A Chill one-Week 29

Update on Grayson's week:
All was good on Monday after we returned from clinic.

Tuesday-Friday he was really chill. He would eat a bit near breakfast time, drink plenty but barely get off the couch. He was very, very tired. He would take a 2-3 hour nap before I got home from work. By 4 pm he was active, hungry and in a good mood. That was his pattern all week. His appetite and full on energy level did not seem to kick in til after T and I got home from school/work. Almost as if he needed that buddy system to get him going. Attitude n mood hit the opposite end of the spectrum while I was home. And as for food-even if he didnt eat much for others in the first half of the day I CAN ALWAYS get him to eat. Bribery and "First ____, Then_____" statements make mountains in this household. I cannot tell you how many times he heard "No tv / no music/no trains until you eat!". He made babysitters nervous with his lack of activity and couchbound behavior. I wasn't so nervous, as long as he was drinking, eating, fever-free, and if a nap is what used up that inactivity time so be it. His body needed it. Besides, I had my active guy for many hours upon my return. Again, his body may have been fighting something off.

Today is the first day all week that he has been his usual "good" self. Active all day long with special visitors like Auntie Najette, Eileen n Aidan. They had a blast w nerf "rockets " ( I hate the gun word, but I know I cant avoid it forever!) and so much more. He has been active, happy, crabby, demanding, hungry and thirsty all day long! Sounds like the G I know! He is still up and running about. Great day!

Caden's cold is much much better but I still may take him into his aptmt on Monday night to get the aok. Triston had another great week at school. He has been so excited to give me lessons on tooth decay and proper brushing. I also received a lesson on coins and the presidents,\. He is ecstatic to start a dino unit next week! He also loved Awana again this week. It cracks me up when we read his Spark book bc Grayson has some of the verses memorized and he mumbles them off his tongue to feel like he is a big boy like T. It is too cute.

Other good news! My mom is in town today! She will be w us for the week to help out with babysitting for the week. So excited. Big relief!

We technically do not have to go into clinic on Monday unless he is a little off. We will see what tomro holds in terms of that decision.

With a tiring week came some sad news. A dear friend of ours suddenly lost his father the other night. I was informed of two additional people in my life being stricken w cancer. And other family members were admitted into the hospital for issues still to be determined. It has been anothher difficult week, testing my patience, faith and sanity. More on that later. Please continue to keep us in your thoughts as we sort out more mud in our lives. And thank you, always!

Cuddly Moments

These two are quite a pair! Grayson was all buddy buddy with Bryley last weekend. She was his blanket, pillow and easy chair all at different stages of his day. LOVE IT! She is soooo good with the boys. She soaks it all up! Ah, those precious kodak moments. I adore their relationship with her. G takes on his role a little too serious at times. He has no problems with his chores like fillin her bowls and giving her treats, but gets so upset when she doesn't immediately eat or drink. He yells at her to "eat it, drink it!" and runs to me crying and tattling on her. It's that immediate gratification in him, I swear! But either way, he loves her and she does he. Couldn't ask for a better sister/daughter in our family (yes, we are DONE!).

Mind jumping Monday

My mind has been everywhere and nowhere since yesterday. So much spinning through the brain in the past 24 hours. So much to share, vent about, scream about and praise for. But for now I will talk of a few things. Ramblings.
Sleep was little last night. Grayson sat at that fever cusp again. One armpit said 37.6 C and the other 38.4C. Thiry eight and above is a fever for him. Ummm, I will take the 37.6 please! I was so tired I couldn't even recall if he had been lying on his side to offer up the numeral conflict but whatever. It sat there for a couple hours and he woke with no fever, 37.1. I was nervous for what it may be at clinic when we arrived.
I was more nervous for T. He had no school today. I took all my happy boys with us to clinic today and they were very well-behaved. But I was anxious for the possibility G may have a fever and Triston's plans to attend Aidan's bday party would be cancelled. We intended on getting in and out of clinic and meeting a friend in front of our home for her to take him to the party. I tell you, this family we met through Tball in the Spring (before diagnosis) and then ended up being a student in his class have been life savers many a times. They are more than generous to bring T home from school on days I can't get to him bc of the fast relief I need to offer to the babysitter of the day. And not only has their assistance been amazing but I mostly treasure the friendships that have evolved since. T loves his buddy and thinks his Kindergarten sister is fun, too. The parents are a really cool pair and one day I would love to just hang with them. The mom and I hit it off so quickly. Great people to enter our lives. But as soon as his temp was taken and read 98.4 F I was relieved! It also meant we were most likely okay after the fact G threw a tantrum and bumped his head hours before that cusp fever appeared. We could not help but worry of a concussion or bleeding under the scalp like times past. He happened to be at the brink of tired right after dinner and in protesting fashion he threw his head back at the idea of a nebulizer treatment and slammed it against the wall behind our bed instead of the pillows I am sure he had thought would be there. I am telling you, most of his injuries result from his tantrums and protests! Then we just waited for Dr Kwon to hear my rundown of the weeks events in the world of G and we could go. I pulled up to the house just in time. T had a blast!

But I swear, as I listed off the cusp-like fevers G faced last Tuesday and again last night plus the cold Caden has and the emotional wear the past 7 days have had on us-it felt as if a whole month had passed since last Monday's visit. So much has either reached the surface of my brain or emotionally sunk me. Kinda don't know what direction to turn in but at least knowing so much of it is good gives me some steering control.
Grayson received a dose of Vincristine today and a blood count. Counts were great in comparison to last week. Great enough to prove his neutrophils really are trying to fight off some bug and doing a good job so far.
ANC spiked to 840, last week 250
Hgb holding tight at 9.9
Platelets 448
Those numbers make me happy!

I asked those questions. We now have a map of Maintenance. We begin it on March 7th and it will last for the next 2.5 years. The final stage! Maintenance is given in 12 week cycles. Here is the rundown that takes us through May for now. 84 days from March 7.
Every four weeks he will receive a spinal tap and injection of Methotrexate.
Every four weeks he will get a push of Vincristine.
He will take an oral dose of Mercaptopurine (MP) everyday
He will also now take oral doses of Methotrexate several Mondays in a row.
Every 4 weeks for 5 days straight he will take oral doses of Prednisone (steroid)
And will continue his Bactrim, Nystatin and asthma meds
It will also be very important to monitor and encourage his diet. This is the time for him to pack on those healthy pounds and gain some inches!

The dose and frequency of the above depends upon his height and weight. In the beginning we will go in every 2 weeks (most likely March) and then by April visit once a month. The need for blood transfusions, colds/viruses/bugs/asthma peaks may increase those visits as well. But that is the general protocol. ANC will drive alot of this. Low counts determine alot. But it is nice to know there is a new type of schedule we will learn to adjust to. I welcome this new schedule. A schedule that maps out the next two + years. Bittersweet feeling.

I did ask what can we expect from this phase. They shared that because he has done so well there shouldn't be any MAJOR bumps in the road, but to never rule them out. The way he has paved his journey thus far gives quite a glimmer to how manageable Maintenance can be. Those are hopeful words. Princess Jennie has seen many kids grow their hair back in this phase. Boost up their energy a great deal (but if you ask me that hasn'tbeen too much of an issue for G!). But as always, when he gets sick and his counts are low he will def feel it. It will hit him. Overall, it just sounded promising. The worst case scenario fears have to remain to be realistic (see my previous post to know how those will never go away in both my mind and medically) but it is still a positive vibe I got from her. These words of hers made me cry and resulted in my mumblings of thank yous and love yous to everyone in the room-"you will get pieces of your G back". Go ahead and pause, you can cry bc I sure did. The moment was truly memorable. We are leaving behind so many stages of raw shredding n tearing into our lives and moving onto getting my G back, to the best of his abilities. Go ahead and cry, reader! Hugs were all around. I let them know I could not have done any of this without them. Knowing each Monday I would see my team of strength and dependency past those spaceship doors was more than I could have asked for on this journey. Today was one of those days! And his behavior matched all that discussed in that room today. He was cooperative, happy and absolutely lit up when he saw Aerum's face. It was priceless. This is how I remember Presidents Day 2011.

Week 28 part 3-Scary thoughts

Well, it is Sunday and I suppose we made it through another week. We are that much closer to Maintenance. I have alot of questions tomorrow.

But what does it hold? I mean this is where all staff have said "this is where you want to be!". Great, but it still holds unknowns. I guess those sneaky little critters will always be hiding somewhere for us, everyone. It is life but not the one I pictured.

Today and everyday I gain an intangible amount of pride for Grayson AND Triston.

G seems to beat through this or that everywhere we turn. And due to his age (that innocence and fair/unfair unawares) he just pushes along doing what he is supposed to do. I am still surprised we did not end up with a hospital visit this past week. How a body with so little helping him fight warded off two 48 hour stomach viruses and the cold/congestion that seems to be sticking to Caden, I don't know. I expected worst. But all that is visible at this point is nasty asthma acting up with a runny nose and cough, oh and don't forget the crabbapples when the highlights of a two yr old's life dont quite go his way--not enough chicken nuggets, no cheese sticks in the house, no more tv, not his turn with a toy or gadget, mommy leaves the room for a SECOND! Oh the life he is forced to walk in-not fair, I say!

And Triston-wow! The past few mos it has seemed the stressors of what Charito, Grayson and I face daily began to affect him. As it should. I would be worried dearly if I hadnt seen signs. But so far he has handled it well. Even though each little outburst, tear fest or ridiculous school behavior seemed to choke the breathe out of me each time, holding for what felt like minutes, before I could switch my brain to problem solve mode-I still cannot complain. It has only been a handful of events in comparison to what the rest of our little family has dealt with or how we have chosen to vent. Some methods were not as wisely chosen as others for us adults, I hate to say. But nonetheless, I am proud of him. Triston is not only facing these unwanted stressors we have been handed but the natural elements of development that are going to come whether he is ready for them or not. It just saddens me he is getting double-whammied that's all.

He is now 5 and with that comes an approaching (or already in effect) emotional growth spurt in which he is expected to test the boundaries of himself, adults and peers. I have already been faced with the potty talk (poop face; fart on you; oh, yeah well I will just pee on your toy then, etc), trials and errors of back talk, and the inevitable big boy crap tv battles. So, I am faced with what any other mommy would be putting up with and then some. But the toughest struggle with T is deciphering what is normal development and what is leukemia-life driven? And maybe I shouldn't spend time soring out that puzzle but the special educator/speech path/OT/SW/psych in me doesnt know how NOT to. My mind has to figure things out in order to approach the plan of attack. And sometimes it is simple, just let him (and me) have a good cry. Other times it is BOY stuff that I do not approve of in our house that needs to be nipped in the butt, immediately. But I still butt heads with the baby boy forever vs. big boy ahead. What to finally give into-the TV, commercialized material crap and superhero fight this, kill that language. I am trying really hard to find the balance between the facts of HOW a boys' mind is wired (that whole frontal lobe scientific stuff that I completely concurr with) and what is sane to handle in our world. I do not want to hold him back from anything but I sure want to continue to nurture the compassionate, sweet boy I do have, and have had for the past 5 yrs. Finding the balance, and him being my first, I guess is the key. A key to a lock I intend to find in the upcoming years (with the hopes I can use that key with Grayson and Caden when the time comes).

And as for Maintenance. It is that glory hole (can you tell we watch way too much Gold Rush in this house?) we have been waiting for. It is scary to think that as far away as this period seemed 7 mos ago it really did fly by. The staff was right. We did find our new routine to our new life. New ground. New friends. New fears. New experiences. New beginnings and ends. Each phase of treatment brought on a whole new host of questions and wonders in every aspect of our life. But with it comes the same. It should be what it elicits -"to maintain". I am more than grateful to embrace the fact that NO blasts (leukemia cells/cancer cells) have been detected since remission (Aug 29th). That is a splendid gift. But we cannot ignore what this invasive regime may do to him down the road, years beyond the cancerous clearing point. I will always have those fears waying at my side. And I know as parents there are always challenges we and our children will face, it is life. But I feel like we have an additional load and constantly wondering what it will unveil to us. I accepted my children are not perfect a long time ago. But Grayson's imperfect journey could lead to so many more imperfections. For example, Methotrexate-long exposure to it can lead to learning disabilities. And we know he has had quite the exposure considering he went the High-dose path vs radiation (catch 22 again). I know that my background would assist in identifying any issues early on but it still aches, just like any parent to see your child struggle. I am again, grateful for the fact that currently he is doing tremendous cognitively (and other domains as well). I don't necessarily drill and practice with him but we do make fun with every learning opportunity we can. I have not detected any regression yet and want to be cognizant if and when he does. I am even considering a full-day program for him when he turns 3 so we don't miss any gaps, if he is well enough to handle it. My Grayson is a bright little guy, with language booming everyday. After all, he does have a 5 yr bro he insists on keeping up with. Not to forget the mini bro that he keeps entertained with his clowney stage presence. I am so thankful, please don't ever doubt that in me. No matter how hun drum, moody doom and gloom I get at times.

I would like to think enough is enough. That after 3 yrs of Maintenance and we are finally rid of this journey we will not be called to another treacherous one. But as I have learned "living" in and out of clinic and the hospital-that is not always the case. But I can pray, can't I?

Pray is what I did. How could I not with the inspiration I was given yesterday? I attended a Women's Breakfast with my dear friend Alysa's church group. It was a memorable event last year and I especially was not going to miss this year's bc she was a selected speaker. I was not only going for myself but to cheer her on. And oh was it nice to get dressed up and walk out that front door for something other than shopping, work or doctor. Much of what she said resonated with me. She had us all in hysterics and tears from one minute to the next. But one thing she said reminded me of something I have already done, but undoubtedly needed to revisit. She reminded me of that question every mother (and father) ask of themselves in those early years of holding tight to that wee little one. "What kind of child do I want him to be?" I answered that question years ago about Triston and any other children in our future. I wanted compassionate, polite, respectful, and kind children. And just like Alysa said, "Anything else was just icing on the cake!" I wanted my kids to see that although it is easy to get wrapped up in our own needs- materialistic, emotional, physical or spiritual- there is always someone else in REAL need of the smallest gesture. And even if my kids are not actors upon those needs, at least seeing those needs and reflecting upon them is a step in the right direction, right? As opposed to being selfish humans taking up much needed space and air in this world? I really felt like that was more than enough to ask of them considering I come from a family that wasn't exactly super religious. But I saw what was missing in my childhood and hoped to instill it in my own life as a parent. At least the best I could, is all I asked of myself. I had to be realistic bc I still feel like a newbie in this life of God sometimes. So, here I am. Continuing to reflect as a parent, woman and wife. Some days of success and failure are pretty evident, others mixed up in the chaos. But still I try. I truthfully know of no other way to go at it.

All I ask is that you pray with me. Pray that God has a plan for Grayson (and the rest of G's clan-us 4). Please pray Grayson will not hurt more than necessary in order to carry on the wondrous life I know he has in him. And I KNOW he has it in him! There just cannot be any other way for this to end! Yesterday another speaker uttered that phrase I hate to hear -that our children should live beyond on us, not go before us.She had suffered that horrendous fate with one of her own. Another moment of strangulation for me in the midst of 300 women. That WILL NOT be my G. Pray that Charito and I as a couple continue to BE OUR BEST for our kids and ourselves bc honestly, since his mother's diagnosis, my team member has been crippled. Pray that Triston continues to crusade through life the compassionate, smart, strong boy he is. He MUST come out of this safe and sound. Oh, how I worry. Let him continue to think of others along the way, just like this-

Reading to Caden (for almost an hour!)

And Caden, well I have time to mold him. But the adoration he possesses for his bros, the laughter he finds in the simplest of life's moments and his pure happiness inside and out HAS TO MEAN SOMETHING. We are doing something right Babe!

I believe I have started my boys out right and I can only hope this rollercoaster (that seems never-ending) doesn't steer me away from goals as a mother. I do not want leukemia to take me down like that. But I will say this-I found some peace in this verse recently (and you know me! How often have you ever found a bible verse in my blogs!) Told you I am trying out some new tricks! Who opened my eyes to this verse? My dearest and first, Triston. It is the first verse he was to recite at Awanas (remember my posts of our dreaded tears and his happy return?). I internalized it a tiny bit as we read through his Sparks book but just enough to make sense of it for him. The framework of the book did a great job of it but I still added to it in our way. But when I heard it from a speaker's humble words yesterday, I cried once again. I believe the timing of Awanas, Triston's excitement of faith in school, the new found awareness of our faith and reality of how it is being tested right now, and my presence at that breakfast were all sequentially meant to occur. Hearing these words again, they were intended for me. Sacrifice, salvation and hope were found in them.

John 3:16

For God so loved the world

That he gave His one and

Only son, that whoever

Believes in him shall not

Perish but have eternal life.

I really do hope these new found traits remain in tow. I hope I can keep them beside me during our journey. I reminder of where I need to be or should end up. Together as a family. So much more to come and today I feel a little more prepared than yesterday.

Week 28 part 2

In case you were wondering...

G is all good today!

No fever of any sort since Tuesday. No diarrhea either. Crabby mornings since but rest of the day decent moods. Eating very well and still loving his milk. He got a shot of Miralax this afternoon bc he has not pooped sinc e the diarrhea bout on Tuesday. He is napping for up to 2 hours and going to bed without frustrations. He is actually a silly clown and literally laughs himself to sleep bc he is goofing off in our bed. So it appears he was most likely trying his hardest to fight off some type of virus and succeeded. Now all we have to do is make it to Monday counts and see what those have to say.

Caden had an irritable day. Hopefully just a cold or teething that is interrupting his meal completions. But he is drinking all of his bottles and emptying out his pipes. Right now he is laughing hysterically at T so that is a good sign. Maybe he just needed mommy time.

Charito is loving being home with the boys during the day. He needs it. But right now I have him on the play mat rolling, spinning and drooling all over the place. He is ripping the ABC s puzzle mat pieces apart with pride. He is content!

Triston has a bit of a runny nose but great mood. Awanas trial #2 was GREAT, GREAT, GREAT last night. I could not go with him bc Charito was working but lovely Auntie Najette played mommy eyes for me-she understands me so well. He remembered all his verses, received a "steel key" (for remember the key verse of the evening), vest and chapter book. Kinda like moving up to the next level. Before he left I told him it was okay to not know everything there. There is time to learn it all. But it sure gave him a boost to have learned the whole "mini book of verses in one week and carry around the same gear as all the other 5-7 yr olds next week. I am SO PROUD of him! I couldnt wait to present him w the vest and chapter book (that Najette slyly passed off to me at the front door when she dropped him off). His face exploded with a huge smile and he just HAD to put it on AND button it up right then and there. He immediately ran downstairs to show Charito. It was hard for me to fight back the mommy waterworks but I did it. Our tears and fears of last week saw a little rainbow last night! That's my big boy!

I am officially exhausted today. Drained of what little energy I put into myself to get thru the week. I reheated a frozen dinner I made last week (when I had my short lived cooking spurt) and we are all off to an early bedtime tonight. Friday here we come!

February 14-20

What a week and it is only Wednesday! We may not be doing anything physically exhausting other than playing parents and career builders but monitoring Grayson's every move and behavior is what pushing it to the max.

Most of his counts were good on Monday expcept ANC-a low 250. That means he does not have much helping him fight off infections and viruses. He was scheduled for a PEG injection (his left leg, I alternate the leg each time) and count check. His cough got pretty nasty on Sunday and he woke with a runny nose on Saturday. Even though his cough sounded asthma related we wanted to be sure his lungs and airways were clear. They were. Dr Kwon listened to his symptoms and mentioned he is most likely fighting off a virus of his own. We were to monitor his fevers very closely the next week.

He hovered at an official fever (100.3) for two hours on Saturday right before dinner. Then probably had one in the middle of the night Sunday but I did not want to wake him to take it. It obviously wasn't horrendous enough to upset his sleep like the one Halloween eve. He had no fever while we were at clinic nor the rest of the night. Princess Jennie said to keep an eye out bc if it continued he would have to come in for IV antibiotics (and don't forget the 48 hours fever free rule before we could go home).

It really is a double-edged sword. Of course we don't want him to have a virus or stay in the hospital (not to mention the stress a two day or more stay would place on us in our currently increased chaotic state) but you do want him to be okay. If his body can't fight any sort of infection right now then antibiotics and anything the hospital can do to "fix" it seems to be the way to go. But do we also give his body a chance to fight what little it can? And I think that is what is actually going on. His body seems to be trying to do what it can.

Tuesday was mind-worrying draining. AC and Uncle Tim were here with the little ones (thank goodness!) and for sure the only thing on Charito's and my mind was when G's fever would appear. My many phone calls indicated he was barely eating for them, but at least drinking his usual rounds of milk and a glass of water. He was playful and goofy, having a great time with them. He even took breaks to rest here and there. Then I was texted he had a fever of 100.3 (ear thermometer). I had an hour before I was home and his mood was decent so I waited it out. When I got home and thanked them for putting up with my rugrats I took it again using the auxillary thermometer-- 100.1. It sat there for another hour and then dropped to 99. And in case you were wondering-we did not give him Tylenol. He is not allowed to have medications or herbals of any sort without dr permission. His mood never worstened. I was able to get him to eat broccoli and hot dog and even 2 more glasses of water. He was not miserable. Just tired. Early bed worked out well, when I was finally able to get him to stop clowning around and jumping on the bed. He truly has mastered the art of stalling! That clown act will suck anybody in. And how do I not allow it? Here we are fear of fever changing our plans at any hour and he is goofing off! That smile and laugh are priceless and have to mean not all things are bad, right?

But seriously this fever thing is such a GAME! It plays with your mind. Leaves you on edge. It is not like Halloween eve when it was without a doubt a high fever and with no signs of going away. He was clearly miserable and had us really worried. It was like all he wanted to do was curl into a ball and wait for someone to make it all go away. He clung to me and would not let go. That night there was no doubt in our minds that the hospital is where we needed to be. But this fever here and there business is frustrating. If it appears at all it lasts no longer than 2 hours and sits at the cusp. And yet his mood is good, eating and drinking well. He is all over the house chasing and playing. So is this what an attempt at his body doing some germ-fighting looks like? Princess Jennie said Saturday and Sundays occurrences are possible with "these kids". Leukemia will do whatever the hell it feels like. But if he takes a slide down we obviously need to call and get in. So, I guess we are doing all the right things thus far. It is just so nerve-wracking when his ANC is so low. AC and Uncle Tim were ready-made nurses taking his temp every 20 min. And I do all these little things to ensure it is not a "fake" temp-like not putting socks on him, making him wear short sleeves, no blankets when napping, not taking his temp after cuddling. Anything that may mislead a temp! Crazy I know!

Today, Wednesday, so far he is well. No fever either! A bit of a runny nose. He woke in a good mood. I got my usual hug n kiss and "morning Mommy!" But then he was not in control of the remote upon entering the living room and tears and crabapples ensued. Charito was home during the day and said it took him a while to bounce back from those crabbies but he did eat some. He also napped. When I got home, to he and daddy hiding under the blankets to surprise me on the couch, (and Charito left for work) I was able to get him to eat broccoli, pork chop, popcorn and noodles. He is on his 4th glass of milk and playing with Triston right now. Cough is still there but I have been on that like white on rice. He has been getting up to 4 saline nebulizer treatments a day plus an increase in his ProAir inhaler to manage this asthma kick up. I refuse to let this turn into RSV or pneumonia if I can help it. But when ANC is 250 I don't have much on my side to help me out. We are constantly washing our hands (see my bloody knuckles as proof), changing our clothes as soon as we get home from work or school, constant laundry and cleaning of mulitple surfaces, Lysoling (it is a word!), showering kids as often as possible, and wearing masks when necessary...

ALL FOR THIS SUSHI FACE!

Awe, I just overheard him ask T for a hug!

And then he yelled at Caden for dropping his bottle-G, the little dictator (that does no wrong himself!).

Vday

A little boy I know was loving his

Vday treats each morning.

I loved writing all the love notes!

Week 27 February 7-13

Or should I say WEAK 27? Seriously! How much can one person take?! I can usually remember a chemo week (bc everything is in "cancer calendar memories" these days) by one specific moment-what Grayson's super craving was that week, his mood at clinic, a new found goofy behavior, introduction or waiting for reactions of a new drug-SOMETHING! One thing usually triggers a memory of a specific week of the past 27 but this week did me in.

The list is unbelievable and extremely negative...but please, read on if you are in the mood for doom and gloom bc that is all this is. It is all I can feel right now. This is what week 27 brought to me. I don't even have a title for this post other than Week 27 bc that is all that comes to mind when I think of the past 6 days. Simply Week 27.



I am not sure if these ramblings will make any sense...I am just typing away.

• Remember "Pukey Monday"? Well, that ended on Wednesday for me! And NO I am not pregnant! A yucky stomach virus put me at home for 3 days. All the while worrying (and moping like a zombie with a headache so bad slime was about to erupt from my ears) who else may get it (praying it would be anyone else but G). How nice of me to wish that on my children and husband right? And you know how it is...Moms still have to be moms. I snuck a few naps in but things still needed to be done. Meals, laundry, Triston's homework, fill in the blanks.


• My motherinlaw's surgery went well but left us with a diagnosis we were not expecting. We are still trying to accept it and deal with it. Things have been pretty quiet around here. The surprise and pain are just not necessary for anyone and yet we have to manage through it somehow. More unknowns, more fears. When is enough, enough? Honestly!


• With our emotions feeling uprooted and unprotected we still had to go on with our everyday. But I don't know what our everyday is anymore. Just when I think we have a grasp on a "normal" week, routine, anything-it is shredded to pieces by something more upsetting.


• On Thursday, I was told my uncle passed away. I hadnt thought of him in years. Memories, questions and guilt set in. My feelings are none compared to what my parents have to face in the upcoming weeks. He had been my father's bff since age 5. But I was flooded with memories of many good times. He was the one who ventured out to open a restaurant with and only with the approval and assistance of my parents. Before long the place became a family business without it ever intending to. That little Italian place brought out skills every one of my family members we did not know we had. My mother became a restaurant manager-a fantastic one at that! My father a brotherly sidekick and manager of the bar and anything else that needed mending. My brothers were bus boys and handymen. I got my first waitress gig. Had it not been "family owned" I never would have attempted it. I didn't think I would be good enough. I loved it! I really was a great waitress!! It came so natural to me. Sometimes I miss it. It really was a good time. We rocked that place. And the people that became part of our lives then (even the oddballs) are memorable, right Robin?! Vita Bella will always have a tiny place in my memory file box.


• I am tired of being told that this Leukemia path will turn us for the better someday. Because you know what-until then I am miserable. Yes, you have read how I see the positive in each of my days here. And I always will. Each morning I question what the day brings but promise myself to hold onto a happy thought to take to bed with me. I will not stop doing that. But leading up to that moment is alot of fear and disgust for my life. I absolutely hate what this and all of the added crapola has done to me and my family. I really don't know who I am anymore.


• Here is what I do know, as recently discovered this past week. I am old. No, really, I am. I went from feeling like this energetic mother of 3 for ONLY 5 days, to weak, numb woman. I feel aged across every square inch of my body. Drained of life. I wouldn't even know where purchase the right sized battery for this limp being. Do the kids keep me going? OF COURSE they do. I have to keep going for them. But when people tell me I have to do for myself-ha, I don't even know where to begin. The only thing I have done for myself is indulge in my chocolate and junk food cravings and the weight shows. Why else do I feel old? Bc lately the people I have had the easiest time connecting with are those in their 50s, 60s and even older. Woman who have experience similar struggles in thier lifetime. Lifetime! I NOW can relate my past 6 mos to what other women learned in many years. Okay, you could say-well now you are ahead of the game. A peek into the future. But why in hell do the men in my life have to pay the price for some early life lesson?! Or is it simply my maturity that allows me to relate to these women? They too are suffering the cursed cancer lifestyle. I am grateful I have these women to go to. Here we are crying over loss. Loss of self. Loss of independence. Loss of control. All due to medical curses. Talking of the unfortunate reality that loss of anything precious to you (be it a person or a piece of yourself) changes you. You never see life the same way. A wicked lesson. The truth that you life changes in a split second with one phone call or words muttered off a doctor's lips. Nothing is ever the same. But for god sakes I am 32 years old. What did I do to deserve this? We share those fears but it still baffles me about the age range. I find it harder and harder to return to my old conversations. Of kiddos, and dinner plans, the latest restaurants, family outings. I don't do those things anymore. And before you say BUT YOU COULD, it just isnt that easy. Not just anyone will care for a 2 yr old with a needle and tube hanging from his chest. His list of precautions and dos and donts would scare off many people. It is not Grayson that is scary, it is his condition. And I understand that and respect it. But knowing that makes our lives too limited in so many ways.


• And then because of the connections I have made with these woman and their burdens, I ache for them too. I want to help them. I know I have enough on my plate but I choose to "pay it forward" whenever possible. And so this week I made a point to and it made me feel good inside. It meant squeezing out that last bit of energy I have before bedtime to put it together but I did it. I had to. I have cried too much this week for their pain as well.


• Wednesday night Triston and I tried Awanas. My friend Najette had suggested it to us and we decided to give it a try. She truly understands how we struggle to give Triston normalcy and a sense of control in this crazy life of ours. Picture a religious version of boy scouts. I felt he needed something of his own and the night time period worked well for our schedule. It happened to be Mom night so I was able to stick around. I was very impressed by the push for values, character ed and religion. A mini version of CCD. I was sold. T was placed in the 5-7 yr old group with friend Aidan. Now it did not click with me how much earlier this program had started until I saw how many songs the group knew. They turn no one away so it was no big deal for T to join this late in the school year. It ends in April. T tried his best to imitate the motions. I could tell he was uncomfortable but he pushed on. I gave him a thumbs up. Then we played some team building games in the gym. Boy! Just that opportunity for him to run and be a boy lit up my heart. He was really having fun! He was given a book with religious verses and stories to recall for the following week. If he recalled the materials and shared the comprehension questions with his "teacher" he would earn points toward his vest and other trinkets. That made him feel pretty cool. But then the clatter hit. The group was instructed to get their gifts they made the week prior for their moms. I told T to stay back with me bc we did not know about "the club" when they made those projects. He tried to hold back the tears and could no longer. It hit him! All the things he caught onto missing out on up until this date became too much. He was able to dismiss them in the moments but not now. He wanted to see what they made and cried to me, "I want to make something for you, mom". Then it just poured out-"I don't know the songs. I don't know that boys name" and on and on. He sat in my lap and cried into my shoulder. He wanted to go home. I lost it. I that moment I didn't care that I didn't know anyone either. I just held my boy and cried with him. I told him I was sorry and that I just wanted him to have fun and try something new. I realized I was crying so hard I wasn't just crying for him ,but everything else that blew at me up until that day AND it was ONLY Wednesday! We agreed to go and see what the group had made. We walked across the hall. It was ornaments they painted. He wanted one to give me so bad. He kept repeating he just wanted to give me something. I told him he was. That he does everyday. With his hugs, smiles,etc. But it wasnt enough. He knew he had missed pieces to this new puzzle place and it hurt. I hurt him by bringing us there. I really had a hard time breathing at this point. I knew people were staring at us. I did not care. Here I was trying to give to him and it blew up in both our faces. We agreed to go home. As we walked through one room to get our coats he noticed lemonade and cupcakes. He asked for one. I told him of course he could. Then my sweet boy was sure to grab one for me. We ate them with dry tears, sitting in the group room. We pulled ourselves together and enjoyed our snack. After we made it back to the car I asked him if he had fun. He said a little. I asked if he wanted to go back. He told me he didnt think so. In that short drive home I convinced myself we were NOT going back. I wanted to protect him from those feelings again. I felt so miserable. But, as I talked with Charito about it later and shared the moments he did have fun and attempt to meet new kids I realized I needed to change my decision. As much as I don't want him to feel that way again, it was also important to us for him to see that it is OK not to know everything. That perfectionistic, answers come easy quality in him needed to be chiseled away at a bit. Charito and I knew that from our own experiences. That evening he and I discovered how often we had avoided events, places, people bc of those insecurities and we did not want that for T. Just bc we were afraid to fail and NOT be good at something did not mean we wanted the same outcomes for him. T needed to try it one more time. It was only fair, to both of us. Believe me, it wasn't easy for me to see that or ultimately agree to it even though it was blatantly obvious what needed to be done. I struggle with that. Great timing huh? On top of everything else, this is the age in which T is entering big boyhood and somehow we are teaching each other of insecurities and trial and errro. T and I ended that evening reading that verses and one of the stories. He loved it! I told him how proud I was of him trying a new place that night. We talked about how it made us sad, too. But I also told him we were going back next week. That everytime we try something again and again it does get easier. We shall see how it goes. Just another example of how emotionally painful motherhood is at times. You wanna protect all you can and other things get in your way.


• By Friday night Triston was throwing up and diarrhea. His pukey bug lasted the same as mine. How nice of me to pass that lovely gift onto him! He was well enough to attend the Monster Truck Jam with daddy and my bro n sis n Ayden today. I prayed he would at least be well enough to enjoy something!

I really was slammed with some type of yuck each day this week. The kind of yuck that pulls you like quick sand and you wonder when someone is coming to yank you out. Heavy. That is how I felt. A heavy weight making me weaker by the day.

But like I said, I find the happies in the days, too. Some days it is easier than others. Some days it is simply if I made it home safe and sound and without any Grayson injuries to fret about! Here were the happies I came across this week. Week 27 def had the doom and gloom but I will NOT forget these moments:

• I now call those happy, frozen moments in time (described above)- "fairies". It is those moments when you mentally freeze for a split second to remember it just the way it is before it disappears. Grayson and I had one Thursday night. He was cuddling in bed with me and he pointed over to my bedside lamp. He said, "Look, mommy! See them! See them everywhere!" I looked over my shoulder and I saw that he was referring to the dust particles seen in the light. I told him I saw it and asked him what it was. He replied, "Tinkerbell and fairies." It was such a magical, yet innocent response. His fairy moment created my fairy moment. Moments of magic I NEED to remember.


• Triston hasn't had much time to play in the snow, so I let him be free during the walk from the car to the house afterschool. Those are his daily moments to fashion that snow angel he's been eager to make. It has become part of our daily routine now. But on Tuesday, he was too adorable. He stays on the lawn while I unload his backpack and watch him from the porch. As I looked up he was stomping around in what seemed to be circles. Whatever. But then he exclaims ," I made you a heart, mommmy. Just for you!" , and there it was. He fancied a heart in the snow with his footprints. What a way to melt his mam's heart!


• Friday night G and I were cuddling again. We had just finished reading books with T. G started chatting away about the book and everything else on his mind. Then he got serious. He looked up at me and put his hand on my cheek. Then he said in the most adorable whisper, "Mommy, you a princess." I immediately hugged and kissed him! I asked him if I was a princess then what are you. He looks at me with a duh kinda look and says, "Sushi!". Well, of course! How could I forget! He then proceeded to remind me that Triston is my eggroll and Caden my rice. I thought that was the end of the conversation. But he added one more-daddy. He was really thinking about it. "And daddy, uh, uh...noodles!" I bust out laughing. Go where you want with that you perverted minds you, but I was just impressed it was still in the Asian realm of things. Hilarious. Now G tells T this little speech each day like he's tutoring him!


• And let's not forget Caden. His accomplishments for the week include getting a cold, eating like a pig, been holding his bottle for a few wks now and now SO CLOSE to sitting independently. He is lasting longer and longer as each day passes. His adoration for T continues but it is just as comical to watch G play big bro. He talks baby-ese to him and dictates to me what he needs. But I think it is funny that as involved as G is, he will NOT pick up anything Caden drops/throws on the floor. He won't touch it at all. He tells someone else to pick it up. And if Caden needs it back NOW, G demands you get it fast, "Hurry, hurry Caden need now!".

The boys continue to bring the good out in me. I dont know how else to see it. And as for work and the ridiculous report cards and paperwork, it is just a place I show up to in order to get paid.Insurance is crucial. I literally put in the barest amount of energy and nothing more. I only have so much to give daily. If you get more out of me it is bc I was feeling a bit perky. Kudos to you on that day! Take what you can get.

Pukey Monday

I will never forget this chemo Monday. I woke up not feeling out of sorts but pushed on. We got a late start to our day. Triston stayed home from school. He was feeling much better but I wanted to be sure he was fever free for 24 hours and he deserved his own lazy day without Grayson in his face.
He also got to spend time with Lula right before her surgery today. Oh, I guess I never wrote about that. I seriously can't remember the difference between what I think and blog and have executed in real life these days. We were told a couple of weeks ago she has lung cancer and today is the day the mass is being removed along with any other infected tissue. I can't begin to tell you how numb her news has made us feel here. I feel as though Charito was just "getting used to" our leukemia life and the idea we have sick guy and now this. I can closely imagine how he feels, only because of our Grayson. I dread the day I receive news one of my parents is not up to par.
But we move on. I would be lying if I told you we were fine. The stress has only multiplied. Fears as well. Anxieties higher than they have been for me. We now have the stressor of finding child care for a 6 mos old and a child with cancer. Not easy. She will most likely be recovering for the next 4-6 weeks. I KNOW how lucky we have been for several yrs now to have their grandmother care for them and come to our home. It has been even more appreciated and necessary since Grayson's diagnosis and my return to work. We are blessed in that respect. But not only are we scared for her, we are scared for what it means for our family of 5. Our kids are very close to her. For now Triston was told she has black spots in her lungs that need to be removed. I told him she will need surgery. He responded by letting me know "it must be bacteria". I told him it was kind of like that. I explained that with the surgery they have to cut her. We may not see her for several weeks. I could tell his wheels were spinning. He then said to me, "And after the surgery she will need chemotherapy." I told him we are not sure yet. I did not mention the word cancer to him. Just that her lungs were sick. He relates cancer to chemotherapy and medicines and Grayson (that is what his cancer world is) and if she does need chemo or radiation then we will tell him its a cancer like G's but in her lungs not her blood. One thing at a time for now.
We are just taking it one day at a time. Many days we do not have a babysitter, but luckily Charito's boss is allowing him to work a later shift in the day. On those days he would be home with Caden n Grayson and once I get home he will head to work. Should be interesting on our not-so-routine lives thus far. This lack of normalcy is taking its toll on us REALLY fast. I really don't care for anymore negative surprises in the near future.
And then there was yesterday. Yesterday was a doozie. As I said I wasn't feeling my best. G was surprisingly in a great mood seeing as he couldn't eat or drink in prep for another spinal injection and tap. He whined for food once we arrived to clinic but was easily distracted. I picked up some soup at the bakery thinking I just needed to get something in me to feel better. Curb that nausea. But after several hours of convincing myself I did not have to vomit I finally had to give in. I left in the middle of his spinal to run to the bathroom. I felt better afterward (don't we all?) but it was shortlived. We intended to head upstairs for a transfusion. Hemoglobin was 6.8. It held slightly above 8 all of January and finally sank. It was only going to drop after the chemo that was just put into him. He survived his spinal without me, thanks to a great team. We made it thru admissions and into our PEDS room just in time for me to throw up again. I was miserable. Then within 30 minutes G started vomiting. This went on for the next 2 hours before he literally fell asleep from exhaustion. He could not keep anything down, even though he has attempted to drink some milk and eat some crackers following the spinal.
By now it was 3 pm, he was asleep and had nothing in his belly since 8 pm the night before. We had a familiar nurse-Christy, who called down to Princess Jennie to doublecheck if G had had Zofran before his procedures. No, it was overlooked in thought that he would be okay without it. No wonder why he was vomiting. Everything but the administration of the AraC was a typical Monday, in which he can usually handle without Zofran. But the addition of AraC (he usually gets this at night through his IV and port with a dose of Zofran at home but bc I knew we would be home late after the blood transfusion I told clinic to take care of it then), lack of food n drink for over 12 hours, morphine n Versed did him in. No one's fault, just a snowball effect for him . It is just hard to watch. He was so miserable. I haven't seen him like that in mos. I should have read the signs (had I not been ill myself) -when he only took sips and little bites. Usually as soon as he is given the green light to eat he chows down. He did alot of licking his food or smelling it instead of eating. He was nauseaous and I missed it. But I am so glad we confirmed it was the lack of Zofran that led to his vomiting. We could say it was chemo-related and not whatever I was suffering from. That would have been a whole different mess.
He slept til 5 and was ready to eat and drink and he did plenty of that. Especially since we were able to slip some Zofran in him while he was sleeping. As long as he drank we would not have to stay longer for fluids. At this point we were not looking at getting out of there til after 8 pm. The transfusion took its usual 4 hours. He drank sprite, ate rice, blueberries and popcorn and watched plenty of Thomas. I was fine as long as I didn't move and stayed in bed with him, otherwise I wanted to vomit.
I got him to pee by 8 and we were outta there. And right before we were about to leave Nurse Shell came in. G and she exchanged hugs and giggles. It was a nice way to end a rough day. He was so tired but in a much better mood. I was simply exhausted. As the day went on the chills and body aches crept. I survived on no nap, sprite and saltines all day. I had no appetite. Each fast food sign we passed on the way home made me even sicker with thought. I just wanted to get home, administer the rest of G's meds, hug my other boys, shower and pass out.
I slept horribly last night. I kept having nightmares. Fears of one of my boys waking in vomit mode. So far all of them are ok. T is off to school. G is eating and drinking and playing trains (whats new?) and Caden is toughing through a cold right now. He woke pretty congested but in good spirits. I am yucky. Only way to explain it. A nap is in the works in an hour or so.

The escape!

We got dr. permission. We packed the bags (I am so out of practice!). We loaded everyone into the van and hit the bricks! Let's roll! To Toy Story we GO!

I was so relieved that NO fevers, rashes, other unexpected buzz kill kind of events occurred the night before. And even as we were driving to Allstate I felt as if I needed to pinch myself in order to truly believe we were out! Out as a family of 5!!

It was more than awesome!

We met Neal, Amy and Ayden in the lot. We weren't even there 15 minutes before I was suckered into $46 in cotton candy ( 3 bags with alien hats attached to them) and one bucket of popcorn! $46!!!!! But on a day like that you don't care about money. You just care about their smiles. And who am I to deprive my boys of the one special treat they devour-cotton candy! It is my weakness, too! Ayden and Triston were the first to empty their bags. Grayson had a bit but was loving the popcorn (guessing still sticking to salty taste buds from the steroids). He ate almost 1/4 of the bucket! I helped.

The two of them so mesmerized and yet so intent on piling off the pure sugar!!

Oh, little rice! You were such a good boy! I know you always are at home but you delighted me to the ends of the earth to KNOW that you can BE elsewhere, too. SO SORRY you don't get out much baby boy...but you had fun, too! So happy and alert and taking it all in. So this is what its like outside my home, huh?

Grayson' s face when he saw the ice arena was so memorable. And when the show began...forget it, it was priceless. Triston danced and sang his way through it. I have to admit-I was emotional. Just seeing them light up the way they did! A sad reminder of how little we do. But the happiness hit me in every inch of my body, seeing their faces, reactions and awe. The show was good, don't get me wrong. I really enjoyed it! The time we had as a family was what it was all about though. Being able to share it with Neal, Amy and Ayden made all the better. I think that really was what excited G the most. Seeing Auntie Mimi. He adores her to the moon and back!

And then add a trip to a restaurant and he was golden! I could tell that was most likely his favorite part. He misses it so much. We used to do it so often. He misses looking at his own menu, getting pop, participating in such an adult world. He was practically giddy over it all. It was another one of those priceless moments.

He played musical chairs with everyone. Had to be a part of all the action. Chowed down on calamari. He was a king!

Being out and about was a highlight. I hope for so many more. And now I dont remember what else I wanted in this post bc I started it a while ago. But the pics alone say it all, don't they?