One down, ? to go

Can I tell you how tired we are over here? One of us more than the other, but sleepy nonetheless.  We had to leave the house at 5:45 this morning, which you know neither of us are good at.  So shortly we will be off to bed! :)

Today we completed all of the paperwork to get admitted as a patient, met with his new doctor, had a bone marrow biopsy and aspiration, and then some x-rays.  It was quite a day!  We started the day with high spirits, and ended it rather heartbroken.  Not for us, but just for all of the hurting people we saw today. 

We are very happy with Josh's new doctor.  He was extremely soothing and just exuded confidence and knowledge.  He explained CML so perfectly as well as all the treatment options.  Josh just told me that I absolutely must reference that he was just like Antonio Banderas.  He is from Spain and is pretty much just what you might imagine - so European cool with his hip clothes.  Oh, and his accent.  At the end of our conversation he just stood up and then said, "Lay down, I want to touch your belly."  At that moment we could just not control our laughter.  You just have to imagine it with Antonio saying it.  So funny!  He was also witty and just generally easy going.  So we are super pleased with him.

As far as the cancer goes, he was hesitant to begin treatment without having a definite diagnosis.  Evidently the only 100% diagnosis of CML can come after finding the Philadelphia chromosome in the bone marrow.  So we have to wait for those labs to be done before they will begin treatment.  Dr. Quintas said not to worry, since he has had it for some time now already.  So we have an appointment next Wednesday to come back and get the results as well as set up a treatment plan.  It seems strange, but we are praying that Josh really does have CML.  If he does not, then he definitely has some other type of leukemia, which are more difficult to treat.

We are excited that he thinks Josh will be able to get into a clinical trial they have going on at the center.  He would either be getting Tasigna or the newest med which he says is even better than Tasigna.  We are excited!  And so very  thankful that the technology has come so far in such a short time.  He told us that 10 years ago half his patients were dead 4 years after diagnosis. So now the 95% success rate in such a short time is truly amazing.  They say this new drug will have even better results. 

The bad part to our day was Josh's bone marrow aspiration.  He was already extremely nervous about it, and if you know Josh you know he can't handle pain.  He even told the nurse as they took him off, "I'm a really big sissy."  I think the straw that broke the camel's back was that they wouldn't let me go back with him.  And they didn't tell us that till 20 seconds before they took him back, so I don't think that helped any.  He was gone for close to an hour and when he came out I immediately knew it didn't go well.  The man looked like he had run a marathon, completely drenched in sweat.  He had to change clothes he had sweated through his jeans so much.  Absolutely broke my heart.  He said that they told him it would feel like pressure, but he equated it more to the pressure you might feel with a building crushing your hips.  They told us that his blood is so incredibly thick right now due to the massive amounts of cancer cells and platelets sticking together, so maybe that is why it was more difficult.  Please pray Josh doesn't have to go through this again till for another full year.

Our day ended with a non-traumatic set of x-rays.  These of course were no big deal, but I think it might have been the hardest part of our day.  There was a man sitting in front of us with his son who was waiting to be x-rayed.  The dad was about 50 or so, and his son must have been just a little over 20.  The boy was not in good shape and was sitting in a hospital gown in a wheelchair.  The dad walked off for a sec and then came back with a blanket in his arms, and tenderly wrapped it around his son, tucking it in behind his neck.  It was so quiet, so gentle, so loving.  Then he put his big, rough, hand on the back of the boy's head and neck, rubbed it back and forth.  Just like we do with our boys all the time.  All I could think was that this grown man is still his little boy.  I looked over at Josh to nudge him to watch, only to find Josh staring with tears in his eyes.  So we both melted down.  Everything about cancer is just so wrong.  No dad should have to watch his son dwindle away. 

It seem so strange the things that have affected us the most.  It is really surreal how our life has completely stopped, while everybody elses is moving ahead at full speed.  Haircuts, dinners, movies, work.  And we are here just waiting.  Really the strangest feeling I have ever experienced.  Can't wait for things to get moving next week.