambulance) to Cooley-Dickinson hospital in Northampton probably tonight. Her ear term treatment is clear: steroids and radiation. And CDH is ready to get the rads going right away. They don’t have the needed neuro physicians, but given the current plan we don’t need that expertise over the coming few days. She’ll be back to Boston as an outpatient later.
The only reason she can’t just be discharged and driven by me back home is because she’s on injection steroids to reduce inflammation and prep for rads, and that requires monitoring.
16 Linda Murphy, a friend of Karen's // May 3, 2008 at 8:07 pm
I walked the first part of the Avon Breast Cancer Walk in Washington DC today- proudly wearing my badge stating that I dedicated my walk to Laura – you will be in my thoughts tomorrow when I finish
17 Shannon and Madison Coleman // May 3, 2008 at 8:33 pm
Sorry to hear that Laura is back in the hospital. We will be praying for all of you.