Family shared grieving on Internet

February 29, 2008

Family shared grieving on Internet

Ill daughter’s final moment observed across world

An East St. Paul woman’s life began in a bubble and ended on the Internet.

Renee Dueck, 23, may have been born with the same lack of immune system that caused American David Vetter to spend most of his life as “The Boy In The Bubble,” but it was her four-month battle to survive her latest bout with leukemia that she ultimately lost on Tuesday night in a New York City hospital room.

But you didn’t need to be in the hospital to witness the moving experience of her passing. Anyone with a computer and Internet link can join with family, friends and supporters to see a comatose Renee in her hospital bed while her brother, Justin, accompanied by a music therapist on the guitar, sings Amazing Grace.

“She was comatose, but we believe she knew,” Dueck’s father, Raymond, said during a telephone interview from New York City.

“She knows what was happening when she went over.”

Raymond said he, his daughter, and his wife all set up separate websites to keep people informed about her progress and to get support.

Raymond, who on Thursday night was preparing to return to Manitoba with his wife, Martha, said the video is just one of numerous videos, photos, e-mails, and other thoughts his daughter’s family, friends and acquaintances put on the web.

“There’s tons of information out there on our blogs,” he said.

“We had 800 to 900 people on the e-mail list and each e-mail they sent was posted. (Renee) had a map on her blog and it showed people were sending e-mails from around the world.”

Jody Nicholson, vice-president of the Manitoba Funeral Service Association and a funeral director and manager at Glen Lawn Funeral Home, said more people are using the Internet to help them grieve.

“On occasion there have been demands for the funeral services to be webcast,” Nicholson said.

“In our global age, families are halfway around the world and unable to get home, but they still want to take part. And in the last three years or so we have posted obituaries on the Internet and families and people share their stories with family.

“It’s definitely a different world… in the old days we never would have imagined things like this.”

Carmen Nembhardp, a social worker who has done grief counselling, said the way the family has used the Internet is positive.

“With grief, you have to work through a process,” Nembhardp said.

“They’re doing stuff to help other people because it helps with closure. When the novelty of going on the Internet fades, they should put it in print because this can help other people with grief therapy.”

During the months filled with good times — and not-so-good times — Renee, her dad and her mother kept their separate websites up to date.

In fact, in what turned out to be his daughter’s last few hours, Raymond kept updating his website (www.daddydueck.blogspot.com/2008/02/
renee-has-been-promoted-to-glory.html) to let people know what was happening.

“Pray for Renee’s stabilized blood pressure, breathing as she should, lungs to work, heart to keep pumping, infection to go away — 8:23 a.m.”

“I had my PDA with me and I just wrote stuff and e-mailed it to the blog,” he said.

“The hospital here is very progressive and they don’t mind cellphones being on.”

Dueck — like three of her four siblings — was born with severe combined immunodeficiency (SCID), the same disease that affected Vetter.

Dueck was predeceased by her two older siblings, but she survived after receiving a bone marrow transplant from her mother in New York City shortly after she was born. One sister was born with it and was also given a stem cell transplant from her mother while another sister doesn’t have it. She is also survived by a brother.

She went to school in Riverton — her father owns Vidir Machine — and after graduation she joined Youth With a Mission, a Christian mission organization. She later took a film production course at Capilano College in Vancouver.

Dueck fought her cancer at the same hospital she was brought to when she was four months old.

Raymond said after their first two children died of SCID, and while his wife was pregnant with Renee, they read a story in Reader’s Digest about a treatment for it at Memorial Sloan Kettering Cancer Center in New York.

“The doctors always told us less there was less than a 25 per cent chance of our children getting (SCID) but out of five births only one of our children (doesn’t) have it.

“But (after Renee’s treatment) she was a very healthy kid — always the healthiest on the block,” he said.

Since October, the family has lived in a $4,500-per-month New York apartment to be close to her.

Her father hopes her website helps her memory — and writings and opinions — live on.

“She wrote there should be more prophets in society,” he said.

“She has written all kinds of plays and drama productions. She wanted to be in the Christian film industry.

Dueck’s funeral is on Sunday in Riverton.

The family is asking for donations to go to support the work of Renee’s favourite organization at http://www.ywamvancouver.com

kevin.rollason@freepress.mb.ca

linkback url: http://www.winnipegfreepress.com/life/story/4134486p-4726719c.html

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Cord Blood Stem Cells Give Life

February 24, 2008

Cord Blood Stem Cells Give Life

A medical option that’s now available

Rumbo, News Feature, Liliana Cadavid, Posted: Feb 24, 2008

Editor’s Note: Umbilical cord blood is gaining acceptance as a source for transplant stem cells to save babies with Leukemia and adults who cannot find matching bone marrow traits. Although this practice is considered controversial in certain medical and parenting circles, its successes have proliferated a number of cord blood banks nationwide. Liliana Cadavid, a Fellow of the DNA Ethnic Media Fellowship sponsored New America Media and SoundVision Productions, is a health reporter. She wrote this story for Rumbo, a Spanish-language publication based in San Antonio, Texas.

Cord Blood Stem Cells treatments are a feasible, accessible and increasingly available option in modern medicine that helps to save hundreds of lives. Camilla Alecia Diaz-Weber, 2 years old, had a big smile when she came in to the transplant clinic at the Methodist Hospital in San Antonio for her monthly check up.

She moved her little arms hurriedly, excited to see the clinic staff. Everybody was very familiar for her. She has been there many times after the cord blood stem cells (CBSC) transplant that she received four months ago.

When Camilla, from Eagle Pass, Texas, was 19 months old, she was diagnosed with severe combined immunodeficiency (SCID), a rare genetic disease that according to the National Human Genome Research Institute (NHGRI) affects 40 to 100 children in the United States each year.

Children with SCID are very susceptible to any type of infection because they lack an immune system, according to hematologist Jaime Estrada, member of the Transplant Program at the Texas Transplant Institute in San Antonio (TTI). “The only treatment that can cure these children is the bone marrow or cord blood stem cells transplant. If they are not treated the prognosis is fatal,” he said.

Stem Cells have the ability to develop into other types of cells with specific functions, explained hematologist Anthony Infante, professor of Immunology at the University of Texas Health Science Center in San Antonio. The blood from the umbilical cord, he added, is particularly rich in cells that have the ability to mature into others cells that form blood.

“Currently, CBSC are widely used to treat leukemia, diseases of the immune system and other inborn related disorders in children,” he said.

Camilla was fortunate. On July 14 2007, she received a transplant at the TTI, covered by her family’s private health insurer. The transplant saved her life.

“Her doctor told us that in about a year she should be totally cured,” said Lori Diaz Weber, Camilla’s mother.

Similarly to Camilla, Ithzbel Aurora Huerta, 3 years old, from Laredo, Texas, was treated with CBSC, was covered by Medicaid, but suffered from a different disease. When she was two months old, she was diagnosed with an inborn bone marrow failure known as Severe Aplastic Anemia and received the transplant. “If it had not been for the CBSC transplant, I would not have her with me today,” said Arizbel Perez, Ithzbel’s mother.

Arizbel said she never heard of treatment with CBSC, but now that she has learned about it, she tells all her girl friends if they decide to become mothers, they need to plan on donating their babies’ cord blood to a public bank. “Someone who did this at a certain moment, saved my daughter life,” she said.

The CBSC transplant has many advantages, according to Donna Wall, Director of the Bone Marrow and Cord Blood Stem Cells Children’s Transplant at TTI. The most important thing in a transplant, she explained, is to find a donor who is compatible and certainly one of the things that we like the most about CBSC is that we don’t have to find a donor that has exactly the same type of immune system.

Also, she added, it is easier to find a cord blood unit in a public bank than it is to find a live bone marrow donor. “When we perform transplants in children, the CBSC is our preferred source from an individual outside the family.”
But when it comes to treating adults, the CBSC might not always be so helpful.
The problem of CBSC transplants is that the cells that are available are the ones that were obtained at the baby’s delivery; there are no more, said Dr. Yago Nieto, professor of the Department of Stem Cells Transplant at MD Anderson in Houston.

“Sometimes, a unit of cord blood can be very small to treat an adult patient”, Yago said. “It can work well but we have to make sure that the number of cells will be enough according to the patient’s weight.”

Right now, scientists are studying an option to work in laboratories to expand the number of stem cells in a cord blood unit, said Infante, but “the idea is being able to do so without altering the stem cells’ ability to function properly.”

To Store or to donate- a dilemma
Is it better to pay for storing a cord blood unit of a newborn baby or to donate it to a public bank?

That’s a common question among mothers- to- be. It is also a frequent question that Dr. Donna Wall of the Texas Transplant Institute in San Antonio is asked by doctors, lawyers and moms. “Public Banks have an important purpose: provide units of CBSC to those that need them”.

The majority of people, she continued, are not going to ever need a transplant. “So, why pay to store a baby’s cord blood in order to use it for that same baby in the future, if that is not likely to happen”, she said. “On the other hand, many of the disorders we treat are inherited, so the blood is going to have the same problem.”

Doctor Yago Nieto, from MD Anderson in Houston, suggested that people should donate cord blood to a public bank. “Doing this causes no harm to health, it can help save lives and it does not cost anything. To store cord blood in a private bank will cost a lot”.

linkback url: http://news.newamericamedia.org/news/
view_article.html?article_id=8c94c16ef6e3c58bc3047676db7766e8


Cord Blood Stem Cells Give Life- A medical option that’s now available

February 24, 2008

Cord Blood Stem Cells Give Life

A medical option that’s now available

Rumbo, News Feature, Liliana Cadavid, Posted: Feb 24, 2008

Editor’s Note: Umbilical cord blood is gaining acceptance as a source for transplant stem cells to save babies with Leukemia and adults who cannot find matching bone marrow traits. Although this practice is considered controversial in certain medical and parenting circles, its successes have proliferated a number of cord blood banks nationwide. Liliana Cadavid, a Fellow of the DNA Ethnic Media Fellowship sponsored New America Media and SoundVision Productions, is a health reporter. She wrote this story for Rumbo, a Spanish-language publication based in San Antonio, Texas.

Cord Blood Stem Cells treatments are a feasible, accessible and increasingly available option in modern medicine that helps to save hundreds of lives. Camilla Alecia Diaz-Weber, 2 years old, had a big smile when she came in to the transplant clinic at the Methodist Hospital in San Antonio for her monthly check up.

She moved her little arms hurriedly, excited to see the clinic staff. Everybody was very familiar for her. She has been there many times after the cord blood stem cells (CBSC) transplant that she received four months ago.

When Camilla, from Eagle Pass, Texas, was 19 months old, she was diagnosed with severe combined immunodeficiency (SCID), a rare genetic disease that according to the National Human Genome Research Institute (NHGRI) affects 40 to 100 children in the United States each year.

Children with SCID are very susceptible to any type of infection because they lack an immune system, according to hematologist Jaime Estrada, member of the Transplant Program at the Texas Transplant Institute in San Antonio (TTI). “The only treatment that can cure these children is the bone marrow or cord blood stem cells transplant. If they are not treated the prognosis is fatal,” he said.

Stem Cells have the ability to develop into other types of cells with specific functions, explained hematologist Anthony Infante, professor of Immunology at the University of Texas Health Science Center in San Antonio. The blood from the umbilical cord, he added, is particularly rich in cells that have the ability to mature into others cells that form blood.

“Currently, CBSC are widely used to treat leukemia, diseases of the immune system and other inborn related disorders in children,” he said.

Camilla was fortunate. On July 14 2007, she received a transplant at the TTI, covered by her family’s private health insurer. The transplant saved her life.

“Her doctor told us that in about a year she should be totally cured,” said Lori Diaz Weber, Camilla’s mother.

Similarly to Camilla, Ithzbel Aurora Huerta, 3 years old, from Laredo, Texas, was treated with CBSC, was covered by Medicaid, but suffered from a different disease. When she was two months old, she was diagnosed with an inborn bone marrow failure known as Severe Aplastic Anemia and received the transplant. “If it had not been for the CBSC transplant, I would not have her with me today,” said Arizbel Perez, Ithzbel’s mother.

Arizbel said she never heard of treatment with CBSC, but now that she has learned about it, she tells all her girl friends if they decide to become mothers, they need to plan on donating their babies’ cord blood to a public bank. “Someone who did this at a certain moment, saved my daughter life,” she said.

The CBSC transplant has many advantages, according to Donna Wall, Director of the Bone Marrow and Cord Blood Stem Cells Children’s Transplant at TTI. The most important thing in a transplant, she explained, is to find a donor who is compatible and certainly one of the things that we like the most about CBSC is that we don’t have to find a donor that has exactly the same type of immune system.

Also, she added, it is easier to find a cord blood unit in a public bank than it is to find a live bone marrow donor. “When we perform transplants in children, the CBSC is our preferred source from an individual outside the family.”
But when it comes to treating adults, the CBSC might not always be so helpful.
The problem of CBSC transplants is that the cells that are available are the ones that were obtained at the baby’s delivery; there are no more, said Dr. Yago Nieto, professor of the Department of Stem Cells Transplant at MD Anderson in Houston.

“Sometimes, a unit of cord blood can be very small to treat an adult patient”, Yago said. “It can work well but we have to make sure that the number of cells will be enough according to the patient’s weight.”

Right now, scientists are studying an option to work in laboratories to expand the number of stem cells in a cord blood unit, said Infante, but “the idea is being able to do so without altering the stem cells’ ability to function properly.”

To Store or to donate- a dilemma
Is it better to pay for storing a cord blood unit of a newborn baby or to donate it to a public bank?

That’s a common question among mothers- to- be. It is also a frequent question that Dr. Donna Wall of the Texas Transplant Institute in San Antonio is asked by doctors, lawyers and moms. “Public Banks have an important purpose: provide units of CBSC to those that need them”.

The majority of people, she continued, are not going to ever need a transplant. “So, why pay to store a baby’s cord blood in order to use it for that same baby in the future, if that is not likely to happen”, she said. “On the other hand, many of the disorders we treat are inherited, so the blood is going to have the same problem.”

Doctor Yago Nieto, from MD Anderson in Houston, suggested that people should donate cord blood to a public bank. “Doing this causes no harm to health, it can help save lives and it does not cost anything. To store cord blood in a private bank will cost a lot”.

linkback url: http://news.ncmonline.com/news/
view_article.html?article_id=8c94c16ef6e3c58bc3047676db7766e8


Video

February 18, 2008

Universal Newborn Screening for Severe Combined Immunodeficiency (SCID) by Quantitating T Cell Receptor Excision Circles (TRECs)

A 33 minute long video by Mei W. Baker, MD. Also, available as an audio only MP3 file.

Linkback url: http://videos.med.wisc.edu/videoInfo.php?videoid=1676


Children’s Hospital Doctor Discusses SCID/Bubble Boy Disease

February 14, 2008

Children’s Hospital Doctor Discusses SCID/Bubble Boy Disease

Katie DeLong

John Routes from Children’s Hospital of Wisconsin appeared on Live at 12:30 to discuss Severe Combined Immune Deficiency (SCID), which is sometimes known as Bubble Boy Disease.SCID is a genetic disorder that is fatal without early diagnosis and treatment.SCID is the most lethal version of all primary immunodeficiency diseases. It often is called “Boy in the Bubble” after the movie of the same name that starred John Travolta, the true story of a boy with SCID who died at age 12 after spending his life in a plastic bubble because he was so vulnerable to infection.

SCID causes a defect in the white blood cells that helps protect the body from viruses, bacteria and fungi.

Doctors know that SCID is the result of a mutation in one of at least 12 genes, and bone marrow transplants are presently the best treatment.

Warning Signs:
• Eight or more new ear infections within 1 year.
• Recurrent, deep skin or organ abscesses.
• Two or more serious sinus infections within 1 year.
• Persistent thrush in mouth or elsewhere on skin, after 1.
• Two or more months on antibiotics with little effect.
• Need for intravenous antibiotics to clear infections.
• Two or more pneumonias within one year.
• Two or more deep-seated infections.
• Failure of an infant to gain weight or grow normally.
• A family history of Primary Immunodeficiency.

Click on the link below for more information.

For more information, visit http://www.chw.org/pip.
linkback url: http://www.todaystmj4.com/features/seenontmj4/15633332.html


Web exclusive: Complications keep ill girl from making next doctor’s appointment

February 7, 2008

Web exclusive: Complications keep ill girl from making next doctor’s appointment

02/07/2008, 2:15 pm

By Janet Cremer

janetcremer@daily-journal.com

815-937-3384

The very illness that requires 13-year-old Balei Chinski of Bourbonnais to get expert medical attention is also preventing her from getting the help she needs.

Complications from her rare immune deficiency disease have caused her family to postpone a trip scheduled next week to Duke University in Durham N.C., where she was to meet with medical experts.

The appointment will be rescheduled for mid-March.

“She’s still smiling and is cool about all this,” said Balei’s mom, Cheryl Chinski. “But she told the doctors she wants them to fix her. She wants to have a childhood and wants to spend time with her friends.”

Balei has been in the hospital every 10 to 14 days since November due to complications from her Undefined Severe Combine Immunodeficiency (SCID), which leaves her unable to fight infections. The rare illness affects about one in 500,000 people, according to Medicinenet.com. She also suffers strokes and has juvenile rheumatoid arthritis.

Just last week, Balei was a patient at University of Chicago Comer Children’s Hospital for five days, dealing with weakness, double vision and swollen joints. She was diagnosed with anemia and swelling of the blood vessels in her head, said Cheryl.

To complicate matters, when Balei gets sick, doctors often prescribe steroids, but she needs to be steroid-free for Duke experts to perform their tests, Cheryl said.

“We’re never able to wean her off,” she said.

The trip to Duke was to be the second in two months.

Her first appointment at Duke was in December, but was nearly missed when her Angel Flight was grounded due to weather. Angel Flight is a plane trip provided by a nonprofit network of pilots who fly for free those who need medical treatments. The trip was pulled off at the last minute when Kankakee resident Derek Denoyer donated his frequent flyer miles to the cause. Denoyer said he plans to do the same this time around.

Benefits planned

A “Shop for Balei” is set for 10 a.m.-3 p.m. Saturday, Feb. 16 at the Bourbonnais Municipal Community Center. Eighteen vendors will be on hand including Lia Sophia jewelry, Tastefully Simple and Pampered Chef.

The Red Knights Motorcycle Club in Manteno will host a benefit for Balei beginning at 1 p.m. Saturday, March 1.

The event, at the Kankakee VFW Hall, 756 W. Jeffery St., features a DJ, food, raffles and door prizes from 1 to 4 p.m. Tickets are $10. Evening activities are 6-11 p.m. and include music, food, a cash bar, silent auction and raffles. Tickets are $15 each.

Tickets may be purchased at King Music in Bradley, Veronda’s Music Village in Kankakee and People’s Bank in Bourbonnais. To make a donation or for other information, call (815) 939-0825 or (815) 937-1745.

linkback url: http://www.daily-journal.com/archives/dj/display.php?id=413610


Risk Factors For Severe RSV Infection In Immunocompromised Children Identified

February 4, 2008

Risk Factors For Severe RSV Infection In Immunocompromised Children Identified

ScienceDaily (Feb. 4, 2008) — St. Jude Children’s Research Hospital investigators and collaborators have shown how to predict if a child who is infected with respiratory syncytial virus (RSV) while being treated for cancer or another catastrophic disease is at high risk for developing severe infection. The finding will help clinicians improve guidelines for managing these infected children.

RSV is a common cause of pneumonia among infants, children and adults during winter, frequently causing fever, runny nose and coughs. It can be much more severe in patients who are undergoing cancer treatments and whose immune systems are suppressed. In these patients, the virus can move into the deep lung, causing pneumonia and other respiratory problems that can be fatal. However, it is difficult to predict which infected patient is likely to develop a serious lower respiratory tract illness and which one will continue to simply have a mild runny nose and cough.

The St. Jude team and collaborators found that if these children are under 2 years old and have very low levels of immune system cells in their blood called lymphocytes, they are at high risk for the RSV infection to become serious by moving into the lung. Such infections are especially dangerous because they can be fatal in some immunocompromised children, and there is no standard effective treatment for these infections, the researchers said. A report on the retrospective findings appears in the February issue of the journal “Pediatrics.”

“The new information is important because it helps identify children who are most at risk for severe disease using easily available clinical information,” said Aditya Gaur, M.D., assistant member of the St. Jude Department of Infectious Diseases and the paper’s senior author. “This narrows down the patient population who needs to be considered for antiviral therapy, which is costly and often inconvenient to receive from a child’s perspective. For example, one treatment for RSV infection is to have the child breathe an aerosolized form of the antiviral drug ribavirin for 12 to 18 hours, which is tough for the child and the parent.”

The findings of this study require confirmation in prospective studies, Gaur said. Results of the study also help define which children should receive medications that can help prevent RSV infection.

Another significant finding was that–unlike some previous reports in immunocompromised adults with RSV–neutropenia is not a risk factor for lower respiratory track infection, Gaur said. Neutropenia is an abnormally low level of neutrophils, immune system cells that engulf and digest germs.

“This finding is important because with cancer patients, clinicians are used to identifying those at risk for bacterial and fungal infections based on a patient having neutropenia,” Gaur said. This study shows that for RSV, which is a viral infection, lymphopenia and not neutropenia is what identifies children at risk.

Previous studies have shown that lower respiratory track infection, is more common in children whose immune system is suppressed, who are receiving chemotherapy or who have received a hematopoietic stem cell transplant (HSCT). However, while some studies report that lower respiratory track infection, due to RSV is fatal in 50 to 100 percent of infected adults, there is little information about this type of infection in immunocompromised children.

“We decided to analyze the course of RSV infection in children being treated for cancer to identify factors that could help us predict which ones were at highest risk for severe disease or death due to a lower respiratory tract infection with this virus,” Gaur said. HSCT is the transplantation of special cells from the blood or bone marrow that can give rise to all the blood cells of the body (red and white cells and platelets).

The St. Jude team studied clinical and laboratory information from the records of 58 patients who had tested positive for RSV infection. Among these children, 23 (40 percent) had acute lymphoblastic leukemia, 11 (19 percent) had solid tumors and 24 patients (41 percent) had acute myeloid leukemia (AML), severe combined immunodeficiency syndrome (SCIDS), or had undergone bone marrow transplantation. RSV disease in these infected children was classified as upper respiratory track infection only or lower respiratory tract infection; and children with both upper and lower respiratory track infections, were defined as having lower respiratory track infection.

Overall, 16 (28 percent) of these children developed lower respiratory track infection, due to RSV. The frequency of this type of infection was highest (42 percent) in patients who had undergone HSCT or who had AML or SCIDS. Five patients (31 percent) with LRTI died, an overall mortality rate of 8.6 percent. All deaths occurred in lower respiratory track infection patients who were severely immunocompromised from their cancer, from chemotherapy or from the HSCT.

Other researchers include C. M. El Saleeby (formerly of St. Jude and now at MassGeneral Hospital for Children, Boston), G. W. Somes (Department of Preventive Medicine, University of Tennessee, Memphis) and J.P. DeVincenzo (Le Bonheur Children’s Medical Center and University of Tennessee, Memphis).

This study was supported by the National Institutes of Health and ALSAC.

Adapted from materials provided by St. Jude Children’s Research Hospital, via EurekAlert!, a service of AAAS.

linkback url: http://www.sciencedaily.com/releases/2008/02/080204132525.htm


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