Operation North Pole

Thanks to Areum we were given the opportunity to apply for a trip on the Polar Express! This wasn't just any polar express you hear about taking place here and there around Il and the country. It was a polar express for ill children and their families. Read about this non-profit org and see pics of our boys here:

http://operationnorthpole.org/Wordpress/

Can I just say...it was UNBELIEVABLE!  This day goes down in memorable history for us.  I told them what we were doing right before we entered the doors!
G n T literally jumped up and down with excitement. They had no idea we were about to partake in their dream come true!

Upon entry we were greeted by so many volunteers, firefighters and santa helpers. The event began in a cafeteria like atmosphere.We were treated to coffee, eggs, bacon, sg, pancakes and juice. Ronald McDonald told stories and sang songs to the kids. After we ate Mrs. Claus arrived to share the agenda for the day and sing carols with the kiddies. She let us know how excited Santa was to meet us all!

Photographers and tv cameras surrounded the day. There were more volunteers than families! We even had the chance to chat it up w some other families going through similar times as us. To be taken care of all day by people who understood us was beyond describable. To have so many people take time out from their own lives, own families and cater to us from 8 am to 5 pm, especially firefighters who had just ended their night shifts. Instead of going home to their families they spent their time w us. All around us was a sea of givers. SO AMAZING! I cannot tell you how many times I cried quietly to myself or had to hold back the tears. Every little detail was thought of and executed.

We went from breakfast to the reindeer coach buses to the Metra station at downtown Des Plaines. The kids could not wait to get on the train. We had never been a train as a family before and it was clear the kids were jumping out of their skin! T knew as soon as it pulled up that is was not the REAL Polar Express but "it was okay" bc he would "still have fun w his family". Two or more train cars were set aside for us passengers. Each car was decorated in xmas spirits. We were handed goodies of all sorts along the ride to Harvard, Il. Stockings stuffed w books, candies, coloring pages, plenty of other items to keep the kids busy. We sang carols, met the conductor (dressed like the one from the movie) who punched our tickets w flare, and even ate Mcds on the train! It was one crazy train ride!

On our way back to the Des Plaines station there were more surprises. At almost each stop along the way (even tho we had our own train cars, the train still held to its usual schedule) we were joined by that town's fire department, trucks and helicopters, all lit up and  lined up. They waved and hollered to us, holding signs that read NORTH POLE THIS WAY! What a sight! What organization!

As we entered the DP station Santa met us as we came off the train. We boarded the coach buses and again and headed back to the same union hall we began our day at. But this time it was different. As each family unloaded from the buses we entered the building like royalty. Volunteers and firefighters lined the pathway, kneeling to us. Like we were the special ones!They directed us into the same building that was now transformed into the most beautiful winter wonderland. No child would have guessed it was the same room we ate a breakfast buffet in 4 hours ago! They clapped and cheered for US. Us?!

The "new place" was now setup for crafts and activities of all sorts.
 Magic tricks from http://www.openheartmagic.org/ which G n T loved! G still talks about how he made the rabbits disappear and have lots and lots of babies!
Build your own ice cream sundae station, decorate your own cookie like a melted snowman, tattoos and airbrushings, a photo booth, hundreds of cake pops (very popular in my tummy), music and dancing.

 This one young lady fell in love w G and kept taking him all around to the festivities. I was THAT comfortable to allow it to happen. Everyone around us made us feel that comfy, that safe. I really don't know how to explain how much that aspect of these "cancer-related events" calms us. We are at an arm's reach of medical assistance and safety when we need it. Soothes this mama's heart. I can actually breathe in public and not be so on edge all the time. We weren't the only parents w those same fears and emotions running through us.

 HAPPY

 JOY

 Each time the train stopped he would ask if it was still gonna keep going. He just did not want it to end!

 They thought it was so cool to face each other.

 Triston and Mrs Claus chatting it up.

 G blowing on the handkerchief to make it disappear.

 Firefighter Ed was in our train car and so kind to us. The boys really took to him. He shared that he has 4 kids of his own. I was sure to thank him for devoting his day to our family!

 Showing off their tattoos!

 And then the time

The day ended with your family name being called to visit w Santa. Charito and I could not believe the room Santa was found in. It was like we walked right into his living room in the North Pole! No sign of bare tile floors and beige walls. There was carpet, a fireplace, a huge comfy chair to climb up into w him and the wonder and awe of Santa all around.  Behind him was a tree full of presents. At first glance I thought there were still so many families that were waiting there turn to see Santa. It was not until we finished up our visit w him that the loot I layed my eyes upon earlier was all for our boys. 7 garbage sized bags labeled w the Operation North Pole logo, tagged w each boys' name on them were then loaded into our car. I knew wish lists were requested back in Sept/Oct but this was insane! I received many memos reminding us to think big for these wish lists, REALLY BIG. It was stressed! These demands came at a time I hadn't even begun to think of xmas lists of any sort. Charito and I racked our brains for ideas bc in all reality our kids don't need anything. But, again, it was stressed that THIS IS what ONP strives to do for families of the ill. To relieve the stress of finances, stores, etc. We submitted a list for a DS for Triston and  a LeapPad for Grayson and a Thomas Megablocks set for Caden. Those were their number one items and then I still had to fill in 4 additional lines for each child. I just wrote in things like Thomas anything or trains anything bc seriously they would be happy to receive a book for goodness sakes. We were even told that if they felt our lists were not grand enough they would be returned to be filled out again. You should have seen the packet I had to complete just to be a part of this amazing day-media consents up the whazoo and info and pictures of the kiddos. And it wasn't just for the hay of things you know. Even while we ate our breakfast volunteers approached us, chatted with us and clearly recalled the tidbits of info I shared w them on paper. They took the time to get to know the kids on paper and put their kindness into effect in person. It was all part of the masterfully crafted day, every little detail. T noticed these details and asked me once in a while how they knew this or that....I simply reminded him they were Santa's helpers, of course they know it all. It was details like this that made the day special for Charito and I, too. Seeing the belief more so than before in Triston's eyes. This was his year for Santa. ONP did that for him!

 The gifts were exciting for the kids of course. Even Caden had a blast. Watching them end their big day like that was the not-so-necessary-sprinkles-of-the-cupcake for Charito and I. We received all we needed all day long. But giving gifts IS what Santa does best and boy did they make out! And you know what was even better? If we came across a gift that we already owned (bc ONP went above and beyond our wish list) Triston would place it in a separate pile and tell me a child in the hospital would like it. How awesome is my  guy?! He didn't get all selfish and spoiled over the mass of items resembling a toy factory in my living room. I love my kids! ONP was a day to remember for sure!

Bringing Joy

Several days after Thanksgiving Triston realized something...we were HOME for the holiday unlike last year. This made him think about those who don't get to be home from the hospital for the holidays. He was clearly worried about those children for Christmas. It began with a simple question "Can we bring Christmas to the hospital?". Little did he know that Charito and I had intended to donate something to the hospital this season and continue the tradition for years to come while keeping an ear out for what may be needed each year. We were thinking of something along the lines of Thomas trains and Polar Express videos (items Grayson has noticed are lacking during our stays!) But here was my guy thinking bigger. So as soon as I could get a flyer together (using the mighty skills of Uncle Joel) I got the ball rolling.

Seeing as Charito and I were going to do something small and NOW T had his own ideas I had to find a way to keep this under control and manageable. I offered up the flyer to a small group of close family and friends. I had no idea what I was starting up, I had never run a drive before and with schoolwork overload, Xmas and T's bday approaching I did not want to overwhelm myself. So, I suggested people donate money so that I could easily shop one day and deliver the next. I literally gave myself a week to put this together. I did not have big expectations. I wanted to do just enough to acknowledge Triston's

T with the generous load of toys from the C family that filled my entire SUV

big heart and let him see it come to fruition. Can I tell you -WOW!  Flyers went out Dec 13th and by the time our family and I headed to Toys R Us to shop on Dec 18th we had collected over $400 in cash. By the time we delivered the items on Dec. 22 we had provided over $500 in toys and electronics for patients ages birth to 18. That collection was also joined by other donations of toys and supplies people dropped off at our home. I was in awe. Triston was in awe. He was literally giddy over this project. Our garage was covered. I spent that week picking up items from friends, organizing delivery times and details with our trusty volunteers and slapping each item w a label. When I saw how big this thing was getting I knew for sure we needed a system (and a logo! Thank you, Uncle Joel!) that we could depend on for years.

Look at these gorgeous headbands and scarves made and donated by K's  hairdresser. Can't you just pic these fancies on the bald heads of beautiful chemo-fighting girls?! And boys donning some bling of their own?! She also donated various Christmas ornaments. Wonderful!!

visiting some of G's nurse girlfriends!

I know he doesn't like pics of  himself but had to sneak this goodie in!

G pushing the load! My fav pic

We needed one large truck, two SUVs and my van to haul it all! Thank you, Uncle Tom, Z family, Cathy!

 Sorting through the stuff to deliver the perfect gifts to a 7 yr old girl and 10 yr old boy. Unfortunately many of the patients were on isolation so we were only able to deliver to two patients but T and his pal were ok with that. Even G had fun showing off his second home!

 Our trusty helpers, the Z family! This is one of T's classmates and in the past few mos they have become an important group of people in our lives. They insisted on helping us out that day, teaching their own children how to give back in the world. Love them!

Caden hung out in the play room with his adopted "grandma Cathy" while we roamed the peds floor! She's one hell of a babysitter (and friend!)

And we ended the deliveries w a trip to the train display (made by one of the male nurses) that G adores! Everyone got a little tour of the peds wing.

It was quite an evening to say the least. One of my top memories of December 2011. Triston stated he couldn't wait to see what we do next year! I already have ideas! And having such a supportive group of people assisting to make it all happen was the icing on the cake! Thank you all! Thank you for turning my big guy's project into a reality! G's Choo Choo Clan thanks you!

And bc I was so proud of T's efforts to bring joy to others I shared his story with SuperSibs! (http://www.supersibs.org/) and sent them some pictures. Even a few of his school staff members were proud to take part in his adventure and donated. I wanted both organizations to know that along with the lessons we teach him at home, there are others in his life like school, parish and cancer support groups that help shape who he is as well. He has a lot of people rooting for him, too, not just for his little brother! We are so lucky!

A new year, new HOPE, more NEW

The only thing I can say about 2011 is that it was a rough one on so many levels. I don't know what 2012 holds but I know what my intentions are. In regards to the things I DO HAVE CONTROL over, I want more of this:

FAMILY!

A while back my friend Becky posted her new find for her home-a crafted Family Rules sign. And here I was writing them on poster board! I loved the idea but clearly did not want the same one as her, each family is unique you know. And as I searched online I just couldn't find the perfect one. Each one I found had one or two phrases that we do take part in but would not be on my absolute list of rules. I gave up my hunt and dismissed the idea. I knew what was in my mind and so what if it wasn't on some pretty piece of wood. And that's the thing, I didn't really see them as rules necessarily. I saw them as a blurb of what family means to us. What we hold and value as important. The things that shape us and our children. It is home. So last week I was on the hunt for after xmas sale ornaments and as I turned the corner and four aisles down I got a glimpse of this piece of work. I couldn't believe how perfect it was for us. It is what our life has become in the past 17 mos-SIMPLE! Needless to say, I smile each time I walk past it ( and it doesn't hurt that the kids like it, too!) This year more than ever we have done so much of these things. 

I want to see more of my hero SHINE!

More SURVIVING it all from each and every one of us! His spirit is contagious, isn't it?

 Lots and lots of time and loving on these three!

Even through all the dark times 2011 held there were so many glowing moments that I will never forget-our benefit, Caden's first bday, my new niece Charley (my Charley Horse),  friends and family coming to our rescue on the day of the flood/party, a new school year with a positive energy that continues to flow just right (Thank you, Becky!), Triston's K year plugging away wonderfully, the smiles and laughter from MamaC and Lula Mel when they see the boys ( I swear I have NEVER in 17 years heard either them laugh as hard and loud as they have this year! Tragic life changes alter your focus on life and happiness, don't they?), holidays AT HOME, Operation North Pole, Triston's hospital drive and so much more I am probably forgetting at this moment. What I DO REMEMBER is that none of it was possible without the amazing people in our lives, the old and the new. Insert tears here!

And there is more we have to look forward to! November 8, 2013! The projected date ending Grayon's treatment. He will just be turning 5 and completing 3.5 years of chemotherapy. All I can say is WOW! Can you say----HUGE PARTY AHEAD?!


May you continue to see the blessings amidst your darkness, challenges and obstacles. I know we do, no matter how hard it is sometimes. Again and always, thank you for hanging on for the ride with us and we will see you in 2012!

December happenings (intro)

Hello readers!
In a little over a week's time I pulled off a Lego bday party for the boys and a Christmas Drive for the hospital. Both are complete and were a huge success! I don't know how I pulled it off but I did. Could not have done it without a fantastic team of muscle workers, graphic designers, enormously huge heart-felt donations,  an "adopted grandma babysitter" and moral supporters. Some pics are up on FB but I will be writing about the experiences and how they came about soon. Now that these two big events are over I can concentrate on Xmas. I am a little behind and have all of tomorrow to catch up. Thank goodness stores are open 24 hours or til midnite bc that will be my shopping schedule for the next two days. If I don't get back to blog-land til after the holiday we wish you a very merry, healthy and happy holiday season!
love,
 Us

p.s Consider this our holiday card:

Perspective

"I am strong because I have known weakness. I am compassionate because I have experienced suffering. I am alive because I am a fighter. I am wise because I have been foolish. I can laugh because I have known sadness. I can love because I have known loss. I am a strong woman who has weathered the storm but still loves to dance in the rain!"

Borrowed from a fellow cancer mom's FB post.

November

WOW...been a while since I wrote huh?
Here is how I will rememeber November 2011 :

• busy busy work work (it did not slow down by any means and in fact it feels like it got even more complex as I wrap up a day that did not go as planned. As much as I LOVE my team this year I STILL hate the fact I have to work. Mama needs her babies and it has been really hard being unable to attend any class events at T's school this so far)
• a month of off  and on worries for Grayson. Even though by the beginning of the month he was back to 100% levels of meds and counts remained well through the month of October we still had to slowly creep back up to 100%. That meant weekly visits all of October to check counts and bump him up by 1/4s. But through all of that his counts held up great. The worries came with the crap any of us were bringing home. Triston had a stomach virus this month. Caden got a tad of it. G had a few loose stools but nothing causing a phone call. As on edge as we were all month waiting for something hospital-worthy we were grateful (and surprised) it didn't happen. I know it may sound like we were being pessimistic but it's kinda hard not when you are approaching yet another holiday you can only recall as hospital-spent last year. We were undoubtedly nervous it would happen again. Even Triston began to question what was going to happen this Thanksgiving. Almost every week of November there would be one or two days in which G seemed a little off before I left for work, didn't eat much while I was gone but then would perk up near dinner time. Dips in counts? Drops in energy? Mind games? Regardless, anything other than his usual, busy, active, crazy attitude self put us into worry mode. Made  any work day senseless. But either way that became our pattern. A day or two here and there with the rest being fantastic. A day or two here or there with us wondering if the wee hours of the night meant a fever or ER visit. We felt on edge all month. So many notes of conjuctivitis, viruses, pneumonias and who knows what else from T's and my own school. Sick (aka medical mask-wearing) season has begun! Tis our life.
• Triston had his first K report card. He did phenomenal. The only areas of concern were typical K boy stuff-reminders to pay attention (instead of socializing) and keep the socializing and sillies in check. Sound familiar fellow moms of K boys? Otherwise we continue to be more than pleased with his academics. He is reading near a 3rd grade level and his math and writing skills are really flying. His journals and interests in writing and drawing really impress me. I love it.  I am so proud of my guy.
• Caden has spent most of the month teething his way through 4 molars all at once. My first boy to put up with them chompers like that. My little guy who has slept through the night since he was weeks old has made for a miserable sleep pattern this month. I have been running on empty. They all cut early this week and now he is fighting the post teeth cold with congestion interrupting his evenings. I finally got smart the other night (after I almost cried myself to sleep with frustration) and put vaporub on his chest and feet. Wallah! Stupid me for not thinking of it a week ago!
• The 3 boys have really bonded even more so this month. Probably a good thing with cabin fever approaching fast. I brought home a gigantic shipping box from work two weeks ago and they continue to have a blast with it. Oh the things they have imagined! Watching Caden and Grayson depend on each for laughs and silly routines is priceless.
• My parents visited for a few days. We were able to spend one day with them and it never seems to be enough (but I will take what I can get). The boys had a blast of course. We had a mini thanksgiving (yummy beef sandwiches), laughs, football and more goodbyes. It always hurts.
• We finally fit in a thank you brunch for our faithful friends and committe members from our benefit back in April. It was long time coming. It was beyond wonderful to have us all under one roof. THEY make me so happy and warm and fuzzy inside. And of course a get-together like that always includes some tears. A mixed emotions kinda meal!
• And lastly, at any point in the future when I recall this month this is what will immediately come to my mind-cancer and more of it. Two weeks ago my grandma was diagnosed with lung cancer. A week ago my husband's second mom (Lula/Tita Mel) was diagnosed with breast cancer. I had to literally sit down and tell the love of my life that both of his moms will be fighting cancer side by side. That makes 9 family/ friends in 15 mos. Who in hell would believe that?! You can imagine the mood around this house lately. It is way too easy to feel defeated.

But in the spirit of Thanksgiving and all things positive it is pretty easy to find the "thankful" all around us. Regardless of diagnosis we are lucky to have these individuals with us here on earth. We can still talk to them, touch them and hug them. Let them know how much we love them and what they mean to us. I  continue to be grateful for G and his kick ass fight. HE makes it look so easy. It goes without saying how grateful I am for my 3 boys and hubby and the family and friends that support us. We have a home, food and jobs. We have each other.

And I am grateful (knock on wood NOW)  we are not spending Thanksgiving in the hospital like last year:

And as difficult as it was to be there on a second holiday in a row last year (first being Halloween) I will never forget the enormous hearts-of-giving from friends and family that provided us with yummy home-made food. WE are SO loved! I can still recall finally getting a chance to eat once G fell asleep and rounds slowed down. It was near midnight. I played some Dexter, shoveled down some food, looked over at G and shed some tears. We were halfway through high-doses of methotrexate and several more weeks of stays ahead of us and I wasn't so sure how I was gonna make it through the end of the year. That was a dark time for me. A very lonely time.

But we are in a different place now. The road is still rough but somewhat more manageable.  It has a unique undertone about it. It's own feelings of content and fear. I don't quite have a comfortable grip on it yet. But just watching G kiss days and nights goodbye as each passes us makes it a little more possible.  There's a little more normal to take advantage of (with those creeping unknowns and worries around the corner). We will happily take every little chunk we get.

So, thank you. Thank you for you. For reading along all this time and keeping us in your thoughts and prayers. I wish you a blessed Thanksgiving weekend with those who mean or meant the most to you. Each one deserves a place in your heart this weekend (as always). And if I am forgetting any other important events of the month-my apologies.

Addition afterthought:
 And as much as it is due to medical technology that we continue to hear more news of cancer and other irreversible illnesses I am still grateful for it. Without it many of these cancers would not have been caught early enough, particularly Grayson's and for that I am forever grateful. Thank you to the nerds out there who took leaps to discover such uglies in our world and battle science day in and day out to find cures. My hope is that one of those phenomenal nerds discovers a cure someday. And how could I forget the more than amazing people that care for our medical needs these days. As rough as it was to be in the hospital last yr for this holiday they still found a way to make it special for us (as they do everyday, holiday or not). It was memorable in its own unique manner. The doctors, nurses, child life specialists and other support members ARE our family. We are truly blessed to have them in our lives guiding us, laughing and crying with us and holding our hands every step of the way. I hope every fighter is lucky enough to have such  a comparable team on their side.

Post-Thanksgiving:
It was great! Brunch with Mimi, Neal, Mike, Ayden and Charley. Tons of playtime for the boys. A quick visit to see my gram at the rehab center. Good news from her-it is only stage 1 and yesterday she looked great. She looked too cute with her own set of all too familiar steroid cheeks. She was thrilled to see me ( I left the kids in the car bc them places are like petrie dishes!) and her box of danishes. Then we went home for a long family nap while the wondrous oven (thanks to delayed start and timed cooking) did the turkey work for me. By the time we woke I threw together some side and my filipino family joined us for a sit down dinner. Triston said grace, Grayson pretended to and Caden dove into the pancit before we could say Amen. By 7 pm it was just us 5 again, peering thru ads, watching movies and relaxing. A thanksgiving to remember.

Blew by

That is what October felt like. I havent written since early October which was supposed to be our only visit to clinic but you know how that goes...impossible to predict what direction leukemia wants to go in each day.

Early October started out fine. But then by the second-third  week of Oct (immediately following his bday) G just didn't seem right. That Monday is was TOO chill for my liking and I rushed home from work to run him to clinic. A weekend of little things like diarrhea, little appetite, a lot of sleeping and minor whines here and there snowballed into a pile worthy enuf of worry. I knew I just would not function at work or sleep that evening if I did not have him checked out. Well, his ANC had plummeted to I believe the 200s or 400s and previously being in the 3, 000s ( I cannot recall at this moment. the info is upstairs and I am lucky enuf to be updating you at this late hour right before a big day tmro). It was confirmed that he was most likely fighting some type of virus and we went home with all chemo meds held til the following Monday. Two days later he was back to his old self. The good news is that all the while he was "off" according to mommy's standards he never developed a fever. Dr. Kwon even joked w G as we left by saying, "Hey, G!" G said huh? "Mommy is always right!" Gotta love that man's humor when you get bits and pieces of it like we do! Even made me feel confident in my decision and not like a crazy person instead!

Since then he has been great. Great appetite and energy and counts. ANC has been in the 2000s and 3000s since that low episode. Hgb holding strong at 8.6 and 9.2 here and there. Weight gain is steady. Asthma under control w no increases in med admin. But since we held chemo (our home meds) we now have to slowly build back up to 100% doses. So each Monday since we are going into clinic for counts and the regularly scheduled push drug (like Vincristine) and upping his meds. Last week he was at 50% and now this week he is at 75 %. We should be able to go in on Monday and bump up to 100% w no prob. Yeah we spent some time there on Halloween yesterday but it was in and out and a nice quiet stop before the hectic halloween dress him and him and him drama began.

Halloween was great! Just us 5 walking the hood and watching every bit of G getting to enjoy this year (last year he spent it in the hospital for his first non-chemo related hospital stay-that was a scary one). Here we were w Caden walking it and Grayson running it! And there was no slowing Triston down! Lots of smiles this year. I had my Batman, Robin and firefighter. Pics coming soon.

As for the rest of us October has kicked our asses. Triston has been super busy with classmate parties, Awana and the end of the soccer season. Caden had his 15 mos aptmt and actually gained a pound n a half! Points for the puney! All is well w that crazy one! Charito and I continue to struggle to keep the house somewhat manageable and laundry from attacking us each morning. I have been drowning myself in schoolwork (NOT by choice!). I have been up to my eyeballs in IEP report cards, preschool assessment reports and IEP meetings. And now to start off my November I have Parent-teacher conferences til 6 pm tomorrow. Can you feel the excitement in my type-written words?! It has been draining but I just keep tell myself (everyone knock on wood right NOW) that at least we have not had a hospital stay since June (damn varicella) and xmas is right around the corner. Right?While dealing w work and other worries I hit a wall and had to escape. I have attended a couple of yoga classes in the past week and it has paid off. Benefits are short -lived for now bc of the overwhelming amount of work and home crap but it is still worth the pick-me-up. One of the few things I have done for myself since this all began. My goal for November-more sleep and more time for me and the hubby. I have been passing out w the kids or in the wee hours of the night w barely any conversation had between the two of us other than what needs to be accomplished as parents for  the next day. A steak dinner ALONE is calling our names!