Ignorance is Bliss

I haven’t been writing blogs as frequently the last couple months.  Things have really been going so well that I haven’t wanted to sit down to write.  Life almost feels normal again.  Jonathan almost feels normal!  The kid’s behavior feels normal… Or at least we aren’t praying about cancer every night.  They are back to praying about normal things like nightmares.  Which is fine with us… it’s painful to know that cancer was consuming so much of their thoughts.  It’s such a relief to see them almost get to be normal kids.  It is so hard not to read into everything they do though.  Jude has been pretty clingy lately.  Never wants me to leave and always wants to know exactly how many minutes until I will return.  Probably normal for a 3 year old, but of course I psycho analyze it.  Is he understanding on some level the ultimate fate of his daddy and so he is clinging to me? 

Tomorrow will be Jonathan’s third trial infusion.  As I write this blog, he isn’t even home.  I sent him off on another bucket list trip just after Thanksgiving.  A boys golf trip in California where he gets to play a few courses most all real golfers will most likely never get to cross off their list.  He will get home around midnight and checks in to the doctor first thing in the morning.  He has to remind me sometimes to enjoy my minutes and not focus on the bad.  He truly is living that every day and successfully squeezing everything good out of the minutes he has. 

He still has not had any side effects from the trial drug that we know of.  He could do this forever if he had to… If we could be so lucky.  Last time we met with Jonathan’s oncologist we began looking at the calendar to schedule his next set of scans.  D day if you will.  His scan should be around December 14^th.  I was actually so relieved when Dr. Raj said, well you know what, “why don’t we do an extra infusion and just wait until after Christmas?”  Our life right now is the exact definition of the saying ‘ignorance is bliss.’  If we did not get good news, it would ruin our Christmas.  I would be working on arrangements to moving us to Texas most likely to try to get into this other trial out of Berkley.  I think we all would just rather not know.  He is doing so well, at least it seems like he is.

I’ve asked him a few times if he has any feelings about what he thinks is happening inside his body.  How does he feel?  He said he has pain at the tumor site in the hip.  But it isn’t something that IBProfin can’t manage.  That wasn’t the case in July and August.  He has enough range of motion still that he can tie his own shoe.  Again that wasn’t the case when we found the second tumor.  He gained that range of motion back during those 2 rounds of chemo… He has maintained his mobility at the very least.  He says he still feels nothing in his chest.  I have no idea if you can feel lung spots though?  I haven’t asked or researched that.  But not feeling anything can’t be a bad sign right?  So we are going to stay the course!  We are going to enjoy our Christmas, watch our youngest son turn 4 and then cross off a few more bucket list items before we get that dreaded scan.  It is looking like that will happen around the second week of January now. 

Jonathan called me on the phone 2 nights ago to tell me about his golf round for the day.  I wanted to share a story he shared with me.  It brought tears to my eyes as I talked to him.  First of all, he was so excited.  I could just tell by his voice that he was just in awe that he actually was getting to play his dream course.  I asked how he played.  He said he actually played very well for the first 7 holes.  It is almost like the course designer made it easy to get your hopes up and then puts you in your place.  I said, “so I take it you didn’t finish well?”  He said it didn’t even matter.  The weather was perfect, not a cloud in the sky and it was just amazing to get to play.  I asked how his best friend Scott played.  (I hope Scott doesn’t mind me sharing this)  Jonathan told me that Scott started off not so good so he just stoped keeping score.  This right there is so much of why I love Scott.  He just gets it!  He gets Jonathan.  He decided to walk the course that day so he could take everything in with each step.  It didn’t matter what his score was.  But Jonathan said as he approached Scott on the 18^th green, Scott had tears in his eyes.  I can only imagine he gave Jonathan a big brother type hug and I’m so glad that he was there with Jonathan.  He completely enjoyed his minutes and he didn’t let anything stop him from doing that.  He had to make a conscious choice though to make sure that happened.  So many times we think the score matters, but it doesn’t.  It’s the view, it’s the people you are with, it is the opportunity.  Scott if you read this.  I love you!  And thank you!  And Kevin, there are no words. 

On our drive to my parents for thanksgiving Jonathan and I were chatting about things we were thankful for.  You know as horrible as this entire situation is, because horrible doesn’t even begin to tough the service, there are still things to be grateful for.  I told him I feel like we are living the actual Tim McGraw song “Live like you are dying.”  If you have to go young, I’m grateful that we have been able to live intentionally.  Many people will live until they are 70 or 60 and still think they have plenty of time.  So they don’t go live.  And if I get me answer to prayer, I promise you, we will be “living” for the next 40 years. 

As I talk about thankfulness, I read a book a couple months ago that our pastor recommended.  “The Joy in the Journey.”  Sharol brought up this scripture that I really try to remind myself of frequently.  As I talk about my fears and everything that we have been through and may lie ahead, this helps!  2 Corinthians 12:9 “My grace is sufficient for you, for power is made perfect in weakness.”   I had an old friend remind me recently it is ok to be weak sometimes.  

(We had to pull over so the boys could have their first snow ball fight of the winter... yep we are on an off ramp!)

What Quality of Life Looks Like!

I’m starting to get emails and texts again asking how things are going for Jonathan.  It is so nice to know people are thinking of us and praying for us constantly.  So I will give you all a quick update.

Jonathan started his trial drug on October 21^st.  Unlike our usual treatments we were able to go to our doctor’s office instead of the hospital.  They drew blood and then we met with Dr. Raj to review the side effects one more time.  He handed us 4 pages of possible side effects Jonathan could experience.  Most of these side effects looked similar to chemotherapy actually.  Nausea, diarrhea, losing liver function, losing function of his pituitary gland, loss of eye site, pain and redness at the tumor site, and on and on and on.  We know they have to list every single side effect ever experienced, but know through extensive research that most people handle this drug very well.  It is actually completely the opposite of chemo therapy!

The doctor told us that stopping chemo could cause it to be less effective if we were to go back to it at a later date and reminded us that he thinks we should keep trying chemo until it becomes ineffective.  We told him we understand what we are doing and let’s proceed with the trial drug. 

To be honest, it is so much easier coming to a logical plan of choosing quality of life, rather than actually doing it.  Before going to this doctor’s appointment, I was having a hard time.  I often am trying so hard to enjoy my minutes and helping my children enjoy their minutes that I don’t take time to tell people how incredibly hard this actually is.  We have a family friend that cleans our house each week.  She told me the only way she knows how I’m really doing is by how many tissues she is picking up from the bedside each week.  There were a lot of tissues last week.  The thought of actually changing our course of action to “quality of life” was really hard on me.  I let myself go down that road of when these fun bucket list trips with Jonathan stop.  We met with our financial advisor to look at what my financial situation will look like when I don’t have my husband.  I take one of my children to play therapy once a week preparing a relationship for them to have someone to talk to when they lose their daddy.  I’ve compiled a list of conversations I’m terrified to have with my boys because I’m their mom and it needs to come from their dad.  Jonathan is working on now writing them letters for me to give them each year.  I am praying every day that this trial is our miracle.  But we are living our reality that it probably won’t be.  We are doing a great job of enjoying ourselves and doing everything we want to do together.  We will have no regrets!  And we honestly aren’t crying every day and are successfully enjoying each day.  But we still allow ourselves bad days too.  The night before he started the trial was a bad night…

(What Quality Life Looks Like... And Jonathan was not in the hospital and got to see all of it!)

Went to a Cougar Game

 

 Halloween

Making Sugar Cookies (OR playing in flour)

 

After we were finished with the doctor we headed out to the nice room with recliner chairs and big windows.  The nurses told us Jonathan’s white blood cell counts were still actually kind of low but since this isn’t going to effect that, onward and upward.  It took 30 minutes and he was done.  He said he felt totally fine.  He even drove home.  Later that afternoon his face got a bit flush and he decided he wanted to take a nap.  He got up, did the dishes, played with the kids, ate dinner normally and seemed totally fine.  The next day he said he felt totally normal!  No side effects.  Now that is has been over a week, he has started getting some pain in his hip.  It is hard to tell if it is the tumor growing or the immune therapy killing the tumor.  I sure hope the latter. 

 

Jonathan has been golfing 3 times since last Wednesday and is doing great overall.  He is back to pre- cancer weight and looks good!  He has started coming to the gym with me again in the morning and has been able to do a cardio machine for 25 minutes before he moves on to the weights.  His pulse rate is doing much better and is getting lower than it has been in 18 months now. 

We have been very busy with Cancer Can’t stuff again.  We’ve been working on thank you emails/cards.  I’ve been gathering samples for my meeting with the hospital and are getting excited to see that start to come together.  We are working on our charitable pharmacy project and have been meeting with new board members, law makers, attorneys and physicians.  We feel good that we are able to spend our time working to help other cancer patients.  I guess it feels good to have a purpose.  We are also very honored that Cancer Can’t was selected to be the recipient for the SamScramble funds this year.  If you can, on New Years day, please go participate with your family in such a fun and meaningful event.  Go to: https://sites.google.com/site/samscramble/home  to register.

Please be praying that this trial is working, and is actually effectively shrinking Jonathan’s tumors.  Or even just stopping its growth.  I know God is giving us so much strength that we are able to enjoy each day.  I pray all the time for this type of strength.  Please also pray that Jonathan has little to no symptoms as we continue on this trial.  So far so good!

Jonathan was accepted into a Trial!!

Last Wednesday morning Jax woke up and you could just tell he woke up on the wrong side of the bed.  I asked him to get dressed for school and he decides his pants didn’t feel right.  So we changed his pants 3 times.  Then as he sat and ate breakfast he was mean mugging Jude the entire time.  He was rude to me and just mean to Jude.  So as I sat down to eat my eggs with the boys, I began to have a little talk with Jax.  I explained how each day when we wake up we make a choice.  We decide if we are going to be happy and enjoy our day, or we can decide if we are going to be grumpy.  If we choose to be grumpy our days usually are going to go much worse than if we chose to be happy.  People don’t want to be around you and include you in fun things if you are grumpy.  I asked if he thought if he could choose to be happy today instead of grumpy.  He sat there for a few minutes and then began to smile.  He said he wanted to be happy and we then began to joke, laugh and have a much better day. 

I feel like this is a choice I am consciously making every day myself.  If I decide to focus on the things that make me sad, it effects my entire day.  So Jonathan and I are really trying to spend each day consciously choosing how our day is going to go.  How we are going to look at each day and what attitude we are going to have.  One day Jonathan actually said to me, “I’m not going to die today, so why are we wasting our day on crying?”  As a result we are choosing to enjoy each day to the fullest. 

So today I am writing this blog from the New York JFK airport terminal.  Jonathan and I just had the most incredible week!  When Jonathan’s cancer came back, he made a bucket list of things he would like to do.  Some of them I laughed at, and others we decided to make happen.  If you know Jonathan well, you can just guess what type of items he would include that I would just laugh at… No need to explain.  Anyway, seeing Time Square in New York was on his list.  So I booked the airline tickets around treatments.  I then called my cousin who just started working here in NYC and told him to plan amazing activities for us.  And did he ever!  Most people can live 90 years and never do any of the things we got to do this week.  I don’t need to list out our entire trip, but the stand out event was our Tuesday dinner. 

When we arrived we were greeted by a guy that had our name and the entire reservation list memorized.  This was the first time we have ever had a maître d’.  It was amazing!  We had a 14 course meal with wine on the menu that costs more than my car.  When I got up to use the restroom, the maître d’ walked me there, and each employee you walk past, bows at you.  Enough said!  Luckily by the end of the evening we found out our maître d’ was a lower middle class kid from Brooklynn and he actually loved our inappropriate humor and the fact that we had no idea how to use a French sauce spoon.    In fact for our parting gift, he gave us each a real silver French sauce spoon wrapped with a bow and printed for us, on very nice paper the history of this absurd slightly useless sauce spoon.  Our evening ended with us joking around with Questlove, the drummer on Jimmy Fallon, about throwing knives at this birthday balloon that escaped from a guest.  Oh and yes, we did have escargot!  Growing up I always had escargot in my mind as the food rich people ate.  We were so far out of our league at this restaurant but it was an absolutely incredible experience.  This night along with seeing a live Jimmy Fallon show and box suite seats at a New York Giants game.  The week could not have been more fun.

So now we are on our way back home to see our beautiful boys AND to officially start a medical trial drug.  Yep, Jonathan was accepted for compassionate use of the drug out of Duke.  Today we met with Dr. Raj and will discuss our decision of starting the drug.  When we were leaving for New York he called to chat with us about Jonathan’s scan results from the chemo.  After completing 2 rounds of the ifos etop drugs they scan to see if you are responding.  To refresh your memory, roughly 25% of osteosarcoma patients respond to this chemo regiment.  Of that 25%, for only 5% of those, this option is curative.  And curative only in conjunction with surgery.  For Jonathan, that means loosing his leg and now a double lung surgery.  (which would be very hard to even find a surgeon who would do that!)  So the results… the tumor in his pelvis did in fact shrink.  The multiple tumors in his lungs are stable and unchanged.  So now we know we fall within that 25%.  However because the lungs didn’t change, we assume we do not fall within the 5%.  (This is what Jonathan and I are concluding)  Our oncologist is on the train of thought that we continue chemo as long as it is responding.  It will buy us more time.  We are not on that same train!  We know we have been approved to start the use of this trial drug from Duke and know that this drug has far less side effects than chemo.  We don’t know if it will be effective or not, but at least it offers Jonathan some quality of life.  So today we learned Jonathan is approved to start the trial on Wednesday. 

The drug from Duke is a phase 2 trial drug called Keytruda.  Jonathan was approved to use it here in Spokane, and our oncologist can administer it.  This drug uses immunotherapy but no virus.  The Houston trial that we are still waiting to hear from uses the chicken pox virus.  The way this drug works to the best of my knowledge is the following:

The reason your body’s immune system does not try to kill cancer is because it is technically your own body.  It is an over production of your own cells.  But because it is still your own cells your immune system is told not to attack it.  This drug is designed to block the mechanism on the cancer cell that is telling your immune system that it isn’t foreign.  If this works effectively, your own immune system will begin to attack the cancer.  The side effects include pain and swelling at the site of the tumor, slight nausea and diarrhea for a couple days after the infusion.  There are some risks of liver toxicity, and adrenal side effects.  There are other uncommon ones, but nothing like chemo!  Jonathan will be getting an infusion of this drug every 21 days.  It is a 30 minute infusion that can happen at the doctor’s office.

Thank you to those of you who have been tirelessly praying for Jonathan to get accepted to use a trial immunotherapy drug.  This is potentially huge for him.  We would like to ask for more prayers.  We would love for this drug to work effectively for him.  We also are hoping for very few side effects.  Pain maybe will be welcomed, because typically that means it is working!  But little nausea etc. would be awesome.  Something that would allow Jonathan to have some quality of life while fighting this.  We hear most people breeze through this treatment.  And as always, God could give us a miracle and just take this from Jonathan.  I find myself stopping in my tracks and asking God to stop time.  I can’t think about months from now because I go to that bad place, but I find myself not wanting anymore tomorrows to come.  

Warning, This Get Graphic (By Jonathan)

I was watching a football game last weekend, if you can call it that.  The game was horrible, worst I have ever seen played in the NFL.  Even the officials looked like rookies out there.  Becky got several laughs out of my blurted tantrums hurled at the TV, which fall on deaf ears.  It came to an epic point on a forward pass that was dropped and ruled a fumble (which to everyone watching was a forward pass, literally everyone).  The refs had a mini conference decided it was a fumble and under review.  In slow motion the ball went forward 4 yards!!!  4 yards!  Not even close to a lateral fumble.  But the refs reviewed it anyway.  At some point during this, and this is an exact quote because Becky wrote it down after laughing, I said “I only have 6 months to live and you’re going to waste it on crappy calls like that?  Oh yeah good idea let’s review it, I have time!”.  It may be morbid a little but please laugh and find the humor.  Because we did, we laughed very hard about it later when Becky told me what I said.

Which leads me to time.  I don’t know if I have 6 months, 2 years, 5 years or more.  I know I am a very methodical calculated person who did very well in probability math class.  I actually had this Brainiac advanced calculus super-hot girl cheat off me that entire semester in college.  Some of you may know her (I married her). 

Here is what I know.  No one has ever survived beyond 5 years with my advanced metastatic sarcoma.  No one, period.  This counts the 1 year I have already had the disease.  At least not documented in any medical journals.  The recommended course of treatment now is chemo (ifos/etop regimen) until that one stops working.  Then try a new chemo, and another all while knowing they will work for a while but the cancer will spread.  The cancer now is smarter than the chemo, it morphs and grows.  The best case scenario here is chemo for years, in and out of the hospital feeling extremely lousy all the time.

Becky has been very careful in her blogs to protect some of my privacy as I fight through chemo.  I noticed yesterday she made a facebook post about my pain with no reference to what was actually happening.  I know there is a fine line between TMI and simply explaining to people what actually people experience while fighting this awful disease.  I’ve decided to tell you exactly what happens to me the week after getting chemo.  Becky has been such an open book that I feel like I’m doing you all a disservice by holding back.  So here goes.

I first start by getting chemo.  I’m nauseous, tired, all the stuff you already know about.  By the time I get home from the hospital the chemo has hit my brain.  I’m constantly dizzy and feel like our house is not even close to level.  Very weird feeling.  Then my white blood cell counts start to drop.  I get mouth sores which quickly spreads down my stomach and into my GI tract.  This has become the most excruciating thing I have ever experienced.  Unfortunately anything I could get in, has to come out.  I have what we thing to be numerous sores, possibly abscessed sores in my intestine.  There is no way to get medication to this area without putting me at a huge risk while having no immune system.  There are also no nerves in your intestine, they all connect out to your rectum, at which point you feel everything going on before the exit point.  The best way I can think to describe this feeling is like passing glass shards that are on fire.  This of course leads to an instant infection because now I have open sores where your body has more bacteria.  So then I get sick, really sick.  And this week I got to experience the absolute kicker.   I’m trying to make this “G” rated… from my bum to my male parts, the skin has begun to peel off.  It reminds me of when the boys had diaper rash.  This is by all means my definition of pure torture.  Unless at the hospital and on IV morphine, the pain is unbearable. 

I have decided this isn’t living.  I’m stuck in a prison cell (no conjugal visits) for 7-14 days a month and when I am home my body is to beat up or so suppressed I can’t even go for donuts with my kids. I have maybe a 7 day window each month that I can get out, play golf, go to the store or kids school, etc.   

But please understand not doing chemo and accepting the inevitable is not quitting.  I am exploring other options and will do those until the docs tell me I can’t.  I am simply choosing quality of life over quantity today.  We all have an expiration date I am just blessed to know mine is a lot sooner, which gives me the power to let go and have fun.  Live life now.  Because I have years of living to squeeze into a short period. 

I haven’t given up hope.  I pray that one of the trials works or at least gives me more time.  I truly think one will but accept the fact in may not.  As a probability person I am at least in the game now.  The cancer had a 100% advantage on me, the trials give me a chance to win as slim as it may be.  For the casino people out there I need a full house at the poker table.  Or a 5 on roulette.  But I get to be at the table now as bad as those odds may be. 

But this also bring a big struggle for me.  15 months ago, I was a normal guy who put on a tie every morning and got to work with his best friend.  We were the number 1 mortgage team in most of the state.  I came home every day, went on a few vacations a year and had a beautiful family, nice home etc.  Besides maybe a few interns at the bank I really didn’t have anyone that looked up to me as an inspiration (and by a few I mean probably none).  I enjoyed my success and just wanted to make my parents proud and raise my boys to be good people. 

Then July 2^nd 2014 happened.  My normal world turned over.  I wasn’t just a hoe-hum Joe any more.  Now I had cancer, my family had cancer.  The battle began.  Leg surgery, 9 months of chemo and I had won the battle.  Our story was spreading like wildfire and our non-profit grew to epic sizes in just months.  I began to hear things like you’re inspiration, a hero.  

One of the most difficult things to process was the compliments from people close to me.  A man I respect as a Godly strong father, blue collar hard worker said I was the toughest person he’s ever met, he works with lineman and electricians daily (truly tough men).  Or a swat trained fire fighter saying I’m a strong mother-f-ing warrior, he works with actual swat officers, police and firefighter (true warriors to me).  I don’t know why but that has always been a little difficult to hear especially from certain people who I thought were those things, but not me.

In my mind I wasn’t any of those I was just a guy who had cancer and wanted to help others.  Never walked down a street thinking I was tough, strong or a warrior.  Certainly no hero. 

I am beginning to accept those compliments and accolades.  Becky and I really have done some amazing work (Becky has, I’ve played a lot of golf).  But we have something to be proud of and be able to look back on.  And I truly did go through some of the worst moments and pains I can imagine to get there.

It’s often even harder to hear now because I’m choosing to stop recommended treatment.  Is that quitting, not fighting, not being tough or a warrior?  I know it isn’t in my heart, but it tears me up sometimes thinking all these people won’t feel the same.  But understand I’m not choosing to quit fighting, I’m just choosing to live.  I’m fighting my cancer by enjoying my minutes more each day (and kind of driving that super-hot Brainiac nuts in the process with all my cockamamie ideas).  But if you take anything away from me or my life remember we all have a certain number of minutes left.  Worry about living each of those minutes, truly living and loving those around you.  You don’t get to know when your minutes are out.

I also need to accept now the real toughness.  Not the Samson tough, tear a castle down, but the toughness to accept Gods power not our own.  Or Gideon’s warrior spirit in trusting God to send 99% of his troops home before battle.  Or Jesus for that matter, having the strength to walk right into Jerusalem knowing his fate just days away.  He could have turned around but had the strength and faith in God that there was something better waiting for him.  No more pain, sickness or death for everyone.  That’s tough!  

All that isn’t me, but it does refocus me to say there is toughness and warrior spirit outside of what our own minds limit us to.   I’m no longer a hoe-hum Joe raising his kids to be good people.  I want them to be more than that.  To be tough, strong warriors like there Dad.  I may not have all the time to do that but they have amazing men and women around them who will.

Still praying for that miracle every day and hoping I have more minutes.  But today I’m choosing to fight cancer by making the most of every minute I’m given.  

True Hope

Last time I wrote a blog Jonathan was developing an infection.  We were fresh out of the hospital and on our way right back in.  I sit down tonight from the hospital room looking out the window.  I’m beginning to enjoy watching the helicopters land on the roof of the hospital. 

After Jonathan’s last round of Chemotherapy, the seizure like chills he was experiencing were in fact an infection entering his blood stream.  Upon awaking that next morning, we went right into the ER.  Jonathan’s blood counts were practically nothing and he had developed a fever that was on the rise.  He had a crazy high pulse rate and was beginning to experience chest pain.  That ended up being a very long week.  Jonathan felt absolutely horrible.  At one point during that week we had a little scare and I watched a doctor stand over my husband and ask him, “If your heart stops, would you like us to resuscitate you?”  I breathed a breath of fresh air as he tells him “yes”.  However he followed that up with, “ask me again in 3 months though!”  He was in horrible pain and was diagnosed with Klebsiella.  (A Bacterial infection)  They began treating him right away and after platelet infusions, red blood cell infusions, tons of antibiotics, etc. He began to feel better.

During that week, Jonathan and I had some very real conversations.  We are currently living the life we will have while fighting cancer.  In the hospital, out of the hospital, back in the hospital, infection, excruciating pain, fear and oh yeah, we miss our kids like hell.  We are exhausted!  What kind of life is this?  And lets just be real, not negative, but real.  So if we do all of this, what are the chances?  At this point we know there has never been someone this far progressed with inoperable Osteosarcoma, live.  What is this doing to our family?  What is this doing to our children, during their most influential years?  My husband isn’t a quitter, but what he does do, is consider everything.  Every option.  Every outcome.  Every person.  I think for him to start considering other choices, he needed to be informed.  So one day during the doctor’s rounds, he asked the big question.  How long would he have if he stopped chemotherapy treatment? 

He enjoyed his week at home and made the most of every minute.  He helped me here and there with the prep for the auction.  He worked on Lego projects, took the kids to do a few fun things and then of course in seven days played 4 rounds of golf.  He frequently would just fall asleep on the couch.  I don’t know how he does it… He just can’t miss out on any moment because he is tired I guess.

Besides the conversation Jonathan and I had with the oncologist, Jax came in at a close second for the hardest conversation I’ve ever had to have.  As we drive to school I hear from the back seat “Mommy, how do guns kill you?”  So I thought I would be very factual and scientific with my answer.  “Well Jax, you know how a gun shoots out a bullet?  When the bullet hits a person it is going so fast that it goes through your skin and inside your body where you can’t see.  We have some very important things inside our body that helps keep us alive.  For example, you know when Dr. Raj listen to daddy’s heart?”  Jax interested says “yeah, he listens to daddy’s heart beat.”  “Yes Jax, If your heart is hit with a bullet it can’t beat.  And if it can’t beat it can’t pump blood all around our body.  We need blood to stay alive.  Dr. Raj also listens to daddy’s lungs.  Our lungs help us breath.  If a bullet hurts our lungs, you can’t breathe.  So that is how a gun can kill you.”  Jax sits there for a minute looking out the window as we sit at the first red light.  As we approach the next red light I hear him say “Mommy, is daddy’s cancer trying to hurt the insides of his body?”  My heart immediately dropped.  I was wondering when he was going to ask me this… I am not ready, but I answered his question.  “Yes Jax, Daddy’s bad guys are trying to hurt the inside of daddy’s body.”  He quickly fired back, “are they trying to kill daddy?”  I sort of began to cry as we pulled into the parking lot at school.  I put the car in part and turned around to look at him as I answered his question.  “Yes Jax, the bad guys inside daddy are trying to kill him.”  I think he was getting sad already and I hope I didn’t make this harder for him by crying myself.  So as he began to cry he asked me, “Is daddy going to die?”  I told him through my tears that I didn’t know.  By this time he was crying pretty hard and saying “I don’t want daddy to die!”  So I reached back and grabbed his hand and I grabbed Jude’s hand as Jude just sat there completely unsure of how he was feeling I think.  I told them “I don’t want daddy to die either.  But I know something for sure.  Daddy isn’t going to die today!  So we need to make sure daddy know we love him and give him as many snuggles as we can.”  Then Jax remembered something from the book I wrote him.  Once again he reminded us we need to be happy.  Those bad guys hate that.  So we gathered ourselves and walked into school holding hands the entire way.  Then I cried the entire drive home.  I don’t know if a mother could ever be ready to answer that question… But I know I wasn’t ready! 

Later that day Jonathan got a call from the people running the trial out of Duke that we had applied for.  It is also an immune therapy drug using T-Cells but instead of using a virus it is using a PD1 blocker.  This trial is in a stage 2 and is being used for Sarcoma cancers.  It isn’t specific to osteosarcoma, but it is showing some promise.  So we are planning on starting this trial drug after Jonathan has a set of scans to show us if the chemo is even doing anything at all.  We are also still waiting to hear back from Houston on that trial as well.  We know they have Jonathan’s pathology slides and are working on the testing. 

Last Saturday was our big day.  Jonathan hosted his first golf tournament, and I jumped into the deep end and attempted to throw a dinner and auction.  We set out to raise $70,000 to make some updates to the oncology floor at the hospital.  We were so taken back at the generosity of family, friends and community members that were so supportive of our cause.  Jonathan announced one of our goals for next year.  We are excited because we have already begun to help change Washington Law so that we can become a charitable pharmacy and help people have access to medications they may not have due to no insurance or medications insurance maybe wouldn’t cover.  This project is actually already underway…  Anyway, we are excited to say we exceeded our goal and think our numbers are going to come in over $100,000 raised. 

This Monday Jonathan checked back into the hospital to once again start chemo.  I think he may have actually been looking forward to getting some rest!  We worked on accounting stuff for Cancer Can’t, watched some movies, took a few walks and had a few naps.  It only takes a couple of days to get stir crazy though.  We are ready to be back home. 

Jonathan and I both really enjoyed listening to Sean speak last Saturday.  He is actually a really cool guy.  His goal, spread hope!  He has this quote (I’m just making up the numbers because I can’t remember…but you get the concept) “The human body will last 30 days without food.  It will last 6 days without water, but it will only last 30 seconds without hope.  Because without hope we have nothing.”  I think for all people hope is essential to life.  We have to know that things can get better.  I could easily see how anyone in our position could begin to feel hopeless.  The answer to Jonathan’s question was this: If he stops all treatment he may have 6-8 months.  2-3 of which would have some quality of life.  We hope that a T Cell Trial works for him and he can be a first for a cure.  But mostly the doctor is hoping it will give him 2-3 years without chemo side effects.  He can keep trying chemo and maybe make it 2 years doing that. 

I find myself listening to a sermon on hope that was done a few weeks ago.  I seem to listen to it over and over.  It is my reminder that the hope for Jonathan and I may be for God to give us a miracle.  I mean we’ve given him one heck of a platform… my last blog had 5,000 views.  (Like he needs a platform)  And I will never stop praying for that miracle.  But maybe hope isn’t just that miracle, But our true hope is not of this world.  1 Peter 1:6-9 ⁶ In all this you greatly rejoice, though now for a little while you may have had to suffer grief in all kinds of trials. ⁷ These have come so that the proven genuineness of your faith—of greater worth than gold, which perishes even though refined by fire—may result in praise, glory and honor when Jesus Christ is revealed. ⁸ Though you have not seen him, you love him; and even though you do not see him now, you believe in him and are filled with an inexpressible and glorious joy, ⁹ for you are receiving the end result of your faith, the salvation of your souls.

This scripture is such a huge reminder of what true hope is.  Although we are sad a lot, we are also able to find joy in a circumstance I would never choose.  It is so interesting because in this sermon the pastor quoted that quote that I never understood.  ”It was the best of times, and it was the worst of times.”  I never knew how that was possible until now.  The other day as I was making breakfast, Jonathan grabbed me in the kitchen and was having me dance with him as he sang to me.  Jude yells over from the table “Dad, are you trying to marry mom?”  So I was telling a friend about how I feel so loved by him.  Even though we are sad, we are also so happy.  And she reminded me that there are people that may live their entire life, married, single or otherwise, and although our time might be short.  Most will never know a love like ours.  So even if I don’t get 50 years with him, I will always have that!

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. 

Lets Play a Game!

Some of you may remember the game “would you rather?”   I think most of us probably played the game when we were in high school and it was typically pretty immature and looked something like this:  Would you rather slide down a razor blade into a pool of rubbing alcohol, OR French kiss the ugliest boy in your history class that is sporting a face full of warts?  And of course your friends made you pick one…

Well I would like to personally welcome you to the world’s worst real life game of Would You Rather!  Before I give you your selection choices, let me explain a bit more about the prognosis.  Oh and don’t forget, this isn’t a dream and you do actually have to pick one!  (well at least we do…)

 

Diagnosis: Metastatic Osteosarcoma (also known as stage 4).  After completing short of 1 year of chemo therapy and 1 major surgery.  Jonathan has a second tumor that has been found in both the pelvis bone and the soft tissue surrounding that bone.  It appears to be 1 tumor about 3 cm in size located at the bottom of his pelvis on that bone where you sit.  Over the last 3 months I had so many people ask if Jonathan was in remission, or I would hear people say he was in remission.  Eventually I just stopped correcting the misnomer.  With this type of cancer, they can never tell you if you are cancer free.  They only know if you have tumors or not.  Because Jonathan has developed a second tumor, they can assume the cancer is all through his entire body… There is just no way to detect that for sure.  But we can confirm the chemotherapy didn’t work since there is a subsequent tumor.  Therefore he is declared stage 4.  Statistics say now that he has roughly a 5% - 10% chance to live for up to 5 more years.  Those 5 years will be spent on random chemotherapy the majority of the time, as tumor after tumor develop until we can no longer cut them out.  I’m not trying to sound grim, but want to be honest about the severity of what we are facing. 

Last Wednesday Jonathan did a PET scan to confirm that there is only 1 tumor at this time and it is in his left pelvis.  (The opposite side as the other tumor which was in his right femur)  On Thursday the surgeon in Spokane did a biopsy of the tumor to confirm our suspicion.  During surgery he looked at the soft tissue tumor under the microscope to confirm that it was the osteosarcoma.  So with the prelim results we know enough… Now this biopsy surgery isn’t your typical minimally invasive poke a needle in type of surgery.  Jonathan has about a 12” incision down his entire butt cheek and down his hip.  He was given a couple days to recover before we had to get in the car and travel to Seattle to see our team of doctors at the Seattle Cancer Care Alliance. 

Alright, now you are informed… Ready to play?

Option 1: This is the recommended course of action by both the surgical oncologist and the medical oncologist.  Jonathan would be put on a completely new type of chemotherapy.  Each treatment cycle would be 3 weeks consisting of a 5 day stay in the hospital followed by a 2 week stay at home.  He would experience nausea, mouth sores, severe hallucinations, neutropenia, anemia, hair loss… no need to continue, I think you get the idea.  He would do 2 to 4 cycles of treatment.  Depending on the success would determine when he would have surgery.  Surgery would include soft tissue tumor removal along with a portion of his pelvis.  Depending on the spread of the tumor, possibly a hip replacement as well.  During surgery they may do surgical radiation.  After surgery he would do possibly proton therapy radiation, as well as neutron therapy radiation.  Then 4 more cycles of chemotherapy.  This option has a 5% to 10% success rate of no return of the cancer. 

Option 2: Clinical trial.  There is a phase 1 clinical trial at Baylor University in Texas, and a phase 2 clinical trial at Duke in North Carolina.  First Jonathan would need to qualify and be accepted into the trial.  The concept behind the trials are T-Cell therapy combined with a Virus.  They do not share the success statistics, and do not know as much about the side effects.  You are essentially a lab rat!  We do know that T-Cell therapy combined with the HIV virus has essentially become the cure for leukemia.  This concept is very promising, but is very experimental at this point.  They would leave the tumor in to monitor the success of the treatment.  (We do know that there is a 0% success in treating osteosarcoma if you do not remove the tumors)  So I would assume at some point you would still have the surgery and then continue the T-Cell treatment after.  The same concept as the chemotherapy.  If your tumor is growing and you are not responding to treatment, they will kick you out of the study and you would return home at which point you would go back on chemotherapy, or find another trial.  There are no statistics available for this option.  We are going to have our local oncologist, Dr. Raj, look into these options way more extensively this week.

Risks – If you choose option #2, there is a potential that the tumor would become too big to do just a hip replacement.  If the treatment did not work and the tumor grew quickly, It may result in an amputation of his leg and pelvis.  If you choose option #1, the tumors could continue to grow and would potentially reach a point where you would not qualify for the trials.

Benefits – If you choose option #1, it might just work, well 5% - 10%.  The chemotherapy can be done at home here in Spokane.  If it doesn’t work, we can try a trial if it isn’t too far progressed, and maybe the trial will be more advanced to a point of a phase 3 and would have more information on success rates.  If you choose option #2, it might just work!  You wouldn’t have to suffer through chemotherapy.  The tumor would shrink so much that the surgery would be less invasive.  If it doesn’t work, there is always chemotherapy…

So there you have it!  What would you rather? 

I’ve had so many people tell me they can’t imagine what we are going through… and I would never want anyone I know to experience this.  There are so many emotions or thoughts that you go through.  I remember when I wrote the last blog, I read a post one of my cousin’s wrote when he shared the blog.  He called Jon a warrior.  I instantly started crying when I saw it because I’m not ready to go back to war.  In fact I would rather he go to real war… his odds are probably better dodging real bullets.  I can’t seem to pick myself up off the ground and gather myself enough to do this all over again.  I question if I’m being negative because I’m trying to cope with the reality of the 90% chance instead of being determined that will never happen.  I feel so alone… no one knows what to say to us, or what this really feels like.  Well except Jonathan’s mom in which case we sit on the phone crying screaming the F word at the top of our lungs. 

This week our goal is to reach out to our therapist at cancer care NW.  I also would assume there is grief counseling at our church, we are going to look into that.  I think Jax is at a point where he should begin doing counseling.  We know we can’t do this on our own.  Even though we feel so alone, we will need our family and friends more than ever.  We need to stay active to fight off depression with exercise and a healthy diet.  We are going to pick ourselves up of the floor and fight this... I just think the more you get hit, the harder it gets to get back up!

We also keep getting the question, “how is your faith?”  I don’t think either of us is angry about this.  I know for a few days, I didn’t pray… I had too many questions for God and I was so confused I didn’t know what to say.  I think mostly I’m struggling with the fact that his plan isn’t my plan!  I know God knows exactly how I feel… His son unrightfully suffered too.  I’m sure he felt the same pain we are feeling now.  His heart is breaking too…  But You know what else, his son unrightfully died!  Why couldn’t there have been a better plan?  The plan was a perfect sacrifice… And it saved everyone!  I don’t know what the plan is for Jonathan, but I know the reality isn’t always candy and rainbows!  I cried uncontrollably while watching the passion of the Christ, and I still had no idea what this really feels like.  I guess I feel like Abraham leading Isaak up the mountain.  I’m happy because God’s plan worked out for Abraham and Isaak.  So I do know he can change this in a second, I 100% trust that!  I’m just confused why we are even being asked to head up the mountain AGAIN… But after the last year, I know how much good came from such a horrible experience.  So I know God has a plan again.  I just wish his plan was the same as mine!