Our Worst Fear

Tonight after getting Jonathan all of his medication, I watched him close his eyes, and pray “God, please get me to morning.”  It has been another very hard week and a half since I last updated my blog.  And I just don’t understand why something can’t just go smoothly for him?  Or not be complicated?  But the truth is Cancer Sucks!  And I want to warn you, the following is going to be hard to read… But probably only half as hard as it was to write.

On Monday last week, Jonathan checked back into the hospital to start chemo.  The nurses were so sweet and decorated his room in a Hawaiian summer theme.  The hospital ordered him a frig and a microwave for his room.  So we were living in style at the hospital!  Before checking in I insisted we do another baseline scan of Jonathan’s tumor and chest so we knew the tumors exact starting size.  The doctor here in Spokane didn’t feel it was totally necessary because he just was scanned 3 weeks prior, but the doctors in Seattle said they would recommend it.  So I was persistent!  We did the scan that Monday in the hospital.

Jonathan started chemo and I was there with him all day.  He seemed to do fine and there was no hallucinations, which was a fear I had.  We did notice the chemo regimen seemed a bit different than what the doctor in Seattle recommended, so I called Seattle and our doctor here and checked that out.  Turns out we were right and we needed to adjust the chemo.  Seems like now that there isn’t a “standard” of treatment, I need to be on my toes even more.  Not sure if a mistake was made or if all the doctors just needed to agree on the course of action on how to give the chemo.  But we got that all squared away and it only meant one more day in the hospital…  (I’m preaching it again people, you are your best advocate!)  Anyway, Jonathan’s mom delivered his home cooked meal made by our friends and I headed home to hang out with the boys for the evening. 

The boys were loaded into the bike trailer, I was helping dad get his bike down off the rack when my phone rang.  It was Jonathan.  He asked me if I had a second… duh!  Apparently Dr. Raj came in for his evening rounds with the result of the CT from earlier that day.  “He said I now have several spots on my lungs.”  Wait what?  He was just scanned like 3 weeks ago… no spots then.  Now there isn’t just one spot, but several.  Our worst fear has now arrived!  Yep that fast!

I waited to head back to the hospital so his mom could have some time with Jonathan alone.  Then I went back at around 10pm so we could be together.  We laid in his hospital bed and cried for a while.  This is just happening so fast.  I feel like just as I begin to cope with the last hit, I am getting hit with something again.  I can’t breathe, I can’t prepare anything in my head for what is in front of us. 

I came back early the next morning so we could talk to the Dr. together.  He explained that there are 3 spots on his right lung and 2 on his left lung.  This is too many to do surgery on.  This now eliminates the possibility of doing surgery on his pelvis, and I think I told you the stats on what the odds are without removing the tumors.  I think everyone keeps beating around the bush, but we both know the truth is that unless we come across a miracle, we are looking at his death sentence.  So I just asked the question… How Long?  I think his answer was, something like this… If this chemo is effective at slowing this down, 2 years.  So Jonathan and I are guessing that if it isn’t effective, we are looking at probably a fraction of that. 

I worked on paperwork for medical trials at the hospital during the week, as Jonathan was on a 24 hr drip of chemo for 6 days.  By Friday he was beginning to feel pretty crappy.  And I was able to take him home on Sunday.  This chemo wasn’t nearly as bad as the Cisplatin he had to do last time, but it still is working him over.  He said he feels like the ground is moving or tilting back and forth.  So maybe he is hallucinating?  But it is causing nausea, but not so bad that he isn’t eating anything or drinking.  He has been able to eat a little bit and is doing good with fluids.  He says the worst part is his pain!  His tumor only feels ok when he is up moving around, or maybe just not sitting or laying on it.  When he is in the hospital and feels like the ground is moving, laying or sitting is his only option.  So he says it feels like the tumor is pushing so hard into his hip joint that he feels like his leg is about to dislocate.  So we are trying to get his pain under control. 

Yesterday he began to feel a bit better.  He came down stairs and had breakfast with the boys, was playing with them on the couch a little and was coming back to being himself.  I told a new friend of ours that is also battling Osteosarcoma that I would bring him lunch at the hospital that day.  Jonathan said he really wanted to try to go with me.  So he used all his energy to come with me to visit Ryan.  This guy is incredible and has been battling this crap for a while now.  He is defying the odds left and right, and faithfully comes back to the hospital for chemo every 3-4 weeks.  I cannot even begin to tell you how strong both these men are.

So now that Jonathan is starting to feel better in terms of nausea, he of course is getting mouth soars!  And just like last time, he is beginning to feel soars developing throughout his GI tract.  So we know he has no immune system right now.  And to top it off… we have a new side effect, 2 actually! 

        

     1.  Last night at about 3 am Jonathan wakes me up.  He is shivering so hard that is was on the verge of being more like a seizure.  I got up, took his temp, Normal.  He said he wasn’t cold and actually felt warm but could not control his body.  I got him some Ativan to calm him and got in bed and held him tight as if I was going to hold the shaking down.  We did that about a half hour.  (I think he had been shaking like that for about 15 minutes before he woke me up)  I finally decided to set a timer… 5 more minutes and I’m calling the Dr.  I think at 4 minutes he began to stop and then fell asleep.  I called the dr. first thing this morning.  Turns out he could have an infection in his blood stream OR it is chemo induced shivers as the toxins in the tumors are releasing.  So if it persists we need to go to the ER.

      2.   Jonathan is having a very high pulse rate.  This chemo should not be effecting his heart, this one effects his bladder.  So it doesn’t make sense why his pulse is no lower than 110, ever!  At times it is even hitting 150 just from walking to the bathroom.  He is breathless, and has chest tightness.  This has been happening for about a week now.  So I asked the Dr. about that… He asked me to take his blood pressure.  Jon was sitting in bed.  85/123 pulse 117.  So pressure normal, pulse high.  Apparently there is a good chance he may have a pulmonary embolism.  He is ordering a chest work up and we are to check in to the imaging place tomorrow.  If they find a blood clot or see something we will be checking into the ER.

Yesterday I ran an errand and Jude wanted to come with me.  So as I’m driving to the bank, Jude says “Mommy, I don’t like that daddy has cancer.”  I told him I hate it that daddy has cancer.  He then said “Mommy, Jesus has more magic than those bad guys!”  It's funny how a 3 year old can remind you where to find hope.

So, as I sign off here, I’m going to whisper that same prayer.  “Please let him make it to the morning, we would love some of that magic about now!”

Thank you to all the families that brought food while Jon was in the hospital this week.  It was awesome and a huge blessing to him to have home cooked food.

Also, if you are planning to get tickets to the dinner and auction for the Cancer Can't Foundation, you need to do that this week!  www.cancercant.info 

More bad news...

I haven’t sat down to write in the last week because I’ve been having such a hard time coming to grips with what is happening to our family.  I’ve really been struggling with this and just when you think it can’t get worse.  It does! 

So we had a plan, and I was beginning to wrap my mind around the plan.  I think we were prepared for what to expect for at least the next few months… And then we went to our follow up appointment with the surgeon.  He asked if we had spoken with Chappie, the surgeon in Seattle.  We hadn’t, and he explained that he had been, extensively actually.  So he began to explain to us, that the biopsy of the bone came back positive for cancer cells.  He told us the biopsy that he took was higher up into the hip socket than what we thought.  He said it didn’t look like cancer up that high, but he did the biopsy that high so they knew the required margins for the next surgery.  So now that this biopsy was positive, that changed the surgery from what we originally discussed.  Now a hip replacement was no longer an option.  They would have to remove so much of his pelvis that there would be no hip socket left to hold his leg.  This surgery is going to require that they amputate Jonathan's leg and remove most of his left pelvis.

Both boys were in the room with us during this appointment.  Jude had his mind set that he was going to help remove Jonathan’s staples, so we brought them along thinking there wouldn’t be any big surprises.  We were wrong, and it forced me to hold it together… at least for a few minutes.

So the Doctor continued… This is a very major surgery.  You would be in the ICU for days.  And I don’t want to sound harsh, but I need to be frank.  Your chances with this chemo aren’t good.  I want you to know I don’t recommend you even do this surgery.  There was a silence in the room that was far louder than the sound of Jax playing angry birds on Jonathan’s phone.  I then asked “So is it true that there is a 100% fatality if you do not remove the complete tumor?”  He quietly says, Yes.  Jonathan asked “Is there any chance that chemo and radiation could shrink the tumor enough that it would change the surgery?”  He says, there is a small chance, but not to get our hopes up for that to be the case. 

We finished our conversation with the doctor, and then the nurse came in to remove the staples.  Jude jumped to his feet and asked her if he could help.  He and Jax had no idea what was just discussed and that I was trying with every fiber in my being to keep from crying.  Jonathan looked at me with so much strength in his eyes and whispers “It’s just a leg babe.”  I began to help Jude put on some surgical gloves because he somehow talked the nurse and his daddy into letting him remove the staples from Jonathan’s butt.  The next thing I knew we were loading the kids into the car and I found myself crouched by the side of the truck reminding myself to breathe.  It was our 11 year anniversary that day, and I just listened to a doctor tell us to choose quality of life.  We got married so young that I knew for sure we would make it to our 50 year anniversary like both my grandparents did... only 11 years and we are already facing this.  

By the time we got home, I had to run upstairs because I could no longer hold myself together in front of the boys.  I think Jonathan started a movie for them then met me upstairs where we once again cried together.  He somehow talked me into continuing with our anniversary plans for the night.  So we headed out to Northern Qwest Casino to check into a hotel room. 

I think I cried off and on for a few days.  Jonathan seemed to be doing far better than I was.  As we began to talk through this together, Jonathan is really focusing on living in the moment.  He says he is looking at each day as a gift and he isn’t looking beyond today.  So I’m going to decide to try my best to follow his example.   

We are starting chemo on Monday and are continuing with our plan.  We are praying that the chemo is effective and does shrink his tumor, even though we know that is unlikely.  We may try some radiation as well to see if that will help at all to shrink the tumor.  I think what we will do after a few rounds of chemo is to remove his soft tissue tumor.  We will have them test the tumor for the effectiveness of the chemo.  If the chemo is working effectively we may at that point choose to remove the bone portion of the tumor in his pelvis along with his leg if that is required.  If the chemo isn’t showing really good results, we will leave the bone portion of the tumor and head down to Houston (assuming we even get into the trial).  

My dad officially retired last week and is going to become our grandpa nanny.  That means we have full time help with the kids.  He will move with us wherever we need to go.  This has been a huge blessing for Jonathan and I to know that we have help with the kids, and that they can come with us wherever we need to go.  No matter what happens or where we end up, we can do this together, as a family.

Today I  finally feel like I’m starting to feel a bit better.  Jonathan and I went to see a counselor yesterday.  I think it was good for both of us.  I’m so grateful for the skills we had gained over the last year that is helping us communicate through this now.  I'm so incredibly grateful for Jonathan's strength and peace right now.  Somehow he is being the rock and I'm so glad he is leading our family.  We had an elder (or more appropriate, I should say friend) from our church come and pray with us.  I told her how I was struggling between the fact that I KNOW God can change this in a second.  He can heal Jonathan!  But I also know that might not happen for Jonathan and 95% is hard not to face.  And I’m finding myself praying that whatever God’s will is, that I trust his plan is for good, even if I can’t see it and don't understand it.  But MY will is for him to be cured, and if I had my way, I would change all of this!  I feel like I'm praying out of each side of my mouth.  I want to be obedient, but I also want my way.  She was a great reminder that we are to go boldly to Christ.  And he is bigger than this.  So I’m not going to be afraid to ask for healing, even in the face of what these odd are.  We are not going to allow our fears, this cancer, this satin, to cripple us!  We are not going to quit or give up.

I want to thank our support system.  You are truly making a difference in our situation.  I think our dinner sign up sheet was full within an hour and a half of being posted on FB!  Pastor Joe briefly chatted about this verse a couple weeks ago.  2 Corinthians 7:5-6” … but we were harassed at every turn – Conflicts on the outside.  Fear on the inside.  But God, who comforts the downcast, comforted us by the coming of Titus.”  We are being comforted by our friends and family.  And I want you all to know we see Christ through your support.  Thank you for reaching out to us.  And thank you for praying for our family.

Specific Prayer Requests:

1.  Help us find the Joy in each day and just live in each Moment.  This is incredibly difficult, but we know we can win this battle by how we live.  And this is how we want to live.

2.  Extremely effective chemo with little or less side effects!   

3.  Acceptance into the medical trial at Houston.

4.  Strength

On another note, Jonathan is planning his chemo schedule around our Cancer Can't dinner and Auction coming up on September 12th.  If you can make it to Spokane and want to support us in helping others who are going through this exact same nightmare, we would love that.  It does feel really good to help others, and it would feel really good to make this event a huge success.  

Speaker:  Sean Swarner (check out his story here)

Register: Click here

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.