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!

January catch up

Sitting here realizing Feb is almost over and I don't believe I ever wrote in January. I cannot recall. It was a slow month activity-wise but blew by with work overload, chasing away germs and dr visits. Overall Grayson's counts have been on the great side. There was a week early in Jan ( believe the week of Jan 8th)  that he woke complaining his ear hurt. I knew it had to be something bc my kids never complain about their ears EVEN when they actually have an ear infection. He had a rough night of sleep and we decided to get him into clinic for a look see (Jan 9). He did not have an ear infection but it did seem irritated. We agreed to treat as an ear infection to play it safe. We went home with amoxicillin and he was vastly better within 2 doses of it. Obviously he was fighting something. 

On his regularly scheduled clinic visit (Jan 23) for counts and vincristine his platelets, Hgb and WBC were great but his AMC was 680. We were given the option to come back in one or two Mondays to have it checked again. I chose the following week. I wanted to keep a close eye on it if possible so 7 days seemed to make sense to me. We went in on Jan 30 and it was well over 3, 000. All was well.

January was really just full of cabin fever and tons of stressful homework for me. The kids have been feeling pretty well overall and eating and playing well. 

And so far, the first few weeks of February are full of colds. We all have had something brewing in us one way or another. Caden has had a cold and cough for over a week now. Post-nasal with no mucus but I am still taking him in Monday to be sure it is not a sinus infection. My awesome sleeper has been causing hell the past week or more with too many interrupted nights. It has worn on me to the bone. By today I am feeling as if my brain game of convincing myself I am not getting sick is useless. I feel like crap. Last week T missed a day of school bc he clearly looked drained and was not his usual tackle the world self when he came home from school. So, to sum it up-the bubble life continues and so does cabin fever right along with it. I cannot recall at the moment anything too exciting occurring in the recent past but we are having fun embracing Vday messages each morning. More on that to come.

Hope everyone out there is doing well and chat again soon.

SUPERheroes

 My friend Becky got me addicted to Pinterest (http://pinterest.com/)-damn her! All these yummy recipes (that make me want to sparkle with amazing chef-ness in my tiny kitchen but somehow I don't exactly follow through), creative artsy ideas (that I barely have time for), inspirational quotes and dream home visions flutter through my mind. But my goal for winter break was to pull off at least one craft project and well, I completed more than 3! This is one of my favs though.

I found it a few mos ago and as soon as I read it I cried. I needed that cry that day. This quote flooded in so many emotions all at once. My Grayson has proven beyond the stars how unbelievable he is (in more ways than one) but so has my Triston. He takes so much pride in being a big brother and that pride seems to grow with age. He is so patient and kind to the boys. And Caden...that tiny boy reads into life in such a mature manner already. He KNOWS what we are fighting for somehow. I can feel it. I knew immediately I wanted to find a way to incorporate this quote into our lives.

from Pinterest quote from Marc Brown

Then came Halloween. It took no effort on my part. The boys insisted on being Batman and Robin. We had the costumes from last year but the two did not treat together due to our hospital stay. I chose those costumes last year for two reasons: T wanted to be some type of superhero to imitate his cousin Ayden (IronMan) even tho he hadn't really been playing the parts and G was clearly our Boy Wonder. It fit the chemo scene at the time. But this year it was different. It fit their personalities, their actions the past year. G literally is T's sidekick in almost everything they do. The time I have had home with him while T is at school he wonders how soon T will be home. That bond I saw forming years ago has only grown closer and tighter during our rough road. That IS what family is for right? This quote also reminds of the importance in telling Triston how SUPER he is, too. He is a fighter and hero just the same. My dynamic duo!

Tiny superheroes October 2008

Big boy superheroes 2011

My version

Not only do "superheroes" have deeper meaning for us as a family on this cancer journey but it has become a part of our everyday "growing boys" life. With 6 came Triston's new interests in superheroes and a little brother in tow to imitate him. As much as I used to hate the thought of fighting, swords, guns, bad guy this and good guy that now I actually enjoy listening to it. Their play has matured together. They participate in role play and silly scenarios and many with some compassionate side to them. They are partners on this journey and I couldn't ask for anything more. So together we are gonna ZAP! and POW! through this battle and as long as I have my dynamic TRIO with me I will survive it too.