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.

Thanksgiving Week

A nurse asked me on Monday if we would be here at the hospital on Thanksgiving day and I told her most likely, considering the way his body metabolized the methotrexate last time. Her response, "Well, at least it will be a memorable one". Yeah, no kidding.

Happy in his second home

A few weeks ago when Triston received his first Supersibs package I went back to some of the resources Child Life left me the day of diagnosis. I sat most of them on a shelf of get-to-when-I-get-to. I remembered this sheet in particular. You see, a couple of weeks ago when he was having a tough time at school and then I had that chance to "assess" him...I realized he was feeling a little disconnected. And that was confirmed last Thursday night when he told me he needed a backpack for Supersibs just like I had. I saw that he was having a difficult time mentally placing where I am or what G and I do when we are at the hospital. He hadnt been there since August and clinic since September. I decided that he needed to reconnect with G's second home so that he could have a visual of where I am when away with G. I needed to make this all about him and he is absoring it all. Put myself in the mind of a 5 yr old hurting, too.

So, on Monday I attended his Thanksgiving feast without his brothers. It was too cute to see a huge long table with 20 lil bodies all around it...waiting for the whip cream at the end! I wanted it to be for him. Mommy time. I had so much fun with him. He just adores having me around. As proud of I am of him, there was a twinkle of pride in his eyes about me. That felt really good, priceless as a matter of fact. I am a pretty amazing woman to him-he must have been taking tips from his father!

After the luncheon I asked him if he wanted to come with Grayson and I to clinic and then wait to see if "Dr. Kwon says we have to stay in the hospital". He agreed in the sweetest yet eager voice, a voice that whispered-oh, thank you, mommy. Thank you for letting me be a part of this. I just want to be with you.

T was even comfy enuf to "hand the baton" off to G while we roamed the hospital halls from clinic to PEDS. Without my suggestion he asked G to show him the hows and wheres. He truly searched for his own meaning behind this field trip-was he reading my mind?

And thanks to the Laura and her clan I was able to put a fun spin on it. A spin that also offered T some control. Control that he has been craving in recent months. The P family provided us with some Thanksgiving decor and I told T he could be in charge of decorating G's room. Just like he was in charge of the sign above that tells the world this is his brother's room each hospital stay.

We saw Auntie Amy and Uncle Neal at Caden's christening Sunday-they were finally able to give G his bday present. I loved it as much as he-they put so much thought into his gifts: 1. Ever since G was born Neal referred to him as ROCCO-some Italian goofy name in
reference to his hairy head-like mafia or something.Then Neal came of with this catchy tune naming him Rocco the Rock who Rocks it all night long. It is hilarious that all the boys know it now and sing it along with him. Well, they found G a tee that said Rock on it. 2.They also found him a set of superhero pajamas. 3. A dinosaur tee -Auntie Mimi loves to ask G what a dinosaur says and hear that roar of his. 4. Since early this year one of Gs personally designed games is to give a person a bee. He pretends he has a bee on his finger and then stings you. It is like his signature trademark. Amy and Neal found him a Thomas the train w bees on it that is carrying a tender with honey and when you push the button the tender buzzes. He laughs everytime. Above he is playing with those trains (this able to be planned hospital stay allowed me time to pack up toys and such, even though Child Life is great about providing anything he wants I still like to have our own stash).

The other thing we were scheduled to do once we completed clinic and our admission into the hospital was to meet up with Nurse Jen (not Princess Jennie but one from the Peds floor we have had several times). She and Aerum contacted me last Friday night to discuss whether I would give permission for G to be in a video that will be streamlined through Lutheran General's website ( and who knows where else it may be helpful). You see, Nurse Jen was a survivor of a childhood cancer as well. She survived Non-Hodgkin Lymphoma ( http://www.cancer.gov/cancertopics/types/non-hodgkin) as an adolescent. She was treated by Drs Kwon and Goodell. Her survival led her to become a nurse and just recently ran the LLS Team in Training Marathon. The hospital has been coordinating a story all about her and wanted some footage of her interacting with a patient. She chose Grayson. Add her to the girlfriend list, of course. I told Jen and Aerum I was honored to have him take part in her amazing story.

They came in around 4 pm and took video shots of Jen and Grayson "pretending" to assess vitals and then playing trains and goofing off. It was adorable to watch. So, once that is completed and aired I will let you all know.

I treated the boys to a greasy dinner of pizza and fries and milkshakes. Even tho we were in a hospital room I still soaked up every minute I had with T n G. They engaged in train play, laughter , books, and computer games just as if we were at home. I really didnt want T to leave, especially when Charito arrived and T asked if he could stay the nite w me. But I told him I needed him to go home with daddy bc Auntie Amy and Ayden were to meet him in the morning to stay a few days. That perked him up again.

Tuesday came another surprise-the Chicago Tribune was doing a piece on the Humor Cart that prances along these halls often. It is a cart full of gadgets n toys n bubbles n silly stuff to brighten a child's stay here at the hospital. They asked me if G could be photographed and interviewed for the article. I happily agreed. I have always been touched by the amount of playfulness bursting through these halls and if I could make people aware of how amazing this hospital is I would do it. We took the silliest pics and as soon as that is published I will let you know. Even though I am touched by the interest in Grayson I do realize there is that chunk of publicity for the hospital behind all of this. What better to grab an audience than a BEAUTIFULLY ADORABLE PIECE OF SUSHI w cancer?! It melts your heart each time you read this-don't it? I thought so.

Another car wash...

See the disk over his port? Mommy did a bad thing. In the hopes of preventing G from falling off a chair while playing trains w T Monday nite I made a boo boo. I was about to place him from the chair to his bed, remembering to glance a T's feet for clearance of any IV tubing getting caught, and neglected to check my own feet. I was stepping on his tubing as I raised him. G screamed in pain. I lifted up his gown and immediately saw blood behind the bandage covering his port. I called the nurse. Two of them removed the adhesive to find the needle literally yanked out of his port and repositioned at his surgical incision line. It repoked itself back in to his body in a place without any magic cream. The needle just sat there pulling at his skin. I was immediately upset with myself. How could I? I am careful ...overly cautious at times and I did this! The nurses fluffed it off saying it happens all the time. Not to me it shouldnt is all that replayed in my mind. That snag caused a tear in the skin overlaying his port "button"-the circular , spongey space given for needle access. I could see it immediately. They had to deaccess and reaccess him without any magic cream-we were on crunch time already with the wait on his PH urine levels and now this before we could start the methatrexate. My poor baby was not at all happy. He hadn't been that upset since our first week of diagnosis. My heart sank. I did that to him. While trying to avoid some major head injury I still ended up hurting him in the end. I wondered if this was the vibe our whole week was gonna have.

The rest of the week did lighten up. Tuesday and Wednesday evening Charito met G n I at the hospital for dinner. Auntie Amy was with Ayden, T and c from Monday nite thru Wednesday nite. Mamac took over from there. I am at ease when I know Amy is there. She and I are so alike and she provides my boys with that mommy touch they need in my absence. I need that, to depend on and treasure. I really do.

I do not get many pics of daddy bc he avoids them like the plague-but I love these!

We can add two new favs to G's list of books. I love how interested he is the past few mos. It is so charming to hear him say, "You reeeaaaaddd it", as he passes a book to you. This stay he enjoyed 5 Little Monkeys and We're Going on a Bearhunt. And after only two read thrus he had our actions memorized and the bulk of the words-so you can imagine how energized he was to be able to "read" it to himself. He would look up at me every once in awhile with a proud lil grin.

Meet Arturo's hand. He is the first Respiratory specialist to allow G to eat while getting his treatment. G was on a popcorn kick this week and Arturo would pull the mask off a smidge so G could stuff a kernal here and there. We like Arturo-a funny, funny guy.

But then entered other specialists who were not so kind while he ate. But no worries there. Brainy Grayson came up with a solution, is there anything he does that doesnt make me laugh out loud?! Here he is stuffing kernals of popcorn into the holes beside the mask. I guess by the last photo he was willing to add some more humor to the mix.

By Thanksgiving morning G and I and were content with our usual routines here. We had playful visitors for him like Child Life and therapy dogs. We played, read, conducted typical 2 yr old-mommy battles and cuddled. Triston called often to talk to us, especially to speak to Grayson. I am so thankful for modern day technology-the photos, videos, calls and words thru my phone are my life line here.

I was crabby waking Thanksgiving morning. I was determined not to cry at all. After all, I should have been pleased enuf to know I got to see my 3 other boys later that day bc G was not in isolation (a positive aspect itself). But one call from my parents in Arkansas and a good friend awaiting our long overdue cry and I was had. Needless to say it was a tough day but as found in my previous post I did find some good things to be grateful for in life.

Happy to have had these Thanksgiving moments in our hospital room:

The best part of this week had to be the little surprises:

• Daddy taking the time to dress Triston all handsome for his Thanksgiving visit even tho there was no one to impress with his abundance of handsomeness.
• a video and tv spot for our lil star Grayson.
• The roll roll rolls of Caden and the opportunity for Amy to get several turns on tape for me.
• The phone calls T made to G. Without any prompts they say I love yous and Miss yous. Grayson started adding "so much" and "oh, how sweet" to those phrases!
• The abundant spread of food from our Ambushed Friendship Thanksgiving. And yes, I did finish off that whole container of goodies all on my own.
• A visit from Uncle Kevin this morning.
• A giddy and smiley Dr. Kwon all week. It was clear he was VERY pleased with G this week and even more so this morning...
• we go home today! His methotrxate level dropped from .24 at 10 am Thanksgiving day to .04 at 1 am this morning. UNDER ONE!!!! Grayson did not plateau and sit for a couple days with this second batch! He did not require as much Leucovorin in his system this much either. His metabolism cooperated very well this time around. It also helped we eliminated some unnecessary oral medications to avoid wrongful interactions and futher delays (like Nystatin and Bactrim). I could see this week's result pleased Kwon very much. That alone made my day!
• additional surprise-he told as that as long as G seemed ok by Monday morning we could skip clinic on Monday. Woo hooo!
• And to be sure we could have a day off I asked for a CBC to check his blood numbers. Kwon agreed it was necessary-better safe than sorry before we are discharged. His Hgb was at 7.9 when we arrived on Monday. The chemo had to have tinkered with that number one way or another. It did-7.2 today. But we are taking care of that with a transfusion as I write this. That is one of those 4 hour ones, got another hour and a half to go.
• Medically it was a good week-no chest xrays, no bloody noses to rush about, no declines in Grayson's health. He puffed along with his silliness, flitted eyelashes, smiles, giggles and 2 yr old tantrums but overall (once again) content during our stay. He made me so proud-he has a habit of that doesn't he?
• I had child-care and travel supplies all lined up thru Sunday. I dont care if we dont get home til dinnertime tonite! We get the whole weekend together. We are getting home 2 days early! Our first batch of this phase kept us here 6 days. Second batch 4 days. This week's success put us in that "normal" timeline that Kwon initially described a hospital stay of this high dose phase to be. I remember wondering if we would ever reach that point or would G's lil body prove slow to eliminate that poison from this body. At least we reached the greener pastures this time.

We are putting up the xmas tree tomorrow! A new vibe in our house-that is my goal this weekend. I cant wait to get home and snuggle. Guess which boy will be sleeping with me tonite? ALL 4 of them!!!