Tyson's Brave Battalion

Tyson's Brave Battalion
Things don't go wrong and break your heart so you can become bitter and give up. They happen to break you down and build you up so you can be all that you were intended to be.” ~Samuel Johnson

Friday, February 24, 2012

Looking Forward to Next Week

Ty seems to be doing a little better this morning than he has the last couple of days.  He's still just lying on the couch, but he is letting me get some things done this morning instead of wanting me to just stay on the couch with him.  He won't talk cause it hurts to move his lips.  Apparently the 'rash' I thought he was getting from the Septra was actually mouth sores (inside and out) from the methotrexate, the 10 pills he was taking on Thursdays.  The sores were showing up around Mondays so I thought they were from Septra which he takes on Monday and Tuesday (I didn't even think to look inside his mouth since I thought it was a rash).  You can see a couple of leftover dots from the 'rash'.  He has a sore in the corners of his lips and a big split in the middle and a sore on the tip of his tongue that are quite painful, he won't let me look in his mouth so I don't know if there are more. He eats a little here and there but always ends up crying for the magic mouthwash (maalox and benadryl) and we squirt a little on his lips and tongue.  The good thing about that is he always wants a drink after that so I'm not too worried about deydration right now.
He is off oral chemo for a couple of weeks so I'm glad he gets a chance to recover.  Because his counts dropped he will only be on half dose of chemo when he goes back on it... which means only 5 MTX pills on Thursdays instead of 10 yay!! (hopefully that will mean less mouth sores) And then 1/2 of his daily pill 6mp.  I looked up the normal dosage of MTX for an adult. They take it for Rheumatoid Arthritis.  Normal dosage for an adult (who weighs about 100lbs more than Ty) is 7.5mg per week, with a max of 30mg per week.  When Ty was taking 10 pills he was taking 25mg.  It is amazing how much their little bodies can handle.  During weeks like this we have to remind ourselves that the side effects of his daily poison is worth it cause it is poisoning the Leukemia cells too...and since it isn't normal to feel so crummy on maintenance, we think things will improve and we won't have too many weeks like this in the future.  We are hoping.
I'm excited for next week when he isn't on Dex anymore.  Beside making him feel miserable and grumpy it elevates his temperature a little, it hangs out in the 99.something range and I think that adds to the feeling crappy arena.  (warning TMI section ahead)  Wednesday he very painfully pooped 3 times, and then didn't poop at all Thursday again.  The vincristine he got on Tuesday causes constipation so we aren't out of those woods yet.  They told me to up his dose of mirilax to twice a day until things get more regular.  He is still crying a few times a night and I'm not sure if that is leg pain (which is common) or if its just the whole constipation owey bum thing.  So starting Monday he will only be on Septra.  No daily chemo pill, No steroids, No MTX!  It's not ideal for them to have a break like that during maintenance cause the idea is that they have a steady dose of chemo at all times to prevent relapse...but since he has to be off it we are going to enjoy it.  : ) 
On a brighter note, We got Tyson's gold ribbon that hung on the ACCO Awareness Christmas tree in Washington DC.  You can see the tree in the video below.  A lady from our Utah Mom's group was there and was interviewed, you also see her in the video with her baby who is an AML survivor.  She has dark brown hair with a red clip.  
I have to admit I was one of those people who knew the pink ribbon but not the gold.  If nothing else, at least I know now and can help spread the word that kids get cancer too!  And a giant Thank You to those of you who have helped and are helping to spread awareness.  Awareness=Funding=Cure...eventually.  For now we do the best we can with the poison we have.  SAVE THE DATE: September 29th we will have a team and walk at the CureSearch walk in SLC.  I hope you will join our team Idaho Fighters ($10 for adults, free for kids) and walk with us!!  We want to be the Largest group there and raise the most money of course!  Click on the link to sign up, you don't have to be there in person to join the team...but we would love to see you there!  http://www.curesearchwalk.org/saltlakecity/tysonsbravebattalion

No comments:

Post a Comment