This was posted by the National Lymphadema Network's Executive Director Saskia R.J. Thiadens, R.N. and may be helpful information for someone needing financial help with compression garments.
The Marilyn Wesstbrook Garment Fund
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
sunstantial amount of money to the NLN which will allow patients who
qualify to pay for their garment(s). In order to qualify you will
need to be an NLN member and submit an application; an online
application will be published very soon. 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 call the NLN.
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.
- Saskia R.J. Thiadens, R.N., Executive Director
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
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.
In loving memory,