PMP Pal Family Donates $9,400 to PMP Research and Awareness!When fourteen year old Amos’ father, Rene, was diagnosed with Psuedomyxoma Peritonei, the high school student experienced the concerns felt by any youngster who learns his parent has a rare and challenging disease.Amos became concerned when he observed the months of uncertainty and lack of knowledge about PMP among local physicians, until his father finally connected with specialist, Dr Viktor Verwaal in Amsterdam. Amos realized the need to bring awareness about the diagnosis and treatment of PMP to Holland. He set about to create a unique method of raising funds to support Dr Verwaal’s Peritoneal Surface Malignancy research program, while bringing attention to the rare diagnosis of Pseudomyxoma Peritonei.Having been raised in a family where appreciation and nurturing of is personal musical talents had been encouraged, Amos focused his concerns for his father into creating a CD comprised of his own arrangements of music he composed, as well as standards by the Beatles and Rolling Stones.Amos attached a label stating “Against PMP!” to his CDs and shipped three dozen copies to the US in support of the PMP Pals’ Network.He then proceeded to sell his CDs in his native Holland and collected funds to support the research conducted by his father’s surgeon specialist, Dr Victor Verwaal.Amos is now 15 years old and, his father, Rene, is now more than one year post op from CRS HIPEC. Both Rene, and his wife, Suzanna, have returned to work, while Amos and his older brother, Tobias, continue their studies in higher education.Last week, Amos and his family, visited Dr Verwaal for one of Rene’s post operative check ups. During that visit, Amos presented Dr Verwaal with a check for nearly 7,200 Euros to benefit research and to expand awareness about the accurate diagnosis and treatment of PMP in Holland!Amos presented the check to Dr Verwaal during a reception held at the Antoni van Leeuwenhoek Hospital in Amsterdam. During the reception, Amos treated the hospital staff and guests to selections from his musical arrangements.Amos began composing his own music when he was 12 years old. Sadly, his piano teacher is also a cancer patient now.Amos and his family provide us with yet another example converting the challenges presented by cancer, into providing hope and encouragement for future patients and their families! For more information about Pseudomyxoma Peritonei, visit www.pmppals.orgFor more information about Dr VJ Verwaal and other HIPEC Treatment Specialists, visit www.pmppals.org Copyright©2012 by Gabriella Graham/PMP Pals’ Network. All rights reserved. Visit us on the web at www.pmppals.org We have HOPE for YOU!
Post-Operative Weight Loss & Canned Supplemental Beverages
Family caregivers and, indeed, patients themselves, are surprised if the patient does not gain weight quickly following GI surgery, even though s/he may be consuming canned liquid "nutritional supplemental beverages." Patients and their family caregivers may not realize that these canned supplemental beverages may lead to the "Three D's", (diarrhea, dehydration and distress) and may prevent post-operative weight gain.
These symptoms may occur in GI cancer patients who have experienced colon resections, gastrectomies, ileostomies, etc. Commercial canned beverages generally include high percentages of simple sugars (corn syrup) and milk/lactose sugars (milk solids.) These ingredients contribute to diarrhea in patients who may experience "short gut syndrome" and "dumping syndrome" post operatively. The consumption of commercially prepared supplemental canned beverages, as well as any sweeteners, simple sugars and lactose products, may actually create conditions of weight loss and malabsorption instead of weight gain.
For more information on post-operative nutrition, refer to “Nutrition” link on www.pmppals.org
For specific recommendations regarding your personal nutritional needs, consult with a licensed dietician/nutritionist or physician. The PMP Pals’ Network does not provide medical advice. Patients must seek the counsel for their own physicians and healthcare professionals.
Copyright © 2012 by Gabriella Graham and the PMP Pals’ Network. This article is copyrighted and may not be reproduced without written permission from the author. Visit us on the web at www.pmppals.org We have HOPE for YOU!
Friends Can Help Young Families Affected by Cancer!
Adapted from KidsKonnected.org
Do you know a young mom or dad going through cancer treatment?
While the parent/patient may be receiving support from fellow adults, quality time, normally devoted to the children, may be reduced while adults in the family tend to the details of cancer treatment, employment, health insurance, etc.
Can you volunteer one or two hours a week to support the child or children of that parent?
Here are suggestions to help you share your time and “pinch hit” to help care for your friends’ children, during times of need.
When visiting a family affected by cancer…
acknowledge the fact that the child's parent is sick. The child is aware of the parent's sickness. Acknowledgement of this fact allows the child to be able to talk freely about how (s)he is feeling and shows the child that you care about not only the parent, but the child.
Ask the child, "How are you doing"? By asking how the child is doing, you give the child a sense of self-worth.
Be available to help support the family!
Here are suggestions to provide practical support…
Take the children to soccer or softball practice.
Take the children to dinner or a movie; give the parents some quiet time together.
Grocery shop for the family; stock the refrigerator with food that the children can easily prepare for themselves.
Provide for a fun distraction!
Family life is strained when a parent has been diagnosed and is going through treatment. Relief from that stress, even for a brief period of time, can make a big difference to the child's emotional health!
Offer to take the child/children to play dates, sports activities, trips to the library, bike riding, visits to the park, etc.
Be available to just listen!
Dealing with the emotional side is critical and an integral part of what the parent and child is going experiencing. Allow children to express their feelings about their parent’s health, in an environment of love, caring and understanding.
These suggestions were developed by Kids Konnected. Visit kidskonnected.org for more resources to assist children whose parents have been diagnosed with cancer
Articles posted in PMP Pals and on www.pmppals.org are written from the perspective of patients and family caregivers and are not intended to substitute for professional, licensed legal and/or healthcare advice. Patients should seek the counsel of their licensed professional consultants regarding their specific needs. Copyright © 2012 by PMP Pals’ Network/All rights reserved.
PMP Pals' Network Begins 14th Year of Service: 1998-2011 This month marks the beginning of the fourteenth year of service for the PMP Pals' Network!Our volunteer "grass roots" program serves patients and their families in 49 countries and in more than a dozen languages!Developed by a cadre of ten dedicated patients and family caregivers in Holland, the United Kingdom and the United States in 1998, our goals have remained consistent and proven to be successful for more than a decade.Our mission has been to assist patients in obtaining the best possible medical care/treatment for rare cancers/diseases affecting the digestive system,To provide practical resources and support (financial, health insurance, transportation, etc.) To provide pre screened, trained and vetted "Pal Mentors" to share helpful suggestions for pre and post treatment recuperation, To educate the public about our rare disease, treatments for our disease and the need to support research for treatment,And, in conjunction with our first goal, to interview, vet and publicize responsible healthcare providers who demonstrate expertise in the treatment of our disease.Of the Founding Members of the PMP Pals' Network, including Pal Family Caregivers Bernard Goldberg, Sara Shatford Layne PhD, Tom Panek and Audrey Ragan, three remain living today, with octogenarian Mr. Panek having passed away due heart disease three years ago. Of the Founding Members of the PMP Pals' Network, including Pal Patients, Elizabeth Collins, Henry den Hartog PhD, Gabriella Graham, Charlotte Lindon, Edie McCall and Joan Panek, two remain living today, with Mrs. Collins, Dr den Hartog, Mrs. McCall and Mrs. Panek having passed away due to complications from cancer.Surviving Pal Patients, Mrs. Lindon and Mrs. Graham, share the same diagnosis of metastatic mucinous adenocarcinoma with Pseudomyxoma Peritonei. Neither of these patients have ever been cancer free. Both are veterans of numerous surgeries for palliative care, and remain active participants in the PMP Pals' Network today, in spite of their original poor prognoses. Mrs. Lindon celebrated her 91st birthday two weeks ago!The PMP Pals' Network is proud to provide patients and their families with the most comprehensive source of practical information regarding Appendiceal Cancer, Pseudomyxoma Peritonei and all Peritoneal Surface Malignancies via www.pmppals.org, a site so popular that it has been copied by other "support groups" and healthcare industry companies. The "Pals" pride themselves in providing "real time" and face-to-face support and resources for patients and their families. In spite of the rarity of our various diagnoses, we are able to personally match liked minded patients and their families, in a manner that provides true comfort and assistance at a time when it is needed the most.PMP Pals puts the "CAN DO!" in Cancer!® We CAN outlive our prognosis! We CAN live well in spite of a challenging and rare diagnosis! We CAN find a cure for our rare disease! Thank you for your participation in the PMP Pals' Network! Articles posted in PMP Pals and on www.pmppals.org are written from the perspective of patients and family caregivers and are not intended to substitute for professional, licensed legal and/or healthcare advice. Patients should seek the counsel of their licensed professional consultants regarding their specific needs. Copyright © 2012 by PMP Pals’ Network/All rights reserved