My fighter, doesn't disappoint!

This past week I often recalled Nurse Jennie's words...

"you will get pieces of G back!"

It was such an amazing week. Yeah, I know he was not on any chemo drugs (other than asthma, Bactrim and Nystatin) but we have had those kind of weeks before. But never w this much vibrant energy and glee. I just know Grandma's presence had a lot to do with it. But Charito and I found ourselves commenting on the same evening, a reflection of those words above. Were his behaviors this week a snapshot of what Grayson could have been like all these months had he not had to endure "the chapters of his new life"? Is this what things would have been like?

I know we will never know the truth. I believe the characteristics he possesses would have been there either way-stubborn, persistent infants don't just fluff that trait away. It is who they are and they take that with them. We knew that was our G 7+ mos ago. And I just know it is that trait, and so many more, that keep him plugging away at it all. So, I guess I am not questioning who my boy is, but maybe what life would have been like without cancer. Without a doubt it would have held less heartache, drama, fear and gut-wrenching pain. But that is not to say some of that may not have been sprinkled in? I mean, look at all the other sad events that fell at our feet that past few weeks/mos. All things that are out of my control. And being a mom always brings some of that into our lives doesn't it? To me it IS THE MOST emotionally-involved job out there. Wouldn't you agree?

But know that I will always bear in mind that with all the pain came gratitude, a reality check to toss the crap out of my life, tighter friendships, new friendships, new and beautiful people influencing and guiding us, and more compassion and hearts of gold we could have ever imagined.

Blessings is what they are.

And through it all our little Grayson pushed us forward, each and every morning. He needs us as much as we need him. That will forever be the case and I am perfectly happy with that contract. I made that promise to him the first time I laid eyes on him. A promise that will never pass. Here's to you, our lil fighter! Mommy and Daddy love you beyond words.

Feb 28th-March 6th

The last week of Delayed Intensification!!!!
We deservingly had this week off from clinic! And in true G style-he showed us there was NO NEED for visits with his energy levels!
My mom arrived at our home on Sunday and stayed the whole week to watch the boys. It was so stree-free! I loved it! Having that consistency all week was a treasure. The week still held its usual hecticness (wakes, funerals, Caden dr aptpmt, Awana, errands, attempts to clean, visits back and forth to the house and hospital to visit Charito's parents, oh and I finally made it to my drs office for a urinalysis that was supposed to take place back in January!) but at least it felt turned down a notch.
I cannot tell you how wonderful it was to have her here. We miss her so! G had a blast being a king. I embraced her opportunity to get to know the boys inside and out. The daily ups and downs of their lives. I felt like I could finally share what we go thru each day in person. God, I miss her! Believe, there are all too many days I cannot believe I accomplish what I do as a mother without her around. And on those tough days-I remember she and my father are the ones who gave me that strength.
And you should know that G had a FABULOUS, FANTASMIC, INCREDIBLE week!!
Not only was he spoiled with "Mama" (Grandma) love and actions all week but he was spoiling us with his actions. He ate wonderfully- I am talking steroid-like quantity with mommy loving quality! Yes, there were many handfuls of spicy nacho doritos but he soaked up and even requested tons of veggies and meats-
broccoli, green beans, carrots, lasagna, chicken nuggets, Mcdouble cheeseburgers (he is finishing off three quarters of one!), chicken, lots of yogurt, cheese, and cheezit crackers (alphabet only, I couldn't persuade him/trick him to eat the Spongebob ones) and pizza.
I was thrilled! His mood was even better!! A one of a kind clown, running everywhere and doing everything. We filled the week with lots of music and dancing-one of T and G's favs. Caden even got into the groove, swaying side to side ( I have a great video of this!) and perfecting his "tick, tock dance". Grandma couldn't have asked for a better week with her boys.
Caden stole her heart again...he was charming her at every angle. Grandma discovered his first tooth on Monday and practiced his sitting with him. He has mastered it-the past two weeks he has increased in duration and wallah! He just beams with pride when he is sitting! I really think it is the gravitation toward being at the boys' level and a better view of their antics. Caden is their best audience! So, at 7 mos I have a sitter and a toofer!! Crawling is right around the corner for this kiddo-you should see him squirm his way around the play mat.
We even had more than one visit with Ayden, sleepover style. T had no school on Friday nor tomorrow. All this cousin time is definitely welcomed.
T and Caden are off to another sleepover tonight while I take G to chemo tomorrow. We have a busy day of port drugs and spinal planned. I hope this week goes as smoothly. We will def let you know.
Overall, it was a week of well spent family time-much needed and unforgettable. Miss you already, Mom!

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!

Made it

We made it through today. It was a bit nerve-wracking bc with every turn today his body pushed the envelope. Not Grayson. He did nothing wrong. Not him. I cant blame him. But often I do want someone/thing to blame.

We dropped off T at school by 8:15, ran to Mcds for my coffee, arrived at the hospital by 8:45, and made our morning stop at the in-house bakery. We stocked up on spinach and cheese croissants, lunch sandwiches and cookies for the nurses. Then a quickie into the in-house pharmacy for mommy's fix on Mucinex and we strolled into clinic after 9 am. We had tons of prep work to do in order to sedate him for his spinal tap, injection and list of other drugs.

As long as he was distracted he was in a good mood. Aerum did a good job of playing with him and reading to him. She is so great at keeping him occupied while we wait. Otherwise, any reminder of food and the crabbies surfaced. He was so hungry! He just could not eat before the spinals. He wanted his "bread" croissant so badly! And anytime she left the room I had to hear the same question repeatedly, "Where Armum go? She comin back?"

In order to even proceed with today's procedures he was supposed to have an ANC of 750. His preliminary count came up 680. Envelope pusher! We had to wait longer to have them his blood placed under slides to obtain the precise count. Wallah-over 800! We had the green light!

We moved to another exam room for Goodell to complete the spinal procedures. G giggled during the whole thing. He is usually smiley and lovey dovey, so this was a nice addition to the usual. Hilarious actually. I could tell the med student in the room was a little taken back w a two yr old getting poked in the most uncomfortable of places n positions and there he was giggling. Morphine will do that to ya! It was priceless!

As Goodell left the room afterward, G blew him a kiss and then caught Goodell's. More priceless moments! He has begun calling him "Dahder Dell". All day long he did this. So I will most likely be referrring to Dr Goodell as Dell in our posts. Look for it!

As soon as the room emptied out G was ready to eat! And he did not stop from that point on. Other yummies included cookies, cheese, crackers, some of my chicken sandwich on sun-dried tomatoe bread and milk.

Cookies and phone calls! Hanging out in the Day Room.

Once he was able to sit up and move after a 30 minute lie-down following the spinal we headed to the Day Room. I brought my laptop and Ipad to keep us occupied with games, emails, pictures and report cards. We had the place to ourselves. He had every toy at his disposal and everyone's attention. At one point I had to run downstairs to the pharmacy again bc his new chemo drug ( Thioguanine) is not available in most pharmacies. But the hospital carries it. I needed other refills as well, so Regina sent those downstairs, too. I stepped away and left G with Princess Jennie and Megan.

Another push the envelope moment while I was there-The clerk inputed my insurance info and G's bday was not getting approved. I assured her we had been at this for 6 mos and we have not had difficulties before. I glanced at the price on the bag while she contacted the insurance co and all I saw was $253.86. FOR 10 PILLS!!!! I told her she BETTER get a hold of them bc I have NEVER paid more than $25 for any of his prescriptions. Low and behold we find out she was typing in the wrong digits!!! Whew! W that nerve fest out of the way, I headed back to G. I coudn't help but think about families who have little to no insurance. What do they do?! A yucky reminder of why I have to work!

Upon my return there was G playing dr with Jennie n Megan. Too cute. Shortly after Dell walked in, "I heard Grayson was giving out flu shots. My turn G!". Dell sat with G for a bit and played doctor. He shared some more heart-warming stories with me. More good times I have to look forward to. More incredible feats his doctors will accomplish with him. I just know it.

As it approached 3 pm G still had not peed. He had been hooked up to fluids since morning and nothing. This was the exact reason I didnt give in to the naps we were both craving. I loved that we had the Day room to ourselves for him to move about with his IV pole and play to his heart's content. I had hoped the movement would get him peeing. A little after 3 he had a poop. Nice but not what we were looking for! Another push the envelope moment! By 3:45 it was time for Lasix. It makes him pee and FAST. Within 20 minutes we had 4 pee diapers all meeting his full day parameters. All day pee within 20 min! Goofy! We did our job and could now go home.

As I gathered our things, G followed Jennie to the treasure chest. Megan and I chatted about recent events in our family and how the kids are doing. It is chats like those that make me feel at home there. After a bit I realized G hadn't returned yet. He was probably shmoozing all he could get out of Jennie. I made my way down the hall and there he was. She commented on how particular he was being, how he clearly knows what he does and does not want. I replied that has always been his way. Precise and meticulous. Once he finally made his choice (a telephone) I got him dressed. He was so slow about it. Putting on a show for them. Dramatic emotional expressions, trying to get laughs out of them. He was truly trying to entertain them. I wish I had my camera right then and there. His next move will never leave my memory. He started to approach me to leave and stalled. I asked what he wanted and he told me hugs. I told him to go right ahead. So there was Jennie and Megan standing behind him as he ran to them and delivered hugs. They declared it the best part of their day. But as he walked back toward me he paused again ( and to be honest at this point I was really wondering if we were ever gonna get out of there!! ). He glanced over his shoulder (note-all the while he is delivering happiness he is also playing shy guy with head down and fake pout faces in between deliveries. Again, quite the two yr old production of Faces of Eve!) and looked into exam room 3. There was Dell on the computer observing and commenting the past few minutes of exchanges. I nodded at G. He walked into the room and held his arms up for Dell. They embraced for THE most adorable grandpa-like hug, G's head on his shoulder and everything. It lasted what seemed like forever. A moment that truly felt like it froze in time. You recognize those kind of moments more often when you receive life-altering news mos prior. You don't find them, those type of moments. They find you. I peered at Jennie and Megan and they were teary-eyed. I was, too. It was THE BEST way to end a long day!

I was so proud of my boy as we headed home. I thought about how much he has had to endure. And yet, he can still pass out hugs like candy to those that HAVE TO deliver such pain at times. These people are such an integral part of his life. Our lives. The way he has welcomed them into his world continues to amaze me. I'd like to think that even though so much of his world has been all about cancer these past 6 mos-I have instilled some qualities in him that keep him trucking along and spreading his love along the way. He has obviously touched them in more ways than one. And all I have been doing to express my gratitude is pay it forward. Things like bringing them cookies, baby presents for Jennie who will pop in 7 weeks, and hugs.

I have to say-to think of why we were where we were Monday (get that mouthful?) and how we made it through-we are so lucky. I still believe that. We were gone from 8 am to 6 pm but we had a great chemo day together. A great day with great people and my GREAT G!

The week(s) ahead-

we started the Thioguanine (Tg) Monday night. He also came home with his needle in (port in access mode) for me to deliver AraC thru syringes n port this week and next (M-Th). So we play the no milk an hour before and after Tg and possible nausea from AraC games. Zofran will be our bff the next few weeks. I donned my chemo gloves and gave him his meds right before bedtime last night (by flashight source bc we had no power til past midnite). We are going to follow that routine to limit nausea and enforce early bed for him to power up his energy levels. We have begun to see a pattern (dare I say it!) in possible dips in platelets on Thursdays and/or Fridays so any and all rest he gets is important. He is completely aware his "tubey" is in and gets irritated when it is not tucked into his pants (the IV tube that hangs from the needle attached to his port). In fact, I had to apply more tape below the Tegaderm so the tubey stayed put higher up on his chest. I and he don't mind it dangling below his belly button but more tape assures the needle won't budge. He YELLS to me "fix my tubey!". I am grateful he has learned all these terms to indicate his needs. He even bumped his chest on a toy earlier today and told me his "Port hurt, it hurts mommy. I bump!". I took a look at it and there was no red or irritation or swelling. But he was good to tell me. So, of course we are keeping an EVEN more watchful eye on him and his circus-like actions while his port is in access. I will de-access him Thursday nights and the nurses will put another needle in Mondays. So far so good with this phase. Oh, and I desribed the tip-toe walking to Dell and he stated that if it was that temporary (24 hours) it was possibly a pulled/strained muscle or chemo doing it's bad stuff on his body. If it occurs again for a longer period of time I will have them look into it.

We made it thru the ups and downs of steroid withdrawals and body aches and pains last week and are beginning this week 26 pretty well. A snow day like today perks things up, too! We will continue to plug along and I will keep you all posted bc it has been my best form of therapy. Thanks for reading! Hugs your way! Now naptime before snow play!

Saturday morning ramblings part 2

By late afternoon we were able to get G to place both feet flat on the ground and tell him "flat feet, flat feet" to remind him to walk that way. He needed cueing for a couple of hours.
It was like he needed a reminder that the pain was gone and the auto tip-toe walk was not necessary. Odd. Still eating and drinking well. Being a goof as usual.

He and T are in the basement rocking to daddy's new receiver, listening to Paramore n BOB Airplanes & Eminem n Rihanna Love the Way You Lie. Two of T's favs for a while now. Thanks alot daddy! Even G is singing, "wish ry noooww". Cracks me up.

So the day did get better. The worries minimized as the day went on.
But now I gotta go save them from California girls-Katy Perry. Racey, raging, teenie-bopper, hormone-boosting tune, not needed in my home!

Keep your fingers crossed no crazy fevers or other crap creeps up overnite so we can all go to Toy Story on Ice. Even rice baby Caden coming along. I insist he gets out, too! The kid seems to only inhale Bryley fumes, my gross leftovers and sad attempts at remembering how to cook, lysol and poopy diapers. He needs fresh Chicago polluted air, just like the rest of us! To the ice!!!!

Saturday morning ramblings

January 28, 2011-my catch up of the week. A blurry mess. I am so tired. Another week of being pulled in a million directions.

After his steroid withdrawal aches on Monday night, I returned from work Tuesday and he was still pretty chill on the couch. But by dinner time he was walking around. Wednesday and Thursday were like 2 weeks of couch time rolled into two ACTIVE days. He had so much energy and conversations to get out! It was alot of fun to watch.

But then on Friday, he was on the couch most of the day. Not bc of his mood though. His legs. As we were getting ready for work/school that morning (oh wait that's right-Triston did not go to school Friday bc he came home from school Thursday w suspected pink eye. It was discharging by bedtime and when he woke Friday), Grayson was climbing out of our bed and fell back on his butt bumping his back on Caden's swing behind him. No injuries it appeared, just whines.
But then I had to put the puzzle together after work Friday. Mamac said he was more often on the couch and when he did move he would scoot around on his butt playing trains. I noticed when I tried to put him down in the basement for a "change of scenery" for the boys to play. He remaind on his tiptoes. He would not flatten his foot. I tried to stretch out his feet, flex and such and he was not liking it at all. All I could think of was that he injured himself when he fell that morning. This behavior continued all night.

And then I was not sure if I was over analyzing everything. When I changed his diaper he was a bit red at the body base of his penis ( I guess the lower portion of the abdomen?). Irritated I'm sure from the nasty poops he had all day. But I couldnt help but question if it swollen. I just don't know.

Then it hit me this morning. He prob fell onto his butt yesterday bc when he slid himself off the side of the bed his feet DIDN'T go flat. Those toes stayed put and it threw off his balance. ???? It is just odd to me to be running and goofing off all day Wednesday and Thursday-get my hopes up that he is in back in action -and then overnight his legs tighten up on him like this. It could be chemo or steroids still doing their thing but I dont know. I am soooo on the fence of whether to call the docs.

He is in a good mood. Peeing and pooping. Eating and drinking very well. It is just that it hurts to walk. Something we have experienced before. Will our phone call erase our plans to take him to Disney on Ice tomorrow. See my bro n sis n Ayden that I haven't seen since Christmas? Can it wait til Monday since everything else about him seems fine? I know, I know...you are prob like "it it's bothering you that much than call the dr!" I get it. I just can't express how crazy I can seem and feel at times.

Cancer plays these mind games. But the time I had Grayson, I hardly questioned much about my motherly skills. I was confident in my choices, evaluations, gut feelings. Mothering a child w cancer is so crooked. When you are pregnant all you pray for is a healthy baby. You get past the first time mom fears, first year ifs, first year milestones, first food allergies and from then on the "health scares" seem to be behind you. Yeah, we are always gonna fear those crazy parent things like kidnapping, car accidents, serious injuries, etc. , but overall we think we are in the clear. Then a simple blood panel rips your baby boy of his health. Somewhere in a 4 week period, a time when I was to be enjoying the summer after a insane school year and awaiting Caden's arrival, the Cancer Gods chose Grayson. WHY?! And for everyone involved in his healthy medical life (all doctors and staff and myself in the regular ped dptmt) to be as shocked as we were still makes it difficult. We all knew I had a healthy baby boy. But at some point in July Grayson was sucked in. Those illnesses you pray will never consume your child got mine. I can't help but wonder on what day in July it went bad. What day did his white blood cells spin so violently out of control? And since that day of diagnosis I do question myself as a mother. I analyze and evaluate over and over again. I know we didn't do anything to give him cancer. I KNOW that. But, well but.
So now I watch Caden like a hawk. Triston like a hawk. I did the exact same things w G as T in that first year and a half of life. Is it okay to do it w/ Caden? Caden is just as easy-going and happy and amazing as G and T were at that age. Will he be okay?

Maybe I am not expressing myself clear enough. I don't know. I just know that I worry more than ever about it all. I guess it is just more of what Cancer has done to me.

January 25th

Last night was a rough one. We went from encouraging words at clinic ("You are doing a great job as a mom, struggling with all this"; "He is really trucking!"; "He is hanging in there so well!") to a nerve-wracking evening.

Remember how I mentioned the lack of couch removal on Grayson's part the past week or more? Well, it was about the same when we returned home. I continued to monitor his stools and push the fluids and food whenever he was interested. And then all of a sudden 7 pm hit and he was much more whiney than days past. He really was uncomfortable. I figured he was super tired and brought him upstairs.

For the next 5 hours he was miserable.

His whining was indicative of pain. I mean, EVERYTHING aches when he is on any steroid , but this was worrisome. In the past, just being comfy and relaxed on the couch or bed was enough to pass the aches and pains. As long as he didn't walk much he didn't seem to overdo it (at least that is how he seemed to handle it all). He had always been able to tell me what area hurt him in particular. Last night he just repeated over and over "It hurts, mommy it hurts". It was so hard to watch and listen to. It was clear it was mostly his lower body bc he kept adjusting his body as if to push away the pain through his legs or hip or butt. I kept asking him if it was his butt (freaking out that his constipation issue led to a tear w/ internal bleeding!). He said no.

This went on for 5 hours, every 10-15 minutes. He would get comfy, you thought he'd fall asleep and then he would contort his body to push away pain or whatever was going on. Then once he fell asleep it occurred every 40 minutes. He wasn't in overwhelming pain, with screams and uncontrollable rants, but it was different from what we had experienced thus far.

So G and I did not sleep much at all. He woke in a decent mood but ready to hit the couch again. I made him walk to the bathroom to try potty, put his clothes in the hamper and to the couch once we reached the main floor. He was eager to rest. I thought for sure he would take his first nap within minutes of my departure. I determined on my drive to work that I was most def going to put a call into his nurses. I needed to find out if we could administer some pain relief, just in case this new reaction lasted all day long or stole another night of sleep from him.

By 8:30 Mamac called me stating he was shaking. I knew he had received his Pro-Air from Charito before he left and sometimes that can do that to him. It is a steroid. It was occurring whenever he held his cup to drink his milk. As we were on the phone it subsided. As if I dont have enough to worry about from work. He is on my mind all the time! I worry so.

Then she called to say Caden was gagging. Huh? I told her to feed him and let me hear what he was doing. Ah, he was simply reacting to the first nibbles of home-made breakfast---pears. Much diff texture than store bought. I stayed on the phone w her a bit longer and before she knew it he was chowing down. It just took him a few bites to realize it was the same fruit he has always enjoyed just felt diff on that sensitive tongue of his. As if the mommy guilt isn't bad enuf in me for NOT home-cooking Caden's meals, here he goes reacting not so excitedly about IT WHEN I DO! I can't win! And to think I was going to make him some carrots tonite!

When I finally got the chance to call the nurses about G and his sleep-deprived evening I was so relieved I did. Nurse Jennie's first question was to confirm whether we had finished up our Dexamethasone Monday pm. Yes, we did. She continued to explain it as withdrawal. His body is simply going thru withdrawal. How sad for my 2 yr old. Think about that! That little body. Ugh. She asked if he was having some shakes at all in his arms or legs. I concurred. Yep, withdrawal. And she agreed that he has been really good about locating his pain points and from the kind of night I described to her it indicated that everything was going at him at once. Very typical reaction, just not one we had been a part of before. She told me if he seemed to be heading toward a similar evening tonight we could give him some Tylenol. With fine print instructions of course, it is never that easy! We can only give him the Tylenol if he did not have a fever, even the slightest. We don't want to mask anything else brewing. An epsiode like last night could go on for a few more days til his body adjusts to being off the steroid. My poor guy!

And we also talked about stools. As long as the blood I see is bright red it is new blood. Most likely an irritation tear or swell he caused while pushing on Saturday and Sunday. If I see dark red or black blood then that is a sign of internal bleeding (old blood) and we need to call them immediately. New blood is better than old blood. Got it. Now let's hope I don't see much more of any blood!

But this story really does get better! By noon Mamac called me again. But it was actually G on the other line. He gleefully told me, "I play trains mommy! I walking in the kitchen! I watching movies! I eating and eating (and then named all he had eaten). I use my muscles!" He sounded great! He was so happy to talk to me. And before he handed Mamac the phone he said, with his sweet voice, "Mommy, I love you so much!". The tears were forming when he was sharing his day and those words turned the faucet on! Oh, I love my sushi!

I left work on time to help out in Triston's classroom. And to take a peek at his Feeling Journal (the school version). He shared some deep feelings with Mrs Curtin in school yesterday and with myself on the walk home. I wanted to assess the situation. After our chat we headed next door to the other 4 yr old prek room for their combined cooking lesson. It was really nice to be elsewhere. Triston had no idea I was coming and he was surprised to see me. Happy, too. Another guy I missed so much today.

As soon as we walked in the door Grayson lit up! My boy was back in action. He has been taking his time moving about the living room. It is pretty clear he is not as achey as he was. He has some trouble getting up from a seated or squatted position (we have seen that before) but walking around just fine. He tried to run and dance when a fav song came on but immediately fell. He even has some trouble lifting his foot up to step high. One thing at a time baby boy!

Oh, and I was also greeted with the typical ginormous smile from my littlest. Caden always spins that frown upside down! He cracks me up. The one who has no clue that my mind raced in a million diff directions today, I worried from here to the Arctic, and my emotions had to remain bottled up for the most part. He is so innocent, yet so therapeutic with one simple smile. Luv him!

And just bc we are off the steroids DOES NOT mean we say goodbye to the steroid - chunk cheeks just yet,

Gotta love it!

That was my Tuesday...it felt like a whole week wrapped into one day. How was yours?!

AND I got one reprot card done...13 more to go!

Week 25

Jan 24-Chemo Monday
I was prepped for a transfusion day, just in case. Relieved to know it was not needed. His counts are holding strong.

WBC-1.87 (went up a tad)
Hgb-9.1 (came down a bit, but tight number considering what his body went thru last week)
Platelets-433 (went up!)
ANC-690 (was 580 last week, so nice to see)
Weighs-20.7 pounds (Gained 5 oz in a week. Think it was the corn dogs?!) and 33 1/4 in length

All the descriptors of his past week that I gave to his drs today 'are to be expected'. Nothing out of the ordinary. They were pleased he was eating n drinking. Number of naps did not surprise them. It is what this phase is all about. Very similar to flu -like or arthritic aches n pains. Thank you, steroids. In fact, my rundown of Thursday thru Saturday was assumed to be what Charito and I were thinking as well-a dip in platelets. But they are looking good today (all relatively speaking of course).

The best news of the morning-we can take G to see Disney on Ice this Sunday. Even tho he is borderline neutropenic they all agreed he needed to get out. Why deprive him if he is not vomiting, bleeding or diarrhea. They probably also figured he will be in access mode all next week which really limits his physical activity, so why not?

But here is a lowdown on our morning-
Grayson and I were pretty restless last night. We were up just cuddling from 1-3 am. He has been starting out the bedtime in his own bed for weeks now but by 3 am or earlier he is usually in ours. This phase has led to a light sleeper. It was fine with me last night bc I was really concerned about his poops.
WARNING-I AM ABOUT TO TALK POOP-WHAT MOM DOESNT? IT IS GONNA GET GRAPHIC.
He ate so much cheese (did I write about this already?) Thursday and Friday that he was REALLY constipated Friday nite. It freaked us out. He was really straining and his Saturday poops had traces of blood on the outside and when I wiped. You can't help but wonder if there is a tear or just irritation from the firm poops. And if platelets are low whatever the source of blood, it will continue to bleed. Then the Miralax didnt seem to kick in until Saturday evening either. Needless to say, he was very uncomfortable. Small but + fist-sized firm poops= uncomfy boy. There was no missing the signs that he was ready to poop bc he would yell for us to make it an easier process. To ease his positioning we put him on the toilet to help him bear down and he pooped in the potty! A first! He seemed excited. But unfortunately bc he is not craving chocolate this week he could have cared less about his reward-M&Ms. Too bad. But since then he has been willing to sit and try w each new poop, even if he has already done most of it in the pull-up. Oh that's right-as soon as he pooped in the potty the first time I gave him a Cars pull-up and he was MORE excited about that than the chocolate. So, I am riding that wave for now. Whatever gets us closer to it. Like w T, I am taking his lead and running w it. Think I'll be picking up a potty chair for living room so he can make the moves on his own, and it will be easier on any babysitter rather than rushing him upstairs in time (we dont have a bathroom on main floor). We actually witnessed a huge tantrum bc he wanted pull-ups on all weekend. I'll take it!

We were up early dealing w poop (Miralax kicked in big time) and whiney SHRIEKS for corn dogs. He downed that thing like nothing. He should be the new contender for the amazing hot dog eating contest! He was more than upset when I told him he couldn't have cheese. That led to other whiney statements...really anything he could think of. A different hat, bringing random food items to Princess Jennie, wanting Aerum to read him a book, etc. Anything he could think of he whined and demanded occur immediately. Even 50 seconds in the microwave for the corn dog wasn't fast enuf! These are my mornings!

Triston really wanted me to take him to school today. So we rushed around (packing n such in case there was an all day transfusion), I dropped him off then headed to Dr Kwon's. The whole ride there G hunted down trains and looked for Mcds signs. He was in a good moood. I put a mask on him when we pulled into the parking lot and we took a delicious break at the Au Bon Pain bakery inside the hospital. He wanted to get Princess Jennie a cookie and I needed coffee! Harlem Ave was a mess and I was not going to try and truck my way to our local Mcds and try to explain to G that they weren't making chicken nuggets yet! He eyed a spinach filled croissant and pointed out the coffee section to me. The kid know the place by heart. I bought him his "sandwich" and we mosied on up to Kwon's. That is when the crabbies returned. He repeated he wanted to go home. I had to carry him in. He really has caught on and can reach into himself to determine where he would rather be when not feeling up to par. So sad. But once we got in and saw Jennie n Aerum he bucked up and did his job. He devoured that croissant filled sandwich. I even tried to get him another one after clinic and they were sold out. Then he curled up on a chair and rested while I vented to Aerum about some of what has been on my mind. It helped a bit.

Today was just a CBC, blood draw. I just needed to be prepared for a possible transfusion or a chest xray bc of how gunkie his cough got over the weekend. I swear, I feel like every 5-7 days his cough is gunkie again. Asthma + leukemia+winter=pneumomia fears. I had to increase his Pro-Air ( albuterol) to manage it. No wheezing detected this morning. Kwon says he sounds clear.
But we did have a new "thank you, steroids" moment. It took a while for a blood return (when they use the syringe to extract the blood to be examined for counts or to check the line for clarity). His line was flushing fine but it took several pumps to extract blood. And when it did come through it looked foggy to me. Jennie explained it was bubbly bc of all the pressure she had to apply to get it out. She immediately asked if he had finished up his steroids for the week prior. I replied yes and it was an aha moment. You see, the nurses have a theory. With the water retention and swelling that the steroids place on the body's joints n mucles they have noticed that the swelling effects the whole body as well. Thus internal swelling along the port line, arteries, you name it-effects extraction. It is just slow moving and she tells Grayson "we gotta wake up your port". It is not a stressed swelling that I would notice along his port site. Just more little things that can go on internally. No big deal. Just made me think of last night when he woke n told me his "port hurt". I checked it and it was red bc the metal button on his shirt was lying right under the port along the metal lining. We changed his shirt and he said it was all better. Jennie assured me there was no connection w the blood return. Just annoying that's all.
We took out his needle and attempted to leave the exam room. He insisted on being carried. I insisted on finishing my coffee before I carried him again. Doesn't he know by now that mommy always wins these battles. I understand you are achey and playing n running is not your thing this week but you WILL do some walking. He cried the whole way through the hall. Kwon just laughed. Once he made his trek I picked him up for the remainder of our trip to the car. That is all I was asking of him. Done!

Next Monday is quite the day. It is our halfway point in Delayed Intensification. That is pretty big. Even bigger-it will officially be our 6 mos Leukemia anniversary. All I can say to that is WOW. I won't even get into the sad and happy of that. Later.

He is scheduled for a LOOONG day (if counts hold strong we can proceed that day). He will get a IT MTX (spinal of methotrexate); push of Cytoxin and all day flush to check urine output (we will be there to at least 4:30 pm while he is pumped w fluids to flush out that cytoxin); a push of Cytarabine (AraC). That AraC means he will come home with his port in access mode (the needle still in and tubey hanging out). I will have to administer the push of AraC each night the rest of the week. We will also meet our new drug-TG (Thioguanine-an antimetabolite that resembles normal cell nutrients). The side effects are not fun to read about and let's hope he tolerates it. he is on it for two weeks straight. Anything new is always scarey. But no more steroids the rest of this phase, one more PEG injection, two more Vincristine pushes, an additional week of AraC and one more IT MTX. Seems so quick when I tally it down like that. Maintenance is right around the corner.

So, what do I hope for for next Monday? That his platelets are over 75 and ANC over 750 so we can proceed w the long day planned. No stalls now.
And my hopes for this week? His appetite continues. No more bits of blood in his stool. No constipation. The cheery mood he is in as I type this remains (for most of the time). I get (at least) my first set of report cards done without losing my insanity. And that he remains "well enuf" to see Disney on Ice. The last time we were out as a family was Christmas day and the time before that, maybe November? I would have to look it up. The time before that Sept 4. With so few and far between it is easy to remember the mixed emotions on those days. It'll be nice to spend it with family, too. Auntie Amy (baby belly Jack), Uncle Neal and Ayden are joining us. Keep your finger crossed for us, K?

Bros

Ooops! Caught them jumping over Caden! The hysterics belting from Caden's belly kept me from checking in on the danger! He thought it was hilarious, I thought otherwise.

Kisses

Taken January 16th (before G was couch-bound w the latest chemo treatment)

Ah, those smiles!

ANOTHER Moody Monday

January 17, 2011
The past two weeks of the Delayed Intensification phase have brought on fabulous Tuesdays thru Sundays (great mood other than steroid induced mood swings here and there AND a healthy and plentiful appetite thanks to steroids), but WHOOOOOOAAHHHH IS ME to Mondays. It obviously stems from TIRED and STEROIDS but WOW! It is not like I am prepping the kid for a spinal and yet he is tough to get out bed and get going. We didn't have to avoid meals/drinks for 13 hours. He was allowed to eat breakfast and drink all he wanted. We just had to apply the magic cream on his port and walk out the door. He acts just like anyone of us trying to get a move on on a workday Monday. Slow going and crabapple city! He truly wants to stay in bed and I sure as hell don't blame him. Makes me wonder if at the young age of 2 this is all getting old for him?

Once we get there is he is okay but then little things that usually don't upset him do. Like accessing his port-past two weeks he has been whiney about it, while in past months he insists on helping. And he hasn't been as playful with Aerum (child life specialitst extraordinaire). He is content with a book in my lap, a nap or today it was copying Triston w the Leapster or Leapfrog.

Today G wanted to be like T but also on the opposite side of the room of him. True love-hate relations today. You know how when we are crabby and over the top frustrated and we take it out on our significant others? That is how Grayson handles it all. He REALLY does take it out on T. T could do nothing wrong but walk past him and G whacks him. His own personal punching bag. Thank goodness we have raised T to tell us instead of retaliate. It means I hear, "Mom, he did it again!!" a million times a day but whatever.

And then to top off our visit today he threw the biggest tantrum when I was finally able to say we could go home. HUH? PMS x 100 I tell you! I give him what he wants bc all he did was whine he wanted to sleep in my bed and he fights me to leave. A full on tantrum w spaghetti arms and body making it ever so difficult to get him dressed. You know the kind! Even Triston told him, "With attitude like that I don't think you are going to the bakery with us!" He was right. G did not get a cookie and T did. I was the mom walking the halls with the screaming boy in the stroller. Thank goodness I brought it to carry all our crap bc there was no way I was going to carry him out of there and get beat up along the way.

Little did my audience know my boy had an excuse. The worst and yet most acceptable excuse to act the way he did. Cancer. I didn't care. I didn't care what people thought. They don't ride this rollercoaster with me. They didn't wake this morning hoping this cold doesn't get the best of them. They didn't have to use up their day off doing chemo crap. Bringing their 5 yr old along in order to take advantage of every minute of the day to spend time with him while continuing to remind him of what his little bro goes thru every Monday. These gentle reminders to support him thru this as well. Leaving their happy 6 mos old at home w the hopes he would stay on schedule as he fights his cold. They may not have had the horribly emotional weekend like I. Believe me-I would have preferred to be at a museum with my kiddos like most parents do on days like these. Gosh, I miss museums so much. Yeah, I could take T but it wouldn't be like old times w/out G. I miss his awe as he reacted to both the exhibits and Triston's expressions. So innocent and so uplifting to look to his bro for reassurance.

So, needless to say it was a pretty blah day. There was good news-great counts for the most part. No need for a blood tranfusion which is always good considering the time it sucks out of a day. But I packed for it just in case. Left directions with Mamac for the baby just in case. Just in case we weren't home until after 9 pm.

Today's counts:
WBC-1.71 last week it was 6.38
Hgb-9.3 last week it was 9.5
Platelets 345 last week it was 647
ANC-580 last week it was 5, 790 (check out that plummet!)

His counts are def jumping all over the place during this phase.
Cheat sheet:
we want Hgb over 8 or else a transfusion
platelets over 20
ANC (neutrophils) over 1, 000 otherwise he is considered neutropenic and has little helping him fight off infections

So most numbers held well but we really need to watch that ANC this week. I have all of us wearing masks this week. My prayer for the week...no fever. Let him fight off this cold and fussy-acting asthma ( observed since Saturday) w/out any hiccups.

But as much as I am complaining I am grateful for :
good moods
smiles
laughter
early bedtimes a few times last week
fantastic appetite of cicken, steak, potatoes, noodles, and broccoli
consumption of something other than milk-root beer floats
two unexpected play dates for either of the boys w healthy kiddos
hugs
cuddles
egg nog (my drink of choice this past week)
but something tells me wine will be this week's choice

So, readers-that is the start to weeek 24. We finished our day w Mcds lunch, naps (which made all the difference in the world for Grayson's mood, as he runs around goofing off w trains right now), Mythbusters and Wild Kratts and an early dinner. We survived an irritable Monday and hope the week gets a little less irritable. At least for the boys. I have way too many report cards and 4 mos of paperwork to catch up on to include myself in that happy boat for now. But someday...a
blissful cruise awaits me. I guarantee it. You hear that, honey! I will even settle for a Disney cruise at this point!

What it looks like...

The whiney, attention-getting, fake tantrum!

(jealous/mad/silly bc I stopped reading to him so I could feed Caden)

OR

From that...

to this in a matter of seconds...

over the littlest of things.

PMS x 100

I can't help but laugh!

Thank you, STEROIDS!!!

Welcome, Delayed Intensification phase!

Moody Monday

January 10, 2011

Everyone was moody this morning. Especially G. Thank you, steroids. It was the first time since August he did not want to go and see Princess Jennie. He was clearly very tired. So was I. My mind raced last night. I could not turn it off. He was very restless last night. He took two naps yesterday and still asked to go to bed by 7:30 pm. He tumbled around for 2 hours before passing out. That boy ran himself tired after a week of WILD CHILD behaviors. He was a happy, active 2 yr old doing his 2 yr old thang. Yesterday and today he paid to play. He is a true crabapple today.

He walked into clinic whiney. I carried him while the nurse assistant pushed the stroller. He was definitely not in the mood for any socialization. No running hug toward Jennie today. He slept during his treatment. A 30 minute push of Doxorubicin, push of Vincristine and blood counts. I was hoping all the while there would be no transfusion needed. I had no backup plan for T afterschool. I was clearly not home and had Caden with me at clinic. Counts were great. His ANC (neutrophils) jumped from 950 to over 5, ooo. Hgb 9.5 and WBC over 6, 000. No transfusion. A sigh of relief.

So while he slept, Caden ate and ate. He was such a good lil boy. Smiling and grinning at anyone who entered the room. Doing his job to greet accordingly. My social butterfly.

We left clinic after 1 pm and had just enough time to run to Target. The kid plowed thru the bologna we picked up on Saturday and we obviously needed more or there would be RIDICULOUS tantrums had. And with an ANC of 5, 000+ the boy deserved to get out!!! He had fun. The minute we left clinic his mood changed and he was his goofy self. He wouldnt shut up in the car! Why this and that and dissertations here and there. Too funny.

I even had time to get him home for another nap and sit on the couch for some peace and quiet for about 30 min before T walked in the door (I had his friend drive him home for convenience sake since I KNEW w G's morning record he would due for another nap and I was not about to wake him to pick up T). Then T and I had our own time together reading and chatting before the other two woke. Because as soon as all 3 are in action the night seems endless. The only reason I have time to write this is bc they are sucked into Thomas (a holiday dvd G saw at Target that I once again forgot to take out of cart at paytime-lucky for him it was on clearance for $5. SEE WHAT I HAVE TURNED INTO!! I AM BUYING THOMAS DVDS!!!). They are acting out a scene while Caden laughs along from his exersaucer bc he will laugh at anything that comes out of T's mouth. T could sing a swearing song and Caden would go into hysterics instead of drop his jaw in disgust.

So, we survived Chemo Monday with huge cases of TIREDS!

That is my Monday for ya! How was yours?

Delayed Intensification

Snuggie time

Good bye Interim Maintenance-----------------Hello Delayed Intensification!

We are just one phase away from MAINTENANCE!!!!!

This next phase is 63 days long. So, if there are no bumps along the way we should finish up at the end of February or so. His home cocktails for the first 29 days include:

4 1/2 tablets of Dexamethasone (steroid) a day (morning and night)

1/2 tablespoon of Nystatin 3x day

1 teaspoon Bactrim Mondays and Tuesdays

Zofran (antinausea) when needed

We are also keeping up with nebralizer treatments and all asthma meds

We began Delayed Intensification on January 3rd. Right on schedule! That is a big deal in "chemo time". This phase consists of Monday clinic visits. Any need for a blood transfusion indicated on Mondays will be taken care of that day. I no longer have the luxury of taking care of them early Tuesday mornings bc I am back at work. That makes for a LOOOOONG Monday if a tranfusion is on the checklist.

The first 29 days of DI (during a weekly visit) require the following to be administered:

Vincristine push through his port (a familiar drug to us)

Doxorubicin (bright red IV drug through his port)

1x = Initial start of phase was a Intrathecal Methotrexate (spinal tap and push of drug, VERY familiar drug to us-remember our last phase of 24 hours straight of this stuff?!)

1x = PEG injection in his thigh muscle

He is on the steroid for 7.5 days (every other week)

So far in this first half (Jan 3-9) we have seen a happy boy! Playful and HUNGRY. I knew the steroids kicked in as soon as he asked for Ranch dressing with his corn dog. Just like last time. Food choices include: hot dogs, corn dogs, bologna, alfredo-sauced noodles, buttered ravioli, plain bread w lots of butter. He has lost his taste for sweets. No obsession w M&Ms this past week. And we cant seem to pour the mild fast enough!

He has been in a really good mood and I am grateful for that. He is really loving up on Caden this week. Very concerned about him. The steroids have made him a crabapple in the past with unpredictable mood swings (try tracking that w the regular two yr old antics alongside it). But so far he gets really crabby fast and is clearly tired. He has crawled up on the couch and taken a nap each day since I returned to work (last Tuesday, Jan 4). And over this weekend we took family naps to care for his tired needs. So as long as we watch for those nap signs and help him give into them he remains a happy camper. I cannot complain. I love seeing him active!!!

The second half of the phase consists of (Beginning day 29-most likely first week of February):

Day 29 and 36-Intrathecal methotrexate (spinal tap and push)

2x-Vincristine (push)

1x-PEG injection

Day 29-One really LOOONG day of Cytoxicin (that drug that only takes 30 min to administer thru IV put all day to monitor his urine output. That is the kinda day spent in the Day Room at Clinic. We usually dont leave until after 4 pm)

2 periods (4 days straight) of our fav (insert sarcasm here ) Cytarabine (AraC)-the type of drug in which he is sent home with his port in access for me to push thru his port at home right before bedtime. It is no biggie to administer it's just having his "tubies" hanging out and needle inserted for days straight when he is such an active boy. Nervewracking. Can't tell you how many times I tell that boy to stop jumping on the couch!!

TG / Thioguanine-for 14 days straight (a new drug to us) . It is an oral chemo drug that interferes w cancerous cell growth. However while doing that it releases toxicity (the killing of those cells)- uric acid, potassium and phosphorous levels affecting kidney and liver function. It also decreases appetite. So we may see a drop in that surge we enjoy seeing while he is on the steroids.

No steroids during the second half of this phase.

And of course we continue his Nystatin (mouth sore prevention n treatment) and all asthma meds

So, there's a sum of what we are up agains the next two months. Help us pray for minimal to no bumps in the road. I don't mind transfusions bc they keep that bone marrow healthier but anything else is not invited on this trip!!!

Let you know how tomorrow's chemo treatment goes soon!