Friday was just as long as I had anticipated..... but everything ran like clockwork..... no big problems so our day was 8:45- 2:45--- not bad.... Grier got a blood transfusion and a platelet transfusion.  I am glad because late Thursday it was obvious that he needed blood.... no energy... and pale.  He was at the baseball game and just sat and watched... which is unlike him.  Grace decided she wanted to spend the day at the clinic with us so we just called Friday "Camp"--- She and Grier hung out... ate chick-fil-a-- ( well... she did).. and did crafts the whole time.  The infusion room was "fun" according to Grace.... THANKS SHARON and MOLLY!! Child life is the best....! Grier might disagree since we had typical port drama.... and he was attached to an IV pole.  It was nice to have a little distraction.... As we drove home yesterday, Grier asked if we could go for a bike ride when we got home... I always say yes... but I asked him to give me 20 minutes.... he watched the clock and we left for a ride around the lake.... I felt like some quiet time since we had been so busy for 6 hours.... Later that day we went to Hayes' All-Star game--- and Grier was full of himself.... amazing what a pint of blood can do!  It was a good thing he got platelets too.... he was wrestling with Grace... and it was making me nervous.... Some days I would like to wrap him in a bubble.... 
His appetite has been awful--- he keeps telling me he is thirsty but does not want to eat because he feels like he is gonna blow.... ugh... I wish that would pick back up-- Maybe when his counts start climbing..... he is still going down..... with NO immune system. I am still giving him the shots nightly... hoping they work soon.....

Today was a different kind of Saturday.... no sports... well.... Grace played soccer in Boone but I was not comfortable taking him there in case he got a fever.... so she went with friends.... Hayes only had a practice.. so Grier and I were home.... and house arrest is really driving us crazy.  I asked him if he wanted to go hit golf balls today and he was so excited.... we headed to the covered driving range and I watched him hit a huge bucket of balls-- 163 in all! He was pretty tired after that so we came home and rested for a little and he had a surprise visit from Leila.... he was shy when she was here... but has not stopped talking about her since.  Around dinner time Grier decided he was ready to go look at Mustangs.... so we headed over to a Ford Dealership and let him look and sit in some.... He had fun... and it was nice to let him do somethings he wanted to do.... Now he wants to take the Mustang Cobra on a test drive!!!  Dinner was at home but Grier requested queso since we are trying to get him to eat he can call the shots--- we called makeafoodiecall.com and had dinner delivered from Loco Lime ( never heard of it but it was good!).... ahhh--so easy & reminded me of NYC-


Speaking of NYC.... I finally heard from Dr. K yesterday... I was trying to get a date of travel so I could book some plane tickets.... Grace, Grier, and I were going to go because Hayes has baseball for the next couple of weeks--- well~ looks like we will not be going anytime soon.... ugh!  I swear as soon as I think I know the next step things change..... He wants Grier to do  Irinotecan (5 days, IV over 1 hr) + Temozolomide (5 days, by mouth), then 2 (or 3) weeks off, then repeat the 5-day cycle, come for tests 2-3 weeks later--- so that is the plan-- a very low dose chemo.... that SHOULD not affect counts.  I am going to have to talk to him a little about why he changed his mind.... I worry about chemo induced Leukemia... and I really wanted him to be at school at the beginning of the year.  He asked me today if I thought his hair would be back before he goes to Selwyn???? All I could say is I don't know but he looks cool either way.... curls or no curls!  


We go back to the clinic on Monday to checks counts again.... I hope things start improving this week--- if so he is going to go to First Pres for a little bit to see his friends and teachers at Uptown Fun.  A little bit of Normal..... I can not believe the last time he was there was the first of May.




Goodnight from Home--- yeah!!!! We have made it so far..... just hoping for good news from the lab on Monday.... his bone marrow has got to start recovering soon....