Bros

Ooops! Caught them jumping over Caden! The hysterics belting from Caden's belly kept me from checking in on the danger! He thought it was hilarious, I thought otherwise.

Kisses

Taken January 16th (before G was couch-bound w the latest chemo treatment)

Ah, those smiles!

Surrounded by...

CORN DOGS!

We made it to the weekend. No vomit. Limited diet of corn dogs, milk and mozzarella cheese. Tomorrow I will search for THE noodles at Target, maybe I bought them there? But overall, I am pleased with his eating habits. At least he is eating and drinking. But with his choices comes constipation. I haven't whipped out the Miralax since October and boy did he need a dose yesterday and today. When I wiped there was a bit of blood and it did not appear to be in his stool. So, it is most likely from the straining he is doing. You should see him bear-down on something to push (the couch, fridge handle bars, me!). As long as the miralax does it's job we won't have to worry about internal bleeding, espec if platelets are low. Fingers crossed.

We also have been on watch for bloody noses (another one of those low platelets scares and humidity vs cold vs anemia vs his cold boogers making it worst). He got a good one out of the blue last nite ( I was off on my date w Triston and Charito texted me). I was willing to leave the movie if it didnt stop but it was under control pretty quickly. But once he has one we monitor him bc his cold boogers/runny nose can push out any clot that formed in his nose to stop the bleeding. Annoying! Luckily any bloody noses we have encountered have occurred within days of our next clinic visit. We don't have stress over a week's time, just a couple of days. And if a transfusion is necessary that is days within reach, too. We learned quickly that pressure to the bleeding nostril instead of the traditional pinch is best for him, as well as ice in more serious bleeds like the numerous times he busts his lips!

Side note-Charito just informed me (Boys and I just woke from naps) that he is headed out to pick up Bryley from the spa. Huh? Yeah, instead of just taking her in for a nail trim (weeks overdue bc we have def neglected her) it was worth the deal for nails and a bath, too. I had to chuckle, bc not only does our baby girl deserve it BUT WHEN is it my turn?!

Our weekend has been full of stress, emotions, lazies and food. This week in particular Charito and I are dealing with our stress and anger by eating-ALOT. We just ordered pizza and picked up movies for tonight. It is all we can do distract ourselves. As if the kids and their upside down moods are not enuf. Unfortunately we are awaiting some disturbing news of a close family member and it is eating away at us. I will share and vent the explosive emotions I am going through once I have more information to pass on. Just pray for us. A scary life atop scary news is never settling.

We are gonna eat and soak up some family time now. As much as I love it, our weekends are getting pretty monotonous. No adventures, no outings, neutropenia and cancer running our lives. Getting old but I know one day it will be better. I just wish I could hit the fast forward button sometimes!

Week 24 Jan 17-23

It has not been the best week for Grayson. He is so sleepy. Taking 2 two hour naps all before I arrive home. He is eating a bit by 9 am (bologna, noodles, yougurt or cheese). Then he drinks the rest of the day until another hunger surge hits around 3:30 pm after he wakes from that second nap.
He hangs out on the couch and barely gets up to play. His joints must be sore (steroids will do that). Or nauseaus? To cover all bases I have lied a towel over the couch to catch any food crumbs or possible vomit (hasnt occurred yet). I have also brought out the Zofran (the anti-nausea med I havent had to administer since Christmas and before that August). I give him a dose before I leave ( along w his asthma meds, Nystatin and Dexamethasone steroid). Then another when I get home. It is one of those drugs that doesnt hurt to give even if nausea isnt the problem but better to curb that feeling just in case. It is like problem-solving/trial and error. You just cant tell, to be honest. Even though I can get him to laugh n smile when I need to, he is so blah. So drained and beat up looking in his face. Like all the energy has been drained from him by some evil alien. It is sad.
His asthma has really been a stinker this week. We are all fighting colds and he seems to still have a tiny bit left of it. His cough is off and on all day long. I have had to administer his Pro-Air more than twice a day to keep up with that cough which at times are actual asthma attacks. But at least it doesnt seem to peak until the early morning when he wakes and near bedtime so I am here to manage it.
It is all so hard to watch with so much else going on. Work is draining me more than I could ever imagined. And I haven't even begun the two types of report cards that are to be completed by next Friday. Not to mention my endless list of things to do since my return. I bring work home everyday and do not get to it before I want to cry from exhaustive headaches.
Triston is having a nice week at school. No emotional issues at school (frustration levels, stressful moments, trying to control situations) or crab ass moments here at home. He was told if he had a good week at school he and I would go on a date. I am looking forward to it. He told me he wanted to go to a restaurant and sit across from each other like other couples do". He has been super compassionate and lovey dovey with me this week. My biggest baby boy!
Grayson has also been Mr. Affectionate. He wants hugs, kisses and cuddles often. You can tell he just isn't feeling well. And when he doesnt look well we can't help but wonder if a fever is just around the corner. I am just not up for a impromptu hospitalization. Of course, I will always do what is best for my guy but we would really appreciate it if it just would not surface anytime soon. So when there is no fever you can't help but wonder...

a dip in platelets (even though his lips are nice and pink or bright red meaning they aren't dangerously low)?
low hemoglobin (and yet again-has some energy and good complexion)?
joint and bone pain? he does not like to be touched or bothered w. Scolds T for even coming near him! Physical battles to change his diaper when the past mos he has wanted them changed immediately bc it stings or is so uncomfy on that fat-free butt of his
nausea?
or just plain chemo drugs taking their toll on him this week?
or all of the above?
AGAIN, more unknowns.

But on the plus side;
he is eating (not "hide the food" steroid eating like in past steroid weeks but we will take what we can get)-this week taste buds have done a 360-rice, noodles, corn dogs-bread n butter. Blander foods.

drinking (almost 9 glasses of milk a day)

peeing

pooping

interested in tv and reacts happily to his favs and calls out to me to share in his excitement

hardly played off the couch today

laughed along w Bryley today as he played tricks on her

still inquisitive-the town nosey rosey asking me what I am doing at every turn

expressing emotions-no matter how drastic the mood swings are. I have been late to work the past two mornings bc he has tantrummed over one thing or another. Fits that make me jump in fear he is gonna hurt himself. He is so pissed off. Then the minute I get home it is waiting for him to wake and dictate what he may possibly have a taste for. I hate catering to his every need but food is that important and when he IS actually hungry you gotta jump on that wagon bc it passes so quickly, especially if nausea is the culprit. It is beyond frustrating. This evening I had 3 different noodles, rice and a corn dog all made within 20 min bc he has no patience and I can only take the screaming for so long. Wierd how I can tolerate at any amount at work but in my own home I need it to end. I am that dwindled of patience by that time of day. And this was all after I had run to Jewel in search of THE noodles he was consuming w/ out hesitation this morning and yesterday afternoon--and nowhere to be found! I cannot even recall where I got them! Some basil pesto encrusted type organic noodle. Who would have thought THOSE were the ones he'd be screaming for!

Maybe the weekend will be better. More energy. A typical train crazy kinda weekend. Hmm?

ANOTHER Moody Monday

January 17, 2011
The past two weeks of the Delayed Intensification phase have brought on fabulous Tuesdays thru Sundays (great mood other than steroid induced mood swings here and there AND a healthy and plentiful appetite thanks to steroids), but WHOOOOOOAAHHHH IS ME to Mondays. It obviously stems from TIRED and STEROIDS but WOW! It is not like I am prepping the kid for a spinal and yet he is tough to get out bed and get going. We didn't have to avoid meals/drinks for 13 hours. He was allowed to eat breakfast and drink all he wanted. We just had to apply the magic cream on his port and walk out the door. He acts just like anyone of us trying to get a move on on a workday Monday. Slow going and crabapple city! He truly wants to stay in bed and I sure as hell don't blame him. Makes me wonder if at the young age of 2 this is all getting old for him?

Once we get there is he is okay but then little things that usually don't upset him do. Like accessing his port-past two weeks he has been whiney about it, while in past months he insists on helping. And he hasn't been as playful with Aerum (child life specialitst extraordinaire). He is content with a book in my lap, a nap or today it was copying Triston w the Leapster or Leapfrog.

Today G wanted to be like T but also on the opposite side of the room of him. True love-hate relations today. You know how when we are crabby and over the top frustrated and we take it out on our significant others? That is how Grayson handles it all. He REALLY does take it out on T. T could do nothing wrong but walk past him and G whacks him. His own personal punching bag. Thank goodness we have raised T to tell us instead of retaliate. It means I hear, "Mom, he did it again!!" a million times a day but whatever.

And then to top off our visit today he threw the biggest tantrum when I was finally able to say we could go home. HUH? PMS x 100 I tell you! I give him what he wants bc all he did was whine he wanted to sleep in my bed and he fights me to leave. A full on tantrum w spaghetti arms and body making it ever so difficult to get him dressed. You know the kind! Even Triston told him, "With attitude like that I don't think you are going to the bakery with us!" He was right. G did not get a cookie and T did. I was the mom walking the halls with the screaming boy in the stroller. Thank goodness I brought it to carry all our crap bc there was no way I was going to carry him out of there and get beat up along the way.

Little did my audience know my boy had an excuse. The worst and yet most acceptable excuse to act the way he did. Cancer. I didn't care. I didn't care what people thought. They don't ride this rollercoaster with me. They didn't wake this morning hoping this cold doesn't get the best of them. They didn't have to use up their day off doing chemo crap. Bringing their 5 yr old along in order to take advantage of every minute of the day to spend time with him while continuing to remind him of what his little bro goes thru every Monday. These gentle reminders to support him thru this as well. Leaving their happy 6 mos old at home w the hopes he would stay on schedule as he fights his cold. They may not have had the horribly emotional weekend like I. Believe me-I would have preferred to be at a museum with my kiddos like most parents do on days like these. Gosh, I miss museums so much. Yeah, I could take T but it wouldn't be like old times w/out G. I miss his awe as he reacted to both the exhibits and Triston's expressions. So innocent and so uplifting to look to his bro for reassurance.

So, needless to say it was a pretty blah day. There was good news-great counts for the most part. No need for a blood tranfusion which is always good considering the time it sucks out of a day. But I packed for it just in case. Left directions with Mamac for the baby just in case. Just in case we weren't home until after 9 pm.

Today's counts:
WBC-1.71 last week it was 6.38
Hgb-9.3 last week it was 9.5
Platelets 345 last week it was 647
ANC-580 last week it was 5, 790 (check out that plummet!)

His counts are def jumping all over the place during this phase.
Cheat sheet:
we want Hgb over 8 or else a transfusion
platelets over 20
ANC (neutrophils) over 1, 000 otherwise he is considered neutropenic and has little helping him fight off infections

So most numbers held well but we really need to watch that ANC this week. I have all of us wearing masks this week. My prayer for the week...no fever. Let him fight off this cold and fussy-acting asthma ( observed since Saturday) w/out any hiccups.

But as much as I am complaining I am grateful for :
good moods
smiles
laughter
early bedtimes a few times last week
fantastic appetite of cicken, steak, potatoes, noodles, and broccoli
consumption of something other than milk-root beer floats
two unexpected play dates for either of the boys w healthy kiddos
hugs
cuddles
egg nog (my drink of choice this past week)
but something tells me wine will be this week's choice

So, readers-that is the start to weeek 24. We finished our day w Mcds lunch, naps (which made all the difference in the world for Grayson's mood, as he runs around goofing off w trains right now), Mythbusters and Wild Kratts and an early dinner. We survived an irritable Monday and hope the week gets a little less irritable. At least for the boys. I have way too many report cards and 4 mos of paperwork to catch up on to include myself in that happy boat for now. But someday...a
blissful cruise awaits me. I guarantee it. You hear that, honey! I will even settle for a Disney cruise at this point!