ALL IN WITH NANCY - UPDATE #145

She's home. 

Got Nancy back late last night and we've been doing our best to take care of her ever since. Her body is incredibly stiff and sore after all the seizures, not to mention spending six long days in a hospital bed. Her eyes are bothering her pretty badly as well, after missing her usual visits to UCLA Jules Stein. But she won't be beaten and I have many people to thank.

First, my kids. 

Cosmo has been my boots on the ground loyal soldier-- only a week after his high school graduation when he should celebrating-- instead running errands, cleaning the house, helping me hold down the fort in every possible way. And giving me every hug I needed without having to ask. Clementine has also been an absolute angel-- joining me at lunch, cooking us dinners, even rubbing her mom's feet. And even though Crockett's been back in Chicago at school-- he's coming home to be with us next week before his big summer internship starts-- which will be just the blast of positivity and extra reinforcement we need.

Then there's all the doctors and nurses who have worked as hard as they could to help Nancy get back on her feet. What an extraordinary gift to the world these people are who devote such long and difficult days and nights of their lives to saving the lives of others.

And finally, I must thank all of you-- Nancy's friends and family, far and wide. Your calls, texts, emails, posts, meals, kindness, and pure love have once again made an enormous difference for all of us. Nancy can't be on her phone or computer for a few more days (neurologist's orders), but I can already tell you how deeply touched she's been to hear about the outpouring of prayers and healing energy she's received. 

I struggled with reactivating this blog. I knew from experience it would be the most efficient way to communicate with the hundreds of people who've been blowing up my phone like it's 2017 all over again. But at the same time, a big part of me wants to leave it behind-- to the extent that when Nancy actually paid to have all the past entries printed into a large bound book a couple of years ago-- I never even wanted to crack the cover. I want to move on-- no longer having our lives defined by such a relentlessly difficult journey. Appreciating all the compassion, with no appetite for pity.

But a loved one recently reminded me there's no escaping emergencies. They happen to all of us. You can't avoid them. You can't ignore them. You can't forget them. You just have to accept them, do your best to deal with them, and then move on. Because sooner or later, one way or another, things always get better.

So that's it for now. Nancy's got a bunch of follow up appointments with doctors at UCLA and City of Hope over the next few days. And of course, a lot of rest and recuperation for the next few weeks. But I'm gonna hit the pause button on the daily updates for awhile so we can find our way back to peace.

Just please know how truly grateful our entire family is for all of your heartwarming support.

💗

 

ALL IN WITH NANCY UPDATE #144

Nancy's going home. 

Here’s why:

1. Her vitals are strong and her sodium levels are normal.

2. Her mental acuity is the best it’s been since last Sunday.

3. Cedars Tarzana says it’s safe for her to go home and will send us with oral versions of all the meds she needs.

4. City of Hope’s severe shortage of beds simply cannot be overcome.

5. By taking her home, she’ll not only get infinitely better rest— but I can make sure she gets to appointments with both the Neurology Dept. at City of Hope and at UCLA where they take care of her eyes. 

So Nancy's been officially discharged from Cedars Tarzana. And now we play the classic hospital game of "Hurry Up And Wait" while they remove her PICC line, shuffle all the paperwork, and finally let us get the hell outta here. 

So by the time you read this update-- I'm hoping this truly terrible week will be behind us-- and Nancy will finally be home.

Thanks 

ALL IN WITH NANCY - UPDATE #143

 

Yeah. That's Nancy. Still at Cedars Tarzana and trying to find some kind of escape beneath the covers from all the lights and noise. 

Sadly, it's no different from any other hospital in that regard-- between the nurses constantly traipsing in and out at all hours, the endless beeping and booping of machines, and the random screams of some guy down the hall in withdrawal-- there is precious little rest to be had in these places.

But she was much more engaged today. Able to answer most basic questions, remember details like the kids' ages and our address, and actually feed herself. The physical therapist also got her to take a walk down the hallway-- using a walker in one direction, and without it on her way back.

Unfortunately, in spite of all the heavy medications she's on, Nancy is still having periodic mini-seizures, each one lasting around 3-5 seconds. She's not aware and has no memory of them afterward. But I can tell it's really exhausting her.  

Fortunately, the charge nurse came in to do a rapid Covid test a couple of hours ago at the request of City of Hope. So I'm very hopeful that means a bed will soon be available for her there and she'll be able to transfer soon.

One last thing. The one decent meal she's had here in five days was a bite of challah the Chaplain brought her along with some battery operated candles this evening for Shabbat. 

Thanks for keeping your own candles lit for Nancy-- real or metaphorically speaking-- until she can finally get well and come home.

ALL IN WITH NANCY - UPDATE #142

Friends and Family...

Nancy's condition has improved. Last night, she was moved out of the ICU and into a regular room here at Cedars Tarzana. She was much more aware today— able to communicate, understand, and remember certain things.  She even FaceTimed briefly with our daughter Clementine.

Her vitals remain strong, and her sodium level is within normal range. Physical therapists also got her on her feet for the first time in 4 days. 

Unfortunately, she has continued to experience some minor seizure activity— each episode lasting around 5 to 10 seconds in length. During that time, her face locks in a grimace and she becomes temporarily nonverbal. The nurses and I witnessed four today-- then the on call neurologist substantially increased her anti-seizure meds in the hopes of slowing that pesky electrical activity down— and she's been resting peacefully ever since.

Thankfully, I’ve been told that City of Hope will soon have a regular room available for Nancy— so the goal is to get her there at some point tonight (we're not sure exactly when-- could be this evening, could be in the middle of the night) and then start working with their Neurology Department first thing tomorrow to try and figure out what's causing all of these fireworks in her head.

Thank you all for your continued kindness and prayers. 

 

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.

🙏