January 2006 Archives

I'm OK with 'saviour sibling'... I call her that way all the time. I'm more or less OK with 'designer baby'... It can get controversial.. But I'm NOT OK with 'spare part baby'... I don't like that.

Concern over 'spare part' babies Children created as so-called "saviour siblings" to aid a sick brother or sister must be monitored to ensure their wellbeing, experts suggest.

It warns that once a child has been created to save a sibling, there could be a temptation to view them as a spare parts bank.

The report says: "Taking blood from the umbilical cord after birth causes no ill effects, but the removal of bone marrow is more controversial as it causes discomfort, although the long-term risk of harm is slight.

"However, once it is accepted in principle that children can be created to save the lives of siblings, perhaps more extensive - ie the donation of a kidney - or repeated tissue donations may be seen as equally permissible."

The report suggests it would be difficult to justify preventing parents who have a child with a life-threatening condition from attempting to create a saviour sibling.

But it says there have to be safeguards for family relationships and the wellbeing of the child in such circumstances.

Read the complete article via BBC here.

Contribution of Alfredo d'Argence.

There are currently 92 live immune bracelet pictures. I need 108 more pictures for the iPod popularity contest..

"Kung Hei Fat Choy" (Happy New Year -- literally, Prosperity Be With You)

This Map by Google Analytics is a graphical representation of the volume of yesterdays visitors to andy.org.mx coming from locations around the world. The largest points indicate locations driving the most visitors to andy.org.mx.

United States - 41.82%
Mexico - 26.65%
Iran, Islamic Republic - 4.09 %
Spain - 3.30 %
United Kingdom - 2.90 %
China - 2.37 %
Argentina - 1.98 %
Peru - 1.85 %
Canada - 1.58 %
Venezuela - 1.32 %
Other - 12.14 %

According to this article Jim Boonyaratanakornkit, a medical student from The University of California San Francisco found a gravity-dependent immune deficiency. The article mentions that space crews have an increased susceptibility to infection...

I wonder how do bacteria and viruses respond to zero gravity?

The goal of Jim's project was to analyze the changes in gene expression in immune cells upon gravity reduction to find gravity-dependent signaling pathways. Microarray gene expression analysis was performed in cultured human T lymphocytes. The low gravity conditions were simulated by Ficoll-Hypaque density gradient centrifugation. The lymphocytes used in the experiments were either activated (by Con A or anti-CD28 antibody) or not activated (used as a control). Around 99 genes were found to be up-regulated in the activated lymphocytes in a normal gravity environment. Among them is the gene for interleukin 2 (IL2), which stimulates T and B cell activation and proliferation and leads to mounting of an immune response. Il-2 and other effector genes of the activated T cells are under the transcriptional control of the upstream genes that are in turn regulated by protein kinases PKC, PKA, PI-3K. Jim and his research team discovered that a simulated low gravity condition resulted in a down-regulation of the genes comprising PKA, but not PKC or PI-3K pathways. Even though there exists an overlap in the expression of some downstream target genes in all three pathways, a gravity-dependent deficiency in one of them might now explain an increased susceptibility to infection in space crews.

Read via Synapse The UCSF Student Newspaper here.

Josie King was a 18 month old girl who died as a result of hospital errors. Through the creation of a patient safety program, the King's hope to help prevent this from ever happening to another child.

This taken from www.josieking.org:

It is estimated that as many as 98,000 Americans die each year from preventable adverse events—defined as injuries caused by medical mismanagement. Even using the lowest estimate, medical mismanagement is the fourth leading cause of death, exceeding rates for motor vehicle accidents, breast cancer and AIDS.

Watch and listen to Josie's Mom below:

Thank you Tony Drago!

We're now permanent residents of The United States of America.

Yupi yupi yepa yepa ándale ándale arriba arriba!

And here's an ad for Tony Drago:

I received this article from Gareth Cook @ the Boston Globe about a way to multiply blood stem cells.

The article cites Dr. Eva Guinan (we met her Oct. 30th 2004) who was one of the attending physicians during Andy's stem cell transplant at Children's Hospital Boston.

This is something that umbilical cord stem cell banks will like to promote... As a matter of fact Viacord offered their "Selective Amplification" technology to me back in June/July 2004, but Andy's stem cell transplant experts told me it was too risky.. Viacell now even has a movie about "Selective Amplification" in their website.

Here's the Boston Globe article:

Biologists cite way to multiply blood stem cells
Cambridge research may aid bone marrow transplants

By Gareth Cook, Globe Staff | January 23, 2006

Biologists announced yesterday a way to dramatically expand populations of blood stem cells, a discovery that could improve bone marrow transplants and make them available to more patients.

Bone marrow transplants save the lives of thousands of Americans every year, mainly cancer patients, but many others are denied treatment because the cells that give the transplants their regenerative power -- blood stem cells -- are quite rare, and doctors have no way of substantially increasing their number before giving a transplant to a patient.

One of the most immediate applications of multiplying blood stem cells would be to make the blood taken from umbilical cords at birth more widely usable as an alternative source of stem cells for patients awaiting bone marrow transplants, said Dr. Eva Guinan, associate director for clinical and translational research at the Dana-Farber Cancer Institute. Cord blood has blood stem cells, but not enough to help many adults. Thousands of Americans die every year waiting for a bone marrow transplant.

The technology could also have a wide range of other applications, improving the safety of current procedures and making new ones possible, said Guinan, who is also a bone marrow transplant doctor at Children's Hospital Boston.

Read the article via Boston Globe here.

The live immune bracelet.
Contribution by Belen Ll. Z.

There are currently 91 pictures. The contributor of the most popular picture according to flickr will win an iPod a as soon as I receive 200 pictures of the live immune bracelet.

A new live immune picture.
There are currently 91 live immune pictures.

Andy had thousands of blood tests and I've been following technology that helps doctors, nurses, phlebotomists and patients to find veins faster and more accurately.

Back in May 27, 2005 I found the Vein entry indicator device.
And back in October 7, 2004 I found the Vein Contrast Enhancer.

Today I received news about this gadget from Georgia Tech's School of Mechanical Engineering; they invented a vein finder device that uses Doppler ultrasound technology.

They say,

“For example, IV (intravenous) insertion is especially difficult in dehydrated patients because their blood vessels lack normal volume,”

And according to the article, Doppler is electromagnetic and sound waves interacting with a moving object and blood is a moving substance, so ultrasonic waves reflected from blood vessels provide critical information about a vein's location.

The patent-pending vein finder is composed of two parts: A reusable unit houses the electronics and signal processing components, while a disposable coupler box holds a reflector and needle guide. The needle guide is positioned parallel to the sound beam being transmitted by a transducer in the device’s reusable section.
As medics move the device along a patient’s arm or leg, the transducer emits a thin acoustical beam, about the size of pencil lead, into the reflector. Then the reflector directs the ultrasonic waves into the patient’s skin at a slight angle. The device can determine the direction of blood flow to distinguish arteries (which carry blood away from the heart) from veins (which carry blood to the heart). Once the device detects a vein, an alarm is triggered, and medics insert the needle.

Read the article via Georgia Tech Research News here.

If you search for a drug here and then make a purchase at drugstore.com Andy will be rewarded with 10% of the purchase amount. It's that simple.

search:

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Get 20% off 16-oz. Cetaphil. (Ends 2-14-06)
Get up to 20% off select body lotions including St. Ives, Lubriderm & more! (Ends 2-14-06)
Get up to 20% off Johnson & Johnson's line for babies and kids. (Ends 2-14-06)
Get $2 off select One-A-Day vitamins. (Ends 2-14-06)

I received the following comments today from Jackson's Mom:

You and your family are such an inspiration to us. Whenever I feel overwhelmed, I remember that you've already been through this, and I'm inspired by your positive outlook and your courage.

And it's mutual...

More about Jackson soon.

Jack had his first ride home from school on the bus!

And the date is set for his stem cell transplant.

Go Jack!

I received news from the BBC where they talk about Dr. Sheng Chinese researcher that is using human skin cells placed into rabbit eggs to create 'human' embryonic stem cells.

Animal eggs 'to grow stem cells'
Stem cell researchers are looking to use animal eggs as 'hosts' to grow human cells.

Read the article via BBC here.

I received the comments from Fred Modell to the Vivaglobin product from ZLB Behring via The Philadelphia Inquirer.

"It's very good news for patients because there is a choice available to treating physicians," said Fred Modell, president of the New York-based Jeffrey Modell Foundation, started by Modell and his wife, Vicki, in memory of their son, Jeffrey, who died in 1986 at age 15 of a primary immunodeficiency condition.

"It's wonderful in terms of lifestyle - a child doesn't have to take off from school, or a parent take a day off from work," Modell said. "Intravenous immunoglobulin takes about four hours. Kids and adults go to a clinic or hospital every three weeks."

Read the article via The Philadephia Inquirer here.

I received this article from Duke University that describes Dr. Kurtzberg efforts toward more stem cell research.

Some sentences from the article that catch my attention are:

The use of blood cord stem cells for transplants in the absence of bone marrow donors has become increasingly popular since Kurtzberg performed the first transplant in 1993.

“Cord blood, which is usually discarded following birth, is a noncontroversial alternative to embryonic stem cell treatments,” Kurtzberg said. “Even more important, more than 90 percent of patients who can’t find a bone marrow match find a cord blood match.”

Unlike bone marrow, cord blood stem cells are matched using proteins, rather than genes, and have been shown to adapt more easily, she said. They are especially useful for younger patients, whose immune systems respond less aggressively to foreign cells. Storage and classification of the the cells, however, costs about $1,600 per unit.

Read the article via The Duke Chronicle Online here.

FDA today announced the approval of immune globulin for subcutaneous injection use for the prevention of serious infections in patients with Primary Immune Deficiency. The manufacturer is ZLB Behring.

Read news via FDA here.

Read the product page via ZLB Behring here.

Área de Disposición de Células Progenitoras de Sangre de Cordón Umbilical (CORDMX)
Centro Nacional de la Transfusión Sanguínea.

Para recibir información mas detallada, el Banco de Sangre ofrece todos los miércoles de 9:00 a 10:00 am platicas informativas en el Departamento de Investigación, Desarrollo y Control de Calidad del Centro Nacional de la Transfusión Sanguínea ubicado en :
Av. Othón de Mendizábal No. 195 Col. Zacatenco
Del. Gustavo A. Madero, CP. 07360, México D.F.
Tel. 5119-46-20 al 28 ext. 1308 y 1309

Jordan S Orange and Raquel P. Deering just published a new article at the Clinical Vaccine Immunology journal where they talk about a test to evaluate primary immune deficiencies like NEMO where cells are unable to recognize certain disease-producing micro-organisms.

Just imagine! Andy had to deal with infections for two years before finding his diagnosis, the NEMO mutation. This test will allow doctors to identify the problem faster.

The title of the article:
Development of a Clinical Assay To Evaluate Toll-Like Receptor Function
Deering and Orange Clin. Vaccine Immunol. .2006; 13: 68-76.

Here's a link to the article via the American Society for Microbiology

Here's a link to the Orange Laboratory.

She started walking when she was nine months old. She's twenty two months old now and already climbing jumping out of her crib. She did it twice today.
"Mamá, Mamá, Sofia se bajó de su cuna!!" Andy shouted (Mom, Mom, Sofia climbed down from her crib).

Dr. Orange's article published back in June 2002 at the Journal of Clinical Investigation has been cited twenty eight times according to Google Scholar.

The title of the article was Deficient natural killer cell cytotoxicity in patients with IKK-gamma/NEMO mutations. Andy's cells were used for that article.

Find all the versions of the article here.

Find the twenty eight citations here.

Find articles from Dr. JS Orange here.

Primary immune deficiency is sort of like cancer. It's the immune system that allows the uncontrolled, abnormal growth of cells.To prevent cancer you need a good immune system, no doubt about it. Cancer as a immune deficiency sounds coherent.

I ran this experiment today,

I did a Google search for "cancer" and I got 306,000,000 results.

Then I ran a Google search for "primary immune deficiency" and I got 1,830,000 results.

That's a difference of 304,170,000 results... And "primary immune deficiency" is three words.

How many people have cancer? 1,372,910 new cases in 2005 according to the ACS (PDF format).
Thats 222 internet web pages per cancer patient.

How many people have primary immune deficiency? 50 thousand diagnosed according to the IDF (PDF Format).
Thats 36.6 internet web pages per PI patient.

Some researchers say that one out of every one thousand people has some type of primary immune deficiency. The US population is 295,734,134 according to the CIA. That's 295,734 cases of PI. That would make 6.18 internet web pages per PI patient.

There are lots of celebrities that promote cancer awarenes. Lance Armstrong for example.. I don't know of any celebrity that promotes awareness for primary immune deficiency.

So why is there more buzz about cancer?

The Google experiment is a simple one but it helps me explain that I find more support and resources for cancer than for primary immune deficiency.

OK, I found the SHOUTS & MURMURS section at The New Yorker.

Still thinking about literary depth...

I suppose this is literary depth:

A Mother's Story by PAUL RUDNICK Issue of 2005-05-23 Posted 2005-05-16

Parents would certainly deny it, but Canadian researchers have made a startling assertion: parents take better care of pretty children than they do ugly ones.

Until I saw the article in the Times, I’d felt so utterly alone. Was I the only one? The sole parent on earth who knew the anguish, the heart-shattering despair of— All right, I’ll just say it, right out loud. I am the mother of an ugly child. She’s not deformed or handicapped or odd; she’s unattractive.

Here goes my first try at literary depth:

Until I saw other children in the hospital, I'd felt so utterly alone.. Was I the only one? The sole parent on earth who knew the anguish, the heart-shattering despair of- all right, I'll just say it, right out loud. I am the father of a boy with a primary immune deficiency. He's not deformed or handicapped or odd; he just had problems with his immune system.

Read A Mother's Story via The New Yorker here.

I like the telegraph style better.

I must admit, I've never read one single page of The New Yorker..

Founded in 1925, The New Yorker hardly changed for its first 60 years, both in its dry, type-heavy design and in its reputation as a writer's and reader's haven. In 1987 it was on only its second editor when management decided to shake things up. A rocky decade ensued, but The New Yorker is now back at the top of its game under David Remnick's editorship. Each issue offers commentaries and reporting on politics, culture, and events, with a focus that's both national and international; humor and cartoons; fiction and poetry; and reviews of books, movies, theater, music, art, and fashion. Several times a year special issues focus on a theme--music, fashion, business. The writing is mostly first-rate, frequently coming from top literary and journalistic talents. The New Yorker's weekly issues can seem overwhelming--so much good stuff to read, piling up so fast!--but it's as easy to dip in for a small snack as it is to wade in for a substantial meal. --Nicholas H. Allison --This text refers to an out of print or unavailable edition of this title.

Andy and I used to play with the suction machine in his hospital room during his transplant. The official use of that suctioning machine is to clear pieces of tissue and blood coming out of the patient's mouth when they get mucositis. We had another use for the machine.. We used it almost on a daily basis. The machine had a transparent tube connected to a transparent bucket in the wall. There was some sort of regulator on top of the bucket that helped us increase the tube's suction power.. Water and shampoo all over the floor and on top of the table... And he had a great time moving the tube all over the room suctioning water and bubbles to the transplarent bucket on the wall. He had to clear evidence before someone visited the room. Today I received the 'wiva-vac-usa' nasal cavity suctioning gadget for the home via email.

"Keeping the nasal cavity free of discharge is essential." "A standard household vacuum in the United States has a suction of 500 to 1000 watts, which is ideal for the WIVA-VAC." "How often the WIVA-VAC is used is determined by the amount of nasal discharge. Even minimum amounts of discharge can be drawn off repeatedly every day."

Through Andy's website you can get the WIVA-VAC and an ORECK. Andy gets commission for selling the Oreck, not the WIVA-VAC.

Here's some recent comments to the book from a respected publisher:

I've looked through the material you sent me about Andy Trevino's illness and the family's tremendous efforts to help him survive. It is certainly a powerful story--one that interweaves personal efforts with cutting edge science and medicine.

That said, I don't think this is right for [name of publisher] list. For a story like this to reach a mainstream audience, as it deserves, the writing should be on par with something you might find in the pages of the New Yorker. I think (and this is only one editor's opinion), you need that literary depth to attract readers. And I don't think that level of writing is here (nor would I expect it from someone without that background).

So I'm sorry to say I'm passing with regret. I do appreciate your sharing this story with me and I'll keep an eye out for updates in the news.

My new years resolution is to find literary depth and to start reading the New Yorker.

While looking back, I forgot to say that on June 18th. 2005 we walked with 'Hannah's Hopefuls'

Thank you Mom..

In yesterdays The Guardian in the UK Science editor Robin McKie talks about the cloning scandal and about Hwang's immense promise and hopes being dashed.

By making cloned embryos of adult humans, they would create a source of cells that could replace damaged or lost tissue. The ravaged brains of Alzheimer's victims would one day be provided with new nerve cells; diabetics would be given pancreatic cells to replace those killed off by their condition; and victims of cardiac disease would be treated with fresh heart muscle cells.

Read the article via The Guardian here.

ATF

Muchas gracias a Jorge Luis d'Argence M. por la venta de pulseras de Andy. El día de hoy recibimos el depósito. Más información sobre las pulseras aquí.

Sofia, Andy, Paulina and I decided to start two thousand and six visiting the hospital. We visited Six West, the transplant unit at Children's Hospital Boston.

I remember that January first is the loneliest day in the hospital.

We met five stem cell transplant patients,

A nineteen month old boy who had very good company.

A five year old boy.

A four year old boy.

A fifteen year old girl.

And a thirteen year old girl.

We told them to hang in there, we were there one year ago today and now were able to visit...

Nurses Maura, Jen & Kara were there and Isabel the CA.