ALL IN WITH NANCY UPDATE 141

Nancy made it through last night and today with no more seizure episodes. Her vitals are normal and best of all, her sodium level is now normal as well.

She was also able to respond to me when I first arrived this morning and spoke to her— and remains responsive— even if she still isn’t completely clear about where she is or what’s going on.

They inserted a PICC line in Nancy’s arm to make blood draws easier. She has never been an “easy poke” as the phlebotomists say— and her poor arms and hands are already a sea of bruises from their many attempts at blood draws and IVs since she got here. So at least she won’t have to deal with that pain anymore.

I have to say, I’d almost forgotten how exhausting it is to be someone’s non-stop advocate in the hospital, though. She’s had constant visits from nutritionists, rheumatologists, neurologists, chaplains, cardiologists, radiologists, and various case managers. Just had to chase off a physical therapist who actually wanted to wake Nancy up from a dead sleep and take her on a walk. Had to explain to her that even though Nancy just answered “yes” to her question “would you like to get up?” — she also just called me by our housekeeper’s name. I know everybody’s got a job and they’re just trying to do it. But right now, my job is to run blocking and keep Nancy safe.

Unfortunately so far, my efforts to get her transferred to City of Hope have been temporarily stalled. The Cedars Tarzana docs have all agreed that she’s safe to transport and the transfer paperwork has all been approved. But the precious real estate at City of Hope is the real issue. 

We ran into this same problem five years ago when she was first diagnosed with A.L.L. and urgently needed treatment. The best thing about City of Hope is that it’s one of the most extraordinary cancer treatment hospitals in the world. But because of that— EVERYBODY wants to go there. So beds are very hard to come by. 

Dr. Stephen Forman, the Head of Oncology at COH who is directly responsible for saving Nancy’s life, has assured me that he’s pulling every string he can to get her there as soon as possible. But it may be another 24 hours or more before we can make the move.

So please cross every finger, light every candle, and say every prayer you can that we can get Nancy where she needs to be much sooner than later. 

And thank you so much on behalf of our entire family for all of your humbling love and support.

🤞🕯 🙏

ALL IN WITH NANCY UPDATE #140

Hello again, Dear Friends and Family of Nancy...

First, let me say I always hesitate to reactivate this blog. So many people have been so very kind to our family over the past five years since this odyssey began-- the last thing I want to do is flood your mailboxes with any more missives about Nancy's health.

But I also know how much she is loved by all of you. And my hope is that somehow the power of that love can help bring her back to all of us.

So here's the latest on her condition.

The great news is, Nancy’s MRI came back normal— so there are no indications of further brain damage. Her EKG and Echocardiogram (heart ultrasound) looked normal. And her respiratory system is now functioning normally as well.

But the bad news is, she’s had several more minor seizures today and spent a fair part of the day trying like hell to get out of bed.

She's definitely lost none of her former Olympic gymnast strength-- I can tell you that much. But with all the lines and tubes she's currently got attached to her, it took me and three nurses to hold her down at one point for her own safety. I kept trying to talk to her and reassure her that everything was going to be okay. And I'm sure I was telling myself the same thing. But it's typical for someone to be extremely confused and even agitated after suffering these kinds of neurological events. So since I know she won't remember any of it-- I'll do the best I can to let it go, as well.  

Regardless, her neurologist believes it's very important to limit that kind of stress and intense electrical activity in Nancy's brain so it has a chance to reboot and recharge. So they significantly increased her meds-- and thankfully, she's been resting peacefully ever since. 

The staff at Cedars Tarzana have been incredibly helpful-- but as soon as I can, I'll probably wind up transporting Nancy to City of Hope. Granted, Duarte is a lot less convenient than our neighborhood hospital-- but the physicians there all know her (especially Dr. Stephen Forman, the Head of Oncology who saved her life), and they have a comprehensive record of her care. So as soon as everyone here feels it's safe to do so (hopefully tomorrow)-- we'll probably make the move.

In the meantime, your continued kindness, prayers, and healing energy are deeply appreciated.

💗

ALL IN WITH NANCY - UPDATE #139

Today is the 5th anniversary of Nancy’s Bone Marrow Transplant— and while she mercifully remains in remission from Acute Lymphoblastic Leukemia— we could still use your prayers right now.

Nancy woke up feeling very tired this morning and seemed increasingly confused. Around lunchtime, she started having difficulty communicating, finding words, etc. She also couldn’t walk. So I carried her to the car and decided to take her to City of Hope. 

But just as we were about ten minutes away from home– she had a massive seizure in my car. It lasted over two full minutes. I pulled over and then raced back to the Cedars Tarzana ER (where ironically, this whole journey began for Nancy on New Year’s Day of 2017). 

She is breathing, but incoherent. They gave her heavy drugs to hopefully prevent any further seizures. They are doing a CT scan of her brain. And then she’s being admitted to the ICU. 

Please hold her close in your hearts.

🙏

ALL IN WITH NANCY UPDATE #138

This is the one hundred and thirty-eighth in a series of NANCY UPDATES I have posted-- now celebrating the fact that even though her post bone marrow transplant and brain seizure recovery continues... the amazing Nancy Neufeld Callaway is still in full remission and has kicked her leukemia on its ass. 

Today was the 45th Annual City of Hope Bone Marrow Transplant Reunion. And while Covid protocols forced it to be virtual again— it was still extraordinarily moving— especially because Nancy was featured in a heartwarming video segment.

Here is a link to the entire program. In addition to seeing the Sunshiny Superwarrior Goddess, you’ll also get to see transplant recipients emotionally meeting their donors for the first time— not to mention warmly encouraging words from Will Farrell, Dodgers manager Dave Roberts, and the amazing man who saved Nancy’s life— Dr. Stephen Forman.

45TH ANNUAL CITY OF HOPE BONE MARROW TRANSPLANT REUNION

Thanks for watching. Thanks for being there for Nancy. And as always…

ALL IS WELL!

If you’d like to potentially save a life by registering for the International Bone Marrow Donor Bank, here’s a link:

INTERNATIONAL BONE MARROW DONOR REGISTRY

And if you’d like to donate to City of Hope and help them continue their tireless efforts to stop cancer, there’s a link for that, as well.

CITY OF HOPE - DONATIONS

 ALL IN WITH NANCY UPDATE #137

Greetings. 

This is the one hundred and thirty-seventh in a series of NANCY UPDATES I have posted-- now celebrating the fact that even though her post bone marrow transplant and brain seizure recovery continues... the amazing Nancy Neufeld Callaway is still in full remission and has kicked her leukemia on its ass. 

Nancy's corneal patch graft surgery appears to have gone without a hitch.

Even if it was delayed by some pre-op blood lab issues, I have to say, the UCLA Stein Eye Institute's surgical facility is pretty top notch. And her anesthesiologist, a wise and angelic man named Dr. Fang, was also extremely attentive to Nancy's complex medical journey of the past four and a half years-- and after conferring with her corneal specialist, Dr. Aldave, decided he didn't want to take the risk of prompting any seizure activity or causing any further memory loss by putting her completely under with general anesthesia. Instead, the decision was made to carefully administer a combo of gas and a strong local anesthetic-- which blocked all of Nancy's pain, but still left her awake and able to hear the surgeons doing their work.

And three hours later, the job was done. The specialist told me her donor cornea had been carefully trimmed to perfectly fit into the damaged area of Nancy's cornea and he was very pleased with the end result.

Oh, and maybe the best part? In the hours since getting her home afterward-- she hasn't really felt any significant pain or discomfort. Granted, her left eye is completely covered with gauze and a big aluminum shield-- but so far, so good. And we'll be back to UCLA tomorrow for a post-op exam.

Thank you so much for all of your kind emails and texts to Nancy. Your thoughtful encouragement and prayers mean the world to our entire family-- and your continued healing energy and prayers for a swift and complete recovery are more appreciated than you'll ever know.

I may lay off the daily blog updates for awhile-- but will definitely keep you all posted on her progress. In the meantime, just know this...

WE LOVE NANCY, and...

ALL IS WELL!

If you'd like to learn more about the UCLA Jules Stein Eye Institute and/or support their work, here's a link to more information:

THE UCLA JULES STEIN EYE INSTITUTE

If you'd like to register for the International Bone Marrow Donor Bank, here's a link. You could be someone's cure. You could literally save a life.

BE THE MATCH

If you'd like to donate to City of Hope and help them continue their tireless efforts and research to stop cancer, there's a link for that as well.

City of Hope Online Donation

And if you'd like to be automatically notified of updates to this blog-- just enter your email address in the window on the right beneath Nancy's picture, click SUBMIT, and follow the prompts!

ALL IN WITH NANCY UPDATE #136

Greetings. 

This is the one hundred and thirty-sixth in a series of NANCY UPDATES I have posted-- now celebrating the fact that even though her post bone marrow transplant and brain seizure recovery continues... the amazing Nancy Neufeld Callaway is still in full remission and has kicked her leukemia on its ass. 

In case you missed the last update (which was the first in quite some time), Nancy has been experiencing some pretty difficult eye issues. Here's a link to the full story:

What's Up With Nancy's Eyes?

Now here's the latest update. Today-- Tuesday, April 13, 2021-- Nancy is having some pretty serious surgery. A corneal patch graft of her left eye, to be exact.

Basically, that means they'll be using a small fragment of a donor cornea to replace a section of Nancy's left cornea that has deteriorated to an extent it can threaten the integrity of her entire cornea. Her specialists at UCLA have been trying to glue the area for a number of weeks, hoping it would heal on its own. But since it hasn't-- they must now carefully cut away the area of corneal thinning, and replace it with a "patch" made from donor tissue. That actually gets sutured over the bottom edge of her iris. And in order to spare you the experience of having to look at any online surgical photos-- I drew you a really bad picture.

   

Assuming all goes well, and her body doesn't reject the patch-- the hope is that it will fuse with the rest of her cornea, healing the damaged area, with no further surgical procedures necessary. If it doesn't work, we'll be looking at a full corneal transplant. But let's be optimistic, shall we?

Nancy will be under general anesthesia for the procedure, and it should last about an hour and a half. Then, once it's over and she's recovered from surgery, I'll be bringing her home.  

So if you've got some spare prayers, healing energy, and/or simple words of encouragement you'd like to pass along to the Sunshiny Superwarrior Goddess-- this would be a good time, and we'll gladly accept any or all of it. And yes, I'll do my best to keep you posted on her progress here. Meanwhile, as always...

WE LOVE NANCY, and... 

ALL IS WELL!

If you'd like to register for the International Bone Marrow Donor Bank, here's a link. You could be someone's cure. You could literally save a life.

BE THE MATCH

If you'd like to donate to City of Hope and help them continue their tireless efforts and research to stop cancer, there's a link for that as well.

City of Hope Online Donation

And if you'd like to be automatically notified of updates to this blog-- just enter your email address in the window on the right beneath Nancy's picture, click SUBMIT, and follow the prompts!

ALL IN WITH NANCY UPDATE #135

Greetings. 

This is the one hundred and thirty-fifth in a series of NANCY UPDATES I have posted-- now celebrating the fact that even though her post bone marrow transplant and brain seizure recovery continues... the amazing Nancy Neufeld Callaway is still in full remission and has kicked her leukemia on its ass. 

Once again, it's been awhile since I updated this blog. But in addition to trying to get on with our lives-- there was also that whole global pandemic thing.

And unfortunately, the Sunshiny Superwarrior Goddess has had other difficult issues to deal with, as well. Because it turns out those eye issues I told you about in the last blog post back in 2019 have taken a bit of a turn for the worse.

As I've mentioned before, between high dose chemo, radiation, and a bone marrow transplant—you know there are going to be all kinds of different potential side effects. For Nancy, it happens to be her eyes—with all kinds of acute dry eye problems. She’s seen literally dozens of doctors and taken all kinds of medicines over the last few years to try to manage the symptoms. But it’s all basically the trade-off for staying alive.

 

2 MONTHS AGO, NANCY'S LEFT EYE BEGAN ACTING UP  

Things suddenly took a turn for the worse with her left eye. She developed a corneal ulcer—basically a small open wound on her left cornea. It hurt really badly and obviously impacted her vision in that eye. In addition to our trusted family ophthalmologist, she started seeing a number of corneal specialists at the UCLA Stein Eye Institute—who were surprised by just how fast things deteriorated. Her cornea rapidly began to thin—first by 40%, then by 60%, then by 90%. The doctors began seeing her pretty much every day, including weekends—and were ultimately forced to glue her left cornea in order to keep it from rupturing, which could force her to get a corneal transplant in order to save her vision. Yes, they literally use surgical superglue—and have now had to do it three times. They’ve also placed a protective contact lens over her eye. And she’s been forced to take some very heavy steroids to speed healing—which have been pretty rough on her mental and emotional state. As they searched for the cause of the ulcer—the specialists began to suspect some kind of systemic, immunological issue. So they also sent her to a rheumatologist for an indepth series of tests. She was tested for rheumatoid arthritis, lupus, Sjogren’s syndrome, hepatitis, ocular herpes, and all sorts of other conditions which are known to impact the eyes—but all those tests came back negative. 

 

Nevertheless, the UCLA rheumatologist, after conferring with her City of Hope oncologist, decided to put Nancy on a broad based “steroid sparing agent” called methotrexate so she can hopefully get off the heavy steroids ASAP.

 

The good news is, for the past two weeks, her eye specialists have at least been happy to see the situation with her left cornea stabilized. Some of them are even hopeful that her cornea will still be able to heal itself without the need for a transplant. Others are not so sure. But in the meantime…

 

2 WEEKS AGO, NANCY'S RIGHT EYE BEGAN ACTING UP

 

When Nancy suddenly started to experience pain and blurriness in her right eye—the doctors immediately jumped on it—and diagnosed her with an epithelial defect, or “scratch” across the surface of her right pupil. They quickly put a protective contact lens over that eye, as well—and gave her even more meds to take. 

 

The good news is, as of this week, the scratch appears to have healed. But the bad news is—like any scratch—it has left an elevated ridge of tissue across the surface of her eye that is continuing to impact her vision. 

 

NANCY’S CURRENT VISION

 

Currently, between her two eyes, Nancy can barely read her phone, computer, or any printed words that aren’t absolutely huge. Everything looks like a white fog. So know that when you text or email her—she probably can’t read it—even after I magnified all the type on her phone and computer to the largest sizes possible. So it’s best to call directly or send voice texts if you want to connect with her.

 

PROGNOSIS

 

The doctors are telling Nancy that the vision in her right eye should restore itself over the next two weeks as that elevated area of tissue continues to heal. As for the vision in her left eye—we’ll just have to hope, wait, and see if the cornea heals. If not, she’s either looking at a partial corneal graft or a full corneal transplant. 

 

Of course, ALL of this is exacerbated in every way possible by Nancy’s memory issues. In fairness, her daily treatment regimen would be confusing for most people, without memory issues. But because it’s often difficult for her to remember exactly what the doctors have told her—sometimes only hours later—she is easily discouraged by all of this. Every day feels like waking up to some new fresh hell for her. So my hope is that by sharing all of this information with you—you can encourage her and help her keep track of her progress. 

So thanks in advance for that encouragement-- not to mention your healing energy and prayers as she continues to fight her way back to wellness.

WE LOVE NANCY, and... 

ALL IS WELL!

If you'd like to register for the International Bone Marrow Donor Bank, here's a link. You could be someone's cure. You could literally save a life.

BE THE MATCH

If you'd like to donate to City of Hope and help them continue their tireless efforts and research to stop cancer, there's a link for that as well.

City of Hope Online Donation

And if you'd like to be automatically notified of updates to this blog-- just enter your email address in the window on the right beneath Nancy's picture, click SUBMIT, and follow the prompts!