October 2004 Archives
Gene therapy is just an expensive myth, claim scientists
By Robert Matthews, Science Correspondent
The "biotech revolution", which has been acclaimed by scientists as the path to miracle cures, has not delivered genuine improvements..
The much-vaunted technique of gene therapy has also yet to cure a single person of any major genetic disorder. To date, only a handful of children with an extremely rare immune disorder, known as X-SCID, have been successfully treated. The trials have since been halted following the discovery that two of the children had developed leukaemia as a direct result of the therapy.
Prof Steve Jones, a leading geneticist at University College, London, said that excessive claims had been made about biotechnology.
"It's clear that the technical advances have been grossly distorted from the start. I would say give it 10 years before deciding, but I would have said that 10 years ago," he said.
Read the entire article here.
Jeniffer Cuchinata
Victor y Nat,
Muchisimas gracias por el gorro de NEMO que le encantó a Andy. Llegó via Amazon directo al cuarto 613 del Children's Hospital Boston, una caja con envoltura especial, unos momentos antes de que recibiera las células nuevas.
Tenia que ser NEMO!
Y con esto recordamos que muy pronto Andy, con sus nuevas células, obtendrá la función total de NEMO, incluyendo las funciones de defensa. Le va a ganar la batalla al diagnóstico terminal, Andy va a estar curado.
Besos y abrazos.
Dear Greg and Kerry,
Thank you very much for bringing a rescue hero rinding a horse, play station game, other toys and candy to Andy. And to all the children at 6W, the Stem Cell Transplant Unit at Children's Hospital Boston.
You're great!
Here's a picture of Andy with the rescue heroe toy:
Our best to SAM!
Sofia, Andy, Paulina & Andres
Dear SJNMA Community; including all faculty, staff, and cadets:
Thank you all for your thoughts and prayers for Andy and Sofia.
The Get Well Soon Card for arrived directly to Andy's room at Children's Hospital Boston, last Friday October 29th, a few moments before the transplant procedure.
Here's a picture of Grandpa Victor (S'58) and Marilu with Andy (S'17):
'Work Hard, Play Hard, Pray Hard'
Thank you!
The Trevino's
Veno-occlusive disease (VOD) is a possible complication in the liver that most commonly occurs during the first weeks of the stem cell trnsplant. This complication is caused by the effects of the chemotherapy.
Kelli Cole
Jeniffer Cuchinata
Maura Padula
Michelle Hansler
Sofia visits Andy prior to her procedure:
Sofia preop:
Andy before receiving Sofia's stem cells:
Sofia after the procedure:
Michelle Lanni, bag of stem cells and Andy:
Andy a few minutes after the infusion started (nobody told him to do this):
Andy now has 2 birthday dates:
May 15, 1999
October 29, 2004
Kelli Cole & Kara Mc Dermott
James Labelle the resident, visited Andy's room tonight to talk about nausea. 'Nausea comes from the head' he said. And 'there are more options of medications we can give to help him' he concluded.
We're going to start with Benadryl.
And talking about residents, there's a study from The New England Journal of Medicine about sleep and reduction of errors. The article here.
What about a study for parents and sleep?, I say.
ATF
En Vuelo con una altitud de 41000 pies y una velocidad de crucero de 461KTS
Michelle Lanni
Kelli Cole
Kelly Avery
Kathy Mansfield
Kristin Souza
Victoria Pullin
Kelli Cole - Primary Nurse for Andy's Stem Cell Transplant
Senna is known as a 'stimulant laxative'. It acts on nerve endings in the gut wall. These nerves then make the muscles in the intestine contract with more force and more often. When the gut contracts, it moves the contents along faster, and so it reduces constipation.
As senna increases the activity of the muscle in the gut, it often causes stomach cramps.
Senna is given by mouth and takes 8-12 hours to work.
Lissa Pocze
Plan: Start Cyclophosphamide
Lisa Perry
So what is chemotherapy?
Its meant to kill stem cells in the bone marrow, but it also destroys some normal cells, particularly those which grow and divide fast like blood cells, cells from the gastrointestinal tract and hair cells. That is why the most common side effects are low blood counts, eating and digestion problems and hair loss.
The low blood counts are expected 1 to 2 weeks after receiving the chemo treatment.
I met Mary K. Russell today, mom of Catherine Lyons now 13 who is 10 years in Remission w/ Stage IV Neuroblastoma! Catherine had 2 stem cell transplants.
Mary K. Russel supports families by bringing dinner every Sunday to the transplant unit at Children's. She has been doing this for 10 years!
You can read Catherine's story here.
Thank you Mary!
Michelle Hansler
Lisa Perry
Leslie E. Lehmann, MD
Instructor in Pediatrics, Harvard Medical School
More about Dr. Lehmann here.
Michelle Hansler
On the Journal of Clinical Allergy and Immunology:
Lisa Perry
Abu Marilu viene en camino, desde la Ciudad de México a Boston Massachusetts.
Aqui vemos el vuelo de Abu Marilu.
The Absolut Neutrophil Count or ANC is the total number of neutrophils in your white blood cell count. The lower the ANC the higher the risk of infection. When the ANC drops below 500 the risk of infection is very high.
The ANC is an important number for two reasons:
1) The ANC determines when chemotherapy can be given
2) The ANC determines when you are neutropenic and at risk of infections.
Nancy Chisholm
Kendal Temple & Erin Burke
Abu "Lopita" como dice Andy, viene en camino, desde Tuxtla Gutierrez, Chiapas a Boston, Massachusetts.
ATF
I read about Charlie @ BBC on July 27th, 2004. At that time he was around day 25 after transplant.
Today, three months later, The Guardian reports "Boy cured by 'designer baby' cells".
A six-year-old boy has been cured of a rare blood disorder after receiving blood cells from a baby brother born to save him.
British doctors believe the remarkable recovery of Charlie Whitaker from Diamond Blackfan anaemia is a major step forward in stem cell treatment and gives families new hope of saving their sick children.
Charlie is believed to be the first child in Britain, and among only five in the world, to receive a successful transplant from a sibling born to help cure their illness.
..
The controversial screening process known as pre-implantation genetic diagnosis (PGD)is deemed a crucial part of the procedure because it enables a perfect match.
More via The Guardian here.
Andy had physical therapy on his bed today.
Jillian LeBrun, Physical Therapist Assistant helped him (and Teddy) to move his legs, arms and upper body.
ATF
Bacteria-Killing vs. Bacteria-Inhibiting Drugs in Treating Infections
When treating an infection, physicians may face a choice between using a bactericidal (bacteria-killing) drug, a bacteriostatic (bacteria-inhibiting) drug or a combination of the two. The solution is not always obvious, particularly since a drug that is bactericidal for one strain of bacteria may only inhibit the growth of another strain, according to an article in the November 1 issue of Clinical Infectious Diseases, now available online.
More via The Journal of Clinical Infectious Diseases here.
The Red Sox have staged the greatest comeback in the history of postseason baseball.
Buy the Boston Red Sox 2004 American League Champions Authentic Collection Gear and help Andy, he will get up to 33% of the purchase amount.
Boston Red Sox 2004 American League Champions Authentic Collection Cap
Boston Red Sox 2004 American League Champions Authentic Collection T-Shirt
More at Shop for a Cause here.
Nancy Chisholm
Kelli Cole - Primary Nurse for Andy's Stem Cell Transplant and Nurse of the Night.
Central line dressing change.
Continue Busulfan, Foscarnet, drawing blood for Busulfan levels.
MLB.com is the official website of Major League Baseball. Click on the logo below and a new window should appear, for each transaction generated, Andy will be rewarded with up to 33% of the purchase amount.
More at Shop for a Cause here.
ATF
Michelle Lanni
We're on Room 613
Andy Trevino
Children's Hospital Boston
6W Room 613
300 Longwood Avenue
Boston, MA.
02115
USA
Michelle Hansler
Dear Mansi,
Thank you very much for the Shrek collage!
It even has my name and last name on it.
I have it hanging on my room on top of my bed.
Here's a picture of a surprise present I'm sending to you, and another one for Jay.
See you soon!
Andy
Estimada Paula,
Muchas gracias por la tarjeta de Halloween!
Le llegó hoy a Andy. Lo mejor de todo es que el pudo salir del cuarto para ver si habia recibido algo.
Besos y abrazos
Andres
Chris O'Rourke-Friel
Erin Sherman
W. Nicholas Haining, BM, BCh
Instructor in Pediatrics, Harvard Medical School
More here.
Preparations are underway for the 109th Boston Marathon® on April 18, 2005, and Andy again will participate with the team of Kids at Heart at Children's Hospital Boston.
Last year Elyse Topp-Poirier ran the Boston Marathon to support Children's Hospital Boston and we were teamed up with Elyse to raise funds. You can find the Elyse 4 Andy website here.
And Brian Serroul also ran the marathon to support Childrens Hospital Boston and we teamed up with Brian to raise funds for Children's Hospital Boston. You can find the Brian for Andy website here.
We heard rumors that Elyse (or "Feliz" as Andy likes to call her) will run the marathon again!!
If you would like to team up with Andy this year send an email to andy@andy.org.mx.
We offer you a website, personalized shoes and fundraising letters.
ATF
Estimada Ana Jose,
Muchisimas gracias por los muñecos que le llegaron hoy a Andy via Amazon.com
Se puso muy contento (como se puede ver en la foto), le ayuda mucho a pasar el tiempo.
Besos y abrazos.
Gracias!!
Chris O'Rourke-Friel
Victoria Pullin
Kirsten Oneil
Victoria Pullin
Go Red Sox!
Rene Mastrodicasa
Victoria Pullin
A visit from Eleina Perry who took care of Andy in 7E.
A picture from the past:
Another picture from today:
Thank you for your visit!
Chris O'Rourke-Friel playing guitar, room 703.
Melissa O'Connor who gave us the tour of 6W
, the Stem Cell Transplant Unit at Children's Hospital Boston (prior to hospitalization) visited Andy today.
Christopher Reeve:
"For the true biological miracles that researchers have only begun to foresee, medical science must turn to undifferentiated stem cells,"
"We need to clear the path for them as rapidly as possible." Reeve told a United States Senate hearing in 2000 on federal funding for stem-cell research.
Nancy Reagan:
"Science has presented us with a hope called stem cell research which may provide our scientists with answers that have so long been beyond our grasp," Nancy Reagan told the Juvenile Diabetes Research Foundation.
A definition for umbilical cord banks:
It's a warehouse for suspended hope
Father Robert came by today.
Here's today prayer:
My Soul is the Infant
My Soul is the infant searching for the comfort of warm milk. My soul is the bodiless searching for temple. My soul yearns for rest from life's weary roads. I lift my soul to You, Oh Father.
Pull me close to You, dearest Lord, and comfort this infant. Hold my hand, and let me know You are here.
In the depths of my being, I remember Your comfort, just as I remember the comfort of the womb. It was there, in darkness, that I first knew You, for You called my name.
Here I am, Lord.
Comfort me. AMEN
Estimada Ysela,
Muchas gracias por la tarjeta y libro de Spiderman que le llegó a Andy via correo postal. Le encanta recibir cartas.
Besos y abrazos
ATF
Maguis "la nanny" de Sofía va de regreso a México.
Muchas gracias por tu ayuda!
El vuelo de Maguis rumbo a México
ATF
Chris O'Rourke-Friel
Elizabeth Traister
Molysmophobia / Molysomophobia refers to an abnormal and persistent fear of dirt or contamination.
Chris O'Rourke-Friel
Peggy Conway
Harvard teams want OK to clone
Human-cell work would be first in nation
By Gareth Cook, Globe Staff | October 13, 2004
Two separate teams of Harvard scientists are preparing to produce cloned embryos for disease research, and one has officially applied for permission from the university's ethical review board.
..
The team at Children's Hospital, which includes Dr. George Q. Daley and Dr. Leonard Zon, is particularly interested in studying diseases of the blood, such as sickle cell anemia and immune deficiencies.
For example, researchers might be able to clone a cell from a sick child and then produce a line of embryonic stem cells that are genetically identical to the child. The genetic problem that causes the disease could be corrected, and the cells could be directed to grow into blood cells, providing a replacement for the patient's faulty cells.
All of these steps have been shown to work in mice, in an experiment Daley's team performed.
''This is a fresh approach," Daley said. ''But obviously there are many steps between where we are and clinical applications."
In scientific circles, cloning is called nuclear transfer. The nucleus of a donor cell, which contains its genetic material, is transferred into an egg cell that has had its own nucleus removed. Researchers then prompt the egg to grow for several days, until it forms a ball called a blastocyst, typically a few hundred cells. From this blastocyst, scientists can then extract embryonic stem cells, which have the ability to become any cell in the body.
To date, only a team in South Korea has successfully performed nuclear transfer with human cells. In the United Kingdom, one team of scientists has been granted permission to conduct the experiments, and another has applied for permission.
At Children's, Zon and Daley said they are interested in doing nuclear transfer experiments, but have not yet worked out all the issues they need to in order to apply for permission, Zon said.
More via Boston Globe here.
CAMBRIDGE, Massachusetts -- Harvard University scientists have asked the university's ethical review board for permission to produce cloned human embryos for disease research, potentially becoming the first researchers in the nation to wade into a divisive area of study that has become a presidential campaign issue.
"We want to find new ways to study and hopefully cure diseases," said Harvard biologist Douglas Melton, a senior researcher who, along with a colleague, has applied for permission to do the work.
Embryonic stem cells are master cells that can form into any tissue of the body. Many scientists believe harnessing them might one day allow tissue regeneration to treat numerous diseases.
Harvesting stem cells from embryos kills the embryo, and some argue that it is tantamount to taking a life. President Bush has signed an executive order limiting federal help to all but the existing stem cell lines.
Democratic challenger John Kerry supports widespread stem cell research.
The research group asking for a green light to advance its work is one of two teams affiliated with the Harvard Stem Cell Institute, a facility set up earlier this year to fund such research.
The university is considering all of the ethical and other issues of embryonic stem cell cloning, said Provost Dr. Steven E. Hyman, although he did not know when the university would reach a decision. "We are being extremely careful about this," he told The Boston Globe for a story in Wednesday's editions.
None of the proposed experiments involves attempts to produce a cloned person.
So far, only a South Korean team has successfully performed nuclear transfer with human cells. British scientists also have been granted permission to conduct experiments.
More via Wired here.
Welcome Chaitan Richard Butte!!
Amy and Manish had a baby on Monday just before midnight, 2 1/2 weeks early.
Dr. Manish Butte is a Clinical Fellow, Division of Immunology, Children's Hospital Boston.
Check out photos and stuff at Dr. Butte's blog here.
Congratulations!
ATF
Erin Stabach
People Are Human-Bacteria Hybrid
By Rowan Hooper
Most of the cells in your body are not your own, nor are they even human. They are bacterial.
From the invisible strands of fungi waiting to sprout between our toes, to the kilogram of bacterial matter in our guts, we are best viewed as walking "superorganisms," highly complex conglomerations of human, fungal, bacterial and viral cells.
More than 500 different species of bacteria exist in our bodies, making up more than 100 trillion cells. Because our bodies are made of only some several trillion human cells, we are somewhat outnumbered by the aliens. It follows that most of the genes in our bodies are from bacteria, too.
Luckily for us, the bacteria are on the whole commensal, sharing our food but doing no real harm. (The word derives from the Latin meaning to share a table for dinner.) In fact, they are often beneficial: Our commensal bacteria protect us from potentially dangerous infections. They do this through close interaction with our immune systems.
More via Wired here.
Dawn Frieberger
Elizabeth Traister
From 7W
Lissa Pocze
Plan: Foscarnet 3 times a day
Julie Tarbox
Dear Mrs. deHart and Mrs. Champagne,
Andy wants to thank his KG classmates for the pictures and drawings they sent him.
We have a website with a thank you note for you and for them and a brief explanation about Andy's hospitalization
The website address is the following:
Burr School KG
See you soon!
Jen Spencer
Jodi Burns
Can Prayers Heal? Critics Say Studies Go Past Science's Reach
By BENEDICT CAREY
Read the article here.
I think there will never be a scientific explanation to the relationship between prayer and healing. I don't know of any type of measure for prayer. In my own particular way of praying, I always try to do it faster in the same amount of time, this allows me to feel as if I was praying more.
Thoughts and prayers are extremely important for Andy. Since Sept 14th. 2004 we have a new section on his website for thoughts and prayers in English and thoughts and prayers in Spanish. There are currently 16 T&P in English and 97 T&P in Spanish.
Post a Thought or Prayer here.
ATF
Nancy Chisholm
Jodi Burns
W. Nicholas Haining, BM, BCh
Instructor in Pediatrics, Harvard Medical School
More here.
Nancy Chisholm
Jodi Burns
Dear Mansi and Jay, thank you very much for the games and the coloring book.
It was great to see you. Hope to see you soon!
Thomas, thank you very much for the motorcycle drawing, the teddy bear and the ballons (including a red sox ballon).
We're glad you got to play with Andy, sing with Andy and play with Baldwin the Eagle, all in the same visit!
See you soon!
Last saturday Andy told me that he wanted to see his friend Baldwin the Eagle. So we sent out an invitation via email to Baldwin to find out if he wanted to come to Room 606..
We were very happy to receive a reply from Baldwin and even more happy to see him arriving to the 6W Stem Cell Transplant Unit at Children's Hospital Boston!
Andy greeted Baldwin in Room 606 with a big hug. And they played for a long time.
Thank you Baldwin!
And thank you Boston College Dance Marathon.
More pictures here.
ATF
Maura Padula
Julie Tarbox
There's no substitute for George R. from the CAT/CR, he has vast experince in finding veins, he makes Andy happy, makes his IVIG infusions as "easy as pie".
But this vein finding machine I found may help all the others..
Vein Contast Enhancer:
Uses a near-infrared camera to capture a real-time video image of the patient’s veins, a PC to enhance the contrast of the image and a desktop video projector to display it on the skin in real time. An array of near-infrared LEDs surrounding the camera’s lens illuminates the skin at a wavelength of 740 nanometres. This wavelength is strongly absorbed by blood, but is scattered by the surrounding tissue. The image from the camera is fed to a PC running imaging software that maps the image onto a bright green background in real time and boosts the contrast between the veins and surrounding tissue. The PC then feeds this image to a projector that beams it onto the skin.
More via NewScientist.com here.
Kelli Cole
Andy told me the other day he would like to see Baldwin the Eagle again.
He met Baldwin the Eagle at the Boston College Dance Marathon. Pictures of Andy and Baldwin the Eagle here.
The Dance Marathon website also shows a picture of Andy & Baldwin here.
Baldwin's Page here.
Today I received an email from Baldwin the Eagle himself! Hopefully he will be able to visit soon.
Julie Tarbox
Alfredo d'Argence organiza rifa de perrito Beagle en beneficio de "The Andy Fund".
Perrito raza Beagle nacido el 30 de Sept.
Los números van del 00 al 99 y sera respecto a la loteria del 5 de nov en México.
Quedan pocos boletos!
$350 pesos el boleto.
Mayores informes:
Alfredo d'Argence Z.
adargence@fincaperseverancia.com
Jen Spencer
Lisa Perry
John Kerry: “It’s time to lift the political barriers blocking the stem cell research that could treat or cure diseases like Parkinson’s. I believe that science can bring hope to our families. I want America to lead the world in the medical breakthroughs of the future. There’s no time to wait. At stake are millions of lives. I’m John Kerry and I approved this message because America can do better. It's time to take America in a new direction”
Narrator: “John Kerry for President.”
Watch the add via johnkerry.com here.
Here's a list of music played on Room 606 since we got here:
Play Count = 25
Unaccompanied Cello Suite No. 1 in G Major, BWV 1007: I. Prélude; Bach: The Cello Suites
Play Count = 24
Unaccompanied Cello Suite No. 1 in G Major, BWV 1007: III. Courante; Bach: The Cello Suites
Play Count = 21
Tropical Night;Natural Sounds
Play Count = 17
Ain't No Mountain High Enough; Marvin Gaye & Tammi Terrell
Play Count = 16
Scent of a Woman, Tango (Por Una Cabeza);Itzhak Perlman
Play Count = 15
The Man on the Flying Trapeze; Disneyland Children's Sing-Along Chorus & Larry Groce
Play Count = 14
March from Superman; Boston Pops Orchestra & John Williams
Play Count = 14
Oberon and Titania from Il Sogno (Ballet after Shakspeare's "A Midsummer Night's Dream"; London Symphony Orchestra & Michael Tilson