Kryptonite

SuperTy is not feeling very super.  We went to the hospital today to discuss radiation therapy and ended up overnite because he is just so weak.  His headpain is very significant, his nausea still isn't under control, his speech has been so compromised that I can barely understand what he's trying to tell me (I have to hold up pictures and ask him to point), he still can't move his legs and he can barely move his arms.  My little superhero hasn't lost his sense of humor, though... he just pointed and told Lou he was "chopped liver" because he had to sleep on the chair next to us while I get to sleep in his bed.  He grinned from ear to ear.  I love him so much.

The doctor's may as well have told us that he was drained by kryptonite because they otherwise have NO idea why Ty is so weak.  We went for a CT scan and a series of x-rays to make sure his shunt is functioning properly, and everything looked as it should.  It doesn't look like there have been any changes at the tumor site (THANK YOU, GOD) and his bloodwork looks fine.  So... we will be getting an MRI tomorrow.  Please pray that it doesn't show us anything different pertaining to the tumor.  The doctor's suspect that perhaps his brainstem is swelling as it decompresses and causing some of these side-effects.  The weakness in his arms and legs is a result of acute steroid myopathy which occurred a few weeks ago after our repeat visits to Urgent Care. 

When high doses of steroids are given, it can have some devastating side effects, especially in the upper arms and thighs.  Don't get me wrong, the steroids saved Ty's life on more than one occasion in January, but we have been trying to taper them ever since so he can begin to improve physically.  I have a feeling that we will need to increase that dose again if his current problems are related to swelling in the brainstem.  So frustrating. In the long run, though, I won't care if Ty can't walk for several more weeks... even months... as long as he survives this nightmare in the end. 

When new nurses or doctors review his file, they always express shock when they see all that he has been through over the last six months (six months!!!).  Knowing that Ty has charged on despite so many bumps in the road makes me even more confident that he will get through this.  He is a blessed little boy with an iron fist.  Thank you for following him on this journey. 

I have mentioned before that sometimes I let off steam when I am alone in my car by screaming my head off and crying a good cry.  I usually yell at the cancer, "Leave him ALONE!!!  Get the f___ away from my baby!!!" and it helps me to feel better.  I haven't had any time alone in the car for weeks and I can actually feel the need to yell and scream, but I should probably just go to the gym or something instead.  I must look like a complete crazy person to anyone who pulls up alongside me :) 

I was so happy when I walked by one of the orange rooms on the 9th floor today because a little girl who had been here since October wasn't there anymore.  Her name is Casey.  Of course my heart then immediately sank worrying that perhaps she had taken a turn for the worse.  Later this evening I took a walk around the hall and I saw that she was in a different room, her pictures were taped to the door. That released me from the worry that had been weighing on my mind since I passed her room earlier, but now my heart is filled with pain for her family.  Just when I was reflecting on how many nights I've spent in these rooms, I realized that they have been here for much, much longer.  These poor babies.  They have such an incredible spirit to be able to endure all of this and still fight for their lives.  Each and every one of these kids is an inspiration.  God bless them. 

YOU CAN BE THE MATCH
That reminds me.  Among the most common childhood cancers are leukemia and lymphoma. So many of the children I see here day in and day out are waiting for a bone marrow transplant.  Please consider visiting http://www.bethematch.org/.  You can easily register online, they will send you a kit with cotton swabs for your cheeks, and you can mail it back in a pre-paid envelope.  I did this a couple of months ago and it was so easy.  You have all done so much for me and my family, this is just a small way in which I wanted to pay it forward.  I had never heard of this before I became a "cancer mom" and I just wanted to share information about this amazing organization.  XOXO.