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!

Round 2

Last time I wrote a blog I was letting everyone know Jonathan’s scan was clear.  We were off to celebrate and make up for time lost by traveling with the kids.  We went to the Oregon coast, then off to Hawaii.  We’ve taken the kids golfing and are at the pool playing and enjoying every moment of summer together as a family.  We have truly had a wonderful 3 months!  But sadly, 3 months is all we will be getting…

On our drive home from the Oregon coast, Jonathan started to get pretty uncomfortable sitting in the car.  His hips were hurting and it slowly has gotten worse.  In fact, he can’t even ride in my car now, sitting in that particular position is excruciating to him.  So when we went in for his 3 month scan in June, we were pretty nervous.  I think we would be less nervous if he wasn’t having pain anywhere.  We got the news that his scans were clear.  That tiny spot that once showed up on his very first PET scan a year ago was back again, but such a small absorption rate that it is nothing.  (Just like the first time we explored it)  But since he was having pain and it isn’t cancer, we need to figure out what is going on.  So the Dr. ordered an MRI of his pelvis/hip looking for meniscus issues or maybe a stress fracture from walking on that one leg only for the last year. 

So about a month later… this last Thursday, Jonathan went in for his MRI.  Upon leaving the MRI, he asked for his disk of images so we could look at them at home.  The computer kept freezing so the receptionist asked if he could come back on Friday.  So he did… Then he took the kids to swimming lessons.  Jax got stung by a bee of course that day.  So instead of playing golf after swimming, they went right home so Jax could relax and watch a movie.  I decided to go out for a pedicure with a friend and get some work done for the non-profit while the boys were supposed to be golfing.  So once Jonathan got the boys settled on the couch watching their movie, he plugged the disc into the computer to see if he could see anything… Unfortunately, what he saw is horrifying.

It looks like a giant white spot on the left groin area of his pelvis… the same looking white spot that was on his leg.  He immediately called the oncology office to ask if they have looked at the scans.  The Dr. pulled them up and confirmed what he was looking at wasn’t good.  He said he will need to have a surgery to biopsy it to confirm what we think it is, and get another PET scan. 

Jonathan then calmly called me and told me Jax got stung and I should probably just come home.  So I did… As I walked into the house, the boys are quietly watching a movie and I turn to see Jonathan sitting on our chair in the office.  He has tears rolling down his face and I can see his feet tapping anxiously.  He looked at me and I knew!  I dropped everything I had in my hands to the floor and started screaming there was a spot wasn’t there?  At first I was angry… How could they have missed this just a month ago it was clear!?  Then I wanted to see the scans myself… to my horror it was just as big as the last one!  Well the only problem is, it doesn’t matter at all how big it is, anything, any tiny spot means the chemo didn’t work.  The only way they know how to treat Osteosarcoma, DIDN’T WORK! 

By this time I had fallen to the floor sobbing, we both were… I can’t tell you how long I sat there crying probably harder, no like way harder, then I cried 1 year ago.  At one point I don’t think I was breathing and then my face and arms started going numb.  That was all I could get out to Jonathan as he tries to decide if he should be taking me to the hospital for a change.  As his concern moved to my wellbeing, I think some sort of brain function returned and I started telling myself out loud “Breathe, you have to Breathe.”

Once I was coherent, the questions started coming.  Word for word what did the Dr say?  OK so we need a biopsy, give me the phone, I’m called Chappie NOW!  Somehow Dr. Chappie answered his phone, and I told him what was happening.  He told me his surgeries are on Thursday and he will try to fit him in.  Call at 8am Monday morning and we will get it figured out!  Then he asked if there was anything on his lungs… and in my frustration I said 1 month ago there wasn’t anything on his pelvis, so I have no flipping clue if this is to his lungs yet.  It grew to the size of a golf ball in a month!  He says, well if it isn’t in his lungs yet, that’s some sort of good news… Call me first thing Monday.  And we hung up. 

Next Surgeon, there is the local one here in Spokane, Dr. Howlett.  Chappie trained him and well he caught this entire mess in the first place.  Lets call him… So we got an appointment on Tuesday.  Not sure it makes much of a difference who does the biopsy, and if a day or 2 matter in the time frame.  Ultimately we know what it is… but they will want the biopsy to begin genetic testing on. 

I began to call family, as Jonathan sat on the computer researching.  I didn’t have to research… I knew the odds were now very much not in our favor.  I knew the 2 oncologist both answered my question totally different when I asked “do you have a plan if this comes back?”  And the answer is, they don’t know what to do, and are each guessing.  There is no standard of treatment anymore.  One proposed a different types of chemo that shows maybe some promise.  (AKA buy more time, time that we know is sick and miserable.  AND pray for a miracle.)  The other suggested medical trials.  No statistical proof of anything, a long shot!   Now, we have no good options!

Jonathan found a T Cell trial at Duke and Penn State.  So we will see what the doctors tell us, and if we need to pick up and move to North Carolina.  But here is what Jonathan told me.  He isn’t quitting!  He has way too much to live for, and hey, his odds are better than Sean’s.  (The speaker we have coming to the dinner and auction)  So his positive spirit is in there… it is just really hard to be positive YET!  I know we will formulate a plan and we will go at this all over again, but it is hard to be positive when you are so devastated at the same time.

So we put on a happy face, let Jax have his friend come spend the night, then packed a swim suite, tooth brush and pajamas and hit the road for Priest Lake first thing the next morning.  We promised the kids daddy would take them to the lake, they love it here (so do we), and how in the world were we going to tell them?  So tonight we sat down around the table for dinner and Jonathan told them that daddy thinks the bad guys are back.  Jax got mad sort of and was immediately frustrated.  I told him I was really sad and it was ok for him to be sad.  So he then started crying, but just for a minute before he reminded us that the bad guys don’t like it if we are happy.  So we need to try to be happy!  Jude kind of seemed confused, and just sat there quite.  He then started asking questions, Does this mean we have to go to the hospital all the time AGAIN?  Is daddy going to be sick AGAIN?  Jax asked if we are moving to Florida… So we did tell them we very likely will have to move.  So they are working on processing this and are trying to be brave.  As brave as any 3 & 5 year old could be!

We spent the weekend hiding from world and making the most of the time we all have together.  Jax caught a fish off the dock, the boys got Jonathan on the tube for a nice little ride and we tried to enjoy our most favorite place the best we could.  We even mustered up the courage to travel across the lake to have a drink with some friends.  We both know from last time it is better to crawl out of your hole and face people.  Allow yourself to be encouraged, but it just takes every ounce you have to try to be normal for a minute.  But once we can do that, it does feel better…

 

So as we prepare to head out the door for church, I’m once again going to ask for prayer.  We are virtually living a nightmare right now.  Maybe by some miracle this spot isn’t what we think it is.  But I will update the blog again when we know more later this week.