Latest (that I can recall these days!)

I think I forgot some stuff the last time I updated.
Like the good news ( I think?!):
I finally got the balls to ask if Grayson could attend school in the fall and Dr. Kwon looked at me like I was crazy and replied "of course!". All those months I worked myself up to that question and it was that simple of an answer. He and nurse Meghan explained that the treatment protocols are designed for the kids to go on with life as normal as possible. We had the green  light. I will save my ranting for this fear for another post bc there are tons of thoughts spooling around my head on this one. Stay tuned!

Almost all of February the 5 of us have been on and off with colds. We are in the clear for 7-10 days and then someone else in this house is fighting something off. I am grateful it has not been any serious viruses tho! The gastro one is going around again, bronchitis, strep and of course that lovely friend pneumonia is always at our doorstep waiting for an invite. NO thank you!

Feb 20 G had his LP (lumbar puncture) "spinals". All counts were looking good except his ANC at 400. His mood def did not match this numeral! The kid begged me to leave the house so he could get his "pokes" and ran down the hallways greeting Princess Jennie and Nurse Meghan with hugs. He was giddy and silly as usual. He had a gunky cough and sounded nasally since Sunday but other than that I had no concerns. Kwon asked me my opinion about whether to proceed w the day's procedures and I was ok with it. Had his mood indicated otherwise than I would have disagreed but you should have seen this clown of mine. Cracking us all up. And even when he overheard the question from Kwon's mouth and he left the room he began to whine to me that he wanted to get his poke. He himself wanted to get on with the day's plan. So we went for it. Typically a spinal does not take place with an ANC below 700 but like I said, this kiddo proved differently.

He handled it like a champ as always. We literally skipped down the hallway to the car on our way out. G was so eager to get home to T. Due to the low ANC we were scheduled to return next Monday for a count check with hopes that it would go up. He was taken off his mercaptopurine until then. He was only to receive his Bactrim and 5 days of steroids.

Then things changed. You have seen the pics. After every spinal he gets Mcds, sings songs on the way home, eats and plays up a storm until bedtime. All this as if no earlier in the day a professional wasn't stabbing needles into his back! But the last 10 minutes of this ride home were different. His eye lids were heavy. I assumed he was given a smidge too much of Versed. Then he dismissed his Mcds and insisted on napping. Before I knew it, in less than 2 hours he had a fever. Then he vomited. Neither of these things had occurred after a spinal in over 15 months. I immediately thought this was a virus that hit its head. That chemo or not this was bound to happen today. I went into mommy panic mode and began packing Triston's lunches for the week. laying out Caden's clothes and doing laundry and prepping the hospital bag I hadn't touched since June 2011 (damn chicken pox, Caden!). I was convinced this was the virus that we had been dreading all of winter. It was finally time to see the hallways of PEDS again. I did not give him tylenol bc he had never fevered so soon after chemo before that I did not want to compromise anything. I gave him time to rest. I even recorded his breathing on video as he slept. It was so fast and short breathed. It was SO all of a sudden. A Jekyll and Hyde from the boy that just skipped the halls! The fever went down by the time he woke from his 3 hour nap. I called clinic to give them a heads up to his condition. Dr Dell said to monitor him through the night and if his fever reached over 101 then go in. He did his whiney sick moan and groan all night. He barely ate. I was able to get him some gatorade and bites of pb n j (side note-G has never liked pb n j sandwiches and all of sudden he wanted to eat it on a bagel! Whatever he wanted to eat was fine with me. He took some bites and ate some goldfish and passed out. Since then he has had two pb n js. Thank you steroids for the new found food item we can add to your goofy list of side effect cravings!).

When he woke Tuesday morning he was still a little off but had been fever free since dinner time MOnday. By lunchtime he was his old self. I mean his real old self-the breakdancing fool in the living room to Selena Gomez's Love You Like a Love Song Baby old self! It was a complete turn around. After a few emails with Nurse Princess Jennie she assured me that it is not uncommon for a kiddo to handle spinals great for a period of time and then have some off ones. The fact that his ANC of 400 indicates he is currently trying to fight something off plus the whammy of chemo that day kinda knocked him on his ass as a result.

I won't lie, he had me nervous. It was that unknown of hospital no or go? Leaving the rest of my kiddos and hubby? Things we hadn't had to do in 8 mos. We are loving that record! And thanks to G and his eager spirit we were able to avoid it again. We are closely monitoring his asthma, this gunky cough and anything else that may seem goofy before Monday. We are living the bubble life til then. Avoiding it all. Kinda hard for him this time around tho. His counts were so good the past two mos that we took a  few outings and now he is wanting more. He understands what we mean when we say his "numbers are low". SO much that when I explained it to him last night after he asked if he could go with to pick up Ts glasses he tried to reason w me that it was 'not like the car show but little like Jewel'! Smarty pants! He is getting the whole crowd thing!

Today, Wednesday, he is still doing great. The throw mama for loop of Monday seems like it was a week ago! He just came up to me to say that daddy gave him another pb n j sandwich, 'like on Sunday, Monday and Tuesday-three days all together' (he's a day off, he really means M, T and W) but no complaints from me. He needs the protein!

I will keep you posted on Monday's check in. After that we are not scheduled again til March 19th. We are now in 5A of Maintenance and from this point on he will receive spinals every 3 mos. That means something like 15 more spinals to go and we are done with treatment. So far yet so close, huh? November 2013 here we come!