November 2006 Archives
I ran 10 miles for the first time in my life today!
Here is the route.
It took me 1 hour and 39 min.
It was 9.9 min per mile..
And I reached the summit of "heatbreak hill". It was not that bad..
While running I thought about Andy's first primary nurse at Children's Hospital Boston.
Her name is Ana Maria and she spoke a little Spanish and Portuguese but we could understand her better in English. She guided us to room 901 B, she opened the door of the room and we found a big woman sleeping on the sofa next to her daughters crib. We walked past them and through a curtain that divided the room. There was another brief interview with Ana Maria and with a resident, our neighbor was still sleeping and we could hear her snoring.
Paulina and I were very tired. Ana Maria was examining Andy and noticed he needed a diaper change.
“Be right back, I will get some supplies, you guys” Ana Maria said.
She came back with a new bag of diapers, a package of wet wipes, a bottle of cream, a bottle of powder, a bottle of desytin, mouth swabs, a bar of soap, a bottle of shampoo, a couple of towels, three pillows, three sets of white sheets, three white blankets, a pink bucket, a paper bag with cotton balls, a diaper pin, white tape, blue gloves, a thermometer, a stethoscope and three pink water resistant cloths.
WOW is there going to be a party in here? That definitively beats the supplies we used to get in the other hospitals in Mexico. I thought.
Ana Maria organized all the supplies around Andy’s crib, and in a closet and drawers assigned to him. She used the pink bucket to hold the soap, cream, powder, desytin, mouth swabs and cotton balls.
“This is the nurse call button; call me if you need anything.” She said.
There was another button on the wall that said,
CODE BLUE
“That’s the emergency button; press that one only in life and death situations. You won’t need that one…” Ana Maria said and smiled.
Paulina and I were trying to find a place for our luggage and found the perfect spot under Andy’s
crib.
“These are for his crib right?” Paulina asked Ana Maria while pointing at the sheets.
“Oh no, you relax; that’s my job. Would you like anything to drink? How about some apple juice?” Ana Maria said.
There was a constant beep on the hallway.
“Oh that’s the heart rate monitor from one of your neighbors.” Ana Maria told us..
She used the pink water resistant cloth on top of the white sheets on Andy’s crib to prevent leakage while changing his diaper.
“This is a strange G-Tube, looks very uncomfortable.” she said when she saw the tube on Andy’s stomach.
“You need a mic-key button cutie. Oh you are so cute!” Ana Maria told Andy.
This nurse is great! I thought.
Ana Maria washed her hands and then used the blue gloves to pick up a diaper pin and white tape and then turned to us and asked,
“Would you like me to secure his catheter?”
She used a piece of white tape around the catheter leaving enough space for the pin. She inserted the diaper pin through the tape and then thourgh Andy’s T-shirt.
“If for any reason the line is pulled, the first thing to go is the diaper pin instead of the catheter.” Ana Maria said.
Brilliant! That was exactly what we needed six months ago to secure Andy’s catheter and prevent him from loosing them so often. I thought.
Paulina and I were amazed watching all the things that Ana Maria was doing. She was preparing Andy to go to sleep. Paulina slept on the green sofa chair next to Andy’s crib and I found a family room next to the elevators with a couple of chairs...
More later.
The 111th edition of the Boston Marathon will be very special. This year Mark Porter will run the marathon again teamed up with Andy.
More information at: www.mark4andy.com
Mark is a cancer survivor and last year he ran his first marathon. He liked it so much that he's doing it again. Back in April after finishing the race he told me that it was the best experience he’s ever had.... He invited me to run the Boston Marathon in 2007.
My brother Victor will run the marathon.
More information at: www.vic4andy.com
Victor is running because "Children's Hospital Boston saved my nephews life".
And I will run for the doctors, nurses and researchers that saved Andy's life on multiple occasions. I will run for Six West, the stem cell transplant unit at Children's Hospital Boston where Andy had the stem cell transplant two years ago. And I will run to thank the runners who ran in previous years for Andy.
Please help us give back to Children's Hospital Boston.
Today I ran 4.1997 miles in 34 minutes (Route via Gmaps Pedometer)
I'm trying to reach "heartbreak hill".
When Sofia saw me with the thermal underwear, shorts and a bandana covering my bald head she said, "que guapo!"
That helps!!
While running I thought about Officer Settles. He's the first person we saw at Children's Hospital Boston when we arrived for the first time from Mexico City via Chicago to the ER. It was September 11th, 2000 (one year before the Sept. 11th terrosist attacks) around 11: 30 PM and I asked Officer Settles if he knew about a place where I could find something to eat. We were very hungry and tired from the 10 hour the trip. We didn't have time to eat in the airplane because Andy was not feeling well.. We must have changed at least 2 diapers per hour and he vomited about five times... We tried to clean... He had a central line infection, we had to feed him with parenteral nutrition (nutrition through his veins). We decided to come to Boston when the surgeon in Mexico that was supposed to change the infiltrated central line told us to leave if we wanted him to survive... They didnt know what else to do..
Andy and Paulina stayed at the ER room while I went out to find food.
"Up the stairs to your right.... You will find food there Sr." Ofrficer Settles said, with a very loud voice that could be heard all around the hospital lobby...
More to come...
The 111th edition of the Boston Marathon will be very special. This year Mark Porter will run the marathon again teamed up with Andy.
More information at: www.mark4andy.com
Mark is a cancer survivor and last year he ran his first marathon. He liked it so much that he's doing it again. Back in April after finishing the race he told me that it was the best experience he’s ever had.... He invited me to run the Boston Marathon in 2007.
My brother Victor will run the marathon.
More information at: www.vic4andy.com
Victor is running because "Children's Hospital Boston saved my nephews life".
And I will run for the doctors, nurses and researchers that saved Andy's life on multiple occasions. I will run for Six West, the stem cell transplant unit at Children's Hospital Boston where Andy had the stem cell transplant two years ago. And I will run to thank the runners who ran in previous years for Andy.
Please help us give back to Children's Hospital Boston.
Mark is running the marathon. Victor is running the marathon. I'm running the marathon.
In exactly one hundred and forty five days from today the oldest annual marathon will take place here in Boston. One of the world's most prestigious road racing events. Twenty six point two miles (42 km) from Hopkington to Copley Square in Boston.
We joined the Children's Hospital Boston - Miles for Miracles Program as a patient family for the first time in 2004 and since then we’ve teamed up with four runners to raise funds for Children’s Hospital Boston.
Elyse Topp-Poirier
Brian Serroul
Kelli Cole
Mark Porter
The 111th edition of the Boston Marathon will be very special...
This year Mark Porter will run the marathon again teamed up with Andy.
More information at: www.mark4andy.com
Mark is a cancer survivor and last year he ran his first marathon. He liked it so much that he's doing it again. Back in April after finishing the race he told me that it was the best experience he’s ever had.... He invited me to run the Boston Marathon in 2007.
My brother Victor will run the marathon.
More information at: www.vic4andy.com
Victor is running because "Children's Hospital Boston saved my nephews life".
And I will run for the doctors, nurses and researchers that saved Andy's life on multiple occasions. I will run for Six West, the stem cell transplant unit at Children's Hospital Boston where Andy had the stem cell transplant two years ago. And I will run to thank the runners who ran in previous years for Andy.
Please help us give back to Children's Hospital Boston.
Andrés Treviño
There was an article today at a United Kingdom newspaper regarding “designer babies”, also known as pre implatation genetic diagnosis (the procedure we used to find Sofia..).
The title of the article:
“Outcry as clinic offers 'designer baby' embryo screening for 200 diseases” By Jenny Hope Daily Mail
I received an email with a link to a blog where people commented the article.. As I was reading the comments (some very stupid) I found one from Dr. Hughes.
We owe a lot to Dr. Hughes...
Here are his comments:
Hello -
I am Mark Hughes, a physician-scientist in the USA. In 1991, it was my group of molecular biologists and geneticists in America who joined together with the pioneering team of Professor Lord Robert Winston, MD (the visionary Obstetrician-Endocrinologist) and Alan Handyside, PhD, (the pioneering Embryologist) at the Hammersmith Hospital-London. We performed the first cases of single-gene disease embryo testing - or Preimplantation Genetic Diagnosis (PGD). Multiple groups now perform this technology around the world, helping many couples. Indeed, we are "capable" of testing for many, many serious inherited disorders. This allows couples to begin a pregnancy on day one, with a commitment to continuing it and without 14-16 weeks of high anxiety, wondering whether an amniocentesis should be performed, let alone what in the world they would do with the information after they received it. The goal is to avoid pregnancy termination and help couples build a healthy family.
Let’s get our facts correct here: 1) No one would EVER test an embryo for 200+ inherited diseases. This is totally silly. I am certain that this is not what Dr. Fishel said, or meant to say. You don’t test the embryo for all these diseases – you test the prospective parents, the adults, who might be at risk for an inherited malady. (because of their ethnicity, for example). Most of us have no idea of the scores of lethal disease genes we carry in the genomic encyclopedia that make us who we are. This is because the good Lord and Mother Nature gave us two copies of most all genes – and the ones (many) with a mutation that we receive from our father is likely not matched by the mutations (many) we receive from our mother. So, we usually have a ‘back-up’ good gene copy from our opposite parent.
But, imagine if you have a baby with some very serious, oftentimes lethal disease. Most genetic diseases are bad-bad; there aren’t many cures for these fundamental problems with our genetic blueprint. Picture the excitement of having your own child and shortly thereafter the pain when you are told that it can not live. Now, in addition to the grief that brings, you are literally scared because you know it can happen again – with a 25% to 50% risk! THESE are the families that ask for PGD. 2) In 17 years of performing PGD embryo testing for many hundreds of couples, not one single person as even asked that this testing be performed for “designer baby” reasons. Not one. First, even if the technology was capable of it, (and it isn’t), you must actually HAVE the gene yourself before you can give it to your child…and for most ‘desired’ traits’ this biological fact rules out 99.9% of us. 3) No person, even a multi-billionaire, would willingly go through the process of in vitro fertilization, if they didn’t really have to do it. This is not fun. You certainly wouldn’t do it for trivial reasons. 4) No one, not one single person in 17 years, has asked for this technology to be used to produce a deaf baby. It is difficult to understand why people create fictitious stories, or title articles with “designer”, when they don’t understand the biology, the science, the medicine and mostly, the serious motivation driving desperate families to these extraordinary ways to have children. The only difference between these couples and the rest of us, is that we are blissfully ignorant of the very bad genes we all carry. Thank God we have that back-up copy from our other parent. But, if you could walk in the shoes of these fellow Brits, and feel their anguish over watching a baby they created die in their arms from some dreadful inherited condition, you might think twice before judging them with factletts of falsehoods. Until we have cures for these gawd-awful disorders, which stem-cell biology might (maybe, just might) assist in making reality, surely this technology is preferable to abortion at 16 weeks into a pregnancy. Someday we will have cures. Until then, PGD is truly does help couples build a healthy family. What is more honorable than that?
Prof. Mark Hughes, MD, PhD
According to Professor Richard Gardner, a stem cell expert based at Oxford University, people are "emphasising the promise" and "failing to highlight the problems that are yet to be overcome".
"And in the meantime," he says, "there is the real concern about the stem cell cowboys."
"You've got these people charging thousands of pounds to inject dubious cells into people suffering from diseases such as multiple sclerosis, and people who are chasing couples about to give birth and charging them thousands of pounds to store their baby's umbilical cord cells."
This is unethical, he says, because there are some fundamental problems regarding how these stem cells, whether they are adult, foetal or embryonic, will behave once they are in the body.
Complete article via BBC News here.
The cover of this months Journal of Clinical Investigation is devoted to NEMO (a.k.a. NFkB).
It says,
The transcription factor NF-κB is found in all cell types and is involved in cellular responses to stimuli as varied as stress, cancer, and viral infection. In the current issue, four papers highlight the importance of NF-κB as a central regulator, showing its importance in skeletal muscle strength, colitis-associated tumorigenesis, central tolerance, and endothelial cell function.
Heres an image:
More via JCI here.
Dr. Jordan Orange published his article about NEMO in this same journal back in June 2002.
