February 2006 Archives
He was playing at a friend’s house and had a bad fall.
He needs to wear a cast for three weeks. And he didn't complain much!
The only thing he told me was "Dad, my finger is growing...catch me if you can..."
Sofia wanted a cast also and the wonderful team of doctors at Children's Hospital Boston at Waltham gave Sofia a temporary cast.
Is he corageus? Is he used to pain? Is he brave? Does he know the difference?
Yes...
Being in the hospital with life threatening infections is no easy task. He had days, weeks and even months trying to get rid of infections and then the complications of treatments and being on so many medications, antibiotics and antivirals. His body was invaded, he had a tremendous amount of the pain, headaches, chills, rashes, stings, dizziness, nausea, vomiting and diahrrea. And he kept on smiling...
I could have done better to find his diagnosis faster. But the first article about NEMO came out around December 2000 and we arrived at Children's Hospital Boston for the first time in September 11th. 2000.
I guess he thinks that a bone is just a bone. He rather have a few more laughs and play catch me if you can than complaining about that...
He recovers readily from adversity...
He's the perfect example of resiliency, he recovers readily from adversity.
I found this clinical research protocol at the NIH website today.
They plan to enroll 600 people with x-linked hyper IgM Syndrome (CD40L gene) and NEMO gene mutations.
Six hundred sounds like a big number...
Study Type: Observational
Study Design: Natural History
Further study details as provided by National Institutes of Health Clinical Center (CC):
Expected Total Enrollment: 600
Study start: December 14, 2005
This protocol is designed to study the genetics and pathophysiology of Hyper-IgM syndrome, NEMO associated immune deficiency, patients with related primary immune deficiency disorders, and the blood relatives of immunodeficient patients. Patients will undergo evaluations that include history/physical, blood sampling, genetic testing, and possible tissue sampling. Among the aims of this protocol are to better understand genetic factors that lead to defects in host defense, and to use modern and evolving methods in molecular and cellular biology to elucidate the pathogenesis of these diseases. A better understanding of primary immunodeficiency could allow for the rational development of novel therapies for such diseases and to benefit the future patients, but it might not benefit the current patients directly. Follow-up will occur every six months - with evaluation and blood sampling.
More details here.
Today they insert a needle to a vein of the umbilical cord and let gravity do the job, blood flows through a small tube to a plastic bag. The problem is that only a small amount of blood (and stem cells) are collected. If they take long blood starts thickening or cuagulating and there's also the risk of contamination from the mother's blood or bacteria from the outside.
The amount we gathered from Sofia's umbilical cord was not enough to treat Andy and he was 17 kg. at that time and believe me we were very carefull about extracting all the blood from the umbilical cord and placenta.
According to this article, Israelis have came up with a device that is supposed to collect more blood (and stem cells) from the umbilical cord and with no needles.
The half-millimeter needle that is inserted into the vein, which is several millimeters wide, simply can't quickly and freely enough extract all the thickening blood.
Made mainly of polypropylene and latex, the SituGen comprises a holder which clamps around the umbilical cord, holding the cord in place as the placenta is delivered and absorbing the maternal blood so it doesn't contaminate the baby's cord blood. Attached to the holder through a sophisticated synchronization and sealing mechanism is a sterilization chamber into which the blood flows. A syringe is connected to the other end of the chamber which can be removed when full, emptied and then refilled.
The device:
Read the article here.
Simon is having some blood pressure issues and they are concerned he is not getting enough blood through the aorta from the kidney to the heart. They can't get the same reads on his leg and arm. He also has had a leaky IV for 2 days and now I'm wondering if he's been getting the chemo fully. I'm so nervous about if his immune system is going to get knocked down enough to allow Marrianas cells to take over. I'm so scared what if it doesn't work.
The PayPal button below helps Simon. Funds go directly to help Simon's parents pay for his medical care.
Simon is six months old today, he's from Chicago, he's at Childrens Memorial Hospital, he has NEMO and he's on day five of chemotherapy getting ready to receive stem cells from his sister. His Dad is a carpenter, his Mom is a office manager account representative for a small law firm.
You can help save Simon's life.
This is an important entry to my blog.
This is the real thing. Simon needs your help.
The PayPal button below helps Simon. Funds go directly to help Simon's parents pay for his medical care.
You can help save Simon's life.
French researchers will be able to work with stem cell lines derived from embryos. They can use unused embryos from in vitro fertilization if the couples dont plan to use them, or if the embryos have been diagnosed with a disease or malformation.
Here is the Government announcement via Agence de la Biomédicine (in french).
Please help Simon. I introduced Simon here three days ago. He's almost six months old, he has NEMO and a compatible sister. He's in the middle of his stem cell transplant, he's receiving chemo infusions right now to get rid of his immune system and replace it with the help of stem cells from his sister Marriana who is a full match.
He's at the stem cell transplant unit of Children's Memorial Hospital Chicago. He's on the fourth day of chemo.
Simon's dad David is a carpenter and he does not get paid if he does not go to work, there's no telecommuting for carpentry. And Simon's Mom Tracy is a office manager/account rep for a small law firm. Their insurance is "reviewing" the transplant procedure to see if they are goint to pay. They are afraid they might loose their house.
Tracy is nervous and very afraid. We've been exchanging emails since Monday.
Tracy is setting up a PayPal account for donations. I will post it here as soon as I get it.
And here is Simon's webpage and BLOG.
Visit www.cure4simon.org!
I believe from the bottom of my heart and even from my bone marrow that Simon will win the battle and recover NEMO functionality.
The man that was arrested at Children's Hospital cought inside the ICU will spend 30 days in jail according to CBS News.
Crazy!
What the hell was he doing at the ICU?
Down to earth explanation of stem cells and stem cell research.
Here are some of their charts:
Read the article via How Stuff Works here.
I received this interesting note from Spain,
Spanish Parliament Lifts Some Restrictions on IVF Treatment, Allows Varying Usage of Excess Embryos [Feb 21, 2006]
Spain's Parliament on Thursday approved a measure that would lift restrictions on the number of embryos that can be implanted into a woman undergoing in vitro fertilization and would allow couples to determine the future use of remaining embryos, the Associated Press reports (Associated Press, 2/16). The current law says that up to three embryos can be implanted during each IVF cycle, Reuters reports (Pinedo, Reuters, 2/16). According to the Associated Press, the legislation would remove the limits on the number of embryos that can be implanted because IVF is "costly and both physically and emotionally draining for couples." It also would allow couples to prepare extra embryos for implantation in case the first cycle is not successful (Associated Press, 2/16). Under the legislation, the embryos could "be reserved for (the couple's) own use in the future, given to other couples, authorized to be used in research, or (the couple) [could] ask for them to stop being preserved," Health Minister Elena Salgado said. The measure "in limited and exceptional cases" also would allow a third party to use embryos to help couples conceive a healthy infant to help save the life of a sibling, according to Reuters. The legislation would maintain the previous ban on surrogate motherhood and would oversee sperm and egg donations to prohibit their use for commercial purposes (Reuters, 2/16) . The measure now moves to the Senate for consideration, but a vote on the legislation likely will not be held for several months (Associated Press, 2/16).
We met Rich and Tracy at Six West during Andy's transplant, their daughter Hannah unfortunately passed away, she had a primary immune deficiency and her transplant didn't go well..
And here is Halie! Hannah's sister with her live Immune wristband!
From one of the few parents who decided to use them...
Top ten reasons why NOT to preserve your baby's cord blood at a private umbilical cord stem cell bank.
10. It's expensive. You have to pay a subscription fee of about $1,500 and then a yearly maintenance rate of around $100.
9. It sounds strange... Do you preserve other cells from your body (sperm, eggs, white cells) at a private bank (laboratory)?
8. DMSO causes a rash. The substance used to preserve the cord blood stem cells known as dimethyl sulfoxide (DMSO) may cause a rash after infusion to the bloodstream.
7. The bank stem cell deposit process is well known... They even send you flowers. The stem cell extraction process from the bank is not well rehearsed... They don't send any flowers.
6. As far as I know there are less than twenty cases world wide (ww) of parents who preserved the umbilical cord blood and then had to use it. And there are hundreds of thousands of people paying to preserve cord blood world wide (ww).
5. Smells strange. The substance they use to preserve the cells known as dimethyl sulfoxide (DMSO) smells like black olives.
4. You could preserve your own bone marrow stem cells today.... have you?
3. The amount of stem cells obtained from the umbilical cord are rarely sufficient for a stem cell transplant.
2. If you have a mutation, umbilical cord stem cells will also carry that same mutation.
1. Its better to donate. If everyone donates the umbilical cord blood to a public registry then it would be easier for the people who need to use them to find compatible cells.
And a bonus:
Umbilical cord blood private banks have strange marketing techniques. Don't believe everything they say.
Coming soon: Top ten reasons why you SHOULD preserve your baby's cord blood.
Simon is almost six months old, he's from Chicago.
Simon has NEMO, diagnosed 38 days ago.
Simon is starting conditioning (chemo therapy) tomorrow for a stem cell transplant. Simon will receive stem cells from his sister, she's a full match.
Please keep Simon in your prayers. Chemo should only make way for the new cells... The new cells should engraft rapidly and give Simon a new immune system and his chance to live to be an adult...
I believe from the bottom of my heart and even from my bone marrow that Simon will win the battle and recover NEMO functionality.
A prayer for Simon!
CONDITIONING -> CELL INFUSION -> ENGRAFTMENT -> BREAKOUT DAY
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Download 2006 Grammy winners on iTunes
The first time I talked about graft versus host disease (GVHD) here was around November 8th, 2004. GVHD is the donors cells attacking the patient after transplant..
The story at Reuters reports that a person with elevated levels of the protein called tumor necrosis factor (TNF) around day seven is most likely to develop GVHD according to the University of Michigan.
As many as half of the patients who undergo the procedure develop graft vs. host disease, with about 30 percent of transplant patients dying from it. It is a deadly condition in which transplanted immune cells attack the patient's skin, liver and gastrointestinal cells and ultimately can trigger a massive inflammatory reaction that can kill the patient.
Read the story via Reuters here.
A reproductive clinic in North Carolina is promoting PGD for gender selection...
The $13,000 procedure, which isn't always successful, involves stimulating a woman's ovaries to produce numerous eggs -- 10 on average -- that are then fertilized, he said. After the embryo is grown in the laboratory for three days, a cell is tested to determine the sex
The news channel has a poll there that asks visitors if parents and doctors should be allowed to select the gender of a child before birth:
From a total of 474 answers (@ 6:00pm 02/17/06), the percentage of answers are:
Yes - > 17%
No -> 77%
Not sure - >6%
I agree... PGD for gender selection is not a good thing..
Read the complete story via NBC 17 News here.
Baldwin the Eagle is Andy's friend.
We received news that during the Beanpot championship yesterday someone got onto the ice between the second and third period and made contact with Baldwin. We hope he's ok..
Story via Boston Globe here.
Andy met Baldwin at the Boston College dance marathon (pictures) for Children's Hospital Boston.
Baldwin visited Andy during his transplant at Six West the stem cell transplant unit at Childrens Hospital Boston.
Pictures of Baldwin's visit to Six West here.
Thank you George Spencer.
This is a great program by Terry Gross and Author Christopher Thomas Scott who is the head of Stanford University's Program on Stem Cells and Society. The title of his book is "Stem Cell Now".
He talks about pre implantation genetic diagnosis, Molly & Adam Nash, etc.
The stem cell has become a common denominator of hoe. Behind the sobering facts, patients and their families ask, "Will there be a cure? And will it be in time for us?"
Read and listen via NPR here.
This is a picture of the pump that infused Sofia's stem cells into Andy:
This is a picture of the "Crono Pump" (actual size 1:1):
Cool! More information via intrapump.com here.
I made my new years resolution to find literary depth...
I've been looking around trying to find it... I even asked one of the nurses at Six West about "literary depth" and she said.
"Tell the publisher who said that to come and spend a week with us at Six West and we will see if he's able to find literary depth..."
The manuscript is currently 165, 604 words long...Paulina is adding emotional comments in Spanish to each and every chapter... Marisol Sanchez who works for Ron Elberger is translating Paulina's comments and once that is finished Ron will do the editing.
In the meantime here is my best definition of "literary depth":
If you don't see anything above, you need to install the latest version of Flash.
My car after the blizzard:
I received this article from Liz Kowalczyk / Boston Globe. She reports that Children's Hospital Boston serves its french fries at the cafeteria with 1.9 grams of trans fat.
While we were there.. I ate salads and pizza.. no fries..
Eating at hospitals may be bad for your health
By Liz Kowalczyk | February 13, 2006
No one ever thought hospital food was tasty, but now it turns out it can be bad for you, too. The Center for Science in the Public Interest, a consumer advocacy organization in Washington, D.C., tested french fries from the cafeterias of 20 top US hospitals, including Massachusetts General Hospital, Brigham and Women's Hospital, and Children's Hospital, Boston.
Read the article via Boston Globe here.
More about trans fat via Wikipedia here.
Jackson is a boy from Houston Texas with NEMO. He has spent more than 6 months of his life in the hospital with infections. He has ectodermal dysplasia with a primary immune deficiency, similar to Andy. He has had a lot of infections, mostly bacterial infections (sepsis and bacterimia) of gram negative bacteria (serratia and enterbacter). He has had pneumonia and pneumocystis...
Jackson's parents are trying to find a compatilble stem cell donor for Jackson, they are also looking for a matched sibling.
Please visit www.cure4jackson.org and help Jackson.
You can help find a cure for Jackson!
We heard from Mark today, he is training away!
Getting ready for the 2006 Boston Marathon.
He was contacted from someone at Children's Hospital who wants to do a story about Mark and Andy as a team. He has also been chosen to run for Saucony as part of their marathon program.
Great news from Mark!
Make your gift today!
Mark Porter: Miles for Miracles Profile ID = PM0031.
Andy Trevino: Miles for Miracles Profile ID = TA0001
Children with primary immune deficiency receive intravenous immunoglobulin (IVIG) also known as gammaglobulin infusions frequently. IVIG is obtained from blood donors and it contains antibodies from the donors functioning immune system. Antibodies help fight infections...
Andy used to receive IVIG every two to three weeks.
Turns out that many children that use Medicare in the United States have not been able to receive their IVIG because Medicare is not paying enough to the hospitals and infusion centers that provide the life saving infusions. Medicare is paying the providers below the cost of the product... and it's a very expensive product...
I heard that private insurance has begun to follow Medicare's pricing guides including Blue Cross and Blue Shield in some states.
Restore access to IVIG in all sites of care for Medicare Recipients
The Immune Deficiency Foundation has an online advocacy program that allows you to send a personal message to members of the US Congress.
If you would like to help visit this website.
There are currently 94 live immune bracelet pictures. I need 106 more pictures to reach two hunderd. When we reach two hundred, the contributor of the most popular picture according to Flickr wins an iPod.
You can purchase the live immune bracelet here.
We were on TV in Florida!
I just found out that FOX News WSVN TV Miami, Ft. Lauderdale ran the “Little Lifesaver” story two days ago.
Don't ask me how did Fox News end up with the story... I don't have a clue..
When a child is sick, most parents will go to great lengths to help them. But how far is too far? One couple's decision to save their child has led to controversy. Yet, they would do it all over again. Seven's Lynn Martinez has their story in tonight's special assignment report - the Little Lifesaver.
Here's a link to the story.
And here's a link to the video (Via Windows Media, the Windows Media Player will open).
Be the First to get the 2006 US Olympic Team gear on Roots-Direct and help Andy
www.andy.org.mx
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Muchas gracias a las siguientes personas que recientemente mandaron un donativo en beneficio de Andy:
Pablo Marín y Karen Urtubees de Marín
Robert y Tere Urtubees
Jorge de Gortari
Su nombre aparece en la página de donadores en andy.org.mx.
Muchas Gracias!
My Dad wrote a very inspiring letter to his school, St. John's Northwestern Military Academy back in December. The school invited him to talk about Andy & Sofia.
His talk took place at the school's chapel on January 27th. All the school was there...
Here are some bulletpoints of his speech:
The family carried on! There were times, when all resources had been
exhausted, that Heaven seemed to be deaf, but we prayed hard… Looking
back, we never lacked anything to carry us through every day for over six
Years now. Whatever was needed, it appeared just in time and we discovered
that Someone always knows what to do at all times…We witnessed a miracle
and an extraordinary scientific achievement; we committed and gambled for
Life and at the end won!
We never lost our will to play hard; we have had very happy Christmases,
birthdays and other holidays in hospitals. During Andy’s chemotherapy and
thereafter the stem cell transplant,
“Extreme parenthood” is what Andres and Paulina called these very trying times. Anxiety, stress, anger, fear, panic; were always present and beaten... ANDY now 6 years old, has spend a little more than 675 hospital nights, some of them horrifying!
Remember the game is not over until the whistle blows… There seemed
not to be a solution…
The family had to face a very complex cross-border situation at the limits of science and even at times in the presence of some unfortunate opposition from very conservative quarters in Mexico and the USA, but again our commitment and gamble for life has opened new inroads into the unknown for the benefit of many others.
Andres and Paulina, wish the whole world to know about all the doctors, researchers, nurses, technicians who took care of Andy and who succeeded in helping him live a normal life, ANDY is now cured and leading his life as if nothing had happened. Andres’ diary is going to be turned into a book with the help of an editor.
And again, you can also always cope: when you work hard, when
you pray hard and when you do not forget to play hard..!
These principles lead you to become aware of how your worst nightmares
turn into your best dreams. Then you discover hope and you become aware
of how hope is only a waking dream that leads you to action.
And here are some pictures I borrowed from sjnma.org website:
More pictures via Shutterfly here.
SJNMA website here.
A man arrested at Children's caught inside the ICU....And he used to be a volunteer!
WOW...
CBS4) BOSTON A Malden man, arrested in December for allegedly dropping his pants inside a New Hampshire mall, is in trouble with the law again.
Boston Police arrested 52-year-old Richard Mullen Sunday morning after he was caught inside the infant intensive care unit in Children's Hospital. Police say Mullen was carrying a bag with a balloon and several condoms.
Mullen was a volunteer at the hospital for 11 years until his termination in December.
He was arrested twice in that month, once for allegedly dropping his pants while dressed as Santa Claus at the Rockingham Mall in Salem, N.H., and again for wandering around Raymond High School.
Mullen was arraigned Monday and is being held on $1500 bail.
Read complete story and watch via CBS News here.
There are currently 93 live immune bracelet pictures. I need 107 more pictures for 200. At 200, the contributor of the most popular picture according to Flickr wins an iPod.
Pie in the sky = A fanciful notion or ludicrous concept, broadly or extravagantly humorous, absurd, inviting ridicule..
A very good article at the Financial Times.
Here's what is happening: The press writes a lot about designer babies (sample of some articles I've found about designer babies) and some people read that and think that parents will be able to choose the color of the eyes and the intelligence of their babies.... And that is totally absurd...
Nobody knows the genetic roots of a higher IQ or the gene for beautiful eyes. And on top of that who knows the correct definition of beautiful eyes? What I consider a beautiful eye is different from another...
The issue that matters to me is that embryo screening to avoid inherited diseases is safe. We were extremely lucky to find Sofia.
Hype gave public 'pie in the sky' view on designer babies By Clive Cookson, Science Editor Published: February 1 2006 02:00 | Last updated: February 1 2006 02:00"Des-igner babies are not around the corner and probably never will be. There is a great deal of hyperventilating about this in the media - and it is unreal. We heard repeatedly from scientists debunking the idea of designer babies."
"It's just not going to work,'' said Prof Richards, a medical geneticist. "The notion that we can go along to a clinic, look at a number of embryos, and choose one that's going to be a beautiful blond with a brilliant academic record is pie in the sky."
The birth of "saviour siblings", deliberately conceived to act as stem cell or bone marrow donors to save a brother or sister threatened by an inherited disease, would be a very rare occurrence because the chances of success were low, said Prof Richards.
Read the complete article via FT here.
