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A plastic-bound divided-by-topic loose-leaf journal, it corralled appointments, prescription info, test results, and more. <br><Br> At the encouragement of Megan's doctors, her parents have made the journal system – Megswork Patient Medical Journal ($40) – available in two versions: one for cancer, one for other conditions. </body> </html>",jQuery.extend(true,likno_modal_project_October_2004_options,options));};var likno_modal_project_July_1_2003_options = jQuery.extend(true,{ }, jQuery.likno_modal_project.impl.defaults, {header:{show:true,text:"Tuesday, July 1, 2003, Toledo Blade",textCss:nRTC("")},footer:{show:false},wrapCss:nRTC("")});lwmw_preloadImages(likno_modal_project_July_1_2003_options);likno_modal_project.July_1_2003=July_1_2003=function(options){jQuery.likno_modal_project.impl.init("<center><p style=\"font-weight:bold; font-size:14px\">Adrian girl's parents offer assistance to others Journals keep spirit of cancer victim alive</p><br>  <img align=\"center\" src=\"images/hayeswithjournals.jpg\"><br>  <p style=\"font-size:11px;\">Patt and Mary Helen Hayes display the folder they put together when their daughter, Megan, was being treated for cancer along with the new folder they created for others. (THE BLADE/ALLAN DETRICH)</p><br>  <p style=\"font-size:11px;\">By ERICA BLAKE<br> TOLEDO BLADE STAFF WRITER<br> Article published Tuesday, July 1, 2003</p></center><br>   <p>ADRIAN - The memory of Megan Hayes can be found in the people she knew and the places she went. At Notre Dame Academy in Toledo where Megan was a student, a memorial garden will be created in her honor. In Adrian, her hometown, charity concerts have been held to raise money for cancer research. And in the backyard of the home where she grew, flowers and shrubs are planted in her name.</p><br>  <p>But Megan's parents don't want her memory to end simply with those who knew her. They are striving to keep her fighting spirit alive with medical journals - something Patt and Mary Helen Hayes found essential while caring for their ailing daughter.</p><br>  <p>Megan was diagnosed with Ewing's Sarcoma, a rare childhood cancer, in April, 1999. She died April 25, 2001, at age 19. \"About two weeks after Megan died, we were sitting here in the living room and we talked about what had happened,\" said Mrs. Hayes, an administrative assistant at Adrian Public Schools. \"We believe it is our purpose to create journals for others in similar situations.\"</p><br>  <p>The creation of Megan's \"blue book\" began less than a week after her diagnosis. She was admitted to the University of Michigan Medical Center in Ann Arbor to begin aggressive treatment of the massive tumor that had formed in her ribcage. It was then that she and her parents realized just how complicated her illness was. Nurses were scheduling appointments for treatments and tests. Doctors were prescribing medication. And emergency trips to the local hospital meant new doctors who didn't know her medical history.</p><br>  <p>Megan's blue book had everything she and her doctors would ever need. A calendar for appointments and medications, files to organize her discharge papers and test results, and a journal to document the course of her illness. There were spots to file business cards and photographs, sections for resource materials and her medical cards, and a place to keep instructions for things like how to administer drugs. Megan never went anywhere without the book. It was the key to her journey through her illness.</p><br>  <p>\"In order to not have mistakes and not miss anything, we put everything down,\" Mrs. Hayes said. \"It relieves the stress. You don't have to remember anything; it's all right here.\"</p><br>  <p>The Hayeses have no doubt that the journal offered them some sanity during a devastating time in their lives. They are certain that it eliminated confusion and mistakes as well as saved precious time.</p><br>  <p>Most important, the blue book offered Megan and her family peace of mind, secure in the knowledge that she would never be lost in the system. \"We had to be our own advocates,\" said Mr. Hayes, a sales manager at a local radio station. \"We realized that we needed to know more. We needed to know what questions to ask.\"</p><br>  <p>When their daughter died, the couple took what they learned when creating the blue book and offered it to others. The first journal the couple created was the result of many hours of research and plenty of input from the doctors they had gotten to know so well. Together, they created the cancer Medical Journal, and made it available to others under the trademark name, Megswork. A second, general Medical Journal also was created.</p><br>  <p>\"We do believe that we are really doing Megan's work,\" Mrs. Hayes said. \"She wanted to be a physician and so she went to the University of Michigan. But after about nine weeks, she relapsed.\"</p><br>  <p>Jenny Engle is currently cancer-free. The 34-year-old mother of four was diagnosed with breast cancer more than a year ago and found herself in a whirlwind of doctor's prescriptions and hospital visits. Mrs. Engle said she met the Hayes family at church. It was there she learned of their medical journals. And after her second visit to the Hickman Medical Center, she asked the facility - who had purchased some of the journals - for one.</p><br>  <p>\"It's been wonderful. I guess I would say that I'm sure it's doing what they wanted it to do. It's just so organized,\" said Mrs. Engle. \"Now I'm into a routine and I know so much more about my illness. But at first it was just this overwhelming amount of information.\"</p><br>  <p>The couple have sold about 400 journals to date, the majority to service organizations who then disseminate them to patients. With the $40 fee, Mr. and Mrs. Hayes produce more journals. Mrs. Hayes said they would love to produce the journals for free, but cannot afford to do so. They have pledged that once they can sustain the company, a foundation will be set up in Megan's name and all profits will be donated to cancer research.</p><br>  <p>Dr. Jennifer Hirsch, of the University of Michigan Medical Center, helped care for Megan during her illness. Now a cardiac surgery fellow, Dr. Hirsch said she often sees patients who are overwhelmed with the paperwork that comes with having a major illness. The journals, she added, would benefit most patients and she would like to see them made more readily available.</p><br>  <p>\"I certainly see more often patients who have very little grasp about their medical history rather than those who have something so comprehensive as what the Hayeses had with that blue book,\" Dr. Hirsch said. \"I think the journal is a fabulous idea that really helps to put control back into the hands of the patient who often feels powerless about their illness.\"</p><br>  <p>For more information, go to www.megswork.com.</p>",jQuery.extend(true,likno_modal_project_July_1_2003_options,options));};var likno_modal_project_February_23_2003_options = jQuery.extend(true,{ }, jQuery.likno_modal_project.impl.defaults, {header:{show:true,text:"February 2003, The Daily Telegram, Lenawee County, MI",textCss:nRTC("")},footer:{show:false},wrapCss:nRTC("")});lwmw_preloadImages(likno_modal_project_February_23_2003_options);likno_modal_project.February_23_2003=February_23_2003=function(options){jQuery.likno_modal_project.impl.init("<center><p style=\"font-weight:bold; font-size:14px\">A Tribute to Megan</p><br>  <p style=\"font-size:11px;\">February 2003<br /> By Janelle Keefer -- Daily Telegram Staff Writer<br /> The Daily Telegram<br /> Lenawee County, MI</p></center><br>  <p>Small gold pins adorn the lapels of Patt and Mary Helen Hayes, symbols of the battle against cancer their daughter Megan fought ... and lost.</p><br>  <p>That heart-wrenching experience, however, has led them to find a way to help others waging that war: They're manufacturing Patient Medical Journals, which organize everything from prescription papers to discharge slips.</p><br>  <p>\"We're doing Megan's work our way,\" said Mary Helen Hayes, whose daughter battled Ewing's sarcoma for two years before succumbing in April 2001. \"We thought, 'Gee, this really worked for us -- we should get this to other people.' If you go through something like this, you really want to give back.\"</p><br>  <p>In 1999, Megan Hayes was diagnosed with the rare cancer that affects primarily children and young adults.</p><br>  <p>In the midst of the grief and anxiety the family was feeling, they also had to come to grips with new, unfamiliar medical terms, a slew of doctor appointments, various medications and the painstaking lengths to which they would need to go to reamain organized.</p><br>  <p>\"We got there and they started throwing all this stuff at us and we said, 'Whoa! We need to get organized,' \" said Patt Hayes, sales manager for WLEN-FM in Adrian.</p><br>  <p>That's exactly what they did. They purchased a large binder, several inserts for it for cards and pictures and a three-ringed case to hold miscellaneous items, then put their organizational skills to work.</p><br>  <p>The result was a \"secretary in a book.\"</p><br>  <p>At the front is a three-ring paper punch, followed by a case to hold anything from calling cards to spare change. Then began sections for everything else.</p><br>  <p>The Hayeses placed calendars first, to track schedules and appointments; then jackets to hold business cards. The next section held discharge slips, then doctors appointments and medication printouts. Everything was kept in chronological order, with the most recent on top for easy reference.</p><br>  <p>\"You can always ask for a printout,\" said Mary Helen Hayes, an administrative assistant for Adrian Public Schools. \"The reason we asked is because Megan would have side effects from the drugs, so if she took something, we knew what (to look for).\"</p><br>  <p>Following medication printouts was an information section, which details procedures or anything else someone may need to know when caring for an individual, such as how to disconnect the chemotherapy apparatus.</p><br>  <p>The next section listed resources.</p><br>  <p>\"You have all kinds of people giving advice -- we would take that information and put it here,\" Patt Hayes said, gesturing to Megan's medical journal. \"Then we could always look back to that.\"</p><br>  <p>The next section listed names and phone numbers of family and friends, followed by pictures of people who helped in the fight against cancer.</p><br>  <p>\"It made it more positive with that stuff in there,\" Patt Hayes said, describing the section devoted to photographs of warm memories, such as when the vocal group Three Men and a Tenor sang a song for Megan at the Lenawee County Fair.</p><br>  <p>That was the first Patient Medical Journal. It has changed slightly and now there are two versions: one geared to cancer patients and the other a general medical organizer anyone can use. Both have additional sections, such as a medical glossary.</p><br>  <p>They are even are kept at the Hickman Cancer Center at Bixby Medical Center in Adrian. Doctors there give them to patients whom they believe may benefit from them.</p><br>  <p>\"I think they're a great way to help patients stay well-organized,\" said Dr. Harry Johnson, an oncologist at Hickman. \"With the complexity of cases, it's difficult to keep things straight. (The journals) make it a lot easier for them. They help reduce information overload.\"</p><br>  <p>According to the Hayeses, reducing \"information overload\" is a fitting description of the journals' function.</p><br>  <p>\"Knowledge is power,\" Mary Helen Hayes said. \"Patients have to be an advocate for themselves. (With the journal) you have all the information at your fingertips and it's helpful. We never had a mix-up, it saved time and caregivers loved it.\"</p><br>  <p>Patrick Cassidy, director of oncology at Hickman, agreed that the journals are a great way to help patients stay organized.</p><br>  <p>\"I remember saying, 'This would have been good even for when my kids were little,' \" Cassidy said. \"It's a comprehensive, little notebook for anything the patient may need. It's a place to keep all medical information, and if a patient has to see a different doctor, the patient would be able to explain everything.\"</p><br>  <p>Although the Hayeses cannot afford to simply give the journals away, they said they hope to use their \"cottage industry\" of assembling the journals as a fund-raising tool for cancer research. The price is $40 for either the general medical organizer or the cancer patient's organizer.</p><br>  <p>\"Obviously, this is for profit, but if and when this becomes profitable, we are going to give it back,\" Patt Hayes said. \"We want a cure.\"</p><br>  <p>For more information about the Patient Medical Journal or to place an order, visit www.megswork.com or write to Megswork Inc., P.O. Box 1214 Adrian MI 49221.</p>",jQuery.extend(true,likno_modal_project_February_23_2003_options,options));};var likno_modal_project_February_2003_options = jQuery.extend(true,{ }, jQuery.likno_modal_project.impl.defaults, {header:{show:true,text:"February 2003, The Current, Michigan's Upper Peninsula",textCss:nRTC("")},footer:{show:false},wrapCss:nRTC("")});lwmw_preloadImages(likno_modal_project_February_2003_options);likno_modal_project.February_2003=February_2003=function(options){jQuery.likno_modal_project.impl.init("<center><p style=\"font-weight:bold; font-size:14px\">SPOTLIGHT<br> Out of the darkness, a path to follow</p><br>  <p style=\"font-size:11px;\">J.J. Van Gasse M.D.<br /> The Current - Michigan's Upper Peninsula<br /> February 2003</p></center><br>  <p>I first met Megan at a basketball game where her father and I were doing the radio broadcast. She was a bubbling, vivacious teenager, filled with the ambition and joyfulness of youth. There was no mountain too high, no road too winding, to keep her from life's goals.</p><br>  <p>She was a superb student, a gifted young lady, a credit to her parents. She spent her junior year of high school as an exchange student in Japan, returned home wiser in the ways of the world, aware of the differences in cultures and values, and began planning for college. But fate is fickle and deep inside her body the orderly behavior of a small group of cells had gone awry. Initially the symptoms were minimal, the signs all but invisible, but one day there was no denying the existence of a problem and the problem was serious. Cancer. Thus began Megan's long journey into the labyrinth of the medical care system. Medical care in this country is the best in the world but at the same time is surely one of the most complex and taxing experiences anyone must face.</p><br>  <p>Appointments must be scheduled, tests must be performed, consultations arranged, medication begun, and over it all hangs the need to record, track, and maintain some kind of personal control over the entire process. Megan required hospitalization for some of her treatment; she underwent surgery; chemotherapy was begun. There were side effects, some unsettling.</p><br>  <p>To the entire family, others milder, transient, handled with the proper information. Through it all Megan finished high school, dreamed of a higher calling, applied to and was accepted at excellent universities. She chose The University of Michigan and enrolled as a freshman. She was on campus when her disease showed its cruelest face. Earlier surgery and courses of chemotherapy had helped, the tumor seemed to be shrinking, but then it recurred and one more struggle was left to be waged.</p><br>  <p>In the end Megan lost but she left behind her a legacy that may yet prove to be of benefit to many others suffering from any long term illness. Early in her struggle Megan felt the need to organize her defenses, plan for the campaign she understood lay ahead. With her parents, Patt and Mary Helen, she recognized the need for a Journal, a permanent, portable record of her disease, her treatments, her multiple laboratory and diagnostic tests, her medication, possible side effects, dates, plans, results, names and phone numbers of all relevant caregivers and support personnel.</p><br>  <p>In effect, they recreated the entire medical record of Megan's long journey, organized it in logical sequence, made it useful and readily available to anyone seeing her for the first or one-hundredth time. It saved time, it avoided the need to flip through the ponderous sheaf of documents, sometimes hundreds of pages thick, papers that make up the usual hospital medical record, improved access to pertinent information and provided valuable data concerning what had been done, when it had been done and what still remained to be done.</p><br>  <p>In time her doctors, nurses and the support personnel with whom Megan dealt with on a daily basis realized that Megan's Journal had become a vital tool in her continuing care. It was all there, everything, in one place, able to be taken from one appointment to the next, from home to the hospital and back. From doctor to doctor.</p><br>  <p>Providing valuable information as to when, why, and how a procedure had been done. Capable of responding to insurance questions, producing documentation authorizing payment, answering questions as rapidly as they arose. And it was clear that Megan had left a legacy behind, a useful tool for anyone facing the peril of long term illness whether it be cancer or some other dilemma such as a failing heart, hypertension, diabetes, organ transplant, Alzheimer's, high risk pregnancy, geriatric care and on to a myriad of conditions that face Americans across the country.</p><br>  <p>Recognizing the usefulness of the original journal Patt and Mary Helen have created the new Patient Medical Journal, at present a durable plastic three inch loose leaf binder but soon to be available in a zip-up version complete with an easy carrying handle. Inside are all of the ingredients of Megan's model: a three hole punch to prepare regular sheets of paper, making them journal ready; a mesh envelope to store loose change, ID and telephone calling cards, personal items, and much more. Sturdy preprinted sheets separate the journal into compartments accommodating reports, appointment calendars, laboratory data, discharge summaries, diagnoses, treatments, side effects, and the telephone numbers of every physician or caregiver involved. A glossary of medical terms and information about potent drugs and their possible side effects is always at your fingertips. The answer is always at hand.</p><br>  <p>It's all there, it's MEGSWORK, it's her legacy to us all. If you, or someone in your family, has a chronic illness, you should look into it. The Journals are available now and more information may be obtained by contacting Megswork, P.O. Box 1214, Adrian, MI 49221 or on the website at <a href=\"http://www.megswork.com\">www.megswork.com.</a></p><br>  <p>Megan was not a patient of mine, but the daughter of close friends. She has left them but they have kept her work alive.</p> ",jQuery.extend(true,likno_modal_project_February_2003_options,options));};var likno_modal_project_January_29_2003_options = jQuery.extend(true,{ }, jQuery.likno_modal_project.impl.defaults, {header:{show:true,text:"January 29, 2003, Ann Arbor News, MI",textCss:nRTC("")},footer:{show:false},wrapCss:nRTC("")});lwmw_preloadImages(likno_modal_project_January_29_2003_options);likno_modal_project.January_29_2003=January_29_2003=function(options){jQuery.likno_modal_project.impl.init("<center><p style=\"font-weight:bold; font-size:14px\">UNITED IN GRIEF AND PURPOSE</p><br>  <p style=\"font-size:11px;\">Parents of young cancer victims share organization tool to help others navigate difficult days</p><br>  <p style=\"font-size:11px;\">Wednesday, January 29, 2003<br> by Jo Collins Mathis<br> News Staff Reporter<br> ANN ARBOR NEWS</p></center><br>  <p>When Walt and Paula Crosby learned their 8-year-old son had a rare form of cancer and probably wouldn't live much longer, they weren't concerned about organizing the accompanying paperwork.</p><br>  <p>\"You have to understand,\" said Paula Crosby, sitting in the couple's home in the Hawthorne Ridge subdivision off Ann Arbor-Saline Road in Pittsfield Township. \"I was in denial. I didn't want any of this information.\"</p><br>  <p>But endless data started coming at them, anyhow: pages of instructions, medication information, appointments, staff phone numbers, resources, business cards, discharge papers. Soon, Paula had numbers and names on scraps of paper everywhere as she and her husband focused on their son.</p><br>  <p>\"It was chaos,\" she recalled, as her husband nodded.</p><br>  <p>Now, a little over a year after John's death, the Crosbys and another couple who also lost a child to cancer are helping to provide other families with specially designed journals to help them navigate the confusing world of cancer treatment.</p><br>  <p>The journals were designed by Megan Hayes of Adrian, who died of cancer nearly two years ago.</p><br>  <p>Megan, then 17, and her parents, Patt and Mary Helen Hayes put the first journal together shortly after they learned Megan had Ewing's sarcoma. After a trip to Kmart, the family had a three-ring binder with sections and pockets that neatly organized and chronicled paperwork, pictures and journal entries during the next two difficult years.</p><br>  <p>\"This book really saved us so much time and stress,\" said Mary Helen Hayes, holding Megan's \"blue book.\" \"We did not leave home without this book. Time after time, it just worked.\"</p><br>  <p>Megan Hayes was a new student at the University of Michigan when, on Halloween night of 2000, doctors told her that her tumor had returned. She died at home the following April, after six memorable weeks at home that were like \"a party every day,\" her father said.</p><br>  <p>Soon after Megan died, her parents decided one way they could help other families was to market journals similar to Megan's blue book to help patients and their care givers stay organized at an overwhelming time.</p><br>  <p>It was two weeks before Megan's death that the Crosbys took their son, John, to the doctor for a routine checkup, only to discover the seemingly healthy boy had andrenocortical carcinoma, a rare cancer usually found in adults.</p><br>  <p>John, a third-grader at Lawton Elementary, died at home six months later on Oct. 9, 2001.</p><br>  <p>Eager to do something to help other families, the Crosbys started the John R. Crosby Memorial Foundation to benefit organizations who helped support their son when he was a patient at Mott Children's Hospital. The organizations include the Giving Library, Child Life, the Pediatric Intensive Care Unit and the Adrenal Cancer and Comprehensive Cancer Center.</p><br>  <p>\"As painful as it is, it's very therapeutic for us to help other families,\" said Walt Crosby, general manager of R N Communications in Ann Arbor.</p><br>  <p>United in grief and a determination to make a difference for others, the Crosbys and Hayeses became close friends. Now the John Crosby Foundation has purchased 25 of the patient medical journals originally designed by Megan Hayes to give to pediatric cancer patients at U-M. A second version of the journal is designed to assist with any illness or long-term care.</p><br>  <p>\"When you're fighting a potentially fatal disease, you want to make sure you make every moment count,\" said Paula Crosby. She said she wishes she had owned such a journal.</p><br>  <p>Walt Crosby said he lived in the ICU with John for 36 days and saw first-hand how important information can be overlooked. He agrees that an organized notebook would have been a big help for everyone involved in his son's care.</p><br>  <p>The Hickman Cancer Center in Adrian also purchased 25 of the journals to give to patients. Nurse Darcel Shankle said families appreciate and benefit from the journals.</p><br>  <p>\"They carry them around with them, bring them to all their appointments,\" she said. \"They really help families get organized.\"</p><br>  <p>Mary Helen Hayes is glad others can benefit from her family's experience.</p><br>  <p>\"It's what we learned,\" she said, \"and what we can do to make it easier for other people.\"</p><br>  <p>To order a Megswork patient medical journal, go to <a href=\"http://www.megswork.com\">www.megswork.com</a> or e-mail Megswork at <a href=\"mailto:info@megswork.com\">info@megswork.com</a>.</p><br>  <p>Jo Collins Mathis can be reached at <a href=\"mailto:jmathis@annarbornews.com\">jmathis@annarbornews.com</a> or (734) 994-6849.</p> ",jQuery.extend(true,likno_modal_project_January_29_2003_options,options));};}}
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