Our "Romantic" Pre Op week

Last week was a whirl wind as we learned some good news for a change and then were quickly planning our rather long stay in Seattle.  We found out Jonathan's surgery would be on a Thursday and unfortunetly his preop would be on Monday.  We contemplated making the drive back and forth, but with some encouragement from my mom we decided to make an attempt at a romantic couple of days before Jonathan was in really rough shape.

We booked a hotel down town Seattle, and made some plans with friends.  We were ready for our trip.  So I busted Jonathan out of the Hospital in spokane on Saturday morning.  We spent the day doing laundry and packing ourselves and the kids for the next few weeks.  Jonathan wasn't feeling super great so he kind of vegged for the day and his mom and I got everything ready.  Sunday morning we got up and decided we wanted to take the boys out to the pumpkin patch as we have done that every year since Jax was born.  So we figured this was  our last chance.  Jonathan had a pretty bad head ache and wasn't really feeling up for our adventure, but as usual he put a smile on his face and made the best of it.

After our adventure with the kids, Jonathan and I hit the road to get on our way to Seattle.  He was feeling worse as the day progressed and actually slept most of the way as I drove.  He said his neck was sore and his head was just killing him.  Once we got to the hotel we checked in and Jonathan went right to bed.  Made me turn off all the lights and was feeling so quilty that I was going out for a romantic dinner for one.  I ran him a warm bath before I left and was hoping that may help a little.  Upon returning to the hotel Jonathan seemed really down.  He didn't feel much better and I could tell he was discouraged he felt so crappy.  (I think he was hoping to to get lucky before he was really out of commission so getting sick really was not what he wanted)

The next morning we were up early, I drug him out of bed to get to our doctors apt by 7:30.  He did his pre op appointment and pleaded with the doctors to do something about his head ache.  They thought maybe he had an ear infection or something so they wrote up a scrip for antibiotics.  We went right back to the hotel and Jonathan went right back to bed.  I decided to go walk around and let him have a quiet room to sleep.  I returned about an hour an a half later to him throwing up!  I immediatly called Dr. Raj our medical oncologist in spokane.  After going over his symptoms, He was worried about meningitis and told me to take him to the ER right away.

Jonathan's pain in his head was the worse pain he has ever felt.  He was flat miserable... as the doctors would ask questions, be couldn't even talk.  He would point to me as if he wanted me to give them answers.  The only questions he was answering was pain level.  I began to ask for medications by name as they began to examin him.  Never did I think in a million years would I know what I know now.  The nurses told us on day one that we get this way... more informed about medications than you would ever want to be.


The ER doctor agreed with Dr. Raj and performed a spinal tap.  They ran dilaudid, this is synthetic morphine that is 10x stronger I guess, and it wasn't touching the pain.  I asked for Adivan for the nausea which typically knocks Jonathan out.  I figure maybe he could sleep through it.  It did help some but he was still in so much pain he was till vomiting sporadically.  They eventually admitted him, and sent us upstairs to a room.  He contintued to struggle through the night with pain but seemed to be managing the nausea.  But by the next morning the pain was still horrible and the nausea was back.  I was exhausted as I didn't sleep at all that night and was up again helping him change puke buckets.  What a releif when his mom walked through the door.

I was able to go back to the hotel, lay down for an hour (even though I was so worried I couldn't sleep...but I tried).  I took a shower and packed up the room.  So much for our romantic 3 nights!  When I got back to the hospital, my older sister had arrived and got me some food.  Slowly as the day went by, Jonathan slowly improved.  The oncology team eventually eliminated enough of the possible scenarios that they diagnosed him with Aseptic meningitis.  This is basically meningitis caused from the chemotherapy.  On Wednesday he received 14,000 milligrams of high dose methotrexate... Anyone that knows anything about chemo will tell you how high a dose that is.  But the methotrexate is the chemo that kills the "floaters" of the cancer.  So we wanted that super high before surgery, but not so high that it poisoned him.  Guess we found his limit.

Now that we confirmed he doesn't have an infection, the surgeon agreed to continue with surgery.  So today Jonathan is still improving.  He is eating and even watching some tv between naps.  We are ready for the surgery and so glad this hick up didn't change our plans to get this stupid tumor out of his leg.  This is a very big surgery and we know there are serious risks and pray Jonathan still comes out with 2 legs.

I saw this quote on a sign while I was at greenbluff:  "Life isn't about waiting for the storm to pass, It's about learning to dance in the rain."  I feel like lately we are in the middle of the storm.  More like a hurricane.  But as I watched a video of Jax ride a bike for the first time yesterday and see how excited he was, even if just for those 2 minutes, I was dancing!  We are trying so hard to revel in whatever good we can find so we won't get caught up in the storm.

Please continue to pray for him and our family as these next few days are going to be very hard.  I will try to update you all on surgery as soon as I can.