Beyond bittersweet

Is there a word that means "bittersweet" times a thousand?? 

Everything about today was beyond bittersweet because Ty had the best day in months upon months, yet we have to kick him right back down by starting up chemo again later this week. 

Just look at my little supermodel up there.  He was wide eyed and happy all day.  He looks a little melancholy above, but he is actually just posing for the camera :)  Today was the first day since I can remember that he didn't require ANY pain or nausea meds.  On Saturday we took him off his steroids completely, and he is getting stronger in his arms and legs as a result (the withdrawal made him sick all weekend, but today he was feeling terrific and didn't throw up at all).  He has some minor pain in his arms and legs, but I welcome it because it means his muscles are being put to work.  Now we just need to build up his appetite.  I can't help but watch him getting better and think, how can he still have cancer??? How is it possible that his disease is spreading when he is singing and laughing out loud like this???

We took the boys to the park this afternoon to picnic and fly kites.  It was the most beautiful day and Ty laughed at me over and over again as I tried to get the kite in the air and when all of our food was blown off the table from the wind.  It really was funny; nothing ever works out like I plan it to.  I gave him so many kisses today, he is probably so sick of me smothering him.  He was singing in the car all day long.  Today is my Dad's 70th birthday (happy birthday Dad! - we love you more than you can imagine) and the song of the day was "Happy Birthday to Pop-Pop."  Ty also convinced me that we needed to go out to buy Pop-Pop a present, and that he would like a new toy, of course.  Here they are together just last year.  Hope he wanted a rainbow colored collection of bouncy balls for his big day!  That's what seven decades will get ya! 

Ty also had a real bath today, and it was long overdue.  He fought me tooth and nail, but afterward I could tell he felt soooo good.  Who doesn't feel great after a nice, long bath?  When I dried his hair, I even noticed that his curls are just beginning to show again - check them out in the picture below!  I was so excited.  Of course, that joy was quickly stolen from me knowing how short-lived this is with chemo around the corner.  It's just so unfair.  I just want him to be normal again... To get back on his feet... To go out in public and not look like "the sick kid" anymore... I just want him to be all better.

 
Alas, his doctors don't want to wait another day before starting him on treatment - and neither do we.  The rate at which his new tumors are growing (as seen in Friday's scan) puts him at too much risk to delay treatment in order to replace his shunt, so instead we are planning to begin treatment on Thursday while keeping Ty on prophylactic antibiotics with the hope to keep any infection that is harbored in his shunt under control when his white blood cell/neutrophil counts drop.  There may be an alternative plan to replace the shunt during his chemotherapy, but it is complicated so I will save my breath until I know more and can explain it better. 

The bottom line is, Ty is going to get really sick again. Before he even had a chance to enjoy feeling better after all this time. He is still so weak and so insecure to start off with, I am crushed by the thought of it.  My poor baby.  Please, God, let this work.  Save my baby boy.   

XOXO.  With all of our love to you all.