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!!!

?

I wasn't going to write today. As ironic and pathetic and rude as it may seem...I was having a hard time to find things to be thankful for. I know it should seem clearly evident. I know that. I know how mean it must come across. But I am so foggy.

I had to write bc I was chit chatting with one of G's nurses minutes ago, smiling and such, and then she left the room. The second that latch clicked with the door closure I burst into tears. Out of nowhere. I havent stopped since. I cannot get this image out of my head:

Baby Ewan's mommy holding him seconds after they took him off monitors, kissing and cradling that sweet lil boy during his entrance to heaven. Less than 3 weeks ago and yet she lives that moment like it is the present each and every morning.

http://www.team-ewan.com/

I hurt for her today...a mom who cannot dress her son in Turkey day clothes the way us new mommy's imagine to do so every year. He doesn't get to wear that "1st Thanksgiving" bib. I ache for her.

I ache for my Filipino family and anyone who knew and loved Jimmy and Jacob. It has been years without them and I KNOW there are so many who look around their dinner tables still hoping to have them seated right there beside them. But thankful they have learned to rely on each other on days like today.

I hurt for my parents who are so far away. I miss them so much it is sometimes easier to not call them everyday in order to avoid that reminder. But thankful to have them here on this earth, alive and healthy.

I am mad at myself for waking in such a bad mood. A rough night sleep for me but a smooth one for G. Thankful he is getting the rest he needs even when vitals and meds are pumped through him without his aware.

I hate that I have to talk to my husband to coordinate a time to see he and the kids later today when instead we should be lounging in our pajamas smelling the food brewin'. But thankful I DO get to see them bc G is not in isolation today. I cannot wait to hold Caden who has been rolling like a fool the past two days (thanks to Auntie Mimi and her videos from afar!). Oh how I miss Triston's inquisitive voice. So much excitement in every bit of him it's astounding to me he keeps grounded!

How could anyone not LOVE these 3 ubelievable beings:

Okay, stopped crying.

Look at that I guess some gratitude squeezed out of me as I wrote-thank you blogging!

Embarrassed that as I searted to cry, who walks in? Kwon. Thankful that he has displayed the happiest-go-lucky mood we have ever witnessed from him in the past few weeks. He is warming up to us/loosening up and I like that. He doesn't have to be so straight-laced all the time I guess.

As short as they were I am happy to have Charito visit us the past few nites here. It was so much easier to do so when we could plan all this out in advance as opposed to our last stay. Thank you, Amy.

I struggled with the irritability G woke w today. It was a rough morning for moods to clash. I describe it as "Roomie quarrels...with subsequent complaints to our RA". But thankful I have the roommate I have!

Annoyed that it has taken a chain of people to talk to since last nite with no answer yet as to why G's Flovent prescription level was changed and by whom. But thankful that asthma meds exist to prevent my guy from an endless list of respiratory issues and traumas.

As much as hated (but needed the cry out release minutes ago) I am thankful it led to a long awaited conversation with a dear friend, resulting in more shed tears but NEEDED by us both-I love you, Maria.

Annoyed that our Thx dinner and time together will be sent in this tiny room (we did not get placed in the new tower this time). It is gonna get tight and frustrating fast no matter how calm we all try to be about it. But thankful we will see each other. We feared G would be in isolation and thought for sure he would not be able to have any visitors today-a yucky thought to me that I may not see my other two boys on this holiday.

Thankful for a constantly out of this world group of friends who created an entire turkey dinner (whole turkey!) for Charito and the kids and a separate plate for me for Charito to bring along the way!!!!

Hurt that it took Caden a bit to give me a smile and react to our usual goofy antics, but then I got to see him roll, roll, roll for mommy. I honestly could not put him down. He has been my angel of peace and reminder of positive reality for 4 mos now and I am still honored to have carried that sweet, protective soul of his for 9 mos. He just wows me beyond words everytime I look at him.

Still disappointed in myself for the impromptu (less than 2 weeks) scheduling and planning of Caden's baptism this past Sunday (the jipping guilt I feel ever so often), but so thankful such wonderful friends and family appeared to honor his day and it really was a great time. He had HIS day!

So there you go, it is 9 pm now and I am exhausted. These past few days here have felt like a month already. But I was able to reach some gratitude in my day...one way or another. It was clearer than ever to realize it is and always will be -RIGHT IN FRONT OF ME-the people in my life I cannot bear to be without. No matter where I was today or will be tomorrow I need to keep that in mind. They have always been there for me and will continue to bc that is what love is all about. I love you-you know who you are!

Lost Receipts

I have been meaning to write this post since September. So many thoughts running through my head and not knowing where to start. The title came to me before anything else, all else following suit as natural as natural can be these days.

I feel like Grayson and I lost our receipts. He is broken. I am damaged. And we cannot "return" to the past. We cannot make it all go away. At least he can be fixed. He's being repaired every week, every day. Whether it's an oral med, a neon green plant-derived liquid pumped throughout his little body or an injection he has tools to fix him. And he likes his tools. It continues to amaze me while I sit here with him during Batch #2 of Interim Maintenance how comfy he is here. This hospital is his second home and he don't mind a bit. I am not exaggerating. He is happy here.

Me, I don't know. It is not such a tangible fix for me. Anytime anyone asks how I am the only word that comes to mind is DAMAGED. I don't say it but I think it, actually scream it inside my head before the typical "okay" or "hanging in there" or "fine" rolls off my tongue. That word sums it up for years to come, actually the rest of my life. I will never be the same. Yes, I still find my best source of happiness and serenity in my children. That is how it was and always will be. Yes, I still find my protection, laughter and level head through Charito. Yes, I still find my parental soul and cushion and direction from my parents. But, most of what I think and do on a daily basis is corroded. Tweaked from what it used to be.

I feel like I live in another dimension, a parallel universe. I eat, sleep, shower, cook meals (not many thanks to friends), change diapers, do laundry, and shop like any other mommy or person out there. But, when I am out there it does not feel what it used to feel like. I enjoy the fresh air much more than ever. I find solace and peace in the little moments, they fill my heart in an enormous fashion. I do not enjoy the crowds. They have become our nemesis. The hustle and bustle I used to crave is not as pleasant anymore. I cannot stand to listen to little bickerings from the person in the checkout line or a random lady's biggest worry over what to make for dinner. The things I used to do. Not anymore. It seems so petty. I have a new perspective on what matters in life. I guess that is a lesson I can take from this but I wouldn't want this lesson in this way to happen to anyone else. The decisions I make on a daily basis differ from yours. The restrictions we now encounter as a family are different then yours. Where we can go and what we can do is so limited. I learned that when trying to plan Triston's 5 yr old bday party just so his brother with Leukemia can participate. And we dont even have a guarantee that will happen. Ridiculous but necessary. We worry all the time about so much. It's like taking what you typically worry about as a parent and mulitplying times a thousand. The worries and what ifs do not end. I am not minimizing what others go thru ( the good and the bad) by any means. I am just trying to give you a picture. There is such a spin on our lives right now it is hard to keep track of anything. To be honest-I have never used the calendar on my phone until now. I cannot keep days straight at all. I get them wrong every morning when I wake. Days mush together. I keep track of anything with chapters like which phase of treatment we are in or a significant day at school for Triston or what types of meds we are on that particular week. It all revolves around G-like characteristics. Then there are times I want to yell to the world, " I have a baby boy with cancer-can the rest of you shut up about your minute rantings!", but what good would it do. It's just that crowds make me feel like I dont belong in this world. I do not feel as confident as I was. I sure don't care what people think but I do feel pretty small in the world. I dont care what someone has to say about my looks, a glare at G or anything else. You are not the one living our ill life. I just hate the way I feel in it. I am focused on my family and nothing else and anything else is a nuisance and not a pleasure. I hate that cancer led me to switch that persective but it is what it is.

I make the time to do the stuff that has to get done-cook, give medications, clean, homework, hug and kiss my kiddos, etc but struggle to fit in the little stuff like trimming the kids' nails, switching out seasonal clothes/shoes, lil mommy projects around the house, decorating for holidays, etc. There are days it isn't fair that I have to force myself to complete the things that used to be automatic for me. There is only time for the HAVE TO's and the CAN WAIT's linger or build up. There was even a time through August and September that I thought we as a family were invincible to the "other things in life". You know those days that string along with little mishaps that you eventually pour out to your mom or bf was "one of those weeks of when it rains it pours". I hated that we were still susceptible to all that-the flat tire, broken light fixture, pneumonia, etc. For awhile I thought someone/God would KNOW we had enough on our plates and didn't need anymore. But I guess life goes on. Even those snowball kinda weeks. It didn't make me want to scream any less though. Cancer and other evils sure don't care about holidays or the kind of work day you had or anything else on that plate of life.

I will never look at anything the same as I did before. Things always seem a little fuzzy through my eyes. Like goofy glasses. Really it does. I try and see everything the way I did but it just doesn't surface. Something was stolen from me that day of diagnosis. I cannot explain what exactly but it happened. I feel cheated. Robbed. I didn't get to soak up the baby bliss of a family of 5 for more than 5 days. We didn't get to observe that brotherly connection in those first weeks as I had pictured it in my head. I know there will be "first moments" in Caden's life I may miss bc I am away caring for G. I know that as much as we worry about all our kids I worry of T the most. He will remember all of this. Will it make him stronger? I am positive it will, but with a limp or bruise along the way. That scares me so. Beyond description.

Believe me----I KNOW I am not losing a son. I was not delivered news of his death. I thank God everyday for that. Everyday G is here I make the most of. I drop anything anytime to see what train he wants me to push along the track or his newest antic of a proud, rambunctious 2 yr old. I do that now. He is an amazing fighter each and everyday. I am grateful every minute of everyday for him and how he carries it with such strength. I truly believe we gave him that strength. Without even knowing it for the past 1.5 yrs of his life we built up that strength in him soley by being the parents we love to be. Team Carper did that for him and it will be what gets him thru this-including his own additions of G-isms along the way. But, that day I feel I loss something. A Leadership Nurse I spoke to last night helped me realize this. It is okay for me realize and admit and I lost something that day. That conversation gave me the push to write this post finally. What was I hiding or hoping not to disclose? What did I lose? The taken-for-granted-life we had? His perfection? That vision of what I thought he might be one day? A piercing wound to his innocence? His sweet innocence. I dont know. Not fair is what I know. The unkown answer to why-why beat that question to smitherings...it doesn't change anything. That answer wouldn't make any of this go away. Any easier-no. I think I am better off, content knowing there was nothing Charito and I could have done to prevent this or change our situation. It happened so deal with it. And really-I am trying as best I can. Everyday I press on with our new sort of normal for the sake of my family. It is what needs to be done to get back to some sense of hope for an easier future. A future of family vacations EVERYWHERE. T wants to go to Japan, Paris, the Grand Canyon and the list goes on. I wouldnt want to experience those places for the first time without my 4 favorite boys. Through their eyes.

I am damaged goods and Grayson is a broken item but together we will get fixed. And something tells me we will be healing each other day by day. How could that smile or laugh of his not patch up a wound?!

The first few days of this hospital stay I did not have my laptop. I fluffed around on my phone thinking of old friends and memories or things I needed to catch up on. I remembered my old college friend Jamie posting a link about a baby boy, Ewan. It was back late September. She linked it to her post as a cry for prayers for this newborn. I am not even sure if she knew the family personally or the story touched her the way it did I and she was compelled to post it. I remember reading that story of tragic news and crying so hard. It was that gentle reminder that any severe illness is devastating but that each type has its own seriousness and individualization. It's own place on that spectrum of harshness, age, time frames, and pain. There are people hurting more than I but plopped into a world so similiar when it comes to a child, a mother and a fight. I read that link back in September and realized how often I had thought of Ewan since then and never got around to keep up with that beautiful blog. I messaged Jamie asking how he was doing and if I could have that link again. Her response froze seconds in time for me. That newborn passed away Oct. 4th. I thought back to what I was doing Oct. 4th while a family in Washington mourned the death of their 16 day old baby boy. I had to read the blog. I had to know how it all ended. I haven't been able to stop reading since last night, except to write this. A post that shares our similarities but most evidently our differences. I still have my baby boy. I have had 2 yrs with him w many more to come. But I cling to her blog bc it is so parallel to my feellings as a mother, as a woman walking this earth like you. I will catch up to the present day of her blog by tonight and thus far there is not one post that hasn't grabbed me and yanked so hard at my soul it aches. She is a beautiful writer and I couldnt express a handful of those familiar feelings better. You know my story and I hope you get to know hers. It is heartwrenching but poignant. Etched in my memory forever. You know our story and you will be able to pick up on those similarities pretty easily. You should know me that well by now. Any mom will see those red flags of heartache. Any dad will want to reach out to the computer screen and shelter all involved. Any person will hurt for the hurting. That is what we get for being simple humans with such complex adversities in our lives-no matter how long or devastatingly short they are. It is what is handed to us and left to us to conquer. And I will admit there are some days that I believe I was handed this for a reason. What God's intention is I am not sure yet but one day I hope it will all make sense. And believe me-there are days I dont even see that being possible, it hurts too much. The fog is too thick. Until then I will continue to jump from emotion to emotion-anger, pain, clarity, tears, laughter, pride and honor. Honored to have my golden boy in my life every minute. Until then I will wish I could find those lost receipts and change the paths drawn for us in these recent months. Until then I will work the hardest I have ever worked on anything in my life to fix us. It is all I know how to do anymore. Fix us. Be a nurse. Be a warrior. Be Grayson's mother-and oh what a joy that is. Being the mother of my three boys is the job I was meant to have in life. Charito and I were meant to lead our 3 into this life of love we proudly embrace. Love-it is both that simple and complex when it comes to your family in distress.

Please read Ewan's blog. The first few reads will possibly make you think there is no way you could read further but it is so worth it. His mother shines an unimaginable light on life and loss that as a mother I completely submerge myself in. Her words are priceless. His life- pricelessly precious.

http://www.team-ewan.com/

If you were wondering about Triston...

we made the best choice for school this year (not that Farnworth wasnt amazing! We just needed a full-day program for this brain of his & I just could not be one of the teachers in his class. Not fair to anyone). I was confident in our decision by the second week of school. This was meant to be. Not only are they more than understanding, compassionate and assistive in our situation BUT boy is he being challenged. Here is one of his Art lessons:A piece depicting the painting style of Pointillism (very small brush stroks w tiny spots of color), a method used by Georges Seurat in his painting A Sunday on La Grande Jatte. They learned that tad bit of info then used the method to paint their pumpkins.

First day of school

Fall school pic

If you read my recent blogs then you recall my rantings of a tough school week for T last week. Since then with the help of ACTUALLY being home, I have been able to assess the situation and his behaviors first hand. I just spent Saturday observing him and lovey dovey-ing him. I would say every 4o min or so he would come and hug, kiss or tell me he loved me. When we talked on Sunday. He shared he was scared and lonely and he missed me. We talked about how it is okay to feel confused and frustrated but NEVER ok to hit or touch a friend at school. How many of you just read that sentence and went " What?! Hit?! Triston?!" ? I KNOW RIGHT?! Not like my T at all. But after seeing his behaviors at home ( and my spec ed and OT friends will like this one) he was way out of whack! He was so jumbled. Even his sentences and thoughts were coming a mile a minute and you wanted to just grab him and make him step back a minute and take a deep breath. So hard to watch that coming out of such a confident and independent boy. It was only a matter of time when all of this caught up with him and last week he hit his own wall. It was very clear to me he was on overload. He was both internally and externally distracted, inattentive, his emotions and activity levels bounced all over, and he demonstrated difficulties regulating himself. It was like he was ready to explode with all the things going on inside him. I didn't blame him. But this is where Charito and I deserved our reality check. Yeah, we would have preffered the inappropriate behaviors to occur at home vs school but we were not the ones hurting that week. He acted out when his body felt the need to and there was no control over that in the moment. We take so much pride in his successes and things that come so easy for him. Intellectually it is like we are living with a 7 yr old and we forget that he is just as fragile as we are during this time. Emotionally he is still a 5 yr old dealing with events he shouldn't have to but must. I had to think like a teacher, mom and a 5 yr old to wrap my head around it all. He needed us.

He and I were way overdue for a date nite ( we were supposed to go in October and pneumonia took over and then Nov has been full of hospital stays so far) so I told him that was our plan for the day. Then it was not until that morning that I was able to get thru the mail I had missed while I was gone. Irony! In there was our first packet from SUPERSIBS!!! What timing! www.supersibs.org An organization dedicated solely to the siblings of patients w cancer. Aerum signed me up for it about 2 weeks ago. I flipped thru the packet and it was full of goodies all for him. A bracelet, stickers, magenetic feelings chart, workbook and story letter personalized from a fellow supersib himself. The letter happened to be a photocopies mass production from a boy named Spencer. T read it and now thinks this boy is his supersib companion. He tore through his kiddie packet with so much excitement. It was encouraging to observe. I immediately used the parent packet by clipping one of the "coupons" for a movie. I filled it out-

To: Triston

From: Mommy

Reason: Because you are loved, too!

He read it and that smile of his lit up! It was exactly what he needed. We went to see Megamind. Afterward we stopped at Officemax for him to pick out his own journal for home use. I explained to him that when he is feeling frustrated or crazy inside he can draw about it in his journal. His teacher was setting one up on Monday for him as well. Triston has always loved to shop so he was thrilled to pick up other little goodies to make his journal special. We had a great time. And once we were out and about or even sitting in that theater I saw my T shining through. The calm, well-behaved, happy, polite, affectionate boy we raised was still in there. He just needed the time and place to take a breather and escape it all. I did, too.

That evening he drew in his Feelings journal. He drew how he felt when I was gone and how he felt when G and I returned home. He has recently used the words sad, scared, lonely, frustrated, and confused ( and any new ones he is reading off the feelings magnet from supersibs). We talked about how it is always ok to feel that way. We cried together, sharing how it scares us both. How neither one of us likes how crazy our house feels. How we don't have the same schedule all the time. It changes when G has to be in the hospital. But I promised him we are trying to make our house feel safe and love is always there for him. For all of us. My lil boy cried in my arms and I cried with him. He needs to know I am feeling the same way he is and most likely as often as he is. I told him how proud of him we are. Proud that he was a good boy while I was gone (at least at home for the Lulas and Lolo). From what I was told about his afterschool actions he was pretty robotic about it. He followed his usual routines and laid low. Proud that he was thinking of his baby brother Grayson and called him several times that week. I told him Grayson missed him, too.

After I was able to gather my thoughts about T I emailed his teacher. Her emails during the week described how he seemed more impulsive than anything else. When asked why he touched someone his response was "I don't know". I truly believed he didn't know, as did she. He was also trying to control situations like board games-innocently trying to aid a friend to win but when the friend would not listen he would hit or take away a game piece. I know his mind-he probably saw the best method to win the game and wanted to help that friend and when his suggestions were not put into place he got mad. Well, buddy, they have to figure it out for themselves even if you have already. He appeared frustrated with a mix of feelings and was reacting w a hit to a friend or unkind words. How else was he to describe the buffet of emotions that seemed to overflow on him that week? It also appeared he was trying to control situations in the classroom. She was so understanding in trying to figure him out and confirmed we would tackle this together. We agreed on the Feelings Journal as a place to approach her and vent before he made a bad decision and "hurt a friend on the outside or the inside". I had even talked to him about it on Thursday nite and Friday he did much better. No hitting. And by Monday he walked away from every frustrating situation and went right to his teacher. They even put an entry in his journal. I was so happy he got it so quickly. I wanted him to understand that his teacher knows how he is feeling and it was ok to talk to her about anything.

My most recent emails to his teacher dealth with what I was able to observe in the first 24 hours of being home (as described above). I shared with her that it was clear to me he was overwhelmed with all of this. We agreed that it was school situations (situations that presented an opportunity) for him to try and control. And why not? My life feels out of control so I am gonna try and control what seems tangible at the time? Exactly what any preschooler should attempt when feeling out of sorts. What was there to try and control at home when he pretty much came home, peed, washed hands, changed clothes, did homework, ate snack, played and watched tv til daddy time? I told her we had every intention of attempting a normal routined week each week we are "off " from the hospital. I shared that we vented and I think it made a big difference in teaching him he is not alone in any of this. He obviously needs his own "breaks" built into his weeks now (especially during this phase of treatment with the every other week on and off from the hospital carrying us to January). And thanks to Alysa he will have visits with them as often as possible. And I cant tell you how much that means to me-a piece of his past, a more calming, reassuring time in his life that he can get a bit of weekly. He needs that. I would love to classes of some sort but it is not fair to him if all hell breaks lose and we cant go to a class. How disappointing would that be to him. I am going to setup ice skating lessons with a long-time friend of ours. I know she would be flexible enuf to fit us in at a moment's notice (which is how we run things these days-just call us the Can't Tell One Minute from the Next Carpers) . I set up his calendar with the weeks we should be at the hospital so he knows what to expect, NOW that I can almost prepare for this kind of stuff as opposed to last week's surprise hospital stay. I told him it may be different people watching him until daddy gets home but it is always someone who loves him. We would try visits for him to the hospital as well, as long as G wasn't in isolation. I just reassured him that it November and December are going to feel crazy inside but we will get thru it together.

T was still so ecstatic over his supersibs materials that he insisted on bringing them and his home journal entry to show his teacher. This made him feel special and IN CONTROL. It was already doing it's job...and to think he will continue to receive packets for years to come which are personalized to the stages of treatment or phases of emotions he may be encountering down the line. Which is exactly how I channeled his energy levels over the weekend. I saw his need to keep busy or lay low. When he was running high I put him to work. He wanted to help with the groceries like always but this time he wanted me "to relax and he would take care of it". I let him. Another opportunity for him to have some sense of control. It took him 4o min but he did it. Sifting thru each bag and running around the house sorting items in that room or this cupboard. He was having fun. He was his usual helpful self and IN CONTROL.

Since our talks there has seemed to be a relaxed sense about him. I give him plenty MORE chances than ever to help me out during the day. To make him feel like he is a part of something, not someone being tossed to the side while we fix his brother.

Charito and I have talked about how next week will effect us all. G and I are sceduled to be at the hospital Monday. If pattern repeats itself we are not home until Saturday or Sunday. Luckily T has no school Wed-Fri. Monday is his Thanksgiving celebration at school at 11 am. I asked clinic if I could come in around 1 pm as not to miss T's event. I figured what difference does it make if I had upstairs to be admitted for the rest of the week anyway. No hurry in me getting there at 9 am when I m not going anywhere, right? So I am going to head to his celebration and then pick up G and the 3 of us will head to the hospital. It has been awhile since T has been there and I think it would help him "know where we're at" if he sees how the process works on these type of Mondays. Let him see how it's like the clinic he recalls but then I wait to hear if Kwon or Goodell say we "have to stay". Let him see those procedures and have that mental picture of what these terms we have been using to describe the beginning of these stays plays out like. I am also going to make him a book w each person's pic. He has met "Grayson's people" several times but a character and location book may be helpful.

So that is Monday. Mamac will stay with Caden and I will have G n T with me. Daddy will head up to the hospital after work to get T. Then Auntie Mimi will stay overnite and care for T n C Tuesday and Wednesday. I just have to work the finer details for attending T's parent teacher conference Tuesday afternoon. I am just going to cancel my dr aptmt Wednesday and reschedule for following week. Then we hope to have a some type of lil Thanksgiving on Thursday at the hospital (heres hoping he isn't on isolation or it will be a lonely Thanksgiving for G and I). Our friend Laura dropped off some turkey decor that I am saving for T to help decorate G's room on Monday. Let him feel like he is contrbuting to G's room and taking ownership over the situation. The rest of the week we will figure out along the way.

As a side note, now T seems to think supersibs is a place for him to go during our "on weeks". He said to me last nite-"Mom, I need to pack a bag like you for Supersibs. Can you take me there? Do you need the directions?" I tried to explain that it is not a place to visit but a place for him to write letters and get mail from supersibs friends. That is when it hit me! He wants to feel like there is a place for him to go like G has a place to go. We talked about how Aerum will tell him more about Supersibs at the hospital and anytime he wants to be with G or I Aerum can get activities together to make him feel special at the hospital, too. I appreciated his thought process. It was both endearing and saddening. He was trying to figure out where he fit in all this.

I hated that feeling I had when I first read and heard of T struggling and with all my might I could not come up w a strategy. I got so consumed with the present, or G, or the next fire we had to put out that the teacher files in my brain could not be accessed. It was frustrating. I wanted to run to him and hold him so tight. To fix it all so quickly and I couldn't. I have my students' parents vent their issues to me all the time and as they do ideas just flow like crazy, so much that I have to pick which one to try first. But for my boy I had nothing. I had the help of Child Life to talk things through but I still felt like a failure.

It was not until I saw him in action when I returned home that it was so clear. Someone flipped that teacher switch. He was struggling to balance life, school, "work", hardship, affliction, adversity, uncertainty and untapped feelings just as his daddy and I were. I can't help but wonder to what degree each of us will be both tainted and strengthened by Grayson's condition years from now. Will Triston need therapy? Will Grayson? Will I? Will Charito? What other related services with Grayson need to get through school as best as he can? How much will Grayson remember? Triston by far will remember and experience so much. Will Caden just go with the flowon his happy bus of life and simply read of these unsettling events in our lives? I don't know, but I think about it often. How will each one of us turn out bc without a doubt nothing will ever be like it was. We can only move forward and make the best of what is new.

Well, whatever any of that means I am proud to say that this week has been a great week thus far for T. He is happy to have us all under one roof. He wants to help with everything and his new chores include feeding Caden and being the main operator of G's nebuelizer. My right-hand man. He continues to be the most delightful big bro...and passing on this tricks of the trade to the other big bro:

Using his tools to fix the swing!
And guess who doesn't mind all that attention!

Randoms

Started on Wednesday, Nov 10


Thoughts that have been roaming for weeks or just the past few days...

• Odd to think we practice his colors, letters and numbers in the hospital as well as home. He is good! He is into crayons, markers, stickers and aquadoodles.



• As much as he has been thru, Charito and I just discussed last week how his speech continues to grow. Longer sentences, clarity (other than the typical articulation sounds at this age) and humor. We can't seem to find the mute button at times. Even the hospital staff comments how talkative he is and cannot believe he just turned two. Comments like that make me feel good. It is not until I hear a comment that I am reminded that he is still plugging along at 2 yr old pace. No regression so far. Always a concern in the back of our heads.



• It's like straight out of a Halloween movie, a cartoon-the neon green goop or poison. Yup, that is Methotrexate for us-this phase's "poison" of choice. Check it out. So wierd to watch it pump through him for 24 hours straight. Now we monitor the levels remaining in his body to be sure it is be flushed out in his urine and stools. His level as of this morning is 69.19. He will receive the Leucovorin in the next hour.




• He had a fever of 100.6 as of 4 am this morning. That led to urinalysis, blood culture and CBC. Annoying blood cultures take a minimum of 24 hours and a max of 48 hours if they dont like what they see at the 24 hour presentation.



• His chest and lungs keep going back and forth between congestive and clear. They explained that since we are pumping him with fluids his lungs will expand. But they are pretty sure this is his asthma acting up. He does much better after a nebuelizer treatment and I think I'll be looking into treatments at home. I think this is something we will be battling all of winter.



• I hate that I have been unable to take advantage of the gorgeous weather. There were so many in October and pneumonia had us down. And now this week we are stuck in the hospital. No fair. No Morton Arboretum. No Botanic Gardens.



• Will I ever get back to my original blog? The "happier" one. The one I started when G was born. Still trying to find the right post to return to it with.



• What will G be like when he starts preschool? Healthier? Restrictions? To what extent?



• Will T need therapy one day? I know he's a strong boy but you never know what this is all going to do to him no matter how hard Charito and I are trying.



• I tell myself everyday that are situation could be worst off. And I REALLY mean it and believe it. There are so many "ifs" and "lack of" that do not apply to us. I am so thankful.



• Amy reminded me of how good a patient G really is. She jokingly called me to say I should be thankful G is as calm and oriented and familiar with all he endures at clinic and the hospital bc she and Neal BOTH had to hold Ayden down for a flu shot. I had to laugh! What a perspective.



• My mom always told me it took someone special to teach "special" children. I have held onto that phrase with each new student that entered my life (especially with the difficult ones!). I am grateful that I have taken my teaching strategies and used them with my own children. Not bc I wanted to turn them into students. But bc I really dont know how to turn the structure/expectations/prompts/cues "off ". Aerum brought his up to me the other night. She was complimenting the way Charito and I handle all of this. How we haven't backed down in our parenting style and still keep up with the rules and expectations that existed for G before cancer. I thanked her and explained how I do not know how to "turn it off". And besides-it works! It is bc of these strategies I have polite, productive, well-behaved children. All it is is my teacher mode with a consistent mommy touch. I know there are people out there who think we are tough on our boys but they dont live in our footsteps daily. We do what works for us and them. If we saw our kids struggling or hurting bc of our parenting methods we would have changed things long ago. And I know I am doing something right when I can spend as much time as I do in a place that most see as "doom and gloom" and both familiar faces and perfect strangers compliment us. It makes me smile from the inside out.



• I hope no one thinks I brag too much about what my boys have mastered on these posts. It's just me documenting all the positive. The things that keep us going. Those things are moving along the way they should be and don't have us worry all the time. It helps to be able to check this or that off the worry list.



• Grayson is so familiar with this place that I just mention our 2 yr old medical phrases and he knows what to expect. Like-"we have to go and see the blue birds" means we have to stay in the hospital on the second floor. Then I mention a few of our fav nurse's names and he asks if we go this way or this way (left or right) when we get off the elevator; "We are going to see Nurse Jennie" means clinic; "We need red blood" means a transfusion. A bracelet to G is his ID tag that he prefers to wear on his ankle ( I guess it's an anklet then, huh?). He has all the nurses wrapped around his finger that they allow him to access their handheld scanners and press the start button for his ID matches for meds. They gave him his own REAL stethoscope today! He tells them where to put his blood pressure cuff and heart monitor as soon as he sees a nurse pull them out. No complaints (unless he's sleeping then he is ticked off). So cooperative. When I say "We are going to give Elmo a hi-five" that means we have a long walk to the other side of the hospital (we walk past the gift shop w a huge Elmo balloon that he hi-fives every time). He knows when I say "Your tubey is not long enough" he needs to freeze bc his IV is hooked up to the pole and I have to catch up with him to give it some slack. We use words like "pokes";"listen, listen" for stethoscope use; "check ears" for otoscope use; "beep, beep ears" for thermometer use or he tells them he wants it taken under his arm if his ears irritate him; "take a picture of your heart" means a chest xray; he knows only Dr Kwon or Goodell can say when it is okay to eat following a spinal; and I prep the discharge nurse to say "1,2,3 Time to go Home" as our cue that he can actually walk out the door with no interruptions. These phrases make this process so much easier.



• Today Triston sang a song to me over the phone. I loved it!



• Grayson asked about Bryley and Triston today...he must be missing home.



• I had a great visit from a friend today and it was so nice to take that break. I don't do it enough. Thank you, "Speech Amy"-as Triston refers to you!



• I haven't showered since Monday morning and I don't stink like mad, yet. Do I, Amy?



• Charito had to email me Triston's hot lunch menu for me to yay or nay the list. So wierd to communicate that way so we could complete the order for the month of Dec.



• I may not be home til Friday or Saturday.



• I don't know what our plans are for any of the upcoming holidays and to be honest-we can't even wrap our heads around it. We have ideas for the boys and look forward to being "Santa" but I can't even look past next week in order to think about when the tree will go up and when we will shop. But I am excited to do this with my hubby...we are fun Santas. I learned the sneakies from the best-my parents. We use wrapping paper with Santas on it specifically for those gifts from Santa. I even write the gift tag w my left hand for Santa's signature. I love doing it! Charito thinks I am nutso sometimes.



• Today (Thursday) he needs a hemoglobin transfusion. He is sleeping soundly and we are hoping the creeping fever we have been watching all day does not reach the "official" temperature mark. He has not had one since Monday.That would stink-home later.



• I called to check on the baby just now and he was babbling up a storm so loudly! I miss him.



• Earlier today G had the chance to play bowling w Sam the dog ( one of many therapy dogs here).




• I kinow it may sound odd but I actually prefer not to leave the hospital room. There are so many volunteers and people stopping by asking if I need a break. If I want to head upstairs for a bit. First off, I know if you are a volunteer in a hospital, especially PEDS, you are a kind-hearted soul but I am sorry-I cannot leave my baby boy with a stranger. I usually wait til a nurse is in the room or Aerum or Alana from Child Life are here in order for me to run upstairs and get food. Otherwise, I just get sneaky with G's orders and leave some food for myself. There are refreshment down the hall 24-7 that I tap into as well. Leaving the room reminds me of where I am. I smell that hospital stench. I see other children suffering of one illness or another. I am reminded of the lines and waiting for elevators and other "normal" stuff outside this room and it is depressing. I would much rather remain in our room, take care of what needs to be taken care of and get home. I am in a better mood when I can stay here thinking and caring for our business. Don't get me wrong-I do get G out and about. There are so many opportunities for him. Child Life hosts so many activities. Pizza parties, art centers, play rooms, bringing toys to our room and offering play buddies. It just isn't as easy as you would think to walk outside the room and into those hallways.



• I miss taking Triston to school. I miss picking him up. I haven't seen him since Monday morning. He and I have a date for this weekend that is for sure!



• I miss the hugs and smooches from Charito. At least I got to see him tonite (Thursday). He brought us Portillos and hung out a bit-Thx to Auntie Najette for playing mommy to my other two boys for the evening.



• Sometimes I wish (even though I miss my home) that I could snap my fingers and find ourselves in a new home with a new beginning. Our dream house.


• It is Friday now and we are not going home until maybe tomorrow. That toxic level of 69.19 dropped to 1.6 by Thursday morning but then hung out at 1.1 all day. This morning it is 0.4 and they will discharge us at .1 or .2, it concerns them that the level seems to plateau at points and this is one drug they dont want hanging out in his system longer than it needs to. We will see if after more flushing and Leucovorin if it drops to that magic number by tomorrow morning. This is ridiculous but it is what it is. I just hope this is just a path the Methotrexate takes bc this is our first "batch" in this phase. It would be a very long phase the next two months if this is the pattern his body takes on with each "batch" every two weeks. We have already been here 6 days and that pattern would take quite a toll on all of us every two weeks. I know it is for a good reason before we are discharged but it sure complicates things at home, me feeling so far away.


• I have been crying off and on all day. T had a rough week at school and I cannot even express my pain, ache and tears for him. It was bound to happen. I know it could be worst but it still hurts. None of this is fair to him. HE is the one who is going to remember all of this. The scars this will leave on him. As much as Charito and I can plan, predict, prepare him for what the next steps are we cant protect him from the unknown. Like all of a sudden my being here what should have been 3-4 days but has turned longer bc of the unknown way G's body excretes the drug. Who knew? My poor to-be-5-yr-old hit his own emotional, frustrated, worrisome wall this week and I HATE that. He is hurting and I want to make it all go away for him! I HATE a lot of things right now!


• On the flip side T's teachers are great. We have been back and forth over emails since last night and she is brainstorming right along with me. She truly cares for him and understands the whats and whys of our situation. She is fully capable of walking my baby boy through this and I just hope it goes as smooth as he deserves it to be.


• I just had to ask my mom if it is normal for my hair to fall out everytime I run my hands through it IF I haven't washed it in 5 days! Apparently, it is. Good to know bc I thought I was going crazy.


• If it is not a fever we are hoping doesn't show up it's his asthma flair ups. He woke from his nap a bit ago sounding coarse. This environment does not help. Just got a nebuelizer treatment. We also receieved his nebuelizer for home today. A home-health assistant tutored me on it and off he went. It is a modern, compact contraption. I think I am gonna like it!


• G ate really well today considering he preferred Pediasure over most foods yesterday. He even ate quesadillas today. That's a first.


• Talk about irony and need-T's day was better today but we still have lots to conquer. I was struggling with this all day. Out of the blue Alysa offers to take him for a playdate today afterschool. He has missed his friend Jackson so much and vice versa. They have been buddies since Farnsworth. I was torn on what to do. Would it seem like a reward to T after the impulsive actions he displayed at school. But then it hit me. This offer from Alysa was for a reason. He needed this. An old friend. A piece of his past, before leukemia. And I was so glad I agreed to it. I guess he and Jackson continued to tell each other how much fun they were having with each other. He even told Alysa he misses her. Not only were T n Jackson pals at Farnsworth but Alysa drove T home everyday and set up playdates. He has always adored Alysa and had this bond with her. That mommy thing I could trust in. They are amazing! The irony-Charito later tells me this evening that this morning on the way to school T asked who was watching him afterschool. Charito told him Lula. T told Charito that Lula should go home to rest and Alysa should come and watch him. It was meant to be! He tapped into a time when things were not confusing, frightening, unpredictable, etc and shared that with Charito. So, Alysa and I brainstormed that whenever G has to be in the hospital during this phase (bc it will be so frequent) we will set up times for T to get out of the house and see them. That way he has some predictability, comfort, something to look forward to. I wish I could have given that to him this week. The unexpected setup of our arrival on Monday didnt allow us to plan anything. We scrambled around all week trying to get things covered. At least we an anticipate our next hospital stays with the hopes of no fevers or serious complications that change that timetable. We NEED to do that for Caden and Triston.


• I am trying to get G to relax now and he is wide awake. I am so tired. Another day of no nap due to so many interrruptions, my mini-meltdowns and thankfully Child Life Specialist "friends" to hear me out. There really is alot of support here that I can depend on.


• Til tomorrow (Saturday) for more ramblings... and hopes that toxicity level is at .1!!!!!!!!!!!! I have to adorable boys waiting for me at home, oh and a big brown boy too.
• We get to go home today! It is Saturday now and not without any drama. Hours before I was to hear what that magic number was Grayson developed a bloody nose. That led to him rubbing his lip in frustration and that began to bleed. Before I knew it he started throwing up blood. I yelled out to Nurse Christina. She saw the sheets covered in blood and yelled for a nurse to get his platelets numner to her NOW. We needed to know how long this might go on. If that number was low he was not going to clot quick enough. After about 8 minutes it stopped but each time he cried it started up again. By the time Dr Melanie (a PED resident that we are now in love thanks to this week's stay!) showed up it stopped and we were just dealing w a sad, scared G sitting in my lap, trying to calm him down. We hypothesized that when I used the suction on his nose when he woke this morning it probably loosened up dry, bloody boogers that had been sitting there for the past couple hours in his sleep. And once I nabbed thick, dry boogers from the front of the nose the blood started pooling and built up in his throat resulting in throw up. It had to have been building awhile bc he threw up blood and some brown stuff, most likely dried up blood. This explanation made sense bc his platelets number was good and his chest was clear as of 6 am. And all of the nebuelizer treatment have a tendency to mess with the flow of blood vessels in his nose, so we irritated things a bit. This all hit at 9 am. Then by 10 am when Dr. Kwon waked in to give me the final say on whether we could go home (the toxic number dropped to 0.03, finally under 1) G's nose began to bleed again. Dr. Kwon showed me the more comfy, quick fix way to stop the bleeding and wallah! It stopped and he gave us the green light to go home. I should be home close to lunch time.
• So, I am pleased to end the ramblings of the past few days of this hospital stay. We return to clinic on Monday for a simple blood count and then we are back here the following Monday to do this all over again. Even Dr. Kwon said he hopes "he does better next time" meaning that he hopes the toxicity level of the methotrexate does not take so long to leave his system as this week proved. I hope so, too! Cheers to no hangups before Monday morning or through the week.

Keeping Busy

Before I forget as a note to myself-this hospital stay G is drinking tons of milk on top of getting fluids like nutso. I am changing his diaper every 40 min. There was a trace of blood in his urine earlier today but it has not shown up since. He probably had a tough poop and that prompted some strain. He is eating bread with mayo and ketchup, pancakes w the same dips, rice, and fiber one bars. But not much overall. Sleep is all over the place with so many interruptions to monitor him.

But we did have a playful day!

Doctor in our future? He gets to take this one home! T is gonna love it. I can just see it now-he will be checking our vitals every 4 hours!

Made sock puppets

Painted

Practiced wearing our masks-and making silly faces underneath! (we are under droplet and contact watch again so we don the masks n gowns n gloves)

Fun Moments

Back in late September/ early October...

They love that hand-me-down castle from Grace and KC!

Grayson has been imitating T during homework time since the beginning of the school year. He is really into "colors" lately. My OT friends-take a look at that nice grasp! So happy to see it everytime considering these chemo drugs affect joint and muscle control as well.

Then one night during family movie nite Charito was working out in the living room. Grayson got on the floor to imitate. He is still perfecting his crunches!

We have also been trying our best to keep up with photos at home. Grayson wanted a hold of my camera and it is so fun watching him decide what he is gonna shoot. He walks around the room, looks around and says, "There it is!" before he takes the pic. I think this day he had boobs on the brain. He just kept following me!

The Good, The Bad and the Ugly

The Good

We arrived to clinic today thinking it would be an uneventful day and surprise, surprise-GREAT numbers. Now mind you-his numbers arent those of a "typical" child but I think by now you have figured out that these descriptors I use are "loose" and fit G. In fact we thought for sure given his INCREASED irritability this weekend he would need a transfusion today. But numbers were so good that we were given the ok to move ahead to next phase-Interim Maintenance. His ANC when we left the hospital last Wednesday was 200. We were able to get discharged once it moved beyond 100. Today it is 6, 410. WBC last week 200, today 10, 190. Hgb last week 7.7, today 8.7. I am done trying to guess around the numbers game. It is a waste of my time. No one thought his numbers would be like that today. Proof that his body is working at this. We are fooling that bone marrow!

No more delays like last week's "infection". We are a go!

By the way-this week marks WEEK 14 of treatment. It is going by pretty fast and yet so often I feel like our lives are moving in slow motion.

The Bad

No we return to inconveniences and nuisances. There was a miscommunication issue when this phase was described to us weeks ago. We were handed the time table depicting the "conventional" method of handling this phase of treatment. Drugs we were familiar with and a phase of 56 days. And yet it was not until this morning that the conversation related to the more preferred/recommended method was discussed with me via Dr. Kwon. It was quite the "frozen" kinda moment.

Weeks ago I think I mentioned we had good news and bad news to share. That news came from Dr. Goodell. I cant even remember if I shared it yet or not. If so, here goes again bc it's on my mind alot this evening. Goodell explained that typically with an older child we would administer radiation during Interim Maintenance. Now, we were under the impression that if the blasts had rested in his testes then we would be candidates for radiation. So, you can imagine how that word RADIATION scared us to even hear. We hadn't even heard that word muttered since Aug 2 when we asked about it as a treatment option. We were told no. But considering the next phase in treatment and as intense as it should be and his high risk characteristics with the ridiculous white blood count he had the day of diagnosis they had concerns. But after Goodell n Kwon discussed the pros and cons they determined that although radiation would better rid of the leukemia and its chances of returning it was NOT the option for G. He is too young. They did not want to take their chances. It was too risky for him. At this age (the big 2!) there is so much that is still developing inside him. Particularly his brain cells. They have found that radiation in a child this young can drop IQs up to 20 points. They can suffer from organ damage and other complications (not that we aren't at risk for that stuff from the chemo anyway).And often children this young suffer from developmental delays resulting in special education services and other therapies to assist their educational performance. During this conversation with Goodell Charito and I looked at each other and feared those possibilities. Yes, I'm a special education teacher but never does any parent want their child to be "imperfect".We were already fearful of the challenges chemo presented to him and radiation only increased those scars. Without saying a word to each other I knew we were thinking the same thoughts. We appreciated how they thought all this through. They considered his future, our future as parents. That was a relief.

But with that relieving thought came dread. Goodell mentioned that without the radiation there is a 15% chance the leukemia will return-and with a vengeance. It just does-worst than when it originally entered our lives. And on top of that-even if it (leukemic blasts) were never present in his spinal fluid that is typically where it is found when it does return. For the record, blasts have not been found in his spinal fluid to date (thus not impacting his central nervous system and brain function). This is what research has discovered over time. Now every cancer patient has the chance of it returning at some point. It is the daily fear. They give you a target year depending on the type of cancer and from what I have witnessed from friends and family you pray until that "safe year" hits and hope that you are still "safe" each year after that. So, we are left to pray that we are not that 15%. That it never returns after our current years of treatment. That the decision to avoid radiation pays off. In the end of that conversation, Charito and I were comfortable with that decision entirely. The alternative plan-an increase in Methatrexate dosages, the chemo drug administered into his spine. That was our plan.

So as much as I recall that conversation it was this morning's conversation that was not had by us previously. Dr. Kwon walked in with another form laying out the details of this new phase. It was titled Interim Maintenance but was not the one I had in my possession. He began to explain that considering we are not doing radiation he recommends another route for Interim Maintenance. The "high dose" method. This includes high doses of Methatrexate in both his port and spine. Along with other chemo drugs of course. The doses of Methatrexate are rather intense and therefore a drug called Leucovorin (new to us) is necessary (http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0000652). He would also be receiving Vincristine and Mercaptopurine ("more crap to pour in", you know that drug that is a pain in the butt to give bc he cant have dairy an hour before or after-It's baaaaack!). It is our best shot at protecting the central nervous system and spinal fluid,especially knowing how "fragile" G's numbers were when we entered this cancer world. He said most patients do well, as intense as it is, as long as they eat and remain hydrated throughout. It sounded like a no-brainer but I wanted to discuss it with Charito. Then the freeze came...the first dose of this treatment meant a 3-4 day hospital stay. And every two weeks thereafter. Whenever we were ready they would get a bed for us. Bed for us? That's code for being admitted, a hospital stay. I questioned what he meant and he further explained that the intense doses of Methatrexate were administered thru his port over a 24 hour period. Then G was to be flushed with fluids for days after to ensure his kidneys and bladder were excreting the toxins properly and we were given the Leucovorin as needed to counteract the effects of the Methatrexate. That meant I was to decide if we started today or next Monday. I had no idea that there was a possibility I would not be home for 4 days when I left this morning!

I called Charito right away. Deep down we knew it was good news to be able to move onto the next phase after last week's delay. We knew this was a lucky moment. I had overheard some stories of other kids in clinic near G's age and older that were due to start this phase near the same time as us and they were stricken with tons of "hiccups" and delays over the past few weeks, those much more troublesome than ours. It was a no brainer but as Charito and I think alike we drifted to the calendar and thought of the holidays. If we started today that would mean the following bi-weekly hospital stays would fall days before Thanksgiving and Christmas (of course, as always those tentative dates are dependent on his numbers and the progress of the phase -no "hiccups". Leaving us to wonder that even if we returned home the day before Thanx and Xmas-what condition would G be in? I asked Nurse Jennie for her honest opinion. Should we wait til next Monday? 1. For preparation sake 2. For the timing of the holidays. Her quiet pause immediately following my question made it very clear. Start today. She said not to worry about the holidays. Doctors are lenient when it comes to holidays. Take advantage of the good numbers today. It is a good start to a new phase-it's like having advantage points!

The Ugly

That was our weekend. The first SUPER crabby weekend for us all in 14 weeks. It really was unbearable. For the first time I could not tolerate G's whining and impatience. I really had to walk away from it before I yelled at him in mean way. It was the first time I couldn't reason with the "it's not his fault he feels this way" excuse. I blamed it all on terrible twos, got upset and shut down. The impatience he displayed was out of control. I actually started brainstorming ideas from my Spec Ed mental file to help him get thru this. Some type of visual cue is needed to remind him he has to wait. Wait for milk while I feed Caden rather than screaming the whole time. Wait for this or that rather than throwing himself on the hardwood floor and injuring himself. I hate what these drugs do to him. Our home dynamic.

Everyone of us felt like we hit a wall. Everyone was irritable, short, and tired. It was like we couldn't recover from the blahs of October and we were finally seeing it in our kids. I had a date night planned w Triston that I had to cancel ( luckily he didnt know about it)
bc I just couldn't function. I didn't feel well and knew I wouldn't enjoy it like I had been wanting to all these weeks. I was going to force it on two crabby people. Not fair to him or I. So it became family movie nites all weekend. Early bedtimes, too. It was the first time in a while Charito felt the need to go for a ride to clear his head of all the whining (all 3 kids-even Caden ! His schedule was all out of sync while I was away last week. I spent all nite Wed and day Thursday getting him back on track. By Thursday nite he was sleeping thru the nite again! Mommy fixed it. Then stupid time change messed him up again. And now I am away again and his schedule was off once again last nite. I'll have to fix that when I return later this week). I felt the need to escape into our bedroom and fold mountains of clothes just to get away from the noise. It was one of those weekends.

And here Charito and I were looking forward to a low key weekend to wipe the weekend away. Instead another stay at hospital. It was the unexpected, unknown, surprise aspect of it all that bogged us down yesterday. No time to prep. Arrange babysitters. Mamac and Titamel are staying overnite, taking shifts, etc with the help of Papac and his drop off and pickup service. But the last minute gave no time for anything. It is going to be a long couple days for all of us. Mamac and Titamel are working everyday this week (nights). So, they sit at our house then have to go to work. Drop this one off at this time, get that person there at that time. Charito taking one or the other home at 10/11 at night she can rest up. Not to mention my lack of prep for all the things I like to micro-manage.

But here's the wierd thing-on top of my crabby mood all weekend I couldn't shake this gut feeling. It wasn't a good feeling-motherly instict kinda thing. Like something was settling well. I had some downtime Sunday and prepped all of T's snacks for school thru Friday. I made his lunch for Tuesday and Wednesday (days I didnt purchase a hot lunch). He had no school Monday for Veteran's day. I felt this urge, as annoying as it was to walk up 2 flights of stairs mulitple times, to put away all the clean clothes, sheets and towels that had built up over the past 3 weeks. It was like I was nesting! I still had the gut feeling as I walked into clinic yesterday. This stay and the protocol of this phase explains it all.

The UGLY truth is how hard this has been in recent weeks. Pneumonia set a tone we are struggling with. It brought some mean thoughts to the surface. A tone that reminds us that cancer isnt enuf. It doesn't stop there. Every one of us is still vulnerable to other illnesses, accidents ( Like the one before we left for clinic, a great beginning to a Monday morning -G tripped over a train bridge while throwing a fit and down he went-face flat onto the hardwood floor busted lip and all. I was scared it would not stop bleeding but it clotted rather quickly and what better place to be headed to than the hospital anyway. It was just nerve wracking bc it took me a while to determine where the bleeding was coming from and how bad it was. His bottom teeth went right thru his upper lip. No stitches tho. But that is how I left T that morning. I yelled at him after leaving his trains in a walkway area which we constantly remind him not to do. It is still a living room after all. I yelled and threw the bridge and then later found out I wasnt coming home to him that night. That thought amongst others made me cry right then and there in clinic. I felt like the worst mom ever. That fear of abandonment I may have left him with upset me so much. I ached down to my bones ), etc. Life still goes on. We weren't handed the cancer ticket and told "don't worry about all the other negative stuff that life hands you-you got enuf on your plate-you get a free pass on all the other crap". We still deal w the frustrations of flat tires, broken light fixtures, a 5 yr old's fever, an infant's eye infection, the death of a dear friend's father, and other family dramas. We don't get to push the pause button on all of that. And cancer sure doesn't care about what else you have going on at the time. It's diagnosis and drama hit at any and all times. It is never convenient for anyone. No one deserves it. Whether it's crushing the most recent awe over the goo goo gah gahs of your new addition to the family, the emotional spirit of your 5 yr old, the twinkle in your husband's eye or ignoring your holidays-cancer is not kind. Yes, it pushes you to be more positive than ever about the future and what NEEDS to happen daily in order to get there, but in the mean time you find yourself crawling instead of sprinting thru life. I ulitmately can't describe it's depth and hold on us. I guess you just have to live it and I don't wish this on any of you.