Playing to Win

I think Jonathan and I have come to a decision.  This has been the hardest decision put before us, and we have cried over it, prayed about it, researched it extensively, and questioned all advice.  We still don’t know if we are making the right decision, but we are both 100% confident this is the right decision for us.  We have decided to pursue the medical trial, and while that is in the works, we will begin the chemo option.  We may fail, but in our minds we will be going down swinging!  The other day I was watching the boys fight as brothers do and this just reminds me of our little Jude.  His brother knocked him down hard, he got to his feet, he closed his eyes, put his head down and started throwing hay makers with all his might.  The kid is a scrapper, and he gets it from his daddy!

When we went to Seattle to consult with the team of doctors at the Sarcoma Clinic, they had a plan for us.  Their option was to try a new chemo, then monitor the tumor response.  Based on scan results then we cut it out and do more chemo.  This has the next best odds to what we tried last time.  Their team was wavering on what type of radiation we would add to this approach and when in the game we would do it.  They got us all the information we needed to know about the next best plan and asked if we had questions.  So of course we had already researched our options and knew statistics.  So I asked… “You say this is the next best option, but what are the odds this is going to work, because from our research, this is a pretty sucky option.”  So at this point she finally truthfully told us the stats.  Our next best chance is 5% - 10%.  Then and I quote “Basically we are going to try to keep you alive as long as we can so science can catch up and maybe we find a cure.”  So once again because of our extensive research, Jonathan asked “well what about a medical trial?”  She basically explained to us that at this point it is an option for us, but they wouldn’t recommend it.  There are no statistics and typically they only use that option when the tumor burden becomes so high that chemo therapy is not working.  A clinical trial is your last ditch effort.  So we pushed some more.  We talked about the research we had done on the specific trials using T-Cell Therapy.  We told her we had watched a documentary where they have basically found a cure for leukemia with HIV and T-Cells.  We asked her what she thought of 2 specific trials exploring this science.  She said they have promise.  However they are in early stages and we should wait until they have more information on dosing etc.  BUT we should start down this road.  She said we could begin testing for markers that the trial would need.  Get the information so that later on, we were more ready to go when his tumor burden become to excessive to just cut out. 

We walked away from that appointment feeling no better than we went in.  Their plan was everything we read about the typical course of treatment.  I find it very interesting that until prompted she wasn’t going to tell us how bad the odds were of that plan.  Until prompted she wasn’t even going to give us the option of a medical trial yet.  Doctors are trained based on pure statistical data.  If something can’t offer any data, it is a worse option than 5%.  Even if it means living your entire existence on chemotherapy while chopping your body apart piece by piece. 

So then we had our appointment with our local doctor.  Our second opinion if you will.  He is less trained in the sarcoma world but he has become more than just our doctor.  We were looking forward to our appointment with Dr. Raj because we knew our conversation could be far more personal.  So as we start the conversation he asks what Seattle recommend we do.  We told him… and he said well I have another idea we can consider.  Since your odds are that the tumors are just going to keep coming back, maybe we skip the chemo initially and just cut out the tumors as we can.  We have the medical capability to cut mets out of your lungs, which the tumors will eventually start landing there.  Then when the tumor burden becomes too high to keep just cutting them out, then we can start chemotherapy.  This will allow you a better quality of life for a longer period.  You won’t be constantly immune suppressed, you can feel well enough to participate in family life, you are just dealing with surgery, not both surgery and chemo at the same time.  Then once the chemo does what it can do, we move to the clinical trials.  And somewhere along that road you hope for the miracle that the next tumor doesn’t happen. 

Although this option sounds awful, I totally was following his train of thought.  He was taking into consideration our family, and Jonathan’s quality of life left based on the statistics.  Then we asked if he read all the clinical trials we sent him.  He said he had read them, and he called multiple colleagues around the country who deal more specifically with sarcoma.  We asked him what they thought of the T-Cell science or concept for treating this.  He explained how it worked and why it is a great idea.  He said this is basically being used as the answer for leukemia, and has so much promise but there is still so much to figure out.  So I asked him “So if our odds are 5% or we don’t know, 5% doesn’t seem that much better than 0%, so to me they are the same thing.  Why are people waiting so long to try the trial?”  His answer, “I don’t know!”   So he began to talk it out.  You know you make a valid point… are these trial statistics even skewed because the only patients they get are on their death bed.  The amount of work that these T-Cells would have to do to be successful is a ton when the tumor burden is so high.  That also makes the side effects of the TCell therapy way worse based on how it is working.  So Jonathan asked him that question that probably every doctor gets… “If this was your son, what would you do?”  But this time when Jonathan asked this question, this doctor actually really thought about it.  He sat there for a second I think sincerely taking it to heart, and then he said “I would get into a T-Cell trial, whichever one can get you in faster.”  (because there is only 2)  He gave us a list of things we needed to do, questions we needed to ask.  He said he would be our advocate and get the trial facilitators his cell number.  And worse case, we can always come back to these other 2 horrible options!  Chemo and surgery will always be here…

So now we need to get accepted!!  Jonathan and I have been working diligently to get into these trials.  There are 1 million questions and 2 million hurdles.  Turns out after making some phone calls, the trial out of Duke is currently closed.  We did find out though that when and if it reopens and if Jon can get in, we don’t have to move to North Carolina.  Our local doc is working on the paperwork for a compassionate use of this trial but who knows how long or if it will work.  But we are also 11 on the waiting list when it reopens.  Next option… Texas!  Jonathan called and spoke with the main doctor.  Dr. Wang told Jonathan she didn’t think this was a good idea.  It was phase 1 and there are obvious risks… So Jonathan and I talked and I of course jumped online to promptly email her myself.  (I’ve never liked being told no)  She called me right back.  We had a long conversation, and the next thing we knew, we were getting his biopsy tested to make sure he qualifies.  I got her to call Dr. Raj here in Spokane, who also plead our case why Jonathan would be their best lab rat yet and we are well aware that the risks aren’t that much greater now, rather than later!  So they came up with a plan!  It takes 2 weeks to test Jonathan’s tumor for the HER2 marker.  If he doesn’t test positive, this door shuts in our face!  If he is testing positive, he can be accepted into the trial.  After going through those hoops, it takes at least 8 weeks to grow the TCell therapy infusion.  So while we are going through these hoops we are going to begin chemo and go down this road of option 1 recommended by Seattle doctors.  If he tests positive we will be pursuing the medical trial simultaneously.  Dr. Wang is consulting with her group to see if they will allow us to freeze his TCell growth until his next tumor comes.  (Once we remove the tumor in his hip, it disqualifies him from the trial)  So they are assuming the risk that there is a 5% - 10% chance that Jon is cured and these Tcells will be wasted.  BUT if a tumor does come back, we won’t have to wait 12 weeks to start the TCell therapy.  It will be ready for him, even if the tumor is resectable just like this one.  Then we will head down to Texas and begin the trial!  (Before he is infested with tumors, hoping that less tumor burden will help)  So that’s the plan!  We will be starting chemo here in Spokane soon…

As I lay in bed and my mind races, once again it crossed my mind.  What if we hadn’t done our own research?  Truthfully, we probably would not have even been told clinical trials were even an option for us yet.  Jonathan qualifies because he is stage 4, but by the standard of how these doctors are trained, this isn’t a good option yet, so we aren’t going to present it!  We have not yet exhausted all our options that at least offer some statistics. (even if it is only 1%)    We would not even be given the right to make this choice for ourselves!  Beyond that, there are like 15 sarcoma trials.  Most are other types of chemo, or different agents tried with chemo.  We aren’t just doing any trial, we have researched the ones we believe to show the most hope.  So I can’t tell you that this is going to work.  I can’t tell you if this is going to save Jonathan’s life… but for all of you people out there that don’t advocate for yourself or a loved one.  I’m here to tell you first hand, you need to do your due diligence.  You need to research and know your options!  Because now we have some tiny glimmer of hope.  Just maybe Jonathan won’t have to suffer through years of chemotherapy.  Just maybe he won’t be cut apart piece by piece.  We are going to go against the crowd.  We are going to throw the Hail Mary on the first down (well second down I guess) for the win, instead of wait for the 4^th down when the defense expects it!  We are going down swinging and maybe just maybe we find a miracle now, and not after he has suffered for years already. 

 

I’m going to assume that most of you don’t really understand or are not well informed about what T-Cell Therapy is… why would most people know about it?  If you don’t have cancer it isn’t something you would be researching.  Here is a link to a documentary briefing that was done specific to t-cell therapy advances that Jonathan and I found last year.  This concept has for all intensive purposes become the cure to leukemia.  https://m.youtube.com/watch?v=k-z22u2003k (If you have the time, find the full HBO version documentary, this is extremely informative)   Here is also a link to a blog of a patient going through the trial at Baylor with the Chicken Pox Virus and T-Cell Therapy.  He does a great job of explaining, and if you watched the HBO thing, our opinion is, for him, it working!  http://vogelzoo.blogspot.com/search?updated-min=2015-01-01T00:00:00-08:00&updated-max=2016-01-01T00:00:00-08:00&max-results=35  We do know as of right now, TCells are not working well on solid tumors.  So this is still a huge uphill battle, but it is some form of hope none the less. 

So we are now beginning to pick ourselves up off the ground, brush ourselves off and getting ready to battle.  No more pity party, or crying all the time!   I feel a little bit like Jude... lets just close our eyes, put our heads down and start swinging.   We can just pray we land a hard hit before we get hit! 

If I could throw out a prayer request?  Please pray that Jonathan tests positive for that HER2 marker.  If he doesn't then we can't get into that trial in Texas and that would feel like another devastating blow. 

Once we know our hospital schedule, I will ask Nikki to start a food sign up again for dinners for Jonathan in the hospital.  That was probably the number 1 blessing to us last time we went through this!  I know so many of you have offered to bring food, so that will be the most help.  Thank you all for your prayers and support.