The Wesley Family knows that awareness may possibly save your life – at the least, it will provide you with HOPE! Take a listen and then share this with everyone you know. Together, we can, will and are… making a difference.

Awareness of this cancer and the treatment(s) available are key to saving your life or extending it. The Wesley Family and BE uninTIMidated continue to work tirelessly to help others. Please help us.

A few weeks ago,  one of Kelly’s  college roommates, Jenna Vandervort, contacted Kelly’s Mother because she had an idea of what she’d like to give Kelly for a birthday gift this year.  Jenna knew that the Wesley Family and BE uninTIMidated held a special place in Kelly’s heart so she wanted to see if it would be possible to make a donation to the organization in Kelly’s name.

BUT… Jenna didn’t stop there.  She reached out to the WPI Swim Team and asked if anyone would want to join her in making a birthday donation in Kelly’s name.  The outcome?… 22 others decided to join in!!!  They raised $540.00 and donated it to BE uninTIMidated in Kelly Martin’s name.

The video is a couple of these wonderful young adults providing Kelly the certificate of donation.  THIS BLOWS US AWAY!!!!  IT GIVES US AN INCREDIBLE SENSE OF HOPE for what the world can be.  The desire of these 22 individuals to want to Pay If Forward could become contagious and imagine – just imagine what that could do for our world.  We need to see more stories like this.  More acts of kindness.  We need to see the good and beauty in this world.

Thank you Jenna Vandervort for your love for Kelly and your support of her love for BE uninTIMidated.  We wish and hope many young children (and adults) will see this and want to be ‘Just Like Jenna’.  We hope it will make them want to give good.

Thank you to all that donated in honor of Kelly’s Birthday:  Jenna Vandervort, Caroline Flynn, Alex Gallant, Alexis Mittelman, Alice Morgan, Allysa Grant, Anna Matsco, Cailin Gonyea, Carol Wang, Eva Childers, Hendrick Suwirjo, Jack Bauer, Jackson Perry, Josh Driscoll, Julia Bushell, Karin ElSayed, Mackenzie Karnilaw, Seth MacDonald, Sofie de Oliveira, Stephanie Marcucci, Trevor Gehring, Zoe Eggleston and Katlin Travers.

In December 2016, four Webster Schroeder High School students selected BE uninTIMidated as their focus for their Junior Leadership Project Final. They sold candy canes for $1.00 during Lunch where the candy canes could be sent with a note to another person or kept for themselves. This Team, pictured here, raised $248.00 – now that is A LOT of candy canes and a lot of work.

Thank you for your hard work and support. You are helping to save lives and advance treatments and awareness surrounding Appendix Cancer and should be very proud. BE uninTIMidated is incredibly grateful.

Pictured from L to R: Mallory DiFelice, Madi Ball, Brett Bingo, Tim Wesley, Mike Reiger, Denise Wesley, Mackenzie Wesley and Skyler Wesley.

@superwebstercsd
@WCSDProud
@Schroder HS

February 29, 2016 marks the 9th annual international Rare Disease Day. On this day every year, organizations around the globe unite their efforts to help bring awareness to the many rare illnesses that do not often see the spotlight. The international rare disease community asks that you recognize this day and Join us in making the voice of rare diseases heard.

The collective organizations releasing this statement wish to bring awareness to pseudomyxoma peritonei, also known simply as PMP, and cancer of the appendix (which often causes PMP). This rare disease impacts approximately two in a million people every year. As patients, caregivers and clinicians impacted by this disease, it is our hope to bring awareness to this disease and its proper treatment.

Twenty years ago, PMP was almost uniformly fatal. Today, treatment exists that is potentially curative and is practiced by centers of excellence around the globe. Even though a treatment exists that cures many, it is not broadly practiced and local physicians and their patients routinely proceed through ill-advised and insufficient treatments for lack of knowledge.

The standard of care for PMP is cytoreductive surgery plus hyperthermic intraperitoneal chemotherapy (CRS+HIPEC). This procedure, at times coupled with intravenous chemotherapy, has been successful at curing many patients. It’s important to understand that the skill and experience of both the surgeon and the treatment center are important factors that influence a successful outcome. Although the procedure is quite invasive, when performed by a specialist the associated morbidity and mortality are no greater than for similar surgeries.

CRS+HIPEC has been shown to provide long term survival in up to 90% of patients with low-grade PMP pathology who are properly diagnosed and undergo the treatment early enough in the disease process. Additionally, it has demonstrated an overall 10-year survival in nearly 2/3 of patients diagnosed with this disease.

A number of patient-run organizations work together to raise awareness about PMP and its proper treatment, raise funds for research and disburse them responsibly, and to provide information, support and hope to patients, caregivers and the clinicians that fight this disease. We do so with a positive attitude while being realistic about the challenges around its treatment. In this manner we support our small community and help ensure all patients have access to the standard of care for our rare disease.
We hope you’ll join us on Rare Disease Day in raising awareness of pseudomyxoma peritonei and appendix cancer. Please share this message and join us in making the voice of rare diseases heard.

Appendix Cancer Connection (Appendix-Cancer.com)
BE uninTIMidated (BEuninTIMidated.org)
The Insurance Warrior (TheInsuranceWarrior.com)
PMP Research Foundation (PMPCure.org)
PMP Pals Network (PMPPals.net)<strong

Then in to the part of life where I became a Wife and a Mother, guess what… life was STILL fair. I found an amazing man – all that I had ever dreamed of in a Husband; funny, loving, honest, supportive and compassionate – I got what I wanted. I was then blessed with the two most beautiful, most precious gifts ever… our daughters; Skyler MacKennah and Mackenzie Logan. Life was perfect. Perfectly beautiful. I knew I was blessed. Life was fair.

So my perfectly beautiful life is then turned upside down and inside out and I go back to how unfair life is. And it is. But life is only unfair based on the way you look at it. To me, it is unfair because I’m not getting what I expected. I don’t know what will come next. I don’t know what the greater plan is. All I do know is, this is not going according to what I had planned, so I deem it to be ‘unfair’. But here is the thing; if I can hold on to the Hope and the Faith and trust that this is all as it should be, then this IS fair. This is and can be as beautiful as we make it and I think we’re doing a pretty good job with it so far. This has changed our family forever. Skyler and Mackenzie are such incredible little ladies, you’ve no idea what they’ve accomplished in the last 12-24 months and how much they’ve grown – academically, emotionally, spiritually… it is an amazing gift to see and be a part of. Because of the way Tim and I are choosing to accept this new road we are on, we have found a deeper love, something that I don’t believe we would have experienced otherwise.

I talked with someone last night at our Fundraiser Event and he had lost someone close to him just a few days ago. We talked about what a great guy he was and how unfair it was that he was taken at such a young age (43). We then turned to look at Tim and spoke of how unfair it is that he is going through the battle he is. Here is my thought on this, and again, this is just my thought in this moment and I felt compelled to share… IT IS FAIR. It should be these people and you know why? Because these are the people that have already touched so many in their life, in so many different ways. They are the people that have the most breadth. They have the ability to communicate with others in a way that many do not. Through the loss of them, through their victories, through the battles they must fight – just by knowing them, you become a better person. They are true gifts to those that know them and those that truly love and embrace who they are. To those of us that know Tim, embrace Tim, support Tim… we are all better people.

This is God’s way of helping all of us. He chooses those that can do His work here on earth. Some are here longer to do His work and some do it in a shorter period of time. Tim, I believe, is doing amazing work and has so much more left to do. I think that Tim, Skyler, Mackenzie and I have embraced this situation and the difficulties that come with it. We work with every breath that we have, to turn it in to something good. To speak kinder. To be kinder. To love more. To help others. To keep raising awareness of this disease and to keep telling Tim’s story. To continue to provide Hope to those that need it. God Is Good. His work is amazing if only you take the time to step back and see it.

Remember that this life is a temporary place where we all have the chance to leave a beautiful memory of ourselves. To make our mark. To give to others. To be remembered as a good person, a giving person. Do that with every chance that you can. Give!!!! Give a hug. Give a smile. Give a kiss. Give a hand. Give a dollar. Give a wink. Give respect. Give support. Give hope.

Not sure what this blog entry is for or if it has any purpose, but I will say that I find it comforting to share my thoughts because if my thoughts help to inspire just 1 person and it helps get them through a difficult time, then I have done good. Give Good Get Good.

http://mdmercy.com/news-and-events/media-relations/news-by-mercy/2014/april/doctors-day?sc_lang=en

Before you leave the hospital, it is critical that you understand your rights to your Medical Information.  You should ask for an Authorization for Release of Medical Information.  You need to complete that form immediately and when it asks you for the “Type of Records or Information Requested” complete the paperwork with all tests, reports, records and scans related to your situation.  Complete the paperwork with ALL dates related to your situation.  Walk the completed form to the Records Department before you leave the hospital.  Turn it in and ask for copies to be ready within 48 hours.  Ask for 3 copies of everything.  Be sure you are getting copies of the disks of your scans and not just the Radiologist’s Report.  GET 3 COPIES.  You have the right to as many copies as you want (fees may apply).

Once you have done this and have this information in your hands, you will feel more in control.  You will be on your way to owning your treatment, your health, your future.  You will keep 1 copy of this information with you at all times.  You will have it with you at every appointment you go to.  Get a binder, get organized.  The other copies will be used to send to the Specialists or other Medical Centers for 2^nd and 3^rd opinions.  Remember, you will challenge your Doctor, you will seek clarity, you will ask for the statistics to validate what you are being told and you will double and possibly triple check the accuracy of it.  You will own your situation.

Get copies of everything as quickly as you are told of your situation; this is “what you do first”.