Wednesday, August 22, 2012

Up all night

We had a good day at the hospital today.  It was very long, as usual, but Ty was feeling good - and he had a bed today which always helps because he is just that much more comfortable.

In response to his increasing head pain, the team ordered a quick CT to make sure his ventricles aren't enlarged and to look for any potential sides of a brain bleed.  The scan looked fine, so that's good, but of course it leaves us wondering why.   It's still concerning to all of us.  We are going to increase his neurontin to see if that helps at all (especially because Ty is experiencing pain in his feet which is likely neuropathic).  We may also end up pushing up his next scheduled MRI if it worsens.  Right now he is scheduled for early September, but we will likely do it sooner.

The real update for today lies in the fact that Ty and I are still awake, sitting on the couch at 2:30 in the morning.  He hasn't slept a wink and he is hallucinating.  Let me explain why. 

We had a consultation with the integrative medicine doctor at Sloan Kettering today.  We wanted to discuss with him the various herbal therapies, diets and supplements that we have read about over the past year to get a better understanding of what we can and cannot try with Ty.  The large majority of the herbs and supplements are contra indicative of his current chemotherapy regimen so they are out of the question (meaning, they may work well to keep his "good" cells strong, but they are also good for cancer cells and they can increase or decrease the effect of his current medications).  But we did walk away with some new supplements we will add to his shakes, and we have a better understanding of what we should and should not be experimenting with.  If you are interested, click here for a great resource on all sorts of herbs, vitamins and supplements and how they might interact with various treatment protocols. 

During this conversation, we discussed alternative options to help Ty sleep at night because he is just so restless.  We tried something new tonight because it is supposed to be safer, but it has had the complete opposite effect - I haven't seen him this restless in ages.  We were warned it was a possibility, like the kids who can't take Benadryl because it makes them wired, but never imagined it could be as bad as this! Yikes!  Poor Ty is out of his mind.  He has been WIDE AWAKE for hours.  He is so confused, the poor little guy, asking me things like "where are we?" and "where are we gonna go?" for the past 7 hours.  He is hallucinating, too, which has me so upset.  He told me "Mama!  Look!  There are things jumping on that picture!" and he also thought he saw ants on his grapes.  He tells me he wants to lay down when he is already laying down, and that he wants to put his arms around me when they already are.  At least he is mostly good humored about all of this.  I, on the other hand, might lose my mind soon.  Of course, this medication will be added to the "do not use - EVER" list. 

No news is good news on the pain front - at least for now.  I would write more, but I am just too tired to think :)  More tomorrow.  Thank you for always loving Ty.  XOXO and goodnight.  Fingers crossed for at least three solid hours of sleep tonight!


  1. goodness I hope the effects of that stuff wear off soon and that you both were able to get a little bit of sleep. Glad the tests look ok and I wish they could figure out what's causing Ty's headaches :( Always wishing you guys the best - SuperTy!!!

  2. Oh lord that is terrible.. The same thing happens to me.. If I take Dayquil I am sound asleep..nitequil.. wide awake.. diet pill that everyone says gives them ton of energy and I am fall sound asleep for 12-14 hours.. hope it wore off.. it is the worst feeling.. the worst part is he can sleep all day today and you can't.. I don't know how you do it
    Hope you get a little relief today so you can take a nap
    Thinking of you guys always and sending prayers

  3. Have you or can you try melatonin? It is OTC. I have really extreme reactions to medications so would never consider anything stronger than benadryl to help with sleep but melatonin works well for me.

  4. I hope you got to sleep and that Ty feels better!