Good Week, Still Neutropenic

 Ty has had a pretty good week, feeling pretty good, playing and even helping out a little.  The only meds he is on right now are voriconazole (antifungal for the spots on his lungs), Dapsone (antibiotic to prevent a certain type of pneumonia), and Colace (stool softener).  We tried to go to the Field of Heroes this morning but it was raining when we got there.  We decided to drive through Artic Circle and then see if it was still raining and try again.  Ty promptly threw up as soon as the food was in the car and so we called it a day and went home.  We might try to make it back over there before the Memorial Day weekend wraps up.  We'll see how things go.  The Voriconazole makes him throw up occasionally, I guess it is a pretty common side effect.

 We figured his counts would be gradually rising this week since he is still not taking any of his oral chemo.  He's just not very good at getting that durn ANC back up though so we've been cautious.

 Grandpa replaced his roof and Ty had a lot of fun helping with the cleanup (with gloves and a mask of course).

Helping mom make jam...so fun to be 'normal' for a while : ) His port removal steri-strips finally fell off!!  The line scar is the port insertion/removal site and the red dot under it is a scar from accessing the port many times.  If everything goes as planned he'll have a matching scar on the other side where they put his new port in July hopefully.

 CBC yesterday.  With no picc line and no port we had to go up to the hospital lab to get a pokie. (Thank you Aunt Sarah for the cool pokie prize! We played with a marble tower like this when we were kids and she found him one on ebay) He hates finger pokes really bad, they hurt for a few days after and the arm ones only hurt right when you get them which is why we chose to just go right to the lab where they could do an arm one.  He does so good with them now, he cries when it pokes, but he doesn't struggle and freak out anymore like he used to, and he likes the idea of having a pokie prize to look forward to. 
Even though we went first thing in the morning so the results would be done in plenty of time for PCMC oncology to call and let us know what to do about his oral chemo and next CBC...the lab forgot to fax the results to PCMC so we waited and waited and never got a call.
Our awesome home health nurse looked them up for us and since he is still neutropenic we are assuming PCMC would have just kept him off his chemo pills anyway.  Hopefully we will hear from them on Tuesday so we know where to go from here. 
 For my records WBC 2.0 low, HGB 11.7normal, HCT 34.3normal, PLTS 325normal, ANC 400 neutropenic.
I don't think anyone will have an answer for why his ANC is still so low, especially since he only took half dose chemo pills for 3 days.  ??  We are over 9 weeks off oral chemo total out of the 17 weeks he's been on maintenance.  He's supposed to take his oral chemo daily without missing a day.  I hope they can solve the mystery of the low counts monster so we can get him into a more 'maintenance like' life.  So far the only time we have felt like we were in maintenance was the first three weeks of maintenance.  It's been a roller coaster ride of low counts, infections, and hospital visits ever since.  Don't get me wrong though, we are doing great!  and all of the 'downs' make the ups so much better so don't worry about us, we have so much to be thankful for!

His lips are still creating this weird peely thing where the stitches are.  Anyone know how long it takes for stitches to dissolve?  It seems like they are taking forever to go away.  Actually I guess it has only been about 3 weeks since his biopsy so maybe that's not forever as stitches go.  I'm not sure why his lips do that peeling thing.  I've always correlated it with low platelets, but his platelets are fine right now.  He's not dehydrated so I have no clue.  He has had problems with his lips since he was diagnosed.  I guess it will always be one of those weird things that no one can explain.
If you missed our last post you might want to scroll down, Ty had so much fun doing a 'dressing change' on dad.  He keeps asking if he can do it again. : )  He was also pleased that Brooke and Brenna both had to get pokies at their Camp Hobe physicals this week.  Starting to wonder if Ty will be stable enough to go this year...here's to hoping.