A peek into the future?

Back in January/February I received an email invitation to an event sponsored by SuperSibs! (the organization that makes a point to include Triston on this journey and remind him he is special too). It was titled Quiet Heroes. The title alone intrigued me. I opened up to see it was a luncheon at a hotel for moms of children battling cancer. Well, to be honest after I read WHO it was FOR I pushed it out of my mind. I could not imagine myself attending such an event. Me? In a room full of other moms whose cancer battles exceeded mine in both length of time and understanding. I can't explain it. It is just that feeling of being a newbie at all of this and deciding whether I am ready to open up to others about it, especially those that have been at it for awhile. You get what I mean? But something told me not to delete the message. So it sat in my inbox.

Well, about a month or more later Areum asked me if I got the invitation (which at this point I had received a email and paper version). I let her know I had and she asked what I thought about it. I shared with her the tug I felt when I read the title. Quiet Hero. Is that what I am? And I realized it merely took some computerized text to help me see that I am indeed that, everyday. I need to be this for Grayson everyday. I am the one (of course hubby , too) completing the endless list of this and that FOR him. I am the one in the background fighting and doing for what he can't do or decide on his own. I am the quiet one, the forgotten one. And THAT is what SuperSibs! wanted me to see. THAT is what Areum helped me see in full that day, just by asking me a simple question-"what do you think about it?"

NOW, don't get ahead of yourself audience! This conversation did not seal the deal for my attendance to the event. No way. But, she did get me thinking. She knew she did, too. She asked that if she were to set up a Lutheran General table of moms in attendance and she attend as well, would I be interested. That didn't take much at all to ponder. I told her yes. I would like that. I believed I was ready for something like this. It had been almost 9 mos without any attempt on my part to connect w any other cancer families. I was not ready. I liked keeping what I understood, lived day in and day out and most importantly, believed inside my 4 walls. I did not want anything to taint that, endanger the hope and BELIEFS I have for Grayson's survival and courage. I have been comfortable with how I have accepted and battled on day by day. The groove we were in as a family and with clinic was acceptable and workable, our " new normal", and any interruption scared me, especially when we continue to hear how great he is doing. Get me?

But I told myself as I left clinic that day-if I can come to that realization in one conversation and FINALLY think of ME and how I have been affected by cancer than it would not be fair to myself or those around me to NOT do something with that knowledge. In March I registered for Quiet Heroes. And Areum let me know that I could also bring a guest. I was free but my guest had a $50 fee. Choosing my guest was easy.Not only did I know I would NEED the support during such an event but she and I needed each other at this time-the event was being held over Mother's day weekend. I hated that it was both sad and joyous events that led me to choose the perfect guest. But it was a no brainer. Remember Maria? I wrote of her mother's death back in March, the irony that her sister's brilliant team of drs that battled thru her Lymphoma (another blood cancer) are Grayson's drs, and the fact that she is a new mommy herself. Well, what better a place to be during such an emotionally difficult weekend. I envisioned it to be hard weekend for me, and more so for her. Her first mother's day, without her mom, and the rawness of that wound being poked at w a firey stick w each holiday. This way we could be there for each other to tackle a buffet of emotions.

Well, let me tell you -IT WAS WONDERFUL!! To be there not only w someone I love, my Mariella, but w a support team member like Areum was unforgettable. 2011 Mother's Day weekend goes down in history for me for so many reasons:

1. I opened up to my FIRST cancer event revolving around our own journey

2. I shared tears and laughter w so many beautiful women

3. I saw into the "other side" of what our cancer life will/may entail(

4. I saw the GOODNESS in people's hearts, strangers and organizations from all over-there was a mani/pedi booth, massage booth, hotel staff waiting on us hand n foot w champagne and food, and people who when they looked at me it felt like they saw into me. There was this silent understanding or glances that said to me " you are amazing for what you do, I get it bc I have been there or what kind of pedestal can I put you on bc you are unbelievable". I didn't feel like "oh, there's that mom of that boy who has cancer!"

5. I gained was forced to reflect upon what we have been through. To know that in 7+ mos time we made it to Maintenance. Moms I met that day had recently entered Maintenance after a year n half -2yrs. Their beautiful, strong children were battling cancer alongside other conditions that only complicate things. In the big picture we have been lucky. I have prayed for them and their journeys and what lies ahead for us.

Not only did I get to experience the above statements but I also enjoyed the presence of a wonderful speaker. His name was Jordan Sonnenblick. A down to earth fella who more than once commented on how HE felt intimated to be in a room w such empowering, strong, and dedicated women. That was quite the compliment. He began his discussion by explaining how his book DRUMS, GIRLS & DANGEROUS PIE came about. He is an English professor. When one of his junior high/high school students had a sibling that was diagnosed with leukemia he was disturbed to discover that he could not locate any appropriate reading material to help her through it all. Something beyond the factual definition type books. Something that tapped into what SHE may go thru as a sibling. So while he remained by her side (and the family) and listened to them open up he came up the idea to write the book from a sibling/family perspective. A peek into how cancer effects the entire family.

All I could think was-what a perfect tie into SuperSibs! bc that is what THEY DO! (this event was obviously well thought out!) The book interested me. And when I approached the author's signing table I caught a glimpse of his other books. But one title caught my eye. AFTER EVER AFTER. It did not indicate it was sequel to DRUMS but if this man wrote the way he spoke I was in. I purchased both books. Again, I didn't still quite know what each book was all about but when Jordan ( I can call him that bc well, his books are like he was in our heads!) asked me who he could make the books out to my responses popped out w out hesitation. He made DRUMS out to Triston and AFTER out to Grayson.

About a week or so after the luncheon G and I ended up in the hospital again. I brought DRUMS w me. I read it in less than a day. I could not put it down ( and I really mean that! After each dr-ish interruption I picked it right back up. I didn't care if G was spending the day doing TV and Ipad sutff. It as me time and I needed it. And bc I was so into the book I really did forget a few times that I was actually in the hospital. Here I was reading a book about a boy who is beginning his life in the hospital and I was in the hospital next to mine). It was so easy to read, the mind of a junior high student. And you don't have to have cancer in your life to love this book. It is one of those breeze thru quicklies bc you just have to know how Steven is going to tackle the next hurdle. How Jeffrey is handling treatment and how the parents are coping w it all. It had me chuckling bitty laughs to myself (and you know me! I barely laugh aloud at comedies). It had me smiling. Nervous. And sobbing. Truly sobbing. Part of that was what the book spoon fed me and the other part was- I WAS REALLY DUE for a good cry. Well past the expiration date.

There were too many connections to the heart and our situation. I truly believe I was meant to read this book right then and there. It was therapeutic.

Steven is the 8th grader big brother. Jeffrey is his 5 yr old bro who gets sick. And this book is the Alper family's journey through initial diagnosis.

The book is written in first-person. Steven begins the book reflecting on the past 10 mos. On the very first page he says, "How did I get here? How could my life have possibly changed so much in only ten months?" As I read that line I realized Caden was 10 mos old now. Grayson was 10 mos into treatment. Huh? yup, I was meant to read this book today. The ties went on and on throughout the book. The bond between these two brothers was the melt your heart kind. Jeffrey ADORED his big bro. He was a king in his eyes. That is my G to his T. And Jeffrey was diagnosed w exactly what G has-ALL.

And I ask myself that question all too often-When did this become my life?

What scared and calmed me at the same time? The closeness and mirrored thoughts I shared. The ideas of how moms vs dads handle these types of circumstances.

Statements like:

• "It looks like this is going to be what life is like for awhile"
• "My husband isn't really taking it well, yet"
• "We said we'd be back together soon and that everything would be fine. And at that moment everyone in the family was united toward the common goal of getting Jeffrey well".

What terrified me?

Quotes like:

• "Dad, they didn't just put tubes in. They stabbed him in the chest. They STABBED HIM!"
• "I couldn't believe my parents were just now noticing me, and that I might be upset about my brohter's situation. I'm fine. I think."
• "And I was angry. Mindlessly, relentlessly angry. Word got out about my 'tragic situation' and I was like mini-celebrity. Everyone talked of how strong and brave I was. How "lucky" Jeffrey was to have a brother like me. Why didn't they try being 'lucky' like Jeffrey for a few months?"
• "And I wanted to scream at every teacher as why they are making me do this stupid homework when my brother white blood cell count is low? Who cares about the list of presidents when Jeffrey has another spinal tap on Friday. Who cares about mulitplication binomials when my brother's gums bleed every time he tries to brush his teeth!"
• "I wanted to punch every kid that told me they 'understood' my pain. Nobody understood my pain. Maybe if I had gone to each of their houses, whacking random family members w a nail-studded two-by-four, they would have begun to have some basic comprehension."
• "And my parents-they were trying...but GOD!"
• "Meanwhile, Jeffrey went bald. He lost his beautiful golden hair. One day there was just nothing left to fall out. He never said anything to me about it along w the swelling in his face from all the steroids. He was looking horrible."
• "I will feel guilty forever...Jeffrey was driving me so nuts w his need for my attention that I was often relieved when he went to the hospital. I mean, I needed time off from him so I could catch up on schoolwork , but how hideous is that? I wished for my own baby brother to be hospitalized so I wouldn't have to play some one-side Chutes and Ladders games."
• " I was hanging in there. But the wierdness of acting 'normal' when nothing was really normal was exhausting."
• "I can't change any of it! But I can work on the things I CAN change."
• "The amazing thing was how comfortable Jeffrey was there. I mean, it seemed like a very nice place, and I was glad so many people cared about him, but I couldn't imagine feeling THAT at home in a cancer ward."
• "That day I looked at her with a new appreciation. This woman had spent nearly half her time this year at the hospital with her son, prayin gover him, watching over him, comforting him, handling all of this overwhelming cancer stuff. And suddenly, as she reached out and squeezed my arm, I realized without any shadow of a doubt that she would do the same for me."

Of course G was on my mind throughout the book (isn't he always?) but it was Triston that absorbed the foreground. Is this what he thinks right now? In the future? Will he resent his brother? Will he hate us for the life we are forced to live right now? We really are trying our best, T. The Triston element of this book (especially when it was in the big bro's perspective) shook me. Much of the sobbing was from these fears I have. And if you have been following for a while you know that I often discuss the impact of cancer on Triston and how that will play out or does from month to month. As a mom you don't just worry about the sick one. The sick one may occupy most of your thoughts throughout the day but there is ALWAYS time to think of my Eggroll n Rice. But it still hurt to read of another family suffering, thinking and wondering. Such pain. NO family should bear it. And I will never understand why some families are called to bear it more than once.

But not to get all sappy on you, please know that the book is great! It is in my top 5. And it is silly, funny, and most of all brave. I dont want to spoil too much for you if you are looking for a quickie read.

So of course I was eager to start AFTER EVER AFTER. It was written just as vibrantly. I will not spoil that one for you but I want to share the back of the book w you:

"Jeffrey isn't a boy with cancer anymore. Hes's a teen in remission. Even though the cancer should be far behind him, Jeffrey worries that it will return. He has normal stuff to worry about too-friends, parents, girls, school. NOrmally he'd ask his older brother, Steven, for advice. But trusty, responsible Steven is finally rebelling and has taken off to Africa to join a drumming circle. Meanwhile, Jeffrey's best friend, Tad, is hatching some kind of secret, crazy plan involoving eighth grade graduation. And Lindsey Abraham, a way hot girl who is new to the school, thinks Jeffrey's cute-which totally freaks him out.Theres's alot about life that cancer has prepared Jeffrey for, but there's also a lot that's brand new. Now is the time for him to stop surviving, stop worrying, and start living again."

I mean, just look at this cover. The cover of each book tells a story already.When I first looked at the cover of DRUMS it made me think of loneliness and a love for something. What that was I wasnt sure yet. AFTER clearly made me think of triumph and freedom. And this was all before I even cracked 'em open.

And how perfect that without my knowing it before reading-each book was dedicated to my perfect boy and his own special path on this journey. I will never forget meeting Jordan. I will never forget my first step into the "outside cancer world". And I will never forget how empowered I felt leaving that luncheon.

Here is to my boys.

To Triston-May he find his own personal T-like rhythm to the DRUM beat.

To Grayson-May he live his happily AFTER EVER AFTER and know his fan club is never far behind.

And to Caden-May he never cross paths w DANGEROUS PIE! And if he does-I am sure his bros will bail him out!

p.s Audience-If you want to know what DANGEROUS PIE is....READ the book! You will not regret it!

Father's Day 2011

When I asked Triston what we should do for daddy on father's day he told me he wanted to make a painting. A humongous one. I replied that I wasn't so sure we had a piece of paper large enough. My problem-solver had a better response-"LET'S MAKE A MURAL!"

We just happened to be in the yard after work during this conversation and we both seemed to stare at the garage wall and nodd in agreement-we had found our background! The plan was to do it the Friday after work that way we didn't get caught up in any weekend junk and forget to do it. Well, my research for a stove and dishwasher that Friday followed by my exhaustion led to no mural productions. BUT, we still had Sunday. And as I lay in bed late Saturday evening pondering how I was going to pull this off (bc there was no convincing T of any other gift no matter how many time I tried) the early morning wake up calls saved the day. Before I knew it it was 6 am and all 3 kiddos were awake. Charito was nowhere near wakehood. So, I huddled them all up and off to the yard we went. I set them up with an impromptu breakfast while I set up the art supplies.
They had a blast. There we were at 8 am on a Sunday morn becoming artists under the sun. It really was a relaxing morning. And by the time they were drained of the artsy fartsy mood Charito woke and we were able to surprise him.

Working on his beach, rainbow (which he gave up on as soon as he saw we didn't have any orange or yellow), the sky and he and daddy holding hands.

My pic for daddy, he and I IN LOVE (go ahead and puke in your mouth if you want, we are kinda cutesy gross like that...it has been 17 years ya know!).

My vertically challenged Einstein conquering the obstacle.

Love this.

Admiring his work

Telling me "Ta Da"

Triston wrote HAPPY DAD DAY

We spent the rest of the day in the yard (until it rained). But best of all-we were able to go to a restaurant! That is right! All of us! We met the in-laws for dinner. It was wonderful! My favorite moment of the meal was when I looked down the table and saw everyone laughing, eating and OUT! And the fact that my boys STILL remembered their table manners and public places manners was the icing on my cake (the 12 layer cream cheese carrot cake that is!). It really was a great day!

Yard o' Paradise

We decided since we are getting good at making the best with what we got...we will turn our yard into our own vacay away. We recently picked up a Pirate water table (didnt take much convincing from T to throw that one into my cart), a shade tent and water paraphernalia (not my personal favs-NOTED). My fav so far is the annoyingly "easy my ass" shade tent. Yeah it is a pain to setup but it keeps the ever moving Caden on lockdown safely. I swear, of all my kids, he is the only one after one trial taste of grass actually enjoys it! Gross! And now that we have gotten smart and pay lawn guys vs sucking up family time we are using fertilizer and this double grosses me out! This kid! TOOOOO easy breezy sometimes. If that is even possible?!Someone can climb the fort now!
Their new chairs. My sick attempt at a cute pic. Caden loves the sticker label.

Triston telling Caden to throw his hat up in the air like at a graduation.

And T n G have "graduated" while Caden eats the sticker label. I really need these 4 teeth to come in soon!

His typical steroid smile!

T n G called this their treasure chest...

and by the time T carried it down the gangway G asked, "OH NO, where the treasure go? It's missing! Bryley!!! " yeah, he blames Bry for everything!

Where's Caden? Notice the banig (filipinos...did I spell that right?) to prevent him from eating the grass instead of his snack!

Sexy as always

These are neat "paraphernalia"-dragon squirters!

The model strut

Don't forget about me, Ma!

It has been nice to just sit in the yard and let them at it. They are easy to please. Water and each other. They create play schemes and tools and run wild w their imaginations. And Caden just gives them these sad eyes that plea to have the increased mobility to keep up w them. It is because of T n G he is walking around the fort and sliding down. He insists on following them so often that he will even crawl on the concrete at full speed. That only lasted a couple of days after red knees and now he crab walks. I don't recall T n G crab walking until 18 mos in their tumbling class and here is this tiny one all about it. He really makes me laugh.

As long as they are having fun that is all that matters. Sprinklers, slip n slides and boy things is all it takes. For me-all I need is a book, laptop and food!

Funny guy

After falling asleep w the boys last night (really early) I had to wake in the middle of the night to give Grayson his dose of Mercaptopurine. The kid was munching on pizza to the very last second before bedtime so that blew that timing. Around 1 am....
Me: Sushi, gotta wake up for medicine.
No movement. I waited a few seconds and just when I was about to repeat my sentence ...
G: Knock knock
Me: Who's there? (as I tried my best not to bust out laughing)
G: Banana sushi
Me: Banana sushi who?
G: BANANA SUSHI, HA HA!
The entire time he told his joke he did it w his eyes closed. But as he finished up the final line he looked up at me w his smiling eyes and clownish smile. I kissed a chubby cheek as fast as I could and he hugged me. This was one chemo dose I sure didnt mind waking up for.
G didnt go back to sleep until 4 am. I was able to sneak in a mommy movie while he cuddled and talked my ear off. It was actually a pleasant 3 hours just he and I. My lil late nite partyer!

Don't be shocked...

The bicker, banter and (whistle blow) violation-physical contact (shouldn't take much to guess who is fault here! c'mon think really, really hard!)

Segregated from the victim for quiet time.

Still milking it

And the make up hug. Jekyll and Hyde I tell ya.

G was pretty much like this all last Sunday (June 5). Such a nice touch of G charm to our

first calm day together since the pox hospital stay.

It went down like this:

Sunday, May 29-Wed,. June 1 Grayson in hospital for chicken pox (see previous post)

We got home after dinner and I intended to stay home to recover from the hospital stay and attend Triston's graduation luncheon. I still needed to get gifts for teachers, principal and school office manager. Can you say Hello Jewel-Osco at midnight!

Thursday, June 2 A emotional and wonderful couple of hours w just Triston to ourselves. He beamed with pride on stage. Then I returned to laundry while Charito and T headed our for haircuts and boy stuff.

Friday, June 3 Go back to work.

Saturday, June 3- Buy, Buy Baby and haircuts for Triston, Caden and I (It was actually very relaxing to be in that shop with our fav AC for couple of hours).

Where's Caden?

I am pretty sure this is his 3rd haircut by AC (and one by me that we will not talk about).

At Buy Buy Baby Triston fluttered those girlie eyelashes of his and mentioned (as he Vanna White's his way toward the Little Tikes section) "Wouldn't this be nice in our yard, Mom?". And thus began the decision to gussy up the yard for the summer. We will be creating an escape-like paradise in our own yard. We are gonna make the best of a vacation-less summer. The kids have already started enjoying themselves with the handful of beautiful days recently. Pics coming soon!

June 4th-a full week of work which leads us up to today and the most recent posts before this. I just had to vent about those first few days of June. It was one of those weeks in which I prepped myself for a non-chemo Monday on the 4th and actually had to look at the calendar to believe it was June. The days were a blur and the months switched off while we were in the hospital. It felt like a dream state of blurry days (and not the kinda dream you particularly want to be having on any night). I don't know where the days have gone. And I never really believe I will catch up. Resistance is futile!

A great Monday (finally!)

Monday, June 13th

Today marks 45 weeks into treatment.

I am super tired today so this post is gonna sound all discombobulated...

We were scheduled for spinal today so Grayson was cut off of all food n liquids late last night and all this morning. I pictured a horrendous morning seeing as it feels like mos ago we had to do this ritual. It was only the first week of April but still. I lost the hang of it all lately.

Grayson was great about it tho. Actually, he was so cool about it that he had me worried all morning. He was TOO chill but still his goofy self-all from the comfy spot of the couch. It was a little wierd. Not that I wanted a tantrum but I got no refusals and that is odd for a non-stop eating machine lately. Just got us wondering since he was chill and halted that enormous appetite of his after 2 pm yesterday. So the kid had nothing in his belly since 7 pm last night. Then before he went to bed he was given a full tab dose of Mercaptopurine. He slept well and was in a good mood this morning.

So, even though I was wondering if anything was brewing in him we took off to clinic in good spirits. I kept trying to steal kisses from Triston and Caden while Grayson was the one telling me to "let's go see dahcter Dell!".

When we arrived he actually wanted to be carried. Odd again. He usually is trotting along in full speed, happy to be out in the world even if it is LGH world. He is not a picky guy!

We walked into clinic to a few surprises! We had Dr. Goodell again! Princess Jennie is back! And Aerum was in! She didn't think she would be in clinic last we spoke but wallah, there she was peeking around the corner. And then Jennie ran to G for great big hugs! It was SO great to have her back. And the pics of her daughter are gorgeous! When G n I slipped away to go pee before "poke on the back" (spinal) began we returned to Areum knowing our boy! The portable tv was set up w Thomas ready to go. She is THAT good!

By the time G was accessed and draws were complete he fell asleep in my lap. He was out to the point we didnt use as much sedative as usual bc he was on his own auto-sedate mode. He was never aware of beginning or completion he was that tired. It was such a quickie spinal w/out our usual roles of reading books and telling jokes ( injection into the spinal fluid of Methotrexate and draw of spinal fluid). Goodell and I even snuck in a nice conversation together. I have really enjoyed the last few weeks with him. I love Kwon but again, they each are perfect in their own ways. And these past few weeks I have needed Goodell's humor, sarcasm and easy breezy explanations of things. It has helped make that tornado feeling a little less dizzying.

When it came to get him waking for final vitals and check for stability he was hard to wake. By then his counts came in and we had our mystery culprit-low glucose. Not dangerously low but enough to not be aroused easily. I couldnt even shake him awake w tickles. The plan was to try and get some juice into him but we were afraid he'd choke on it. So they hooked him up to some dextrose via port and within 15 minutes he was fluttering those eyelashes asking for food. His low blood sugar may have accounted for the crabbies and chill mood the second half of yesterday-who knows? Could have also been the week catching up to him? Who the hell knows anymore!

Regardless, he woke perky. He was goofy, thirsty and hungry. He asked for all of his gals while we got ready to head out. Areum helped him pick a toy from the treasure chest. He was feeling great! I was feeling great! It was so wonderful to have a back to normal clinic visit w out the latest fever, rash, pox and virus talk. It was to the schedule, just the way I like it.

Counts were great!

Hgb rose after leaving the hospital a 12 days ago at a 7.4 = today 9.4. All on its own w out a transfusion

WBC 3.95

Platelets 357

ANC 1, 960

And we are back to our normal everyday 100% medication schedule! I know it sounds silly to be excited over such a thing but it's anything to get us closer to the end.

Prednisone 2x day for the next 5 days

Mercaptopurine every night (1/2 tab M-R, 1 tab F, Sat, Sun)

Bactrim M and T

Methotrexate (oral) every Monday

Grayson weighed in at 22.5 pounds and 33 3/4 inches. He has grown half an inch since late 2010.

He was in such a good mood after downing a whole apple juice and some yogurt raisins that we decided to venture out after clinic. It was almost 1 pm and we dropped by Trader Joes. I asked him if he wanted to go shopping and he squeeled YES. We had fun. I was on a mission to find healthier items to boost this boy up. As long as he has been eating almost anything in front of him and steroids were back on the menu this week I had the green light. I had a great discussion w Barb the dietician about some options and Trader Joes was my inspiration. I found some awesome goodies! Including the Bob's Red Mill Whole Ground Flax Seed. I am about to get sneaky!

It was all fun and games until I smelled somthing. I noticed G leaning forward in the cart. "G are you going poop?" I asked. "No...I mean yes" he responded. WHAT?! Stupid me forgetting all about the dangers of post spinal diarrhea! I had vomit on the brain not diarrhea. We raced to the bathroom, cleaned him up and got home as soon possible. He has been going every 2 hours since but it is no longer a watery consistency. And now that I think about it, he had some loose stools yesterday, too.

He remains in a great mood even now (7:30 pm). We played in the yard before dinner. It was a nice end to a hectic day.

Triston was sent to bed early for bad decision-making (like locking me out of the house and thankfully letting me in as soon as I yelled at him to do so). Caden bumped his lip on the sidewalk trying to chase Triston. He also mastered entering and exiting the fort toy on two feet all by himself and absolutely loves the slide! G continued to give me some mini heart attacks while insisting on climbing the walls of the fort (and gracefully I might add). It brought back of memories of him first accomplishing that skill weeks before diagnosis.

It was a happy Monday. A happy Chemo Monday. How many people can say that?!