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When we broke the news to Dr. Tejani, I must say, we crushed his heart as well.  He was beside himself upset with what had happened and the way it played out.  Since last week I have emailed three other Centers about Trials and have even gone back to MD Anderson to challenge the distribution of the medicines but unfortunately no luck with that.  And the other couple of trials I found, short bowel was part of the exclusion criteria and the other was in the Netherlands

So there we sat…and sat…and sat…  then Monday evening, we shuddered with fear as we saw the disk of Tim’s CT Scan from Mass General sitting in our mailbox.  What story would this scan tell us?  Where are we headed?  You have NO IDEA of how badly I wanted to just throw it in the woods and “play stupid”…  just pretend that all was ‘okay’ and to believe that ignorance was bliss.  Funny…  even Tim, for being someone that HAS NEVER in his life liked to pretend at anything (other than pretending he was a fireman in his younger years when he wasn’t), even Tim said earlier this week that he was feeling good and just wanted to push it out of his mind and pretend…  yeah, Tim said that.  So, I took the disk and drove it to Wilmot and hand delivered it to Dr. Tejani yesterday morning.

So I awoke this morning to Tim’s sweet voice saying “Happy Birthday Denise”…  gosh, how I loved the sound of that.  This morning has been BEYOND ROUGH…  I have cried elephant sized tears all morning…  my eyes are swollen and they really hurt…  it has been a VERY emotional morning for me for a couple of different reasons that I really don’t need to get in to detail about.  But then….  then my phone dinged and I saw there was a message from Dr. Tejani…  OMG, that means he read the scan that I dropped off yesterday…  OMG, what will his message say?  Will he say, we need to meet in person right away…  Will he say, I’m so sorry but…  So do I open the message here, at home, by myself?  Do I wait and drive to Tim’s office and open it with him?  Do I call Tim on the phone and open it at the same time with him on the other end?  I stared at it so blankly…  with so much anxiety and pain coursing through my veins…  I was sweating…  I couldn’t believe how bad my hands were shaking.  Then I thought, “I’m already a sobbing mess, if it is bad news I’m not sure I can cry anymore…”  So I clicked on the link…  and there it was:  “Thanks for dropping off the CD yesterday.  I have reviewed and discussed with our radiologist.  GOOD NEWS:  NO change in tumor burden (lungs and abdomen) from August and no new spread!  Yeah!  I am relieved.”

I couldn’t wait to call Tim.  Ahhhhhh, we are relieved.  Tim had himself set up for a minimum of 10% increase in tumor burden and the devil was in my head telling me there would be new tumor spots.  Yes, this is only 2 months since the last scan, but we have had no treatment and were really scared.  We will take this good news and celebrate it today and find the good in the moment we are in.

The challenge upon us is to STILL find and decide on treatment VERY quickly.  Tejani’s words were:  “we still need to move forward with urgency to keep ahead of it”.  Tejani is out of town Thursday & Friday and told us if nothing new has surfaced/solidified by the end of day Friday, we need to start treatment with him next week.  Looks like we will start off with Irinotecan or Tramatemib.

Then just now as I am typing, MD Anderson (Houston, TX) called and said that Dr. Janku wanted us to consider a different trial.  It is an oral medication so I’ve asked them to specifically review Tim’s Operative Notes from July 2012 to ensure that the short bowel is not a concern.  She said she would research and get back to me tomorrow.  I’m not getting overly excited as this is a Phase I (first in human) Study which we are not jazzed about but not ruling it out until Tejani has reviewed it and given us his thoughts.

I am thankful for my birthday gift this morning from Dr. Tejani.  I think it is the best gift I could have hoped for.  Thank you all for your continued love and support.

I will update you at the beginning of next week once our start date and plan is solidified but hoping to start a day next week with treatment.

XOXO, Denise

We have no words.  We are numb.  We don’t know what to do nor where to turn.  We are exhausted.  We are devastated.  We feel so beaten.  We feel alone, more so than ever.  I need to get my arms around Tim.  We need time to process this.  We will, in time, pick ourselves up off the ground and put the millions of pieces that we are in back together.  We told the girls, imagine, just try to imagine what is going through their heads and hearts…because I sure cannot.

We will push forward with Dr. Tejani to determine our next step(s).  We will let you know, when we know.

XOXO, Denise

• the visit went well
• it looks like we are an in for the PLX8394 Trial; we signed the consent form yesterday
• we had a liquid biopsy done yesterday, should have the results in 2 weeks; it is super helpful with targeted treatments
• we have to go next week for baseline testing; eyes, skin, blood work, ct scan and they’ll do a biopsy if they can – this will be a full day of appointments
• we will then go back (and hopefully) start the trial the week of Oct 16th
• the trial length before rescan to see if it is working = 2 months

Just waiting for a phone call from Mass General with appt date/time for next week.

XOXO, Denise

I am doing much better at living our life one-day-at-a-time.  When I climb in to bed at night I tell myself that I did all that I could do to figure out my day and get through it the best that I could.

• I did my best to get more information and progress with solidifying a treatment for Tim

• I did the best I could at my job and for the company I work for

• I did the best I could at trying to be a good friend and stay in touch

• I tried to be a good daughter/sister by staying connected with my family (which I have failed at for a few days)

• I tried to be a good Mommy and support my girls through the heartbreaks and difficulties they’ve encountered, to support them with academics, to support them with sports/activities/work, to support them through their worries about Daddy, to support them by just loving up on them as much as I could

• I tried to be a good, supportive, loving wife

• I tried to keep up maintaining our home

…and if i can say yes to all of those at the end of EVERY day, then I try to clear my mind enough to sleep.  Then I wake and say okay, I will do the same again today, I will TRY….at everything I can.

I think I feel sad, heavy and frustrated today because yesterday didn’t end on a good note.  We had dinner with friends and I came home, jumped on the computer and made a phone call to get some answers that were swirling around in our heads.  I’ve mentioned UC San Diego to you all before – the Principal Investigator of a promising trial is there and we had been lead to believe that if we couldn’t get the combo of these medicines administered here locally (which we cannot) that we could head out to UCSD and get it.  So when we finally decided that we are going to travel across the country for however long we need to, I call to ask the specifics of how long will it take to get an appointment, how long should we plan to stay in San Diego, etc.  I am then told…  no, it won’t be done.  Because why you ask?  Because now I’m told that this Doctor is “too pro-patient” and is too worried about the disruption to our life, the cost we will have to incur to travel so much and the risk to our relationship with our local Oncologist.  <insert very, very, VERY confused face here>  ummmm, if we are willing to uproot our life for an indefinite period of time and leave our children and bear the cost associated with such… then… ummm… excuse me… but isn’t that for us to decide?  As for our relationship with our Oncologist, Dr. Tejani, that is the last of our concerns.  He is the MOST supportive, loving, compassionate, intelligent man.  So, when I see you in person if you’re interested in WHY I think this is happening (remember, its what I think not know)…  I will tell you.

San Diego = Not an option for us.

I did get a call from MD Anderson in Houston, TX yesterday and they want us down there on Monday, September 25th. Yes, so that’s good news yet not an easy place to travel to (yet again).  We will make it work.

We are getting tired.  We are feeling an insurmountable amount of pressure.  We are worried.  WE.NEED.A.PLAN.  Our two week timeline/deadline is tomorrow.

So here is what I think we have left…  ummmmm, not a lot.  Houston cannot tell us over the phone if they’ve identified a Trial for Tim – that’s the frustrating part.  We could take a couple of days to travel down there for a 3-4 hour appointment to tell us that they have a Phase I trial which we already know we are not interested in.  Trying to remain positive that Tim will fit in to one of the two Trials they do have open right now.  Say a prayer on Monday that one or both are a match for us.

We know that some form of treatment at this point is better than none.  We are right around the 2 month mark with NO treatment.  This cannot continue.

Our options are:

1. Houston (if a trial is identified on Monday)

1. Work with Dr. Tejani here with one of the 3 traditional treatment options he has talked to us about – Irinotecan, Lonsurf or Stivarga.  Possibly a non-V600 BRAF Mutation inhibitor called Trametinib.

We will continue to stay close to and watch for the DART Trial to re-open, but unfortunately, we cannot wait with no treatment.

Gosh, now I’m a crying mess again!!!!!!!!  My neck is dripping, my shirt is spotty, my desk is wet and I can’t see clearly….  this is just so damn heavy and overwhelming.  What is the right move?  If you go with a trial you have to see it through – it can be months before you know if it is working.  If you go with a more traditional treatment you need to give it months to know if that is working.  You then need to wait and clear out from any treatments before trying something else if what you chose didn’t work.  REALLY??????????  I still sometimes have a hard time really believing this is happening and how incredibly difficult it is to decide what treatment is best for Tim.  Here’s the thing, we will never know if something else might have worked better, if the one we chose doesn’t work.  Nah, there’s no overwhelming sense of responsibility and pressure with that…  nah, not at all.  On the flip side I hope and pray that all of the work we are doing leads us to choosing the treatment that DOES work.

And people wonder why I look completely worn out.  Shit, I even have people tell me right to my face that I don’t look good.  That I looked worn or drained.  Yeah…  yeah, that’s what I want to hear.  Whatever…  I’m certain there is no deliberate harm intended.  And I wonder why I am so hard sometimes.  This life has made me so loving, so kind, so understanding and accepting of so much but then on the other hand, this life has made me so INtolerant of bullshit.  Enough bullshit.  Own your shit.  Be a good person.  Stop making excuses for you or your child for making a bad decision.  If you or your child acts like an asshole – own it, and fix it.  I am so at a point in my life where I have ZERO tolerance for people treating people poorly.  WHY?  I mean really, why?  Why do people do it?  They do it because they have their own shit they avoid fixing.  Friggen fix it!  And another thing that I absolutely NO LONGER can tolerate is the competitiveness – at the adult nor child level – you know, the Keep Up With the Jones’ kind of mentality.  The my kid is better than yours.  The my kid is on a higher level of play than yours.  The my kid gets better grades than yours.  I DON’T CARE.  That is only said to make the adult or child feel better and think about it really, how does it make the adults or children feel around you?  You already know, it makes them feel like they are less which is why you deliberately said what you said!!!  STOP IT PEOPLE!  Stop with the comparisons.  Stop with the pressure you put on yourself and your children.  STOP WITH THE JUDGING PEOPLE.  Embrace the differences we all have.  Look to learn from others.  See the gifts – they are there, in front of you and you’re missing them.  Love life.  Love where you are and what you have.  Work to do better if you don’t like where you are.  STOP COMPLAINING.  It is exhausting, draining and steals your moments away.  When you have something in your life that you CANNOT fix…that’s when true torture takes over.  So fix what you can.  Love all the time with an amount of intensity and passion that frightens you at first.  It might feel strange and uncomfortable but you will soon embrace it.  You will feel so much light and love.  Hug people when you see them.  Kiss them.  When you are in the midst of torture in a situation that is so out of your control all of those hugs and kisses and all of that love WILL carry you through.  That I promise you.  You will get back what you put out in to the universe so LOVE LOVE LOVE LOVE!!!!!!!!!!!!!!

I cannot believe how emotional I am feeling today and the rant that I just went on.  Well, this is my space and sometimes stuff builds up and needs to go….  it needs to get away from me so that it doesn’t steal my moments…  so I leave it here.  I think I’ve said enough today.  My tears are starting to dry up and for that I am grateful.  I am grateful for this space.

I will provide you with an update after our Houston visit and after we connect back with Dr. Tejani.  So you’ll hear from me probably Tuesday or Wednesday.

XOXO, Denise

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