|My friend, Cindy, left this on my comment page tonight. I am so sad, outraged, and sick about this. How can this happen in this day and age??
I know you are all wanting to help and you have been so supportive in every way. If you can please take the time, to read below and help out with this it would be much appreciated. I know what I will be doing tomorrow. These kids deserve better. These parents deserve better. Things have to start to change.
My husband said it best tonight…. “That leukemia drug shortage is bullshit. Bet they never run out of Botox or Viagra.” Tru dat, Wooddawg. Tru dat.
Dear Rally Families and Rally Supporters,
The past few days Rally has been receiving calls and emails from concerned parents and supporters asking if it is true that there is a critical shortage of preservative-free methotrexate, a vital drug for children with the most common form of childhood cancer, Acute Lymphoblastic Leukemia (ALL). Unfortunately, this is true. As you know, Rally’s mission is to find better treatments and cures for childhood cancer. Unless production of preservative-free methotrexate increases, hospitals will run out of the medication completely in the days and weeks ahead. Some institutions have already begun rationing preservative-free methotrexate.
Chief of Oncology at Children’s Hospital of Philadelphia and member of Rally’s Medical Board of Advisors, Dr. John Maris, M.D, was recently featured on CBS news discussing the issue. This news story will give you a good overview of the problem.
The childhood cancer community has come together as a whole and is asking all supporters to help. PLEASE ACT NOW! This is how you can help:
Contact the US manufacturers of Methotrexate and ask them to:
1. Prioritize the production of the preservative-free form of methotrexate.
2. Consider working with the FDA to import preservative-free methotrexate if sources are available.
Second, contact your Members of Congress and ask them to immediately send a letter to these same pharmaceutical companies requesting that they:
1. Prioritize the production of the preservative-free form of methotrexate.
2. Consider working with the FDA to import preservative-free methotrexate if sources are available.
Contact your Representatives here , and your members of Senate here.
To read more about this issue, please see People Against Childhood Cancer.
Thank you for your concern and your action.
Dai H. Chung, M.D. Dean Crowe
Meet Rally Kid Mia, ALL Fighter
Mia was diagnosed with High Risk Acute Lymphocytic Leukemia (ALL) on 3/13/3009 at age 2. She was sent immediately to Seattle Children’s Hospital, where they began treatment. This was only the beginning for Mia and her family. Mia and her family spent most of 2009 living in Seattle away from home and away from Mia’s best friend and biggest supporter, Noah, the best twin brother a girl could ask for.
Mia is now 4 1/2 years old and has been fighting cancer for over half of her life. She was in remission until Christmas 2010, when she went in for a routine chemotherapy appointment to find out the unthinkable. After almost 2 years of chemotherapy, and only 6 months out from finishing treatment, Mia had relapsed. She was again hospitalized, and endured chemotherapy, radiation, and a stem cell transplant. Her twin brother Noah was a perfect match and was her stem cell donor.
Mia was preparing to go home after her stem cell transplant when her family received the news that Mia had relapsed yet again. Mia is truly in the fight of her life.
Mia’s parents are so proud of her for being brave and strong throughout her treatment, and so proud of Noah for being a loving and supportive twin brother. They say “It’s absolutely amazing the strength of a child and the beautiful connection these kids share. Mia loves dancing, listening to music, art and is an incredible athlete. Mia is a hero and reminds us that everyday is a gift – enjoy life!”
All posts tagged Food and Drug Administration
Posted by rockstarronan on February 14, 2012
Ronan. One of my blog readers called me a rebel with a cause. I LOVE this. I am a rebel. But a nice one. Unless you fuck me over, the way cancer has…. then you don’t want to mess with me. I do have a cause. A big one. It’s to stay here and keep going for you and all the other babes out there who are suffering from childhood cancer. I see your face in every single one of them. Why is America ignoring them? Why isn’t there more of a voice for these kids who are suffering from childhood cancer? Why isn’t the government stepping up to the plate? Why aren’t the schools taking a more pro active roll on educating our kids with awareness? Isn’t it their kids, that they are “educating,” who are sick and dying? You were one of their kids. And you got cancer and died but now life just goes on. You are just a dirty little secret, a pretend little boy, who got cancer, which they quietly acknowledged, but Shhhhhhh!!!!!!!!! Nobody talk about it. Forget it happened. A gold ribbon means nothing. It won’t ever happen again. Ronan who? The parties must go on! Doesn’t anybody wonder about you? Or the mommy who is home, crying because she is aware that it is the day of the schools Holiday Program and you should be there. But you’re not so I will sit at home with your Urn and pretend that you are there, singing whatever holiday song they are singing. As long as it’s not that fucking Silent Night song. I hate that song. I’ll never sing it again.
I was being obsessive today. Fuming about the lack of awareness that childhood cancer receives. I get that these things take time, but the statistics of childhood cancer, sicken me. The fact that things are not changing, is something that I am not o.k. with. I’m posting something below that is from a website that I go on frequently. It’s a foundation called Solving Kids Cancer. I’m meeting with one of the founders, Scott, in New York this January. Below are a few things about childhood cancer, that I hope makes you all mad. It makes me sick to even have to post this. But this is real people. It’s not make believe. It’s important. It makes me want to go shoot some more guns and punch a lot of things.
Are not preventable and do not result from lifestyle choices
Are difficult to detect – children present with these cancers after they have already formed and often metastasized
Are the leading cause of death by disease in children
There are currently no real solutions for these deadly childhood cancers
There has not been a significant breakthrough in the deadliest childhood cancers in 30 years
One of the deadliest childhood cancers which has not seen therapeutic advancement is neuroblastoma
Is the most common cancer in infants
Because there is no system for detecting neuroblastoma, most children present at Stage 4 with metastases1
Despite aggressive treatment, the survival rate of advanced stage neuroblastoma in children >;1 year of age is only 30%2,3
Current neuroblastoma relapse survival rate: 0-10% (rates vary by institution)
Therapies being used are often adult hand-me-down agents that are overly toxic for children. These agents are also not aimed at treating the unique pathology of children’s cancers
Number of effective therapies available to all children with these deadly forms of cancer: 0
There is no standardized treatment for deadly childhood cancers — the only option children have for treatment is participation in clinical trials
Translational research transforms scientific discoveries arising from laboratory, clinical, or population studies into clinical applications to reduce cancer incidence, morbidity, and mortality.
The Translational Research Working Group (TRWG), National Cancer Institute (NCI)
The status quo is unacceptable
In today’s clinical research landscape, progress is too slow and promise too rare
Average time for a therapeutic discovery to be tested in humans: 5 to 7 years
The possibility of discovering appropriate therapies can be limited by accepted research standards (eg, large scale, multicenter, single-treatment, placebo-controlled, narrow eligibility criteria)
Basic research generally receives more funding than translational or clinical research
Existing ideas need to be identified, prioritized based on viability, and progressed into therapeutic development in humans
The usual players are not in the position to solve the problem alone
Pediatric oncologists are, justifiably, focused on treating their patients, not necessarily on developing and prioritizing new therapeutic discoveries
Research scientists and academic institutions have everyday demands which prevent them from investigating many promising basic research ideas
Rewards in this field are given for scientific discoveries, not practical applications of these discoveries
Pharmaceutical and biotech companies are not incentivized financially to develop treatments in small populations such as children with cancer
Conventional nonprofit organizations are not necessarily designed to progress therapeutic development
Parents are forced to become experts in their child’s treatment
With their child’s well-being as their first priority, parents bring a valuable perspective of ethics and a sense of urgency to clinical research
Children cannot advocate for themselves like adults with deadly or debilitating diseases can
To date, there has not been a single group, institution, or research entity effectively and solely dedicated to the task of solving kids’ cancer
Children need help now
You know what else, Ro? Lots of other bad news. While progress against leukemias and lymphomas continues, five-year survival rates for almost all solid tumors in kids and teens haven’t budged over the past 10-20 years. Funding is the number one issue. The NCI’s budget is $4.8 billion, and the total for grants that have anything to do with pediatric cancer is $173 million. Want to know a dirty little secret? Drug companies don’t want to cure cancer. It’s a big money making business, baby. Drug companies want kids to die from cancer. In 20 years the FDA has initially approved only one drug for any childhood cancer • 1/2 of all chemotherapies used for children’s cancers are over 25 years old. • Research and development for new drugs from pharmaceutical companies comprises 60% of funding for adult cancer drugs and close to zero for childhood cancers. • However, the NCI spends 96% of its budget on adult cancers and only 4% of its budget on children’s cancers.
WHY IS THIS ACCEPTABLE? WHY ISN’T AMERICA ANGRY ABOUT THIS? THIS CAN HAPPEN, TO ANYONE!!!!! If I were a parent, reading this, and I had a child who was healthy as one can be, like you WERE, I would be scared to death. I would be so scared because childhood cancer can happen at any age. I would take a stand so I could be a part of making things change so that childhood cancer gets the awareness that it deserves. So that someday, the survival rates will increase and treatments will be better and not so toxic. So that kids are given a chance to overcome this shitty hand they were dealt. It should not just because they were the lucky ones. This is my rant for tonight, Ro. I’m so mad. Sad. Jaded. Scared. Disappointed. Heart-broken. Always heart-broken.
Alright. My day. I don’t remember what I did except miss you. I read a lot of articles on childhood cancer. I read up about some doctors. Treatments. Funding. Etc….. I already know most of it. But now I’m getting my fucking Ph.D in this childhood cancer thing. Do you think they will give me a cap and gown when I graduate? Can it be purple? With a star on it? That would be nice. I won’t graduate until I’m on my death-bed and I know with my entire heart and soul, that I’ve done everything I could possibly do. Whatever that means. As long as I make you proud, that’s all that matters in the end.
So, after my day at the Starbucks office, because it is too painful to be in an empty house, I came home. Your brothers had cub scouts so they were with Mimi and Papa. I decided to go on a hike up Camelback. It was later in the day than I usually go, but I was determined to do Echo Canyon today. It was about 5:00 when I started. I hauled ass up the mountain with my music blaring. I didn’t even stop for a break for water like I usually do. I was partly in a hurry, because I knew it was going to get dark soon; but I had no idea how quickly that was going to happen. As I made it to the top, I went over to my favorite tree because I brought a bunch of your bracelets like I always do, to hang all over it. The tree was empty except for I noticed one rubber black bracelet hanging on it. I took it off of the tree, curious as to what it said. In yellow letters, it read, “Believe in yourself.” Tears welled up in my eyes. Was this from you? How is it, that on the day that I decide to hike Camelback, that this bracelet was just hanging there, like it was a gift from you. I froze and closed my eyes. I put the bracelet on and continued to decorate my little tree with about 20 of your purple bracelets. I wasn’t really paying attention to how the sunlight was disappearing and how there was only one other person at the top of the mountain as I was too caught up in my tears. I headed down Camelback. It usually takes me about 25 minutes to get down. I was about half way down when through my tears, I noticed that it was almost pitch dark. Um FUCK. I didn’t have a flashlight with me. I didn’t have a head lamp on. Nobody else was around. I couldn’t even see to navigate where I was. I got lost at one point. It was the first time, since losing you that I was really scared about the situation I was in. I decided to try to stay calm. I started talking out loud to you while trying to figure out how I was going to get down this steep mountain, in the pitch black, without breaking my neck. I said things out loud to you like, “Ronan. You know I wouldn’t be in this situation, if you were still alive. I wouldn’t be doing things like this. I would be at home, with you, where I belong.” Somehow, I made it down basically a cliff, to a little less steep terrain. I used the light from my iPhone which was better than nothing. Without this, I am certain I would have seriously injured myself or died. While I was in the middle of my Hike of Death, I stopped just to take it all in. The darkness engulfed the mountains which were illuminated by the moon, stars, and city lights. It left me breathless. It was so stunningly peaceful and quiet. It was so perfect and beautiful. I felt like I was looking at the inside of my soul. Uncharted territory. Risky. Dark and dangerous, but deep down so beautiful if you just stop to look at what is really there. If you are not afraid of the dark, the beauty will find a way to shine through. I was afraid of the dark at first. But then I just decided to embrace it and trust in it. I made it down safe and sound, but I’m not sure I’ll be doing that again, anytime soon. Or ever. I walked into our house tonight and I said to your daddy, “Well that was really stupid of me.” I think he almost passed out. Not from the dangerous thing that I had just done, but from hearing those worlds out of my mouth. I laughed at his reaction. Then I got sad for laughing because it just felt wrong. I wonder if it will ever feel right again.
I got a phone call today, Ronan from that Rockstar friend of yours. Bret Michaels. A phone call that once again, had me crying because I just cannot believe how much people believe in you. A phone call that filled me with hope that people really are going to start to listen and childhood cancer is not going to be ignored anymore. Bret is going to help make sure of this and he’s doing it for all the right reasons. There is no hidden agenda. He just wants to help because he can. He can’t ignore those big blue eyes of yours. I question the person, that can. There must be something wrong with their soul. Bret is not just talking the talk. He’s walking the walk. Or rocking the rock because he is that freaking AWESOME. After I hung up, I seriously walked over to the mirror that hangs in our entry way looked at myself. I looked at my eyes. They looked different. Like they had a fire behind them. A little voice in my head said to me, “You are strong. You are not weak. You can do this. You are doing this because YOU ARE STRONG.” I’ve never heard those words before, from within myself, until today. The voice in my head sounded just like yours, because it was you. It’s always you.
So Ro. That’s my story for the day. I would like to thank you for getting me down the mountain. You and Taylor Swift. I was listening to her with my headphones on. She sang our song which made me keep going. Because the stakes are high and the waters rough. But this love is ours. I love you my spicy monkey boys. I miss you. I hope you are safe. G’nite baby doll.
Posted by rockstarronan on December 14, 2011
Penelope passed away but she is still inspiring millions. Her parents are doing amazing things for children’s cancer. Check out their website at:
By GEETA ANAND
NEW YORK — John London, a successful hedge-fund executive, is desperate to save his 4-year-old daughter, who suffers from a rare cancer. She clings to life at New York University Medical Center here, sucking her thumb and clutching her favorite teddy bear.
For the past month, Mr. London has been begging a small biotechnology firm to allow Penelope to be treated with an experimental cancer drug that might help. Mr. London has received high-powered support: Several legislators, including House Speaker Nancy Pelosi, have lobbied the company and its board to make the drug available. The Food and Drug Administration isn’t blocking the way.
Neotropix Inc. of Malvern, Pa., says it would like to help, but the drug may not be safe for a child and dispensing it would be bad business. “For us to provide the drug to this child would be to put at significant risk a small company with limited financial resources,” says P. Sherrill Neff, managing partner of Quaker BioVentures, a major investor in the firm, which is trying to tie up a vital round of financing of about $20 million. “You could delay the opportunity for lots of patients to get this drug if you sidetrack it for one patient,” he says.
The deadlock reflects an increasing tension between individual patients and companies using the revolution in understanding biology to develop new medicines. Ideas for treating deadly diseases are proliferating, and the Internet carries hints of promising results into the homes of dying patients. They are pushing for the chance to bypass the laborious approval process and receive quick access to experimental drugs when all else has failed.
In the U.S. Court of Appeals in Washington last month, a lawyer for a patient-advocacy group argued that patients’ constitutional rights are violated when they are deprived of medicines in testing that could save their lives. The Abigail Alliance for Better Access to Developmental Drugs wants the FDA to allow patients to buy drugs in testing directly from companies and to allow the companies to profit from the sale. A three-judge appellate panel last year ruled in favor of the alliance. The FDA appealed the case to the full appellate court, which is scheduled to rule later this year.
Lawyers for the FDA argued that broad access to experimental drugs could harm patients and undermine the incentive for them to participate in clinical trials, the studies companies are required to perform in humans to prove safety and efficacy.
“This is a huge dilemma we face as a society — it’s moral and it’s ethical,” says Patty Delaney, director of the FDA’s cancer liaison program. “We have the incredible pain of an individual — sometimes it’s a 4-year-old child, which pulls at everyone’s morality — versus the societal issue of what happens if a small biotech company diverts its resources to a child or ill mother?”
Mr. London, 40 years old, was raised in Manhattan and spent seven years at Highbridge Capital Management, one of the largest hedge funds in the world. He co-founded SuttonBrook Capital in 2002 with $30 million in capital and built it into a $2 billion hedge fund. On a blind date in 2001, he met his wife, Catherine, a free-lance writer and editor. They married the next year, and she gave birth to Penelope, their first child, on July 6, 2002.
Growth in the Ribs
Penelope was 16 months old when she was diagnosed with neuroblastoma, a rare cancer that develops from nerve tissue and often appears first in the adrenal glands. By the time her parents noticed a growth under her ribs and took her to Mount Sinai Hospital, the disease already had spread to her lymph nodes, liver and bones.
Four days later, Ms. London delivered the couple’s second child, a boy named Oliver.
Doctors told the Londons that Penelope had a particularly aggressive form of neuroblastoma and stood just a 25% chance of being cured. Over the next year, she underwent high-dose chemotherapy, radiation, a bone-marrow transplant and surgery.
A few weeks after the treatment ended, the family went on vacation to the Atlantis Paradise Resort, a hotel with a marine park in the Bahamas. They had just gotten off the plane when they noticed a lump on Penelope’s neck. They tried to ignore it and enjoy the vacation, taking turns holding her in the underwater tanks for hours to indulge her fascination with the giant stingrays.
Soon after they returned to Manhattan, they discovered the cancer was back. Radiation shrank the tumors in Penelope’s neck and skull, but the cancer broke through again after several months, in what would become a pattern. Each time Penelope’s cancer progressed, the Londons tried a new treatment — moving toward therapies earlier and earlier in human testing. Some treatments put her cancer into remission, others kept it in check for weeks, and some didn’t work at all.
Mr. London combed the Internet and connected via Web sites with parents of other children with neuroblastoma. When he heard of promising research, he phoned the physicians or scientists involved, pressing them about whether their work could benefit Penelope.
Several times, the Londons say, their doctors told them they were out of options and advised them to take Penelope home to enjoy the time they had left. “More than John, I was willing not to try anything else because I just wanted Penelope to be comfortable,” says Mrs. London. “But John just couldn’t do that. And many times, he was right. Penelope would not be alive today if it weren’t for him.”
“Penelope was still laughing those deep belly laughs of hers, still running around and looking healthy,” says Mr. London. “I just couldn’t give up on her.”
Not wanting to miss time with his daughter, Mr. London stopped going regularly to work at the Manhattan office of SuttonBrook. Running his hedge fund from Penelope’s bedside at home, he often stayed up all night devouring medical research papers. One day, sifting through 600 papers that were presented at a conference, he read about an antibiotic used overseas that appeared to help a child with neuroblastoma. Pediatric-cancer specialist Giselle Sholler wrote that the child’s cancer went into remission after being treated with the antibiotic plus chemotherapy. Dr. Sholler agreed to treat Penelope.
The combination therapy seemed to work, says Dr. Sholler, an assistant professor at the University of Vermont who had been studying the potential treatment in mice. The walnut-size lump over Penelope’s collarbone shrank to less than the size of a pea, Dr. Sholler says. For three months, as Penelope’s curly brown hair began to grow back, she played like any other child, dressing her dolls, making vanilla pudding with her older half-sister, Isabelle, and teasing the family cat, Charlotte.
“She had an incredible ability to bounce back,” says Elizabeth Raetz, a pediatric oncologist at NYU Medical Center who has been treating Penelope and advising the family since she was diagnosed.
Through the struggle, Mr. London grew close to the parents of other children with neuroblastoma. “I felt so alone in going beyond what the medical establishment wanted me to do, that the parents of other sick kids were the only ones I could truly relate to,” he says. He invested $100,000 in a fund that is paying for Dr. Sholler to test the antibiotic in combination with chemotherapy in a clinical trial. Dr. Sholler has enrolled eight patients in her trial and most have had their tumors shrink without many side effects, she says, although she cautions that the tests are still at a very early stage.
“John’s passion for finding a cure for this disease and his daughter made this trial happen,” she says. “And all of these children are seeing a better quality of life.”
Cancer Breaks Through
Last November, Penelope’s cancer broke through again. After unsuccessfully trying two other experimental drugs, Mr. London was particularly anxious when a parent emailed him in March about Neotropix’s therapy.
The experimental medicine is a virus that strikes pigs and appears, in early test-tube and mouse experiments, to attack certain cancer cells in humans. The approach is new and risky, Neotropix Chief Executive Peter Lanciano notes, because it involves injecting a virus into humans that they presumably haven’t been exposed to before. The drug is still in its earliest phase of trials for safety. It was tested in just six human beings over the past year. The company hopes to finish the first stage of testing over the next 18 months, giving the virus to another 49 patients, most with small-cell lung cancer.
Mr. Lanciano says that the week he took over as CEO nine months ago, the FDA put Neotropix’s trial on hold because the first patient died. Only after four months of testing and analysis was Neotropix able to resume its trial, having demonstrated that the patient died from cancer and not the therapy.
That delay was on Mr. Lanciano’s mind when Mr. London and his supporters began calling. The CEO says he wanted to help, but he thinks the drug is too early in testing to be used safely by a child. To give Penelope the dose that was effective in mice, he says he would have to multiply the top dose used in humans so far by 100,000 times. Normally drug companies are careful to raise the experimental dosage in small increments to detect side effects before they become lethal.
“The question is: Can we really help or would we do more harm?” asks Mr. Lanciano.
Mr. London argues this is a risk worth taking. “We’re not talking of testing an unproven drug in a child who is perfectly healthy and running around,” he says. “My daughter is already in so much pain and is so sick she can’t get out of bed. If anything has a prayer of saving her, how can you argue it’s not the right thing to do?”
Investors have put about $14 million into Neotropix, which was founded in 2003 by a former Novartis AG scientist. Last year, Mr. Lanciano, a former executive at several biotech companies, took the helm.
Mr. Lanciano and Neotropix board members have expressed concern that the FDA will force Neotropix to put its trial on hold again if Penelope dies. FDA officials called Neotropix and reassured the company that this isn’t the case, Mr. Lanciano says. A colleague of Mr. London who is an internist had approached the FDA and asked it to deliver that message.
Despite the verbal assurances, the CEO says he is still worried. “You never have the ability to wash your hands of any adverse events the patient has,” says Mr. Lanciano.
FDA officials, agreeing only to speak generally about the issue, said the agency would not hold a company accountable for the death of a very sick patient receiving therapy as a desperate effort.
“The FDA has good appreciation for the fact that we’re dealing with people mortally ill and this is a last-ditch effort,” says Richard Klein, director of the agency’s HIV program. The notion that the FDA would halt trials over a death in such circumstances is “more of a myth, or urban legend,” he says.
Nonetheless, “there aren’t any absolutes,” says Ms. Delaney, the FDA’s cancer liaison. “We can never say: ‘We won’t pay any attention to safety’ ” when a patient gets a drug.
The Neotropix board held several meetings on the question of giving the drug to Penelope, Mr. Lanciano says. At one point, the board called an ethicist for an opinion. Urged on by the London family, patient groups and politicians, including the staff of House Speaker Pelosi and Pennsylvania Gov. Edward Rendell, lobbied on behalf of giving the drug to the child.
On April 18, the Neotropix board decided not to provide the drug. Yet calls from politicians and Mr. London’s supporters continued, Mr. Lanciano says. Finally, four days later, a Sunday, Mr. Lanciano sent out an email, copying them all.
“Tremendous pressure has been brought to bear on all levels of the company” to try to get it to change its position, he said in the email. “We will not do so.”
Mr. Lanciano, 50, says he sympathized, having lost his wife several weeks earlier to cancer at age 51. He tried to get her in clinical trials for pancreatic-cancer treatments, but she didn’t qualify, he says.
“If I were that father and mother with a dying 4-year-old, I’d be doing exactly the same thing,” says Mr. Neff, the partner at the venture-capital firm that has invested in Neotropix. “There is no right answer,” he says. “But in a small company with limited financial resources and a high risk profile, you really have to reduce the risks to drug development.”
Mr. London is now trying a new avenue. A day after Neotropix turned down Penelope, a friend Mr. London met on a parents’ Web site told him about another company, Jennerex Biotherapeutics, also with a virus in the earliest phase of human testing for cancer. Mr. London reached the company’s chief executive, David Kirn, on his cellphone and the two spoke for an hour. Dr. Kirn, a cancer specialist, agreed to provide his experimental drug to Penelope if a hospital would agree to administer it.
“If you are in the position where a loved one is dying of a disease, it is impossible to understand how any company can withhold something potentially beneficial,” says Dr. Kirn. He says his company has raised $10 million so far, mainly from individual investors who leave medical decisions entirely up to him.
William Carroll, director of pediatric oncology at NYU Medical Center, said Saturday he’s trying to get permission to treat Penelope with Jennerex’s experimental virus at his hospital. He needs approval from several hospital committees that monitor clinical trials and biosafety because the treatment is a live virus. That process would normally take months.
Dr. Kirn is pitching in to make the case. “We’re asking hospitals to compress a six-month procedure into a week and that’s very difficult,” Dr. Kirn says. “You’re asking them to bless a plan with less than the full data that is normally available. But you’re asking them to do it for a heroic cause — to try to save a child.”
Running Out of Time
Mr. London knows the family may have run out of time.
Wearing pink pajamas in a ninth-floor room at NYU Medical Center last week, Penelope, frail and partly bald, tucked her favorite stuffed bear under her arm as she watched an Animal Planet television show about a sick walrus that was saved. She cried now and again, sending her parents rushing over. A bowl of half-eaten oatmeal sat on the table; Mrs. London asked a friend to make it with extra butter to try to fatten up her daughter. Mr. London’s computer was open to the Web site he uses to keep family and supporters updated about Penelope.
The Londons brought Penelope to the medical center Wednesday because her pain medicine wasn’t working. They thought she needed stronger drugs to stay comfortable. The plan was to switch her to methadone, a powerful narcotic, and take her home.
On Friday night, after Penelope had struggled for two days with the pain, her eyes lit up when her big sister, Isabelle, appeared in the doorway. The little girl, who hadn’t gotten out of bed in days, pulled herself up — batting away the outstretched arms of her parents — and wobbled over to sit on the cot beside her sister. Later, when Dr. Raetz, the oncologist, stopped by, she found Penelope, her arm shaking a little, putting the numbers of a block puzzle into the right spaces, not randomly but meticulously, in ascending order. “She’s a very determined little girl,” Dr. Raetz said.
“We go into this with our eyes open,” Mr. London said, talking in another room out of Penelope’s earshot. “The chance of anything bringing her back from the abyss now is very low. But the only thing I know for sure is if we don’t treat her, she will die.”
Mr. London and his wife say they are searching Penelope’s big brown eyes for clues as to how long she wants to continue to battle for life.
For now, says Mr. London: “We see she still wants to fight.”
Posted by rockstarronan on June 8, 2011