Some Freedom, Some Forget and Tons of Grateful

Aug 29-Sept 6
The hopes for another good week were successful! This week was as busy as we are allowed these days and it felt so good! You know I like to feel that hustle and bustle running thru my veins!


We fit in an impromptu family photo (thanks to daddy's tripod) for T's class. Even Bryley joined in if you look at the bottom of the pic. It's cute-she has a variety of picture frames all over the classroom, one for each family, for the students to view whenever they want. It looks great! Might have to steal that idea for my class one day.


Grayson continued to don those chubby steroid cheeks and sport them with pride! I love them!

He mastered his NEW pout face! We noticed he caters his head tilt to the left-the same side his IV connects to near his collar bone. I remember asking Nurse Jenny about that in that 2nd week of outpatient clinic when we noticed he cocked his head to the left as he walked around. She described it as how some kids just baby the side of the port, "nurse it like a broken wing". Interesting. Well, now he does this:

Hard for us not to laugh at in the middle of any emotional upset.

He continued to eat like a champion. He was still consuming anything and everything every 40 minutes or so and drinking milk as if we would be suffering from some type of cow depletion in a matter of days! His tastes that week included: mac n cheese, hot dogs, crackers, cheese cubes, sunships, green beans, spaghetti, pizza, meatballs, adobo, popcorn (pirate booty bc I was afraid to give him the real stuff he's used to in case his gag reflex was a little more sensitive), and all of sudden some SWEETS like applesauce, plums and strawberries. Fresh fruits get more complicated for me time wise bc he cannot eat the skin of any fresh fruit of veggie. The airborne chemicals and touchy feely germs of those who "tested" the produce are harmful to his immunity. Do you know how tedious it is to cut the skin/seeds from strawberries and then convince him it is the exact same thing T has? But in the end we were pleased he was chowing down, pooping and peeing-all we need to be sure the pipes are working!

That Monday we were scheduled for a bone marrow and spinal. Another morning in which he could not eat or drink anything from 4 am on due to the fact we would receive morphine and versed (Versed/Midazolam is given to children before medical procedures or before anesthesia for surgery to cause drowsiness, relieve anxiety, and prevent any memory of the event. Midazolam is in a class of medications called benzodiazepines. It works by slowing activity in the brain to allow relaxation and sleep). This makes for a very crabby G in the morning while still trying to get T ready for school and feed C...and still get ourselves ready.

Charito and I met at the hospital. We walked in completing our usual routine. As soon as G enters the parking lot or lobby he tells/whines to me, "No medicine. No Dr Kwon. I want McDonalds". We have to carry him into the exam room bc he would much rather be elsewhere. He asks for Mcds bc that is our treat after session. He still will not choose a gift from the treasure box so Mcds coupons it is. We were met by our fav Nurse Jenny. She came in with a huge smile and said, "Good news! Pause We are in remission!" I didn't know what to do. I know my jaw dropped and I felt a rush of tears but something told me to not bother celebrating w those tears. I remember locking eyes w Charito. Our eyes smiled but hearts said something else. It was like there was guilt for feeling happy about it. But it was the "IT" we didn't understand. What did this mean? And before I knew it we asked that question simultaneously. She explained it meant that there was an absence of leukemic cells in his bone marrow, generally speaking(I could get all scientific and explain the percentage that they look for in relation to body mass and blood conditions and the number of cells, etc and what percentage we were at in dr terms but really its all junk). Fantastic news. That means everything that was being to done to this point did exactly what it was supposed to do. We were on a great track. She gave us this glimmer in her eyes that told us it was ok to be happy for this. We still had to go thru the timeline as described weeks ago but this was all great news.

My error-Remission news occurred on September 7th! But you get the point!

SO remember this paragraph you just read for the next post bc I for some reason can't copy and paste it like I want to-mentally place it there when I mention it...that's your homework people!

Dr. Kwon entered and exclaimed we were done with induction. No more steroids. I was confused for a bit and realized it had been over a week since I looked at our timetable. It happened so fast. The induction stage was over that day and we began stage 2-Consolidation next week. 29 days gone and went. No more steroids for awhile. He went over the drugs that we would be introduced to, new timeline and warned us it would be intense. The drugs and Grayson's reactions to them, that is. I took a deep breathe. Feeling stupid deep down. And I thought the past few weeks were difficult? Alrighty then!

He left the room and Jenny could tell we were trying to take it all in. She is great like that. She dumbed it down for us. Her one liner sums it up pretty well-"it is gonna kick his little butt". She was being honest. She sees hundreds of kids and knows what is around the corner. But in my lil guy's defense-she reminded us that all the side effects he was supposed to display during induction he barely did. He wow-ed them. So he could do the same wow-ing this time around but we should be prepared. Consolidation was going to be like he had the flu for 56 days straight. Achey, nauseous and constant low grade fever is to be expected but to immediately call if it even tapped at 100.4. Huh, and I was already checking his temp 3 times a day for habit and never a one. She also told us there would be chemo drugs we would be administering at home thru his port for several weeks. Okay?! And this was in addition to the oral drugs he was to receive. She told me should would teach me how and it was no biggie. And he just started walking again with support. Would the achiness take that away from us again? I still didn't know what to expect. So they handed us the new timeline for stage 2 of treatments-56 days. A new set of routines, drugs and reactions. Yippee!

We finished up treatment with the usual bone marrow and spinal. This time the research coordinator remained in the room to receive the handoff of samples herself. I couldnt help but think, "Yeah, that's right...you take those leukemic free tubes and go help my baby get cured as well as many other kiddos!" I helped hold him in his C-shape as Dr Kwon did his thing. I still like to watch the procedure. It is amazing to me. And my lil baby does so well. He doesnt even know what is going on behind him. And under these light sedatives he is awake and silly. He is lovey dovey with tons of "I love you"s. He also gets the cutest hiccups and giggles. Once again he did great. After 30 minutes he is allowed to sit up and eat and drink and duck out. It was a nice early day. As we got our stuff together he chose a Target gift card. I joked that we could go shopping at midnight when no one was around! Jenny realized then she did not give us our lab results earlier. She joked back with a comment about more good news. And it was-we were not neutropenic! Neutrophils (ANC) went from 290 to 1,410. OVER 1, 00!! Hemoglobin was over 8 (down from last week but still safe) and platelets were 268 (up from last week). We could actually enter a store! Yup, it was a good Monday. And to top it off-he did not throw up from the morphine that day like he had last week. He was actually in a great mood all day long. Wondering what ol' chubby cheeks weighed that week? 19.1 pounds. He had been teetering 18.2 and 19.4 the past 5 weeks. He was in the safe zone.

Tuesday-You know what we did!!! Went to Target. It was awesome! It was the first time G had been anywhere else other than a doctor office or drive thru in 5 weeks! I was so giddy. I had my shopping buddy back. We were probably there for almost 3 hours. Every corner we turned he squealed and narrated to what we saw, should buy, what was on my list, etc. The smiles and laughs were priceless. Mommy, I see a table, lamp, milk, cheese, bandaids and on and on . He pretended to drive the cart and made vrooom sounds as I pretended to make sharp turns and drive fast. He was so tickled pink and thought everything was silly. I was finally out doing what I had always pictured I could do while T was in school- a stay at home mommy kinda thing. I was silly and tickled pink as well. We took our sweet time and bought the place out. And yes, there were plenty of toys in the cart for him and one for T, too. He even remembered how he used to help me out by placing our items behind him in the bigger section of the cart. Only this time the towel I had him sitting on to soften that boney butt of his and his lack of arm strength these days turned that job into more of a toss! I didnt care. He was thrilled to help mommy.

More train playing with his new Target purchased trains to add to the collection!

It was great normal kinda day!

Wednesday we had visitors!

Auntie Katie came to hang out and boy have I missed her! That is G and her daughter Addie. Isnt she beautiful! She dwarfs G and she is only 2 mos older than he! We had a blast just catching up. The adult distraction/conversation was so overdue for me!

We called grandma and grandpa alot!

We snuggled a plenty! The hospital brought on some changes for G. Now he likes blankets and pillows and cuddly things. Nemo was been on our movie hitlist for weeks and when he found T's Nemo he asked to bring it to bed with him (our bed of course. Even tho he had been feeling really good the past 2 weeks the first two nights after treatments he sleeps with us. The other nights I felt comfy enuf for him to sleep in his own room). He even likes to cuddle with us now. That was never the case before.

This evening he was retelling the Nemo movie to me.

Pausing for Nemo kisses.

Thursday

G was still feeling really good. No nausea and eating well. Nice energy level and great mood. Still not walking on his own but that is what I have a stroller for! Caden had his 6 week appointment that day. Since G was feeling good I took him with so Belmonte could see him, too. G doesn't get to see him anymore and my kids adore the man, as do I. Both G and Belmonte lit up when they saw each other. Belmonte was so pleased to see him in such a good mood and so talkative. I gave him the brief on G and T and then we moved onto Caden. We had a great talk. I told him how grateful I was to have him meet us at the door and break the news to us. He said he would have had no other way. He asked how Charito and I were doing. I told him he has a fan club consisting of our family and friends that will one day take him out for a drink. He slid in the comment that THAT weekend he needed a drink. I cannot tell you how much that serious type joke meant to me. It got to him like it did us. That IS a good man, a GREAT man that I am blessed to have in my life, OUR LIFE. He asked about Caden's personality. I responded with a chill and go with the flow kinda baby, a good baby, a happy baby and a great sleeper. He was like an angel. Belmonte joked that he kinda had to be, right? I agreed. I blessing in disguise to be such an easy baby in all this.

And then that GREAT man gave me some good mommy news I needed in my life. All the stats were fine w Caden (he and I were pleased) but his motor skills were off the charts. My 6 week old had the motor skills of a 4 mos old! I mean I knew the way this kid held his head up amazed me from day one. More so than T and G ever did. But I watched my lil guy literally prop himself up on his elbows and forearms and raise that head higher than I had seen him do w me in recent days. Then he turned left and right as he had been doing at home. Then kicked up those feet and scooted those legs attempting to push forward. Belmonte declared him to be an early crawler one day and a 4 mos old. I loved it. I didnt feel an ounce of guilt for not giving him his tummy time in who knew how many days. I usually know that stuff. When and how often I do what w my babies. But poor Caden wasn't getting it daily. I couldnt pull it off. My baby boy was taking care of his own. As if to say "dont worry mom, I know you got your hands full. I got this one!" I soooo needed that moment that day. To know that Caden wasnt suffering in all this. He was AOK. And seriously people-if you want to see my lil freak of nature do his thing-stop on by. It is adorable!

Before we left the office Belmonte hugged me and told me if I ever needed to talk he was there to listen. Yup, I have the best pediatrician ever! Hands off! He is mine!

Friday, Saturday, Sunday and Monday (Labor Day)

His appetite decreased a bit but nothing that alarmed us. After all, he had not been given any steroids in a week at that point. His mood continued to be great and there was so much of old G for us to enjoy. It was a wonderful week. We have learned to get past his mood swings as best we can. He cannot control them. He is impatient and eager and stubborn more than ever. The drugs do that to him. We cannot get upset over every little thing. This lil man has no control over anything that he is going thru and all he wants to do is control the things he can. Like the movie of the hour, toy of choice and anything else going thru that mind of his. I have learned to pick our battles. He cannot have everything he wants all of the time. Always was our rule and still is. I will not let cancer change his entire personality if I can help it. I have two other boys with wants and wishes, too and G needs to still see that in his life. As much as our lives are directed by his needs I try my best to alter the directions slightly in order to shape our family, our morals and our decisions. I am trying. No one can be left in the dust while another is ahead of the crowd. It is just not the way Charito and I have done or will do things. We just have to try (that is my promise to T and C).

Saturday

This was a day forever in our hearts. We headed out to Morton Arboretum. Charito had never been. And it was still a safe place germ-wise to visit. The weather was gorgeous and well, my kids love nature so it seemed perfect. Our first family outing in 5 weeks! Hooray. It was glorious.

Words cannot express the emotions, laughter, smiles and freedom EVERY ONE OF US felt (okay, maybe Caden not so much but like I said he goes w the flow in this family! Happy camper always). The freedom to forget for awhile what we had been thru the past 5 weeks. The freedom to let the air in. The freedom to forget the bad for a bit and remember the some of the strength that had come of all this so far, no matter how little it may seem some days. I truly didnt realize how tired I was, drained til that day. A day I had the chance to step outside of the "new normal"of meds and my mommy nursing degree, T at school all day, the life of a newborn and oh yeah, everything else in between like cleaning, shopping and laundry. And not to forget the gratitude for a day like this. Gratitude toward the people that helped us get to a day like this. To be around others even if they were strangers. That feeling I had at Botanic Gardens...I could see it in Charito now. We just kept catching each other with our eyes/ our secret language and it said it all. Every moment we watched the kids take part in we felt the same way w each reaction. We didn't have to speak. Just those glances were enuf.

There was also something about that place...are moods...nature...god...I am not sure, but G was motivated! Motivated to move. He ACTUALLY wanted out of the stroller. New to us! He wanted to experience what T was taking part in, just like the good ol' days. Such strength and awe beamed thru his big brown eyes. He was so ready. As long as mommy or daddy were there to hold his hand he wanted to do it all. Even though his gait was wide and full of so much effort, he did it all w a smile. I wasn't going to be picky just thrilled he wasnt lying on a couch w little energy. He was out n about!!

Again, I cant begin to express how this day felt but these pics should say it all....

During this shot I really wondered what he was thinking about...pondering...

I loved the sense of rushed exploration in his body movements during this shot. You just couldn't find the pause button on that mind of his!

At one moment I glanced over at Charito and he seemed intent to capture this shot. At the time I didnt know what it was. As he left the area I walked over to check it out. My breath paused for a second. I knew then that this day was meant to be. It was for us. As much as I was missing my family and wishing my mom and dad could see us 5 capturing our day of freedom I knew they were with me. My mother loves butterflies and anytime, ANYTIME, I am thinking of her in a moment I need her most a butterfly has appeared. This was our moment. I love you, mom. This pic is for you! Surprise! From your G!

He was so excited to go on the slide. Because he couldnt climb the slide access himself I had to walk up the wall and dump him at a halfway point onto the slide. He thought he was doing the whole length of the slide. It was quite the workout.

Sitting up high looking for 'Tis Tis' (Triston)

After the first fort that T went on n G watched, he would NOT go back into the stroller. He was so content leading daddy around.

I love the way he looks up at daddy in this one!
I want to enlarge it in black and white!

Look at that face! I want to kiss it all over!

G saw some boys climbing on these rocks that were nestled in a stream. He told us he wanted to go there. I led him over. He indicated he wanted to make it to the other side. It required long steps and rocky ground to do so. He insisted. I held onto his waist and off he went. He kept going. Heading to the rougher rocks and wider, larger stones. I was nervous I wouldn't keep my balance. He grunted and screamed for more. The whole while I thought nothing of comparing these little rocks (to me)/huge rocks (to him) as his mountains. The mountains he needed to conquer in these upcoming months/years and those he had already surpassed. Those tiny toes, feet and skinny legs still had a long way to go. I want his determination to remain the way I saw it on that rocky stream. My warrior. My conqueror. It was another moment I wanted to cry for him and how he keeps me going each and everyday. Look at him go! I will be enlarging this one in black n white, also.

Looking up at daddy,"I did it!", for the perfect shot!

Me and my boys!

We had so much fun. The Morton Arboretum left such a wonderful place in our hearts that we purchased a membership there (which works at Botanic, too). We figured if places like that can make us feel that good we are in! Therapy anytime! Besides, they are also great places to go when G is neutropenic and we have to avoid those crowds. At least we know the flowers and nature and god won't scare us away. And better yet, fall is coming and it is my fav! I can't wait to return for Autumn Reveal...with my boys in tow!