Archive for May, 2007
Special thanks to David’s extraordinary classmates for the organization of a fundraiser for Sébastien in Manitoba. Here is the letter for your information:
May 21st, 2007 Dear Friends, Re: Bud, Spud, & Steak Fundraiser for Sébastien Forest We are writing this letter on behalf of the Class of ‘93. As you may be aware, one of our fellow graduates, David and his wife Jasmina have a 2 ½ year old son named Sébastien who has undergone several medical procedures in the last few years. As most of you know, this little miracle continues to improve against all odds. For those of you who don’t, we would like to bring you up to date. Sébastien was born December 12th, 2004 with a condition known as gastroschisis. An operation soon after his birth left him with Short Bowel Syndrome. As Sébastien could not digest anything his body depended entirely on Total Parenteral Nutrition (TPN). His liver began to suffer from the constant strain of the TPN and his only hope was a bowel and liver transplant. His parent’s wish came true when in August of 2006 Sébastien was flown to Toronto for the double transplant. He is currently recovering at Toronto SickKids
Hospital. His reality is definitely different than ours since it is good news for a tube to be removed from his nose only to have one going directly into his stomach. The prospect of becoming outpatients is exciting for the family, but poses a monumental challenge. The estimated cost for specialized medical equipment, physiotherapy, speech therapy, occupational therapy, respite care and medicine vital to Sébastien’s survival is approximately $15,000/month. As an out of province patient, these costs are not covered. To cope with this financial burden, the family has so far successfully relied on previous fundraiser donations. I believe you will agree with us that there is a call going out to each one of us to give generously. It is because of this reason that on June 2nd, 2007, we, the Class of ’93, in association with Lucky Luc’s Bar & Grill (St. Pierre Hotel) will be hosting a “Bud, Spud, & Steak” fundraiser dinner and silent auction in honor of Sébastien. Please see attached poster for details regarding the fundraiser. For more information, to purchase tickets, or if you wish to obtain prizes for the silent auction please contact any one of your fellow classmates:
Luc or Corinne @ 433.7425
Stacey @ 347.5298
Tania @ 347.5962
Josée @ 433.7004
Dan Preteau @ 347.5290 Tickets for the “Bud, Spud and Steak” are available at the St-Pierre Hotel. If you are unable to attend the dinner, please feel free to check out the Silent Auction and 50/50 at any time during the evening. Hope to see you there!
A week from today, I’ll be visiting Jasmina, David and Sébastien in Toronto… I’m terribly excited to see him, it’s been 10 months since he left Winnipeg for SickKids. The weeklong trip brings with it a flurry of preparations… Saturday was sunny and allowed us to plant our tiny garden with beans, tomatoes, cucumbers, carrots and lettuce. The flower beds are my favorite, last year’s perenials came through, and in the spaces between we planted more… some perenials, mixed with colorful annuals. Sunday, we finished the few spots that were left, as well as a planter… spikes in the middle, surronded by small yellow pansies and set off by a purple leaf potatoe vine. But our excitement paled compared to the activity in Toronto…
Sunday afternoon we had a call informing us that Sébastien was to have an operation in the evening as his central line broke. I phoned Jasmina, her voice raced like her thoughts as I asked how she was. In situations that seem precarious, Jasmina always seems strong. “I expected this to happen, he’s had his central line for 6 months! It’s just that with his platelets being low, the operation is a little more dangerous.”
“Would you like me to put this on the blog?” I asked, ready to think up a sensational headline.
“You can mention it, by I don’t want people to get too worried” she kindly replied.
Sébastiens low platelets are a cause of concern for his medical team. His antibodies are eating his platelets, and the internet offers some clue as to what it might mean… But, I don’t know for sure, not having had the actual term of the condition told to me.
Monday, I learn that the operation went well. Sébastien has pulled through so much. His heart is strong! I’m sure to see him smiling and playing with his toys when I come!
It was about a month ago, when I first learned of Omegaven from a blog. I’d researched Short Bowel Syndrom on Google Blog Search and landed on the Short Gut News. A lot can be said of patients who keep an online journal of their recovery. As one blog post describes, patients are becoming the new authority.
Once, during a phone call with Jasmina she mentioned Omegaven, having heard about it in Toronto. “Yes!” my voice nearly squeaked in excitement “I just read about it.” And went on to explain my recent ‘discovery’. “Why didn’t Sébastien get Omegaven?” I asked. Jasmina is always calm when she explains things… The short of her answer was that it wasn’t available in Winnipeg. And it’s very expensive. The cost is from $50 to $100 a day per child. In fact, Omegaven isn’t covered by Health Canada. It isn’t even approved by the FDA in the U.S. Why? Omegaven was created in Germany by the company Fresenius Kabi AG. An article in the Wall Street Journal from November of last year explains the German company’s reluctance to bring the drug to the U.S. market:
Omegaven isn’t what “we see as the best product for this kind of application,” says John R. Ducker, president of the research, development and strategic marketing division of Fresenius Kabi. He says Omegaven, developed 15 years ago, was intended as a supplement, and not to be given alone. The company says it doesn’t contain all the essential fatty acids babies need.
Mr. Ducker says the company’s new product, called SMOFlipid, “presents a better option for pediatric feeding.” The company believes the new product does contain all the essential fatty acids babies need and can be used on its own.
Fresenius Kabi says it doesn’t want to invest the resources required to test both products for approval by the U.S. Food and Drug Administration. It hopes to eventually sell the new product in the U.S., Mr. Ducker says, although no timetable has been set and no trials are under way.
SMOFlipid has been approved for adults in a few European countries. Dr. Puder responds on the continued use of Omegaven versus waiting for the new product:
While Dr. Puder says he isn’t opposed to testing the new drug, “I have a sense of urgency here,” he says. “We have something that works, let’s do Omegaven first. Then once we have something approved so these babies don’t die, we can test something else.” He adds: “We are miles and miles ahead on Omegaven. We have safety data on the patients. We have excellent outcomes on the patients.”
The news, that affects so many children born with Short Bowel Syndrom has sparked some debate, and we are anxious to see how the matter develops. Though Sébastien is no longer affected by Short Bowel Syndrome since receiving a transplant, the research is something that touches Jasmina. She doesn’t hesitate to encourage people who come to the hospital who have similar conditions to what Sébastien had. “I’m so proud of Sébastien,” she once told me. “He is an example for other kids…”
“Sébastien’s ward is in quarantine.” David announced as we settled on the couch to watch a movie we’d rented. “The flu is going around.” It was the end of a busy Saturday. I’d cleaned the house for Sunday brunch, prepared the scones, cut the fruit and put the easy oven bruch bake in the fridge. My husband had been busy removing red rocks from under some trees in our yard.
On Sunday, with relatives, Sébastien became the subject of the conversation… My mother-in-law had the honor of relating his latest story, as she’d heard it from his grandma. “When Sébastien goes for physiotherapy, Jasmina goes into another room where there is a glass, and she can see him, but he can’t see her,” she motions with her hands, showing both sides of an imaginary glass window. “If she stays with him, he cries and wants to go to her. The physiotherapists set up toys, away from him and said ‘Sébastien! Go get a toy!’ Sébastien looked and said, ‘No! You!’” I imagine Jasmina behind the glass, covering her mouth, trying to muffle a laugh. I’d want to come out from the room and squeeze him!
David came back from a week’s visit to Toronto and brought with him more pictures of Sébastien. On the phone with Jasmina, she tells me: “We went out alot last week! It felt more like normal!” I listen, delighted. The pictures show a smiling trio on a visit to The Beaches, on lake Ontario. “Sébastien might be an outpatient in a week and a half,” Jasmina says. This time, it seems like a real probability providing that everything go well during that time. A few days ago, Sébastien had a routine liver biopsy. While looking at the pictures David brought back on a cd he talks about Sébastien…
“He gained weight! He’s 8.4 kgs. Last month he was 7.9 kgs.” A picture of Sébastien on a tricycle, with a helmet makes us smile. “They put velcro on his feet and on the pedals so that he can understand how to peddle,” David explains.
Sébastien will soon be getting a “button” for his G-tube. Over on The Short Gut News, a post explains and illustrates what it is.
The most recent pictures of Sébastien will be posted on Flickr soon… So check for updates shortly!
As it is Mother’s Day on Sunday, here’s a special thought for all you mothers who read this blog… Have a wonderful day!
“How is Sébastien? Have you had any news?”
“No…” I answer a bit helpless. “We expect he’s stable!”
Isn’t that how it is with recovery? Nothing spectacular, but small daily victories, hardly perceptible…
As it was rainy on Saturday, I went to the library and found a wonderful book entitled: Every day counts lessons in love, faith, and resilience from children facing illness written by Maria Sirois, a licensed clinical psychologist. She writes about her experience during one year as an intern at the Dana-Farber Cancer Institute’s pediatric oncology ward. Here are the top 10 most beautiful quotes from the book that taught me about:
Physicians: I learned how physicians do what they can based on what they know, and what they don’t know can be astonishing. Into that gap the good ones leap, using intuition, experimentation, and a willingness to go beyond the traditional borders of care to stretch the limits of the field. Through the creativity of these physicians, children who should not have, according to medical statistics, and some became fully cured despite obstacles others could not surmount. The term miraculous came to mind more than once that year at the hospital, as did a clear awareness that we don’t yet fully know, either in psychology or medicine, what will definitely offer a cure for any one person. (p. 5) Our physicians face a daily onslaught of bad news, difficult decisions, anxious patients, and unpredictable outcomes, all under the intense pressure of not enough time and the internal desire to do it all right for each patient every time. It is, in this new century, a profession that asks an extraordinary amount of its practitioners with little scaffolding to carry them through the emotional and mental exhaustion of the chronic presence of suffering. (p. 184)
Hospitals: A small city where travellers take up residence but never feel at home. (p.35)
The struggle: It is all a matter of holding on or letting go. Life can be reduced in most moments to this – the struggle to hold on and to let go.
Learning the truth: “Every professional faces this, Maria. Every doctor, psychiatrist, psychologist, nurse and social worker learns this one truth at one point.” /…/
“That we can’t do it all?” Jason asked.
Paula turned to him. “That none of us is God.” (p. 85)
Time: In oncology, there is only the present time for physicians. The pressure of a full schedule, unexpected emergencies, interns and residents to train, exhaustion from being on call, and the relentless pager all cohere to create a hospital environment where doctors often do not wait for a better moment – later may not arrive for myriad reasons both practical and awful. (p. 41)
Fear: When she became truly honest with herself, she learned that fear was actually sometimes worse than the pain. She referenced a quote from Robert Frost’s “A Servant to Servants” – “the best way out is always through” (p. 184)
Love: Life is long. Everyone suffers at some point and everyone suffers tragedy upon tragedy at some point. The question is not what to do with the client, the question is how do you keep yourself full when the cataclysm comes? No healing happens when the healer is depleted. Fill yourselves. Then you’ll be able to offer a great deal, even if it’s only love that you offer. (p. 91)
Doing what you love: Jake’s youth and innocence supplied him with a protection and a knowledge I had forgotten. If you can live in the moment doing what you love, as children can, and you are surrounded by those you trust, then suffering is ameliorated and it becomes a part, not the whole, of your life. (p. 24)
Advice from Annie Dillard: “Spend it all, shoot it, play it, lose it, all, right away, every time. Do not hoard what seems good for a later place in the book, or for another book; give it, give it all, give it now… Anything you do not give freely and abundantly becomes lost to you. You open your safe and find ashes.” She reminded her students of the note found in Michelangelo’s studio a few days after his death, a note left for his apprentice Antonio. It said, “Draw, Antonio, draw, Antonio, draw and do not waste time.” (p. 114)
Advice from a 16 year old patient to other patients: “Just tell them that every day counts. Even it it’s a sick day it still counts. /…/ What I mean is to try and find something that will make each day special. /…/ Even if it’s a bad day.” (p. 145)
In a previous post, we talked about the incredible team that takes care of patients like Sébastien who have short bowel syndrome. Today we’ll take a look at one new treatment that the GIFT team is using in Toronto Sick Kids… it’s called Omegaven.
But first, a briefing… As Sébastien was born with gastroschisis and endured an operation to remove all but 20 cm of his bowel after birth, he became dependant on TPN for nourishment. TPN is composed of two solutions: one consisting of carbohydrates, proteins, vitamins and minerals, the second consisting of plant-derived fat (lipid) – mostly made of soybean oil. With time, however, the TPN takes a toll on the liver, to such an extent that patients like Sébastien, who are over a year on the TPN, end up needing not only a bowel transplant, but a liver as well. As an article of Dream Online from the Children’s Hospital in Boston explains, the reason TPN causes liver damage has eluded the medicine for years.
In 2001, Jenna Garza, MD, was interested in researching the reason for liver damage from TPN and began experimenting with mice under Dr Mark Puder’s supervision. Kathleen Gura also participated in the research. Many experiments later, the team discovered the dramatic difference of results when using Omega-3 (Omegaven) instead of the usual soybean oil, as a fatty acid supplement. There was no liver damage in any of the mice being fed Omegaven. As Dr. Puder explains in the same article, with regular Intralipid: “That fat becomes more or less a fuel that burns the liver, causing it to become inflamed. But the Omegaven is an anti-inflammatory lipid that prevents fat build-up in the liver. So if there’s no fuel—fat—there’s no fire—injury.”
In September of 2004, a young baby named Charles was the first to ever receive Omegaven. It came as a saving grace for the tiny boy, who after a few weeks showed improvement and now no longer needs a liver transplant. As of January of this year, 30 patients at the Children’s Hospital in Boston have been receiving Omegaven acording to an article in Newsday. In Toronto at Sick Kids, 11 babies are being fed Omegaven. This new method of feeding could affect over 30 000 patients in the U.S. alone according to the Boston Globe, however there is a problem. Omegaven is not yet approved by the FDA or by Health Canada and it may take months or years for it to be approved. Why?
To avoid too long a post, check back here for the second part next week.
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