Clinic today...still off oral chemo

Horsey Doctor today.

 We brought Emily and Merin with us so Mom stayed outside with them. (no children are allowed in the oncology clinic other than patients...too many neutropenic kids)  This is them looking through the window at dad and Ty inside the clinic.  You can see them in the pic below if you look really close.  Ty is sitting at the table and Brady is back a little.

 I took Merin and Emily to the playroom for a while, they thought the giant dollhouse was pretty cool.  They made some crafts too.  Brady kept me updated via phone while he and Ty played DS.  Ty said 'ugh, I died' several times playing super mario bros. 

He has a weird rash around his eye, I'm glad it was still there today so the doc could see it.  Brady told her all about his pooping woes (he still holds it in for as long as possible which sometimes lasts a couple of days, until his little body literally forces it out) and when they tried to discuss with him that he needs to go potty every day, that didn't go over very well I guess.  She suggested having him sit on the pot 10-20 minutes a day to see if maybe he will go if he knows he has to sit there.  She doesn't know how stubborn he is : ).  Brady told him if he will do that and go potty every day he will buy him a DSXL. (I'm thinking as he is telling me this 'wow, that is a big present for pooping')  Tyson took Brady's face in his hands and said very seriously with tears in his eyes, "Dad, I don't think that is very fair."  So we are to continue the mirilax and add a stool softener.  The doc suspects that internal hemorrhoids are the culprits of causing him so much pain.  She said regular soft stools will help.

So ANC is STILL 600.  That means we keep him off oral chemo for another 2 weeks.  He got his IV Vincristine chemo today and we start him back on his five day round of dexamethasone (insert sarcastic fist pump yeeehaaaaa).  She also took him off of his Septra, she said it sometimes can cause low counts as well, and it may be the cause of the weird rash.  She said if they decide to keep him off of the Septra (Septra is the antibiotic he takes every Mon and Tues) they will substitute it for a different IV medicine that he will get once a month when he comes to clinic.  She is also hoping that his lips will improve as his counts improve...makes sense cause they always seem to suffer when his counts are low even though that doesn't really happen to the other kids that I know of. 

They are also having him tested to see if his body doesn't break down the 6mp right to see if that is partially the cause of low counts for so long.   That way they will know which chemo doses they need to reduce.  Apparently about 1 in 100 kids have the TPMT enzyme deficiency that they are testing for, it's a test they have to send to California so we will know the results in about 2 weeks.

Wiped out!  He was super grouchy and anxious this morning on the way to the doctor, I'm starting to wonder if only going once a month increases his anxiety cause the visits are so far apart.  HCT 33.5, WBC 3.0, RBC 3.94, PLTS 236.  Weight 16.4kg...that's 36lbs!  He is almost back up to his diagnosis day weight which was 16.9kg or 37lbs. : )  Thank You for dinner!!  We are so spoiled and doing great!  Thank you Thank you for the concern, prayers, rides for kids, and all of the other things you do.  We have a lasagna in the freezer from a friend, it has been waiting anxiously for Ty's steroid days...I'm sure we'll be pulling it out in a couple of days when his cravings intensify.  Thank You!