Wednesday, March 29, 2017

DAILY NANCY UPDATE #60

Greetings. 

This is the sixtieth 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

Thankfully, Nancy's had two days off to try and get her land legs... but now we're headed back for another action-packed day at UCLA.


Lab work, blood infusions, bone marrow transplant meetings, physician consults, and another round of chemo. WOOHOO!

But hey, if she ain't complaining... I ain't complaining.  

LONG LIVE THE SUNSHINY SUPERWARRIOR GODDESS! 

HEADLINES

Please visit the link below for more information on how you can help in the search for a bone marrow transplant donor. Her doctors are closing in on a few promising prospects-- but until we nail one down-- we'll take all the help from you we can get. Remember, if you're not a match for Nancy-- sooner or later, you'll be a match for someone. And you might just save that person's life.


WE LOVE NANCY, and... 

ALL IS WELL!

Sunday, March 26, 2017

DAILY NANCY UPDATE #59

Greetings. 

This is the fifty-ninth 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

Nancy has been in and out of the UCLA Jonsson Cancer Center all weekend long.

In related news, she's felt like crap all weekend long.


And to be brutally honest... I don't know how she's doing it. 

Look, I'm trying to be as strong as I possibly can. I truly believe with my heart and soul she can beat leukemia-- and I have every intention of continuing to be the very best cheerleader I can in her fight. 

But I'm telling you, it's all I can do to get through these days.

And I'm not having to get poked and prodded by nurses, or shot up with toxic chemicals and infused with the blood of strangers-- much less feel weak, achey, dizzy, and nauseous 24/7.   

To tell you I hurt for her wouldn't do her own pain justice.
And to tell you I'm proud of her would only make sense if you could see how she smiles in spite of it all.

Nancy has some huge decisions to make this week about exactly what happens next with her treatment. So every positive vibe and prayer for clarity you can spare to send her way would be greatly appreciated.

I've never seen anyone like the Sunshiny Superwarrior Goddess.

HEADLINES

Please visit the link below for more information on how you can help in the search for a bone marrow transplant donor. Her doctors are closing in on a few promising prospects-- but until we nail one down-- we'll take all the help from you we can get. Remember, if you're not a match for Nancy-- sooner or later, you'll be a match for someone. And you might just save that person's life.


WE LOVE NANCY, and... 

ALL IS WELL!

Tuesday, March 21, 2017

DAILY NANCY UPDATE #58

Greetings. 

This is the fifty-eighth 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 yet another spinal tap with intrathecal chemo at UCLA Radiology.
Did I perform the spinal tap? No, I did not.
But I did get to wear this stylish lead apron and bandana so I could hold her hand during the procedure.


Then Dr. Michael Linetsky worked his magic with a .25 gauge needle the length of a straw.

Sorry for the graphic detail. But the good news is, if you ever need a spinal tap-- Linetsky's your man. It's the first one of several she's had to endure that barely made her flinch. 

But of course, we all know that's only because she's the Sunshiny Superwarrior Goddess.

HEADLINES

Please visit the link below for more information on how you can help in the search for a bone marrow transplant donor. Her doctors are closing in on a few promising prospects-- but until we nail one down-- we'll take all the help from you we can get. Remember, if you're not a match for Nancy-- sooner or later, you'll be a match for someone. And you might just save that person's life.


WE LOVE NANCY, and... 

ALL IS WELL!

Sunday, March 19, 2017

DAILY NANCY UPDATE #57

Greetings. 

This is the fifty-seventh 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

Nancy had chemo all weekend long. That pretty much sucked.
But this evening, we took a walk around the neighborhood. That didn't suck at all.


HEADLINES

Please visit the link below for more information on how you can help in the search for a bone marrow transplant donor for the Sunshiny Superwarrior Goddess. Thanks.


WE LOVE NANCY, and... 

ALL IS WELL!

Friday, March 17, 2017

NANCY'S BONE MARROW TRANSPLANT DONOR DETAILS

This is a dedicated post for all information pertaining to our search for a perfect match donor for Nancy's Bone Marrow Transplant. 


Although this information has already been included in the last two blog posts-- I am repeating it here once more for convenient access by any or all potential donors.

Because many of you have very kindly asked if there's any way you can be tested as a potential bone marrow transplant donor-- here are the key criteria and optimal conditions necessary for a perfect match:

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: 


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: 


Even though it's reputable, the results are much fasterand 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 Nicole Lim (nlim@coh.org) so they'll also receive a copy of your testing results. The address at City of Hope Hospital's Division of Hematology and Hematopoietic Cell Transplantation is: 1500 Duarte Drive, Duarte, CA 91010. Nicole's phone number and fax number are as follows: PHONE (626) 218-6286 FAX (626) 301-8362. And if you need it for your forms: Nancy's DOB is 11/7/63. You should be doing a buccal swab test.

5. What happens if you already know from reading the first four criteria that you're not a viable candidate? Well, there's still another option. Some of the younger folks reading this may have read #1 and #2 and thought-- "Hey, that's me. I might actually be able to help!" But then when they got to #3 and #4, they thought-- "Oh crap. There's no way I can afford that."

So if you'd like to consider sponsoring someone else's test-- you could add your name in the comments section below. Then if a younger candidate matching Nancy's ancestry would like to be tested-- perhaps we could pair them with you.

Again, if for any reason you can't or don't want to be tested-- that's perfectly fine. 
And if you're unable to sponsor someone else, that's alright, too. 
The fact that you've visited this blog and care about Nancy is more than enough.

But please do give us a heads up if you're willing and able to participate on either front. You can contact me directly at: tcallaway@mac.com.

THANK YOU.
WE LOVE NANCY.
AND ALL IS WELL.

Wednesday, March 15, 2017

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: 


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: 


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!

Monday, March 13, 2017

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: 


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: 


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!

Wednesday, March 8, 2017

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!

Tuesday, March 7, 2017

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!

Monday, March 6, 2017

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!

Thursday, March 2, 2017

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!

Wednesday, March 1, 2017

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!