Stem Cell Clinic

‘His legacy lives on’: Grandmother who helped create newborn screening law tells history of bill – News-Leader

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Two-year-old Regann Moore lights up as she watches videos on her iPad at home on Thursday, Feb. 20, 2020. Moore has a rare disease known as Krabbe Disease and received a life-saving stem cell donation less than a month after being born.(Photo: Nathan Papes/Springfield News-Leader)

Soon after the News-Leader published a story about 2-year-old Regann Moore,a Springfield child whose life was saved thanks to a newborn screening test, someone tweeted the story toMissouri State Rep. Becky Ruth.

"I bawled my eyes out," Ruth said. "I just cried."

She cried because she knew Regann is alive thanks to the death of Ruth's grandson, Brady.

"I cry and smile when I see these children," Ruth said. "We are always so thankful. For us, we see Brady's death wasn't in vain. His legacy lives on by helping save the lives of other children."

More: Springfield child with rare, deadly disease continues to amaze doctors, family

Regann, who is 2 now, was diagnosed right after she was born withKrabbe Disease, a rare metabolic disorder that must be diagnosed at birth and treated as soon as possible with a stem cell donation.

The newborn screening is important because babies with Krabbe Disease appear healthy at birth. Signs something is wrong usually don't appear until it's too late for treatment to be effective.

That is what happened to Brady in 2009. He wasn't diagnosed with the disease until he was 4.5 months old too late for treatment.

Brady died 10 days before his first birthday.

Brady Cunningham died of Krabbe Disease just before his first birthday.(Photo: Courtesy of the Cunningham family)

That's why Ruth and her family fought to get lawmakers on board with making sure all newborns in Missouri are screened for Krabbe Disease.

TheBrady Alan Cunningham Newborn Screening Act was passed in 2009 and screening began in 2012. Ruthsaid her family was OK with the three-year lag because they realized the lab needed time to become equipped to test for the disease.

Missouri is one of just a few states that do the newborn screening.

Brady's law also includes screening for Pompe, Fabry, Gauche and Niemann-Pick diseases. Since then, SCID, MPS I, MPS II and SMA diseases are screened, as well.

Ruth became a state representative in 2015and said newborn screening is her passion.

Her experience with getting Brady's law passed is what led her to seek office.

"It showed me what just a regular everyday person can do and what a differenceyou can make," Ruth said. "People a lot of times complain about politicians and the legislature, but we also do very good things here."

Ruth said her family knows of another child with Krabbe Disease who was saved thanks to newborn screening and a stem cell transplant.

That child is now 4. Ruth said her family and that child's family have a "strong connection."Ruth said shehopes to someday meet Regann's family.

Brady Cunningham was born in 2008. His family is from Campbell in southeast Missouri.

Bradyappeared healthy at birth and was not tested for Krabbe Disease.

Ruth said he started having health problems after about a month and a half. Brady went through "a myriad of diagnoses," Ruth recalled, including acid reflux and seizures.

"Finally my daughter took him to Children's Hospital in St. Louis," she said. "They promised her he wouldn't leave without a diagnosis."

Missouri State Rep. Becky Ruth was moved to tears after reading about Regann Moore, a Springfield child whose life was saved thanks to newborn screening for Krabbe Disease. Ruth and her family encouraged Missouri lawmakers to make sure all Missouri babies are tested for the deadly disease after her grandson, Brady, died from it.(Photo: Submitted by Becky Ruth)

Three weeks later, Brady was diagnosed with Krabbe Disease, which rapidly destroys the nervous system.

"We were told there was nothing they could do," she said. "It was one of the worst days of all of our lives."

Brady was 4.5 months old when he was diagnosed. In order for a stem cell donation to have any chance of being effective, babies must have the transplant within the first month of their life.

Regann, the Springfield child, was given a stem cell donation thanks to an umbilical cord donation.

Thediseaseaffects about one in every 100,000 people in the United States.

"They are missing an enzyme that helps keep their nervous system intact," said Dr. Shalini Shenoy, Regann's transplant doctor. "Because this is missing, they have degeneration of the brain and nervous system. And if you let it progress, it is fatal very early."

Without the stem cell donation, babies die within the first few months, Shenoy said.

"You can't change someone's genetic makeup," Shenoy said. "But when you put stem cells into their bone marrow from somebody else who is normal, some of these cells migrate into their brain and into their nervous system and supply what they are lacking themselves."

It takes some time for the transplant to begin working for the transplanted cells to "settle down" and begin making the missing enzyme, Shenoy said.

"Because of that, the earlier you transplant a Krabbe patient, the more you will be able to rescue them," she said. "You want to catch them before too much damage is done. Once there's a lot of nerve damage, it's not reversible. If I saw a Krabbe patient two months after they were born or four months after they were born when they already had major problems, it's unlikely I'd be able to rescue them too much."

Since the screening and the stem cell transplant treatment are both relatively recent medical advancements, Shenoy said it's anybody's guess what the future will hold for children who, like Regann, were successfully treated with a stem cell transplant early on.

Ferrell Moore holds his two-year-old daughter Regann Moore at their home on Thursday, Feb. 20, 2020. Regann has a rare disease known as Krabbe Disease and received a life-saving stem cell donation less than a month after being born.(Photo: Nathan Papes/Springfield News-Leader)

Regann can't stand on her own or walk yet. But her family is determined to make that happen. She cannot talk but is learning sign language to communicate.

She has regular visits with speech and occupational therapists.

Regann's dad Ferrell Moore got to take her to the circus recently, something the little girl seemed to enjoy.

"She is the joy of my life," Ferrell Moore said. "When I come home, it couldn't be any better to see her and how happy she is to see me."

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'His legacy lives on': Grandmother who helped create newborn screening law tells history of bill - News-Leader

In Maine, Tougher Vaccine Rules Were On Super Tuesday Ballot : Shots – Health News – NPR

Pediatrician Laura Blaisdell, co-chair of Maine Families for Vaccines, joined supporters at the Augusta State House in February for a campaign event. Patty Wight/Maine Public Radio hide caption

Pediatrician Laura Blaisdell, co-chair of Maine Families for Vaccines, joined supporters at the Augusta State House in February for a campaign event.

Voters in Maine upheld a new state law that eliminates philosophical and religious exemptions for mandated childhood vaccines. A statewide referendum on Tuesday's ballot asked whether voters wanted to overturn the law that eliminates religious and philosophical exemptions for childhood vaccines. Bangor Daily News called the results with more than half of precincts reporting: 71.5% voted against overturning the new vaccine law.

Molly Frost of Newcastle wanted the new law to remain in place. Her 11-year-old son, Asa, has a compromised immune system. He was diagnosed with Hodgkin's lymphoma, a type of cancer, when he was 5 and has relapsed three times. Frost says Asa has undergone several rounds of chemotherapy, radiation and, most recently, a stem cell transplant.

"He, at this point, has no immunity against any of the things he was vaccinated for in the past and could get very sick from those diseases were he to catch them," she says.

Cancer and treatment for it make Molly Frost's 11-year-old son Asa, reliant on "herd immunity" among his classmates and community to avoid pertussis and measles. Patty Wight/Maine Public Radio hide caption

Cancer and treatment for it make Molly Frost's 11-year-old son Asa, reliant on "herd immunity" among his classmates and community to avoid pertussis and measles.

That worries Frost, especially because her family lives in a coastal county where vaccine exemption rates are at least 9 percent one of the highest rates in the state. She was glad when the Maine Legislature passed the law last year intended to protect kids like her son. It aims to boost immunization rates of kids entering school by eliminating non-medical exemptions. The law will go into effect Sept. 1, 2021.

"It's a huge infringement on personal freedoms," says Cara Sacks, co-chair of the group that put the repeal on the ballot, "on medical freedom in particular."

The group was hoping to repeal any ban on non-medical exemptions and includes parents like Angie Kenney who wanted to keep the philosophical exemption for vaccines. Kenney has used the philosophical exemption to refuse immunizations for her kids ever since her older daughter had an adverse reaction after receiving the chicken pox vaccine at 18 months old.

"She could not crawl," Kenney says. "She couldn't walk. She couldn't even feed herself. And this went on for almost a year."

Her daughter was diagnosed with a brain injury called ataxia. It's listed by the Centers for Disease Control and Prevention as an adverse event that's known to occur extremely rarely after chicken pox vaccination; Kenney says she received a payment from the National Vaccine Injury Compensation Program. Her daughter has recovered and is now a teenager. But Kenney also has a 4-year-old and doesn't think the state should force her to get either girl vaccinated. "I am not sacrificing my child for the greater good of the community," she says.

Across Maine, though, physicians and health organizations say the new law is urgently needed to protect public health because more and more parents are using exemptions.

Cara Sacks, campaign manager of the Yes on 1 campaign, stands with supporters at a press conference last month at the State House in Augusta, Maine. Patty Wight/Maine Public Radio hide caption

Cara Sacks, campaign manager of the Yes on 1 campaign, stands with supporters at a press conference last month at the State House in Augusta, Maine.

More than 5% of kindergartners in Maine now have non-medical exemptions more than double the national average.

That has pushed vaccination rates for many diseases below 95% the critical threshold to achieve "herd immunity" within a community and thereby avoid spreading a disease to kids who, like Asa Frost, have compromised immune systems.

Pediatrician Dr. Laura Blaisdell says she has daily conversations with parents about vaccines but has felt helpless in recent years as she has witnessed immunization rates drop in Maine.

"We have gotten to a point where there are no other solutions," says Blaisdell of the new law eliminating non-medical exemptions. She is now the spokeswoman for the group which fought the repeal effort.

Maine has the nation's second-highest rate of pertussis, a vaccine-preventable disease that's also known as whooping cough.

Blaisdell is also worried about measles. If other states have an outbreak of that highly contagious disease, she says, it could easily travel to Maine through the millions of tourists who visit the state each summer.

"That sort of traffic is exactly the sort of traffic that diseases like measles would just love," she says.

More than $1 million was spent on the referendum battle. The campaign to preserve Maine's new law received its initial support largely from doctors, nurses and health organizations. In the latest campaign filings, the group got a $500,000 boost from the pharmaceutical companies Pfizer and Merck. The trade group Biotechnology Innovation Organization, which represents the biotech industry, also contributed $98,000.

Meanwhile, the campaign to repeal the law, Yes on 1, adopted "Reject Big Pharma" as its primary slogan.

That campaign received much of its early support from individual donations and chiropractors. More recently, the Organic Consumers Association contributed $50,000. The Minnesota-based group has been criticized for stoking vaccine fears and contributing to a measles outbreak in the state's Somali community three years ago.

The backlash that has erupted over Maine's new law doesn't surprise Alison Buttenheim, an associate professor at the University of Pennsylvania. She studies vaccine hesitancy and state exemptions. When states eliminate entire categories of exemptions, she says, some people perceive that as parental rights being sacrificed for public health.

"You sort of wonder, could Maine have taken a different policy step?" Buttenheim says. "Maybe, [by] making those exemptions harder to get, [the state could have] accomplished the same goal of coverage and disease protection without having to go through a big repeal effort."

With the new law preserved Maine joins four other states that don't allow any non-medical exemptions for vaccinations.

This story is part of NPR's reporting partnership with Maine Public Radio and Kaiser Health News.

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In Maine, Tougher Vaccine Rules Were On Super Tuesday Ballot : Shots - Health News - NPR

The pains of caring for a family member living with cancer – The Star, Kenya

With the additional costs of medication, the family struggled to raise funds for treatment.

Ng'ang'a underwent chemotherapy for a year between 2015 and 2016.

Martin says the Ng'ang'a demanded the chemotherapy be stopped, said it was making him weak and always tired.

Since Early, 2015, blood transfusion and stem-cell transplants became almost daily procedures.

"National Health Insurance Fund only catered to the bed admission. I remember at one time his bill escalated to Sh127,000 at lancet laboratories and the NHIF could not cover anything. It was a problem for the family to raise that one-day bill, Martin said.

At this stage, my dad was overwhelmed with pain .

We had to create a cordial relationship with a blood donor centre in Eldoret since he started transfusion of blood cells almost every day. White blood cells became too scarce that his immune was too low. Even when he sneezed he would end up having a nose bleed, he said.

Martin said that with the daily hospitalization, the family was now doing everything possible to meet the bills.

Family disagreement

Martin's polygamous family did not make the situation any easier.

Nganga had two wives who had to take responsibility for making sure children from both households contribute towards the hospital bills and other expenses including transportation to hospitals, food and other miscellaneous.

With the polygamous set up, everyone was looking for excuses to contribute the least. We argued more on contribution than anything else, he said.

Ouma advised that the division of duties within the family is the best way to reduce the burden.

"The family can assign finance management to one person as the rest share between living with the patient, transportation and other duties," he said.

He observed that shared roles become more bearable to the family.

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The pains of caring for a family member living with cancer - The Star, Kenya

Cape Town Cycle Heroes Raising Funds for 5-Year-Old with Rare Genetic Condition – SAPeople News

Aaron Lipschitz (5) from Sea Point, Cape Town

Of the few known cases worldwide, Aaron is the only child who is unable to tolerate any food without becoming very ill. The only nutrition he has been able to cope with is a hypoallergenic formula called Similac Alimentum. He is currently fed via a MIC-KEY feeding port in his stomach.

As there is currently no cure for Aarons condition, the only way for him to overcome his recurrent infections and survive this condition, was to have a bone marrow transplant.

To help cover the costs of finding an international bone marrow donor, as well as assist his family with his ongoing medical expenses, acampaignwas created on donations based crowdfunding platform, BackaBuddy.

Over the course of two years, the BackaBuddy campaign has raised over R1 629 017.18 to support Aaron with contributions from over 978 donors both locally and abroad.

Finally in August 2018, Aarons family got the call they had been waiting for.

With the support ofThe South African Bone Marrow Registry, a 100% bone marrow match was found for Aaron overseas. At only 3 years old, Aaron underwent chemotherapy to destroy his current defective immune system before it was replaced with the donors bone marrow.

The risky procedure was met with complications when Aaron developed a very rare reaction to the new bone marrow, called a Cytokine Storm, which landed him in Red Cross ICU for a month. The fact that he was able to survive the transplant is a miracle, says Aarons mom, Taryn.

Aaron is a fighter in the true sense of the word. His doctors were trying to prepare us for the worst and I told them to wait and seeAaron survived against all odds. He has the most incredible zest for life and thirst for knowledge. says Taryn.

WATCH: Short documentary video on Aaron when he was 4 years old:

Since the bone marrow transplant, Aaron seems to be getting fewer infections but unfortunately, his immune system has not reconstituted as well or as quickly as doctors would have liked. To boost his immune system, he needs to have weekly immunoglobulin treatment.

When the transplant had no significant change on Aarons inability to tolerate food, his medical team decided to do a whole-genome sequencing to determine the root of the problem. They soon discovered a second rare genetic variant known as Fox P3, the gene responsible for the overall regulation of a persons immune system, which may be contributing to the food allergy component of Aarons condition.

Doctors also believe this second diagnosis may also explain why Aarons immune system responded so slowly to his bone marrow transplant.

Despite surviving such a tough procedure, Aaron still has a very long and challenging journey ahead. Whenever we feel that we are getting close to the summit of this mountain, the mountain seems to become higher. All we can do is keep our heads down and keep putting one foot in front of the other. says Taryn.

On the 8th of March, nine Capetonians lead by Rebettzin Sara Wineberg, will take on the Cape Town Cycle Tour, cycling a distance of 109 km to raise fundsfor Aarons ongoing medical expenses.

Aaron currently survives on a hypoallergenic formula administered 3-4 times a day via a MIC-KEY feeding tube in his stomach.

He still requires weekly immunoglobulin infusions where a tiny needle is inserted under the skin in his stomach to administer the infusion.

Aaron is in occupational therapy, physiotherapy and play therapy to help support him and allow him to lead the most normal life possible.

Rebbetzin Sara Wineberg from Sea Point, Cape Town, is excited to take on the Cape Town Cycle Tour for the second time, this year

I met Aaron when he was in the ICU just after his bone marrow transplant, things were not looking good and I came together with a group of women to pray for him. I have witnessed the miracle that is Aaron, he is our miracle and I want to help see more miracles come through for him and his family! says Sara.

Taking on the Cycle Tour for the first time, high schoolers from Cape Town Torah High School, Yehuda Hecht (16), Nissim Brett (15) and Joseph Meltzer (15) are enthusiastic to support Aarons treatment and make a positive difference. They will also be joined by Rabbi Pinni Hecht, Elenor Miller, Ronit Netter, Terry Deats and Aliyah Kaimowitz.

We are so fortunate that along this very challenging trail we have many angels helping us carry this load. Its been a relief to restart Aarons BackaBuddy campaign. Aaron still has a very long and challenging journey ahead. The years of high medical costs have really taken a financial toll on our family. says Taryn

Ahead of the Cycle Tour this Sunday, the Riding for Aaron campaign has already raised a total of R94 699.18 towards the fundraising target of R120 000 with contributions from 128 donors.

The Lipschitz family would like to encourage all South Africans, to register as bone marrow donors to give children like Aaron a second chance at life.

To date, theSABMRhas helped save the lives of nearly 500 patients with life-threatening blood disorders by matching them with healthy, unrelated bone marrow donors from South Africa and the rest of the world.

According to SABMR, Sustainability Portfolio Manager, Kamiel Singh, there are currently only 74 000 donors registered on the site to cater to over 57 million South Africans.

We are urging people to go onto theSABMR websiteto register as a bone marrow/stem cell donor. The process is as simple as making a phone call, filling out a form and having a mouth swab taken. You could save Aaron or another person waiting for their miracle. says Taryn

Register to become a bone marrow donor with the SABMR[click here]

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Cape Town Cycle Heroes Raising Funds for 5-Year-Old with Rare Genetic Condition - SAPeople News

BWW Interview: Judith C. of WELCOME TO THE CANCER CAFE at The Marsh Berkeley Uses Her Own Story to Bring Some Healing to Others – Broadway World

Judith C.(Photo by Leslie F. Levy)

Judith C. is an inveterate health care provider, even if her methods of practice have changed dramatically after being diagnosed several years ago with Multiple Myeloma, an incurable blood cancer. Working as a PT Clinical Specialist in Chronic Pain, Judith never imagined being on the other side of the provider-patient relationship. She now shares her journey in the hilarious and heartbreaking solo show "Welcome to the Cancer Caf" at The Marsh Berkeley. Her goal is to share the profound lessons she has learned along the way to educate and hopefully bring some healing to others. Proceeds from each performance will be donated to a local cancer organization chosen by Judith.

I spoke with her recently about how she came to develop the show and the various challenges it presented to her. It was unlike any previous interview I've conducted in that she is not some showbiz hopeful with aspirations that "Cancer Caf" will somehow springboard her into the big time. She understands her time on this earth is limited, and really just wants to use what she has learned to help others. In conversation, she is clear-eyed and direct, but also warm and very funny. Our wide-ranging conversation took some unexpected twists and turns into topics like Coney Island carnies and "The 25th Annual Putnam County Spelling Bee." The only struggle I could sense in her was to provide me with answers that were as honest and complete as possible. The following conversation has been edited for length and clarity.

The title "Welcome to the Cancer Caf" sounds deliberately cheeky -

Cheeky?

- In that it's both humorous and a maybe a little scary.

When someone gets a devastating diagnosis like cancer you enter the "C World" and you are in a place that some others haven't been, and I was just trying to give it you know a little bit of "Huh, so I'm entering this space." So I thought of a caf, and that's where the title comes from.

How would you describe the show, and what do you hope audiences might take away from it?

It's my story of going from being somebody who worked in the medical field to getting a diagnosis of an incurable cancer and going through a stem cell transplant when my mother died. While I was in the hospital at Stanford, she was on the East Coast in Brooklyn dying. We were very close so there's just a lot that happened in those years. And I would describe this performance as a journey that you can take that includes enough humor to bring you along into the reality of what it's like to have to make decisions and live through the treatment experiences, of trying to get more time with cancer.

My goal is that the piece speaks to different audiences, of course that people with cancer find ways to identify. "Oh, yeah, I remember when my best friend told me to eat pomegranates every day when I said I had cancer." - things like that. My partner happens to be a palliative care chaplain rabbi so we're both in this world. We actually both worked for Kaiser Oakland at the time so there's a lot of information about ideas around caregiving that are not [generally] thought of. Mostly, how we use that word and what that means, and a very strong message and influence to people - in particular oncologists, palliative care doctors and nurses, social workers, chaplains in the field - to bring them to a place where they remember a little bit more to see the people across their table as fully human. I worked in a pain management clinic where people's lives were devastated by pain issues, and I remember we'd sit around in team meetings and there's always that level of "there but for the grace of God go I" right? It's how we look at devastating news - we separate. Which can be extremely helpful, but it's also a way to numb ourselves, and I've always had this ability to really look at the full person. It's not that they have a broken arm; it's that this is a person who, you know, plays the violin and works as a cashier and now what's going on with her life? So there's a way of looking bigger at things and that's a lot of what I show. There's a local artist who said to me, "You know after seeing your show, just making decisions in my life is different." So I think how we come to decisions is illuminated. And then there's the general audience. You know, people who may or may not have somebody in their lives, or have a cancer diagnosis, and wanting to reach out because there's a way.

I remember when I first performed this, I used to thank the audience afterwards. "Thank you for coming to a play about cancer!" [laughs] Luckily, I got to work with the great maestro David Ford, who really honed my skills of having enough humor to shine light on challenging places. So people laugh and cry, and it often stimulates discussions after. Though it is my story, there is a part of me that's an educator, and I want to continue to do that. A lot of my motivation is to perform this for medical students, and oncology grand rounds. This will probably be my last public performances unless something else happens, because I have limited energy. I'm still in treatment and treatment changes. So it's not a theater piece like other sort of burgeoning young people, not young in age, but young at the field. You know, yes I learned a lot about writing for a solo performance, and acting, my skills have improved tremendously and it's a quality show. I'm sort of a natural at acting. My mom's side of the family are all carnies from Coney Island.

Did you have any prior experience as a performer?

Well, I juggled on the streets of New York as a clown when I was like 18. Never earned enough for rent, but enough for meals for the day. I was also in a New York feminist theater troupe for a year in 1974, but that was it for acting. As a Feldenkrais practitioner, you lead people through movements and I also was a clinical specialist in pain management. I had a number of online physical therapy courses, so I had to be in front of a video camera, and in front of groups of people to present. So I had that behind me, and it all helped.

Do you remember when the play "The [25th Annual Putnam County] Spelling Bee" was here in San Francisco?

Yes!

So we got there early, and they do that thing where they ask you if you want to be in the performance you need to fill this form out. Well, I hadn't even known that, but I filled it out, and they give you a one or two-minute interview before the show to pick the people. They just ask you really quick questions like "Where were you born?" I said "Well, I was born in Brooklyn and my mom is from Coney Island." Then they pick five people from that. One woman had a funny sweater on, and one guy was kind of a nerd, and they picked me. I have to say, that was my premiere performance [as an actor] - at "Spelling Bee" in San Francisco. I think that was the highlight of my life, I was SO happy after that show. [laughs] It was years ago and I was a physical therapist, but I should have known - that was it for me, I was hooked!

What prompted you to turn your own experience into a performance piece, instead of, say, a journal article or even a TED Talk?

There was a lot of shock for me in that initial diagnosis and somebody just happened to send me an email about Armand Volkas who does therapeutic drama work. I contacted them and I was in pretty strong treatment. I said "I have no idea if I can do this." I had been in two support groups, and that had been, of course, interesting for me, but everybody in the room had cancer, right? This was a theater performance class to tell your story for healing and I was the only person with cancer. So I did that course and realized it really helped me in a way that was better than a lot of the other things I'd tried. You know, I'd been to support groups, cancer coaches, discussions, those kind of things, but this was different. I did the last performance at the end of the class and many of my friends came cause they were all in shock, too. It was much more of an emotional piece, it involved my childhood, you know, and things like that. It was very vulnerable, and like I say I'm a natural so it was good, it was well-written. I also think by being a therapist, somebody who works on people in one-hour slots, I understood time. I don't allow my solo piece to go over an hour because my attention for solo pieces is about an hour, so I've stuck to that.

What was the Marsh's role in helping you develop "Cancer Caf?"

After that, I was in more treatment, different things, but before the stem cell transplant, someone told me about a man named David Ford who does things at The Marsh. I couldn't make it to San Francisco because of the fatigue and the immune suppression and stuff, but he was doing the Berkeley Marsh on Sundays and I joined his class. I had been journaling and I think I could have written a book, but this is what got me - when you write for solo performance, what could be a chapter in a book is maybe only three lines, and in that you have to get people to know like where you are, what color the walls are, what the air smells like, what you're feeling and what's happening without you saying it. I just felt like that was getting deeper and deeper into this honesty place, shedding off layers. David had me at The Marsh Rising that November and he gave me a comment, which was simple, about changing the ending and I sat with it for five months. Then one day I was taking a walk on the beach and it was like finally I understood what he was saying. You know, honesty does not come easily, I'm sorry to say. What I loved about it was that it made me find the honesty in what I was going through.

Then I had a stem cell transplant. First they kill off your immune system, then they give you back some of your immune cells after they kill as much cancer as they can, and so then for six months I'm building up immunity again. Right at the six-month mark, I contacted David and said "I'm sort of getting back into society" and of course David knew the situation. I was writing about the transplant and David was like "But your mother died." And I was like "Yeah, but the transplant was a really big thing." And it was obvious to him that I wasn't putting the things together, so this writing has brought the pieces together that were more subconscious for me. And the other thing about this that's really big for me is that - you know how people do crossword puzzles when they're getting older to keep their minds sharp? So I have like, I won't remember your name, I have a memory for bodies and faces because that's how I work, but I have a terrible memory. So memorizing for performances was a huge feat for me, and has kept my focus, my mental agility just really tuned in a way. It's mental therapy.

It's beautiful work for me and to get to a deeper level, it's just like I needed some direction. I'm not working as a physical therapist right now, and when your work is gone, your identity is gone. This gave me an identity and a place to put my energy when I had energy, and it's just turned into the most useful thing. I mean, people say "What did you get from cancer?" and I'm always like "Nothing! Don't even got there!" [laughs] But what I got is that I am just so happy and so privileged to have been able to do this and to produce this show which of course took four and a half years in the making. I've learned so much and all my directors have been phenomenally lovely. I've had like four different directors, and even my daughter was one of my directors. She's a former Flamenco dancer and she helped me a lot.

Since you're up there onstage telling your own story, it's not like you can keep a safe distance from the material. What's the most challenging part for you actually doing the show?

I performed at the bone marrow transplant conference across the country two years in a row so my audience was primarily people who've actually had a transplant, possibly different cancers, some of them incurable, and I've had a number of people come up and go "You know, I try to forget I have cancer. Why would you do this?" [laughs] but they [also] say "Thank you, it was wonderful." I notice that there is at least one place in every show where the emotion, the vulnerability comes forth. It can be in different places, and it becomes this way of connecting with the audience that's so beautiful, and I can feel the energy going back and forth. At the end of the show, a woman came up to me in Santa Cruz and said, "I cared for my mother and there was a lot of issues between us. I had all this guilt and I just feel resolved after your show." and she broke down crying. I often have things like that happen so there's an emotional give and take that I get from performing the show.

The other piece that's a challenge for me is that the end needs to keep changing. So this show is different [from previous versions]. My cancer's coming back, so the end is different. I have to be present in that, and it is a challenge and it is emotional when I rehearse. I think it's healing. It's not not healing, for sure, there's no destruction in it. I think it's the sharing that emotional truth with people that's given me a lot of sense of connection and resilience. I think, there's a way that performing gives me resilience.

One aspect of the show is your journey from health care provider to patient. What did you find particularly surprising when the tables were turned?

The biggest thing that happened was that I was having feelings in the oncologist's office, and it didn't feel OK. I pulled my chart to go get a second opinion at one point and saw that my first treatment oncologist wrote that I had a history of depression, which I happen not to have had. I assume that he wrote that because I was crying in his office. That brought up a tremendous amount of questioning myself and the power imbalance, and shame. So I'm in shock from a cancer diagnosis and then I wonder if I'm responding appropriately. I didn't understand the job of an oncologist. I worked in a multi-disciplinary clinic so I had worked with orthopedics, neurologists, and I had contact with all my patients' doctors and surgeons. They're collegial, it's never been an issue, I'm out in that world, I know how to read research, best practices.

But I got to the oncologist's office and I just thought I broke down and I didn't understand their job. I thought "I have incurable cancer so they're not... are they gonna save me? What happens now?" And also I knew what it meant to be a really present provider. Not to toot my horn, but that is one of my skills, so I also knew when the providers were off, and that was hard for me and my partner. When I got diagnosed, no one gave me information about where to get emotional support, they didn't even mention the myeloma support group, in fact one doctor told me not to go, because he thought it's mostly people who were doing poorly, probably complaining, it'll bring you down. He'd never gone to the local chapter - our chapter happens to be very information sharing and bringing people up in what's available.

That reminds me of Charlie Garfield who started the Shanti Project because he was working on the cancer ward at UCSF and the oncologists couldn't deal with the patients' feelings. That was almost 50 years ago now, so I'd hoped things would have gotten better.

I don't think it's gotten much better, some oncologists of course have gotten better, but the hope is in palliative care. Palliative care doctors and nurses are trained for this level. Of course, most people think it has to do with hospice, or at least end of life, even myself. We were pushing the diagnosing oncologist on where can we get help, and she said "you can talk to palliative care." I was like "Wait a second, I just asked you if I was dying and you clearly said 'no.' I'm very confused here!" [laughs] I went to see this palliative care doctor and it was like sitting in the perfect air temperature. There was no judgment, she understood what I was going through, knew what the cancer world was about, and knew my diagnosis somewhat. We just talked, and I realized I didn't need her. I wasn't in the dying process, but now I have a connection with somebody. She was the first person that I didn't have to explain or do anything, and it was incredible. And I even asked her at that time, because the right to die act had been passed, if I had to make that choice at some point, would she be one of my two doctors and she said 'yes.' So if the role of palliative care were more available, that would be my thing.

And the other thing I realized, and I don't know that oncologists would agree with this, is I would like to call the oncologists chemotherapists. I think their title is wrong. Really what they do is treatment, and I came to an insight that may or may not be true, but I think it is and it was sort of an "aha moment." I think oncologists understand that the treatments they are offering are extremely challenging and there's a level, probably unconscious, where if they are meeting with somebody who seems very sturdy, then it must be easier for them to give the treatments. I think it's just by nature harder if they think there's a way you're not quote-unquote a "full fighter." I think I came on to something, there might be a piece of truth in that. And that came from writing, right? I asked myself "What is the oncologist thinking?" And also, this is a quality show; I don't just make fun of people. The oncologists are like caring but missing the mark, but then getting the mark. You have to have sympathy even for the challenging people in your life.

My next question is trying to get at that, but I don't know quite how to ask it. Have you found that even well-meaning people say or do things that drive you a little bit crazy?

Yeah, people say all kinds of crazy things. What did I particularly find hard? Two things - How to manage people who wanted to hug me. That was hard, culturally unbelievable. I've come up with all kinds of tricks, my partner even wrote a piece on her medical blog. We've had long discussions with people, you know, I'm on medication that keeps my white blood count extremely low so hugging is [unsafe for me]. Then people being offended and what to say to them. It's such a quick thing. People see you and they want to hug you because they've heard. I mean hugging is - I could go on for an hour about hugging!

And the other thing was the praying for me. People just say, "I pray for you every night." There's a scene in my performance about that, but I will tell you an interesting thing. One of my friends is a young African American woman who's big in her church and she came to see one of my performances early on. I called her after and I said "Were you offended by the scene where I talk about my discomfort with people wanting to pray for me?" In the scene, I ask "What are they praying for?" and I give options. She just gave me this beautiful line, she said "Not at all Judith. I pray for people all the time and I realize that I have never asked them what it is they want me to pray for them."

What are your plans for the show after The Marsh run?

It's all about connections, that's how privilege and race work in this country. I'm noticing that the Marsh run is giving me some credentials and am hoping that will lead to possibilities of getting it to nurses and grand rounds and things like that. At this point, I just put out as much energy as I can and hope the connections happen.

"Welcome to the Cancer Caf" runs Sunday afternoons March 8, 15 & 22 at The Marsh Berkeley, 2120 Allston Way, Berkeley, CA. For information or to order tickets visit themarsh.org or call (415) 282-3055 (Monday through Friday, 1pm-4pm).

Originally posted here:
BWW Interview: Judith C. of WELCOME TO THE CANCER CAFE at The Marsh Berkeley Uses Her Own Story to Bring Some Healing to Others - Broadway World

Back and neck pain is gobbling up our dollars — try this instead. – CNN

In 2016, Americans and their insurance companies spent an estimated $134.5 billion on lower back and neck pain -- more than all forms of cancer combined.

Researchers estimated US public, private and out-of-pocket spending on health care for 154 health conditions from 1996 to 2016 and low back and neck pain was first, followed by other musculoskeletal conditions including joint and limb pain, then spending for diabetes, heart disease, falls and urinary diseases.

"In terms of health and wellness, I think the study highlights [that] a lot of the issues could be prevented with proper wellness and nutrition balance in our lives," said Dr. Sheldon Yao, chair and professor of Osteopathic Manipulative Medicine at the New York Institute for Technology's College of Osteopathic Medicine. Yao was not part of the study.

Back pain can be debilitating, removing people from enjoying the activities of everyday life. This area of the body is composed of complex system of muscles, ligaments, tendons, disks and bones, which all coordinate to support the body.

Obesity, sedentary lifestyles, technology and poor diet have all been linked to back and neck pain.

"Obesity is a giant epidemic that plays a part into back pain," Yao said, explaining that a loss of core strength due to obesity can put someone at increased risk for back pain.

Poor posture and a lack of core- and neck-strengthening exercises -- such as planks, neck-tilts, yoga and lifting weights -- also contribute to increased incidence of low back and neck pain, because weak muscles fail to properly support bones and are more prone to injury.

The amount of time a person spends sitting at their desk or bending over their cell phone can also be to blame.

"Those are things where, as a society, we are not balanced," Yao said. "I'm not saying you can't eat any of those things, but just be aware of how much we're taking in in terms of those inflammatory foods."

How to alleviate pain at home

Health care spending on neck and back pain has increased each year since 1996, the study found, including newer and more expensive treatments such as stem cell and plasma injections, and an increase in surgeries instead of outpatient treatment.

The dollars don't appear to be well-spent, said Dr. Joseph Dieleman of the Institute for Health Metrics and Evaluation at the University of Washington's School of Medicine.

"The big picture trend suggests that all of the spending isn't essentially leading to fewer cases," said Dieleman, lead author of the study.

"In fact, we see that the health burden essentially hasn't changed at all over time, despite the huge increases in spending," he said. "It suggests that we have increased our spending a huge amount but we're not necessarily getting a lot more for it."

There are ways to mitigate back and neck pain at home before it becomes a larger problem.

It might seem counterintuitive, but staying moderately active by going for a walk can help reduce pain and prevent muscles from weakening.

"One of the biggest misconceptions is, 'I hurt myself. I need to go on complete bed rest and lie in bed and do nothing,' " Yao said. "That's been shown to really not be effective and ideally they need to try to maintain some form of activity as much as they can, and that's been shown to have positive results."

Eating healthier can not only reduce the inflammation that can lead to chronic back pain; it can also help someone lose excess weight, another factor of back pain.

Chronic back pain can be emotionally straining in addition to the physical symptoms.

Lower back pain can stem from a range of causes, from a mild strain to a traffic accident. If pain becomes something more serious, it's important to seek additional care from a doctor instead of self-medicating, Yao said. Doctors can recommend multiple treatments including muscle relaxants, injections and physical therapy.

Yao said the study highlights the extent to which society as a whole can improve on their muscle and joint health and ensure that patient care is at the forefront.

"Exercise is the last thing we do, eating right is the last thing we do," Yao said. "Society as a whole is so stressed and overworked and taxed out that health becomes really on the back burner.

"Patients have to take care of and responsibility for their own health. The more that a doctor can help facilitate that, the better."

Original post:
Back and neck pain is gobbling up our dollars -- try this instead. - CNN