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.