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!