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!