By Saskia R.J. Thiadens, RN, Executive Director
It is with tremendous pleasure that I introduce the NLN Garment Fund. This is a dream that has come true not only for me, but for our many patients who do not have insurance or the financial means to purchase the much needed compression stocking(s)/sleeve(s). It was Marilyn Westbrook’s choice to make sure that no other patients have to endure the pain and frustrations she went through six months prior to her passing (Dec 23, 2007). Marilyn and her husband Doyle donated a substantial amount of money to the NLN which will allow patients who qualify to pay for their garment(s). Please see the application form for a list of eligibility requirements. It is available here. For more information please contact our office.
For those of you that would like to and are able to contribute to the fund, you can make a check directly to the NLN and identify “Marilyn Westbrook Fund”. The NLN can also accept donations of other personal assets, such as stocks from your investment portfolio. If you would like to learn more about how you can donate and the substantial benefits to you personally as a donor, please click here.
With the increased restriction of our health insurance and federal laws it is heartwarming to know that we will be able to assist a percentage of the many patients. This fund will help make sure patients wear the much needed garments to maintain their quality of life. Let’s all applaud Marilyn and her family and thank them for this HUGE gift.
Establishing the Marilyn Westbrook Fund
By Doyle Westbrook
Marilyn was always a fighter. With her first cancer she went the route of traditional treatment including, surgery, chemotherapy and radiation in an effort to beat the cancer quickly so she could be there for her children. Throughout the course of treatment, she remained strong and supportive of her children.
With the latest round, chemotherapy was not an option; her experience with the maximum dose of radiation in the previous battle proved to her that its debilitating affect on her healing made it not an option. Marilyn decided to embark on a non-traditional complimentary method of treatment.
The cancer metastasized; while the alternative therapy was helping her gain amazing physical healing, including helping the surgical scars from her first surgery as well as the latest hysterectomy fade away, she had two more out-patient surgeries to remove cancerous lymph nodes. Now her concern was managing the likely lymphedema and she asked our HMO to let her talk to one of their lymphedema specialists. The result of her attempt to minimize potential lymphedema was a wrong prescription for a compression garment that actually accelerated the lymphedema.
The immediate impact was that in early January 2007, she had to stop her complimentary treatment. While we were still searching for a way to treat the cancer, her focus had to be on the more immediate problem of the worsening lymphedema. It was getting so bad that by March I was asking my youngest daughter to schedule her wedding no later than July of 2007. In June, the wedding was scheduled for September 9th.
We had found a lymphedema massage specialist outside of our HMO, but traveling back from the clinic undid all the benefits of the manual lymph drainage massage. While looking through a year-old community phone book, Marilyn found an ad for Michelle Coxon, who was not only a certified specialist but she was willing to come to our house. Even so, in between Michelle's daily weekday visits, especially on the weekend, Marilyn's left leg would puff way up. I was getting concerned that she wouldn't be able to attend the wedding even if she did make it to that day.
Early in the treatment provided by Michelle, Marilyn became practically bedridden; this was due to the lymphedema in her leg. Michelle knew of a miracle worker named Don Kellogg, and arranged for him to see her. Don brought in a wheelchair pad so she could see the material he would use to make her leg appliance. It brought her so much relief while lying in bed, that she asked to keep it; he let her. Then Don went home and sewed up her leg appliance overnight. He brought it back the next day. After just one partial day of use, she was back up and walking in our house.
Unfortunately, the treatment for lymphedema was not a treatment for cancer. Marilyn succumbed to the cancer on December 23, 2007. She was wearing a second much smaller appliance right up until the end as it helped reduce the pain.
Don has stayed in touch as he lost his wife in very similar circumstances. It was his experiences with her lymphedema that led him to develop these custom appliances and start his own company, Telesto Medtech. They are not compression garments. Their directional stitching literally wicks the lymph away from the impacted area to the healthier portions, even secondary channels, of the lymph system.
When I asked how I could honor Marilyn by helping, I learned that many insurance companies don't recognize this miracle appliance as a medical device. Even after using profits from the payments he does receive towards helping other people with lymphedema, there are still so many more people who need the help but can't get it. A child born with an impaired lymph system can need as many as 30 appliances before the growing stops.
Don suggested that I contact Saskia Thiadens, RN at the National Lymphedema Network to see whether something special could be done to help more people get this miracle. Saskia was very receptive and together we formed the Marilyn Westbrook Fund. It has the same charitable donation status as donations to the National Lymphedema Network do. The National Lymphedema Network will dispense the money the fund has available to deserving individuals to acquire lymphedema appliances, compression sleeves/stockings and alternative garments. Donations can be made to the fund by giving to the "National Lymphedema Network for the benefit of Marilyn Westbrook's Fund." See the mention on page for more information on how to contribute and be a part of the fund.
Thank you Don. Marilyn would have succumbed to an infection from the lymphedema much earlier than she did had you not entered our lives. You extended, as well improved her quality of life so much that you made it possible for her to attend her daughter's wedding, enjoy Thanksgiving with her daughter's new in-laws, and meet her son's girlfriend's, now fiancée's, mother. She is survived by her three children, two sisters, brother, mother, and husband.