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!

What it looks like...

The whiney, attention-getting, fake tantrum!

(jealous/mad/silly bc I stopped reading to him so I could feed Caden)

OR

From that...

to this in a matter of seconds...

over the littlest of things.

PMS x 100

I can't help but laugh!

Thank you, STEROIDS!!!

Welcome, Delayed Intensification phase!

Moody Monday

January 10, 2011

Everyone was moody this morning. Especially G. Thank you, steroids. It was the first time since August he did not want to go and see Princess Jennie. He was clearly very tired. So was I. My mind raced last night. I could not turn it off. He was very restless last night. He took two naps yesterday and still asked to go to bed by 7:30 pm. He tumbled around for 2 hours before passing out. That boy ran himself tired after a week of WILD CHILD behaviors. He was a happy, active 2 yr old doing his 2 yr old thang. Yesterday and today he paid to play. He is a true crabapple today.

He walked into clinic whiney. I carried him while the nurse assistant pushed the stroller. He was definitely not in the mood for any socialization. No running hug toward Jennie today. He slept during his treatment. A 30 minute push of Doxorubicin, push of Vincristine and blood counts. I was hoping all the while there would be no transfusion needed. I had no backup plan for T afterschool. I was clearly not home and had Caden with me at clinic. Counts were great. His ANC (neutrophils) jumped from 950 to over 5, ooo. Hgb 9.5 and WBC over 6, 000. No transfusion. A sigh of relief.

So while he slept, Caden ate and ate. He was such a good lil boy. Smiling and grinning at anyone who entered the room. Doing his job to greet accordingly. My social butterfly.

We left clinic after 1 pm and had just enough time to run to Target. The kid plowed thru the bologna we picked up on Saturday and we obviously needed more or there would be RIDICULOUS tantrums had. And with an ANC of 5, 000+ the boy deserved to get out!!! He had fun. The minute we left clinic his mood changed and he was his goofy self. He wouldnt shut up in the car! Why this and that and dissertations here and there. Too funny.

I even had time to get him home for another nap and sit on the couch for some peace and quiet for about 30 min before T walked in the door (I had his friend drive him home for convenience sake since I KNEW w G's morning record he would due for another nap and I was not about to wake him to pick up T). Then T and I had our own time together reading and chatting before the other two woke. Because as soon as all 3 are in action the night seems endless. The only reason I have time to write this is bc they are sucked into Thomas (a holiday dvd G saw at Target that I once again forgot to take out of cart at paytime-lucky for him it was on clearance for $5. SEE WHAT I HAVE TURNED INTO!! I AM BUYING THOMAS DVDS!!!). They are acting out a scene while Caden laughs along from his exersaucer bc he will laugh at anything that comes out of T's mouth. T could sing a swearing song and Caden would go into hysterics instead of drop his jaw in disgust.

So, we survived Chemo Monday with huge cases of TIREDS!

That is my Monday for ya! How was yours?

Grayson is....

SOOOOOO LUCKY TO HAVE THESE HAPPY BROS IN HIS LIFE! THEY THINK THE WORLD OF HIM AND VICE VERSA

Delayed Intensification

Snuggie time

Good bye Interim Maintenance-----------------Hello Delayed Intensification!

We are just one phase away from MAINTENANCE!!!!!

This next phase is 63 days long. So, if there are no bumps along the way we should finish up at the end of February or so. His home cocktails for the first 29 days include:

4 1/2 tablets of Dexamethasone (steroid) a day (morning and night)

1/2 tablespoon of Nystatin 3x day

1 teaspoon Bactrim Mondays and Tuesdays

Zofran (antinausea) when needed

We are also keeping up with nebralizer treatments and all asthma meds

We began Delayed Intensification on January 3rd. Right on schedule! That is a big deal in "chemo time". This phase consists of Monday clinic visits. Any need for a blood transfusion indicated on Mondays will be taken care of that day. I no longer have the luxury of taking care of them early Tuesday mornings bc I am back at work. That makes for a LOOOOONG Monday if a tranfusion is on the checklist.

The first 29 days of DI (during a weekly visit) require the following to be administered:

Vincristine push through his port (a familiar drug to us)

Doxorubicin (bright red IV drug through his port)

1x = Initial start of phase was a Intrathecal Methotrexate (spinal tap and push of drug, VERY familiar drug to us-remember our last phase of 24 hours straight of this stuff?!)

1x = PEG injection in his thigh muscle

He is on the steroid for 7.5 days (every other week)

So far in this first half (Jan 3-9) we have seen a happy boy! Playful and HUNGRY. I knew the steroids kicked in as soon as he asked for Ranch dressing with his corn dog. Just like last time. Food choices include: hot dogs, corn dogs, bologna, alfredo-sauced noodles, buttered ravioli, plain bread w lots of butter. He has lost his taste for sweets. No obsession w M&Ms this past week. And we cant seem to pour the mild fast enough!

He has been in a really good mood and I am grateful for that. He is really loving up on Caden this week. Very concerned about him. The steroids have made him a crabapple in the past with unpredictable mood swings (try tracking that w the regular two yr old antics alongside it). But so far he gets really crabby fast and is clearly tired. He has crawled up on the couch and taken a nap each day since I returned to work (last Tuesday, Jan 4). And over this weekend we took family naps to care for his tired needs. So as long as we watch for those nap signs and help him give into them he remains a happy camper. I cannot complain. I love seeing him active!!!

The second half of the phase consists of (Beginning day 29-most likely first week of February):

Day 29 and 36-Intrathecal methotrexate (spinal tap and push)

2x-Vincristine (push)

1x-PEG injection

Day 29-One really LOOONG day of Cytoxicin (that drug that only takes 30 min to administer thru IV put all day to monitor his urine output. That is the kinda day spent in the Day Room at Clinic. We usually dont leave until after 4 pm)

2 periods (4 days straight) of our fav (insert sarcasm here ) Cytarabine (AraC)-the type of drug in which he is sent home with his port in access for me to push thru his port at home right before bedtime. It is no biggie to administer it's just having his "tubies" hanging out and needle inserted for days straight when he is such an active boy. Nervewracking. Can't tell you how many times I tell that boy to stop jumping on the couch!!

TG / Thioguanine-for 14 days straight (a new drug to us) . It is an oral chemo drug that interferes w cancerous cell growth. However while doing that it releases toxicity (the killing of those cells)- uric acid, potassium and phosphorous levels affecting kidney and liver function. It also decreases appetite. So we may see a drop in that surge we enjoy seeing while he is on the steroids.

No steroids during the second half of this phase.

And of course we continue his Nystatin (mouth sore prevention n treatment) and all asthma meds

So, there's a sum of what we are up agains the next two months. Help us pray for minimal to no bumps in the road. I don't mind transfusions bc they keep that bone marrow healthier but anything else is not invited on this trip!!!

Let you know how tomorrow's chemo treatment goes soon!

Full Circle, Mirrored Mothers

Our articles framed together

I wanted to give my parents something special for Christmas this year. They live out of state and that has made this all much more aggravating to deal without them to run to. I wanted to give them something that put a positive spin on 2010 and what we as a entire family have suffered through. As I was mentally reminding myself to pass on one of the many newspapers I had bought of G and I in the Trib it hit me! I should frame it. Then I got hit again! AND frame the newspaper article pic my mother and I were part of. Brilliant!!!! Both pics captured bittersweet moments in our lives, without a doubt.

Why so meaningful?

30 some yrs ago I was born 3 1/2 months premature. I was supposed to be born on xmas eve and instead was born mid -September. I did not come until....wait for it.... Christmas Eve (when I finally reached the discharge weight drs were comfy with----3 1/2 pounds). I was born weighing a pound an a half. I fit inside a Dunkin Donuts box (ask my aunts who placed me there for laughs!). I wasn't given that home-for-good-blessing until my parents wavered thru the shock, pain, anguish, unknown this and that, surgery or not moments, and utter fear of my death too many times. I am actually baptized twice bc of that fear alone. I came home in the most beautiful hand-made dress from a devoted nurse. My mother's shoulders to cry on and support systems for so many weeks ( I have those same people in my lives today and many have become friends I can count on. Nurses are very special people!) I was given the title "High-Rish Nursery Queen" and survived, as my parents watched many preemies pass away as their turmoil continued. And all this occurred in one special place - Lutheran General Hospital. Hmm...I know that place pretty damn well, too!

30 + years ago

Left-September Right-November
1 # 8 oz over 2#

My mom and I have spoke of the inevitable moments relived as she walked those halls and entered a hospital room that housed her 3rd grandbaby the week of diagnosis. And I assure my father felt the same even though he did not discuss it.The daddy's girl in me felt it with every inch of his hold on me. It took weeks for me to see the 'full circle' aspect of all this, the mirrored lives we were leading. It scared the hell out of my parents, and I as well. Was it fair that I was to live the same fears as they? Of course not, but here we are. As the drs said, it was nothing we did. It was nothing my mother did. Grayson and I were just chosen.

Every Christmas Eve I sit in front of my tree with a hot cup of anything and think back to my childhood. Gracious memories, endless ones. I had the most wonderful childhood and on. I love my parents. They made me a Harper and Harpers fight. It was the first line my pediatrician back then muttered to my parents after his first evaluation of me-"Forget what they told you. Sara is not going anywhere. WE have a fighter here!" I still remember that pediatrician, Dr Metrick. He continued to be my dr until I turned 16. His name is forever remembered throughout that hospital today.

And to think-I survived back when the technology that exists today was none to be found. And Charito and I are constantly reminded by medical staff, friends, victims, and strangers of how far they have come in the advances of Leukemia research and treatments. That is today. I am thankful for today.

Well, we made a Carper and Carpers fight.

And thus far G has proven he is a fighter and will continue to be.

I believe it to my very soul.

Weeks 20 and 21

Having fun with Thomas stickers...think he took pointers from T on "silly sticker behaviors" . I can recall the first time T stuck stickers all over his body, including his penis! Pushing along that IV pole w/ ease. He is better at it than I, the only reason I take over is to prevent his toes from getting crushed!

Notice his left eye? Even as a baby his left lid would droop whenever he was tired. Belmonte determined that lid was actually housing more skin than his right. When it is at it's "heaviest" it never actually impedes his vision. It is just noticeable when he's tired and more often during these past few mos at random times of day. We will continue to monitor.

Choco gets spoiled with a gigantic Snickers ice cream bar. He ate half and passed the remainder onto me...I guess I HAD to eat it, right?

I love these next two pics

(seeing as I can hardly get Charito into any!)

One of the best things of this hospital stay was the several times daddy came to visit. G really missed a great deal that week. As you can tell he was so excited to spend time with him. And to get that solo mommy and daddy time. Spoiled brat!

Chowing on the already made, ready-to-eat gingerbread house!

And obviously cancer is NOT going to stop him from being a typical two-year old!

See below:

Cupcakes! Luv his old man seated pose.

Luvin' up on the puppy he received from Nurse Shell. He slept with it! He kept asking it if he wanted to see Bryley!

It REALLY was a pleasant stay that week. We had face time w almost ALL of G's fav nurses and child life specialists who worked their butts off to get us home in time for xmas. And they sent us home with unbelievable goodies for the boys for xmas. I was even able to vent, cry and laugh with theright person to fit each of my emotional needs. All the others were good, too, but that one symbolized the end to Interim Maintenance phase. It was a biggie. He amazed us, as always, thru that phase. As fearful as we were as a family for those weeks of on and off again hospital stays-it flew by. With no bumps in the road! Who could ask for a better Christmas gift, New year wish!? The following week at home (we made it home the day before Christmas eve) was full of family time, food and tons o hugs for all our boys. So much to be grateful for. It really was the perfect end to a toilsome year.