DAILY NANCY UPDATE #56

Greetings. 

This is the fifty-sixth in a series of DAILY NANCY UPDATES I will be posting until the amazing Nancy Neufeld Callaway is in full remission and we have kicked her leukemia on its ass. 

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 and follow the prompts!

BREAKING NEWS

Back to UCLA.

We've been at the clinic since 9AM, so a bit of a long day for the Sunshiny Superwarrior Goddess. But her ANC (immune system) numbers are low-- so they had to determine whether or not Nancy could have chemo first. Then once the doctor finally gave it a thumbs up-- the dosage alone takes 2 hours. Good times! But as I just told her-- there's no use complaining about traffic when you're in it. 

HEADLINES

I know I already posted all this information yesterday-- so if you've already read about our search for a Bone Marrow Transplant donor and how you could help-- thanks for stopping by, and feel free to move along.

But in case you missed it...

A lot of you have very kindly asked if there's any way that you can be tested to see if you're a match. And it turns out there is... with a few important, unavoidable caveats.

1. GENDER AND BLOOD TYPE ARE NOT AN ISSUE. But like Nancy, you need to be of Eastern European Ashkenazi Jewish ancestry. Genetically speaking, that gives you the best chance of being in the right ballpark as a potential donor.

2. The younger you are, the better. Apparently, as we age, just like everything else in our bodies, our cells become less and less robust. So bonus points if you're under 40. But bone marrow beggars can't be choosers-- so if you're over 40, but passed #1-- you can still donate.

3. There are two primary ways to be tested. The first is called: 

BETHEMATCH.ORG   

Here's what you need to know going in. It's free to be tested on BeTheMatch, but if you become an approved donor-- it means you're available to anyone in need of a bone marrow transplant-- not just Nancy. What's more, if you're over 44-- the test costs $100. And regardless of age, it takes about 3-4 months to get results. 

4. The second option is a private lab, where you would only be tested as a potential donor for Nancy. That one is called: 

BONEMARROWTEST.COM

Even though it's reputable, the results are much faster, and the test is focused on an exclusive match for Nancy-- what bothers both of us about the service is that it costs $195 for anyone to be tested, no matter how young or old you might be.

Still... they're the best options we can offer to anyone who thinks they might like to be tested as a potential donor. And in either case, please include Nancy's email address (neufaway@mac.com) as well as our transplant supervisor Megan Wilson (MEWilson@mednet.ucla.edu) so they'll also receive a copy of your testing results.

Of course, if for any reason you can't or don't want to be tested-- that's okay, too. But please give us a heads up if you're willing and able-- so we can alert Nancy's team of physicians.

And thanks for reading all this-- not to mention considering any of it. 

Because we know you feel the same way we do.   

WE LOVE NANCY, and... 

ALL IS WELL!

DAILY NANCY UPDATE #55

Greetings. 

This is the fifty-fifth in a series of DAILY NANCY UPDATES I will be posting until the amazing Nancy Neufeld Callaway is in full remission and we have kicked her leukemia on its ass. 

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 and follow the prompts!

BREAKING NEWS

Okay. Been a few days since the last post. But we had a really good excuse.

Our sweet friends Sharon and Andy rented a beach house in Malibu-- then insisted we take it for the weekend. Which, as you can imagine, was ridiculously great. Plus, Nancy's friend Shelley sent her a masseuse. Which was particularly helpful, since the Sunshiny Superwarrior Goddess has been feeling pretty punk of late.

The good news is, her blood results all look normal-- but the bad news is, all the heavy duty chemo she's been receiving is finally starting to really get to her. Lots of nausea, dizziness, headaches, and heavy fatigue. The poor girl has been feeling pretty miserable, to tell you the truth.

So yeah, a restful weekend was exactly what the doctor ordered.

HEADLINES

Meanwhile, what's next? Well, the search continues for a donor who is the perfect match for a Bone Marrow Transplant. Unfortunately, neither of her brothers were strong enough matches-- so we've had to turn to the International Bone Marrow Donor Bank-- and that process is ongoing. 

A lot of you have also very kindly asked if there's any way that you can be tested to see if you're a match. And it turns out there is... with a few important, unavoidable caveats.

1. GENDER AND BLOOD TYPE ARE NOT AN ISSUE. But like Nancy, you need to be of Eastern European Ashkenazi Jewish ancestry. Genetically speaking, that gives you the best chance of being in the right ballpark as a potential donor.

2. The younger you are, the better. Apparently, as we age, just like everything else in our bodies, our cells become less and less robust. So bonus points if you're under 40. But bone marrow beggars can't be choosers-- so if you're over 40, but passed #1-- you can still donate.

3. There are two primary ways to be tested. The first is called: 

BETHEMATCH.ORG   

Here's what you need to know going in. It's free to be tested on BeTheMatch, but if you become an approved donor-- it means you're available to anyone in need of a bone marrow transplant-- not just Nancy. What's more, if you're over 44-- the test costs $100. And regardless of age, it takes about 3-4 months to get results. 

4. The second option is a private lab, where you would only be tested as a potential donor for Nancy. That one is called: 

BONEMARROWTEST.COM

Even though it's reputable, the results are much faster, and the test is focused on an exclusive match for Nancy-- what bothers both of us about the service is that it costs $195 for anyone to be tested, no matter how young or old you might be.

Still... they're the best options we can offer to anyone who thinks they might like to be tested as a potential donor. And in either case, please include Nancy's email address (neufaway@mac.com) as well as our transplant supervisor Megan Wilson (MEWilson@mednet.ucla.edu) so they'll also receive a copy of your testing results.

Of course, if for any reason you can't or don't want to be tested-- that's okay, too. But please give us a heads up if you're willing and able-- so we can alert Nancy's team of physicians.

And thanks for reading all this-- not to mention considering any of it. 

Because we know you feel the same way we do.   

WE LOVE NANCY, and... 

ALL IS WELL!

DAILY NANCY UPDATE #54

Greetings. 

This is the fifty-fourth in a series of DAILY NANCY UPDATES I will be posting until the amazing Nancy Neufeld Callaway is in full remission and we have kicked her leukemia on its ass. 

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 and follow the prompts!

BREAKING NEWS

Today Nancy had a great meeting with her doctor at UCLA about all the nitty gritty details of a bone marrow transplant. We are still on the active search for a perfect match donor-- with one potential (anonymous) candidate having already agreed to undergo further testing. Then she took on another chemo treatment like a pro-- and thankfully, she has the next few days off.

Meanwhile... and I'm not just saying this because it's International Women's Day... Nancy is hands-down the strongest person I've ever known. How she is enduring all this poking and prodding, pain and nausea, and back and forth travel almost every single day-- is completely beyond me. And that she does most of it with a smile on her face and the same great spirits the Sunshiny Superwarrior Goddess is known for-- is absolutely inspiring.

Please tell her how incredibly awesome she is as soon as you have a chance, wouldya?

WE LOVE NANCY, and... 

ALL IS WELL!

DAILY NANCY UPDATE #53

Greetings. 

This is the fifty-third in a series of DAILY NANCY UPDATES I will be posting until the amazing Nancy Neufeld Callaway is in full remission and we have kicked her leukemia on its ass. 

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 and follow the prompts!

BREAKING NEWS

Today we voted. 

Which, on the face of it, is not necessarily the best way to spend your day off from chemo. Nevertheless, after dropping the boys off at school, I came back to take the two of us to our polling place anyway.

And can I tell you? There was just something so delightfully normal about the whole experience. We went to the same old home of the same old couple in our same old neighborhood that we always vote in. Then we each cast our votes for Mayor, some school board officials, and a few assorted ballot initiatives-- followed by that goofy thing where you put the sticker on your nose and pose for a selfie.

Then I went to write. She kept herself busy at home. I'm about to teach my USC class. And that's basically that-- until tomorrow when we're back at UCLA to continue her treatment.

Also-- how cute is she in that damn teddy bear hat?

WE LOVE NANCY, and... 

ALL IS WELL!

DAILY NANCY UPDATE #52

Greetings. 

This is the fifty-second in a series of DAILY NANCY UPDATES I will be posting until the amazing Nancy Neufeld Callaway is in full remission and we have kicked her leukemia on its ass. 

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 and follow the prompts!

BREAKING NEWS

Today we're doing some footwork. 

What does that mean? It means doing our homework, and getting a few additional opinions on exactly what should happen next in Nancy's treatment. She's still undergoing the second phase of chemotherapy-- but we're also actively seeking a perfect match donor for her hopefully upcoming bone marrow transplant. We'll keep you posted on all of it, as always. Otherwise, until she starts her next chemo on Wednesday-- there's really not much to tell, except that her blood numbers are pretty much improved across the board-- and best of all, she's currently not neutropenic (which means she can go back to a normal diet without any bacterial-related food limitations).  

WE LOVE NANCY, and... 

ALL IS WELL!

DAILY NANCY UPDATE #51

Greetings. 

This is the fifty-first in a series of DAILY NANCY UPDATES I will be posting until the amazing Nancy Neufeld Callaway is in full remission and we have kicked her leukemia on its ass. 

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 and follow the prompts!

BREAKING NEWS

Today I took Nancy back to UCLA for what was supposed to be a round of both regular chemo and intrathecal (spinal) chemo. But once again, she was feeling really run down. And once her routine blood tests were done-- they revealed that her ANC (immune system) numbers were pretty low.

So the decision was made not to give Nancy intrathecal chemo-- which didn't break her heart, since spinal taps of any kind suck-- but she still got regular chemo in the form of two quick, not exactly painless shots.

Nevertheless... did the Sunshiny Superwarrior Goddess complain? No, she absolutely did not.

POST SCRIPT

Of course, I don't mind complaining a little bit. Or at least trying to dispense a little wisdom for anyone who (God forbid) even remotely finds themselves (or a loved one) in the vicinity of what we're going through. 

Even in the best hospitals in the world with the most incredibly skilled and dedicated staffs-- mistakes still get made every day. And today, we had a nurse who made a big one-- insisting Nancy needed to take a medicine that after only two months of battling cancer, she knew full well she wasn't supposed to take. So we questioned her advice. And after some hemming and hawing and conceding to our demand that she call the doctor for confirmation-- the nurse finally came back and admitted she was wrong. 

Was it an honest (albeit slightly cocky) screw up? Yeah. And we all make them.

But it was also a very good reminder for us that a patient's best advocate is quite often the patient herself. She (or the family and friends who have her back) have to constantly take notes (I'm also a big fan of using the voice recorder function on my phone) and pay close attention at all times to what's being suggested, prescribed, and administered. Otherwise, what's already a pretty lousy situation can accidentally, but very quickly get worse.

Not to worry, though. Because WE LOVE NANCY, and... 

ALL IS WELL!

DAILY NANCY UPDATE #50

Greetings. 

This is the fiftieth in a series of DAILY NANCY UPDATES I will be posting until the amazing Nancy Neufeld Callaway is in full remission and we have kicked her leukemia on its ass. 

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 and follow the prompts!

BREAKING NEWS

Today, Nancy woke up feeling tired. Extremely tired. Then fell back asleep. Then woke up again. Then drifted off once more while I took the boys to school... only to wake back up again just in time to catch her ride to UCLA (thanks Karen!) for another round of chemo.

But it wasn't until she got there that she finally realized why she was still fighting such fatigue.

Due to continuing chemo at increased doses, her hemaglobins had gotten low-- so she required not just one, but two full transfusions before they could even think about giving her any more chemo.

Then, of course, they gave her more chemo.

But fortunately, now the Sunshiny Superwarrior Goddess is home, fully awake, and ravenously hungry.
Which means it's time for dinner and bye for now.

Except for one more thing. WE LOVE NANCY, and... 

ALL IS WELL!