Update on what has taken place the last 8-9 days…  after my cry for help and my oversharing of frustration and sadness on 8/31/17, we started to get a little traction.  A dear friend from our online support group connected me with a truly AMAZING woman from ICAN – International Cancer Advocacy Network – which is a Not For Profit organization.  She is the President & CEO is incredibly well connected and deeply passionate.  She will help me find the right treatment for Tim; that I am certain of.  She has spent countless hours with me already and has opened doors that we didn’t know were there.  Anyways…  this is an organization that I already hold near and dear to my heart and am planning to invest in going forward.

She has identified some really good options for Tim.  Now it is the work of determining where the best location is.  The trial that she and Dr. Tejani still continue to be “hot on” for Tim is the DART Trial.  It is two Immunotherapies that when combined are proving to demonstrate really strong, promising results.  It think yesterday we saw a statistic of mid-60% for a positive response.  WE WANT THIS TRIAL SO BAD!!!!!!!!!!!  So this is the one that has been ‘put on hold’ through the NCI, but there are other options to possibly still get these two medicines as they are approved separately, just in trial now to prove that the combination is what REALLY works (and to monitor the risks as there are risks).  We are working a few angles now with Marcia (ICAN) and with Dr. Tejani.  Hoping it opens back up via the NCI.  If not, pushing for a possible options here locally with support of the Principle Investigator of the trial who is out UCSD (San Diego).  The two Doctors there, may partner up with our Dr. here.  Again, so many moving parts that we have to manage right now.

Next step is to get to the NCI on Monday, 9/11.  We will meet with the Doctors there and learn about all trials available to Tim and decide what our best next move is.

There is also a VERY promising trial right now at MD Anderson in Houston.  Logicistically, Houston isn’t our easiest treatment center but we will go WHEREVER we have to for the right treatment.  As soon as we are back on Tuesday from the NCI appointment I will start moving quickly with MD Anderson.  We sent everything to Rutgers but it proved to be nothing.

So to sum it up we have the NCI (hopefully), MD Anderson and our local Oncologist in partnership with San Diego.  Or we go to San Diego directly.

Dr. Tejani has drawn a line in the sand though…  we need to have a plan solidified and on treatment within the next two weeks with a trial or he is moving forward with treatment.  It has already been over a month with NO treatment and we cannot go much longer.  We were happy to learn yesterday that Dr. Tejani has a couple of weapons in his arsenal that we will implement quickly if need be and some with very promising statistics.

So nothing definitive to share with you yet, but we are feeling energized and positive that we will have something this week (we hope and pray).

Thank you for your continued support.  We are in rocky waters right now, but feel that our faith and love will help pull us through.

XOXO, Denise

So maybe it isn’t the weight of “THE” world…  it is really just the weight of “our” world.  My daughter’s world.  My world.  My husband’s world.  When you feel this weight, this pressure…  all you need and want to do is get someone to help you.  You want to get answers.  You want to find out and know what your options are.

When you have to chase people – Leave messages and not get returned calls – be told conflicting information – get turned around in circles time and time again…  that is when you crumble.  You fall apart and feel like you cannot, and I mean absolutely cannot take any more.  So you start crying.  You cry to people on the phone that you don’t even know.  You gasp to catch your breath so that they can even somewhat understand what you’re trying to say to them.  You cry so much and cannot control it and your daughters in the room next to you hear you; something you desperately do NOT want to happen, but again, you’ve crumbled and you cannot take any more.  You just cannot hold it in any more.  And there sits one of your daughters in front of you as you so desperately cry in to the phone to this person on the other end, that I don’t think can even come close to understanding what you’re going through.  She sits there with such a painful look and worry in her eye.  Yes, you feel even more failure, even more crumbling inside you.

This was what I lived through this afternoon.  All I want is information and an appointment for my Husband so that I can understand what options we have for clinical trials.  I have now been told something different about our eligibility so many times that I have honestly lost count.  Only to try to pull myself together at the end of the day, to attend my daughter’s soccer game, to see yet another email telling me something different.  I called NCI, then Foundation One, then our Oncologist, back to NCI, back to our Oncologist, back to NCI, then Foundation One…  and who knows in what order it went after that…

I just really want to scream.  All I want to do is help my husband, help my family.  I want a chance to get my husband well and I cannot find someone at the NCI that wants to help me.  The brick wall that I feel that I’m running in to is really painful.  I just can’t get anywhere and I am honestly in so much pain.

I cannot take another day like today.  I feel like the life has been completely sucked out of me.  My poor sweet girls to have to hear that today, I can only imagine the additional fear, sadness and worry that inflicted on them.  My God, I cannot do it sometimes and more than I have in some time, I really need your help.  Your direction.  Your strength.  Your support.  I need you so much.  This is so rough.  It just shouldn’t be this hard to figure out.  You would think there would be someone there to hold your hand and help guide you.  You would think there would be someone there to care.

But I know there is not.  There is not anyone there that can do this for me.  There is not anyone there on the treatment side of things (other than Tejani and Team) that really cares.  THIS IS ALL ON ME.  IT IS ALL UP TO ME TO FIGURE OUT.  TO HELP HOPEFULLY FIND THE RIGHT TREATMENT FOR TIM.  IT IS ALL ON ME!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!  OMG….  SOME DAYS TRULY ARE JUST TOO MUCH.

Thanks for listneing and I know you all care…  I do.  This is not about you and your love and your support.  For that and you, I AM thankful.

XOXO, Denise

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

Life right now you would think, in the space that we are in with Tim feeling well and currently showing No Evidence of Disease, should be pretty care-free, right? Then why can I not stop thinking about it and somewhat obsessing about it? I worry SO much about our family. I WORRY ABOUT TIM. I don’t think an hour goes by that I don’t worry about it coming back or wondering what is happening inside his body at this very moment. Too many have had aggressive recurrence lately immediately following NED results or successful surgeries. It is so alarming how sneaky this cancer is. I think an awful lot about this Fall and the scan that will come in mid-September. I worry because this is the longest we have gone without a scan – it will be 7 months. Yes, that is great and many of you, I’m certain, are having a hard time understanding how and why I allow the worry to take up space in my head and heart. I wonder that too. I can usually control and manage everything in my life but I cannot seem to master this. It takes an incredible amount of energy to fight the thoughts out of my mind when they come in, and I fight them every day, all day, with an enormous amount of determination.

It is so scary. It is so difficult and exhausting every day to fight the thoughts that haunt me. It is hard to remember and believe that everything is happening exactly as it should. It is sometimes near impossible to believe that this is the way it was meant to be and that He has a beautiful, wonderful plan for us. It is painful to see the bad in the world and know that something so horrific is happening to those you love, those that are so giving and loving… it is troublesome, to say the least.

The intent of this entry is to give you an update on the family since I have neglected to do so in a very long time. Tim is amazing. He feels good for the most part. As the weather gets warmer, he needs to be very diligent about his hydration so he doesn’t start feeling poorly. He is working like a mad-man and his business is thriving (for the most part). His Golf League has kicked off and he is loving his Tuesday nights with the guys. The girls are keeping us running with school events, friends, soccer and softball. He and I are loving every single minute of the madness. Tim continues to spend a good amount of time talking with others battling cancer. He continues to provide them with an abundance of hope and serves as an absolute inspiration to them and their families. They are the most beautiful moments for me to witness; he is truly a gift to so many. More amazing is to see the girls watch and listen to him. They sacrifice THEIR time with Daddy so he can help others and that, is the most precious gift of all. These moments are molding our daughters in to two of the most compassionate, beautiful, giving people I may ever know. They live by our words of: #GiveGoodGetGood. Just this morning Mackenzie was taking money out of her wallet to bring to school – they are having a Book Fair – and she knows that a little girl in her class won’t be able to buy anything today so Mackenzie wants to buy something for her. These are the moments that are very telling and make us incredibly proud.

The girls are good. Our family is doing really well. We still pray together EVERY night as they lay their heads on their pillows – we pray together, out loud, and ask for “Daddy’s cancer to stay away for a long, long, long, long, long time”. I remember when this all started and we began praying together, we would ask for “Daddy’s cancer to go away” but when we talked about that prayer and that request, it really didn’t seem reasonable with the cards we had been given. So we wanted to ask God for something that seemed reasonable, something that we were comfortable with. I love to say that prayer with them every night. When we get to that part of the prayer, our hands squeeze tighter and our eyes squint harder and you can feel the seriousness and sincerity of the request. The energy and love fills me up completely.

I always leave their rooms with a smile on my face and happiness in my heart. That my friends is what prayer can do for you. If you are lost or needing direction or feeling the love and appreciation for all that you have, take a moment to pray. Pray and give thanks for the beauty in your life. Pray to ask for the strength you need to get through your challenging times. If you’re lost, pray and ask God what His will is and ask for a sign to guide you; the key then is to have your eyes open. Be aware of what is around you; Trust and Believe. Prayer… it is powerful.

Our family thanks you all for your continued love and support. Yesterday morning at Mackenzie’s concert, one of the Teachers said hello and put her hand on Tim (said nothiing more) and squeezed tight as she walked by. Whew, it is the littlest of moments sometimes that provide us with the greatest amount of strength. We know that it is because of your love and support that our little foursome here is as strong as we are. It is because of you that we can #payitforward and help others.

As always… Give Good, Get Good.

We have been truly held in God’s hands.  He has sat next to me on many occasions and I believe has picked me up off my knees when I didn’t know how to get up.  I know that he remains with my Husband and my daughters.  He is with all of us and through this journey every step of the way.  This life that we live now is more painful that I could ever try to explain to any of you, yet more rewarding than anyone deserves.  Tim and I live our lives the best that we can appreciating every second that we have together.  Things look SO different to us now.  We see what so many will never see and for that, we are forever thankful.  At the same time, it is not easy to live that way.  It takes a conscious effort, every minute of every day.  It is so easy to let your guard down and then, the evil seeps in.  It makes you so heavy and so unbelievably sad.  I admit in, I let that happen more than I’d like, but I forgive myself easily because I am human.  I do worry, although I know whole-heartedly that it does no good.

Do I even have a purpose for this entry?  I actually don’t…  I am just in that space this morning where I know how BLESSED we are, but I’m totally overwhelmed with the feeling of this day two years ago.  I sit here in my office this morning and think nothing more than of Tim and what is running through his heart and mind.  It PAINS ME SO MUCH I want to scream!!!!!!  I get so incredibly mad!!!!!  I want to take that pain and worry for him.  I don’t want him to be sad…  the thoughts and heartache that must come to be so raw for him at this time of year, well…  I cannot even try to pretend to know or understand.

I am often amazed at the amount of tears that one person can produce.  I think this morning I am testing the theory that they could dry up.  I am having a hard time catching my breath and pulling it together.  Who knew it would be so hard, this far out…

So I guess yes, I do have a purpose for this post.  If you have a spare minute and you can send up a prayer for my wonderful Husband, I truly would appreciate it.  Pray for   peace in his mind and heart as he goes through the next couple of days.  Reliving it all is so hard – you cannot even try to imagine (well some of you can).  I’m hoping that Skyler and Mackenzie are oblivious to this time of year…  I really hope they are.  I don’t want them to replay it all, although I know Skyler does more than I want to know.  You can see it in her eyes every time she looks at Tim.  Mackenzie, well she is just so thankful that she has her playful, fun Daddy here every day, she gets the thankful for every moment.

Prayers for those three if you would and maybe a quick one for me.  I am strong, very strong, but this sometimes gets the best of me and this, right here and now, I admit it – it is tough.  I am sad.  But it is okay to have sad days…  as long as they don’t start stringing together.  My Faith always pulls me through because I know there is a much greater plan and that this right here and now, is exactly as it should be.  We are blessed to be given this opportunity to Pay It Forward and help save the lives of others.  We are truly BLESSED that Tim is here, two years later, with No Evidence of Disease.  Yes, we are very thankful.

If you get lost along the path of your life, all you need to do is stop…  and put your face to the sky.  Take a deep breath and feel His love.  Know that you are his child and are exactly where you are supposed to be.  Trust Him and what is to come…  but most importantly DO GOOD.  Get out of your own space and what “you want” and give to others.  Know that this is your real purpose here…  what you have or what you’ve accomplished, if it doesn’t help others then what is it really for?  Give a smile, a hug, a kind word, a helping hand.  Have purpose my dear friends and always remember: Give Good, Get Good.

Thank you for your support today and always.

XOXO, Denise