The Biggest Bro

This pic was taken back in Feb/March. The bond then was unbelievable to watch unfold and NOW it is truly priceless.

I just had to share what the biggest bro, T , mentions these days when he is not feeling well-

"Mom, I think my white blood cells are not doing their job! I am not feeling well today". He really understand the science of Leukemia-the book knowledge of it all. I just wish I could protect him from the emotional swings it takes on him. Wave my magic wand and make it all go away. Anyone out there finds one can you pass it our way please!

Home w some bumps

How wierd-my pics have never loaded up like that before! See stories below.

Thanks to one of our many awesome nurses, Nurse Christina, we were discharged rather quickly yesterday. That makes our total length of stay -afternoon on Sunday(October 31) to Wednesday afternoon (Nov 3). She asked me at noon what time Triston gets out of school and when I told her 3, she promised me she would have me out of there in time to meet him at the door! She is one my favs bc she is so informative and tells it like it is...and sneaks me goodies like xtra diapers n gloves n toothettes n thermometers to take home. She even dressed him while I got our bags packed up!

We were ready to walk out by 1:30pm. I am so glad she offered to walk down with us bc it was a far walk. I had left my car at the ER lot all that time. When we arrived to the van my key fob was not working. I then noticed the front doors were unlocked from my view of the windows. I thought someone broke in! Well, no...I got closer and noticed an interior light on and realized I had a dead battery. Turned the key and there it was...no turn over. I was SOOO RELIEVED she was with me. I would have dropped to my knees and cried in pure exhaustion had she not been there w suggestions. I couldnt even think clearly. She mentioned that public safety would jump the car enuf to get me home. We walked back to the building. She held onto G while I communicated and worked w the officer. It started right away! Sigh of relief. I hugged Christina and loaded G in the car. I headed home-praying there would be no more hangups1

I arrived minutes before T was to return from school. His buddy's dad was taking care of dropoff for us this week so I met T out front. The smile and screech for MOMMY was the best! He was excited to me as I was to see him. For the next couple of hours every 30 min or so he would hug me and kiss me and tell me he loved me or missed me. I said it right back to him, along with how proud of him I was that he was brave and well-behaved and took care of his baby bro while I was gone. He loved hearing that. I loved saying it.

T also returned home to another surprise-a package from Grandpa. The Arkansas packages are usually labeled with Grandma touches but this one was all Grandpa's doing. Grandpa saw it and thought of T right away. T was so touched it was all his. Something with the right timing that he needed this lil surprise. A wooden baby dinosaur peeking out of an egg. His response-"Grandpa sends the coolest packages! But,Grandma sends clothes and candy". I could tell his wheels were still spinning. Then he adds, "My room is not special enough. Not everyone will see it. I will put it here!", as he placed it on our dining room buffet. It looks great there!

Shortly after T arrived home Mamac had to leave to get to work. I didnt get a chance to shower! It had been 3 days! Yuk. Then Caden woke up. I couldn't wait to see his expression when he saw my face. I got the biggest smile. I unswaddled him and found the above pics. He was wearing an 18 mos old onesie! I couldnt understand upon first glance what he was sucking on. Then I saw the long sleeves and knew there was NO way he grew that much on me in a few days. He IS NOT ALLOWED to. He didnt seem to mind it though-look at those smiles and then in the second pic he is laughing bc I was teasing him about his clothes.

Then T n G fell into usual afterschool routine (on our stay at home days-which are def the case until further notice Monday bc w Gs ridiculously low ANC he cannot be exposed to the "outside world"). G stumbled across T's halloween treat bag and dragged it everywhere and for the next few hours all I heard was G asking me to "open, please" (he ate so much candy, I didnt even care! He deserved it), G bossing T and Bryley around, and T yelling "Mom, he's doing it again" as he antagonized every inch of T (G missed him so much he just wouldnt leave him alone). At one point I heard T scream to G "will you just use your patience and let me do my homework! I have things to do you know!" I just giggled to myself. I missed it all.

I know many of you think I'm lying when I say that but I really mean it. I very rarely yell. It's not what I want in our house. The only times I have been raising that get-out-of-the-way-mommy's-mad-voice is at bed time. It is a very frustrating time. All of June and July these two slept in the same room. Lights out and go to sleep on your own. I didnt care if they read books for a bit but they were not allowed to come out. Ironically T fell asleep first and it was G that would push it to the limits and play at the train table. But he would not yell to come out or attempt to escape. He felt fine knowing T was there and when that tired bug finally hit he would crawl into his bed and fall asleep w whatever toy in hand. By the end of the first week T was out within minutes and G was lasting about half an hour before playtime ended on his own.

Since diagnosis T lost his room buddy bc practically all of Aug and most of Sept G slept in our bed. We just did not feel comfy with him out our sight. Most of October he slept in his own bed other than the nights his respiratory infection left us in monitor mode. But bedtime is tricky. Now they feed off each other and will not settle down if we attempt the same room bit. Its a funny kinda feed but when we are so exhausted its gets irritating after an hour. They tickle and laugh and tease n read n joke and so forth. It is great brotherly business but they truly need their sleep. Mommy n daddy need their sleep! So we separate them. We cant just close the door on G anymore and walk away. Too many fears of injuries while he is playing around and such, and if he does fall and injure himself we need to be able to say what happened. By the end of each week we do not know what his blood numbers are and that is nerve-wracking. A bruise freaks us out. A bump even more. And blood-well, that's another issue with his clotting factors. Yes, it's an edgey life we live now and not the Aerosmith kind. So these days T gets sent to his room to go to sleep on his own . But sometimes he wants to cuddle with us as much as G gets to. He has nights he cries that he feels lonely. Charito takes one and I take the other. We play it be ear. There are nights T is so tired that he is off to bed and out so quickly. Then there are nights he's so wired that he needs quiet time with an adult to fall asleep. It is so inconsistent. Since Grayson was 3 mos old he and T went to bed at 6:30pm and slept til 6/7am. It went on for years and I miss it. Now we are trying our best to get to some kind of schedule but it is constantly interrupted. Depending on the meds G is on affect his bedtime, our bedtime. And it is not fair to send T off to bed when G gets to stay up playing bc he needs one more hour of awake time before we can administer this or that med. It's about keeping an even playing field for both of them and not hurting T along the way. He is way to aware, intelligent and compassionate for that. So needless to say, bedtime is rough. On a tough night each adult takes a kid. On an easy night T is so tired he puts himself to sleep and G just happened to not have a nap earlier or his platelets and hemoglobin are so low he falls asleep really quickly. But that is the other thing. He is so used to sleeping in our bed now bc of all those nights we keep an eye on him that he prefers it. So if he is having a difficult time falling asleep we let him pass out in our bed and then move him to his bed(if it is a bit "safer" of an evening to do so). I sure won't leave him in our bed to fall out! Other nights he starts off in his bed and we lie next to him and cuddle or rub his head or back or whatver he demands until he falls asleep. And then there are those nights when I want both boys in my bed with me. Family night.

I don't even know where this post is going anymore! Lost track. This is what happens when I cant get it done in one sitting (started it on Wednesday or Thursday and now it is Friday)and I'm already feeling cloudy to begin with.

But our return home left me with mommy stuff to catch up on. Baths! Oh my-Caden hadn't had one in maybe two weeks! I was afraid to look at his scalp. All that hair has left him an oily kid. Each one of my guys has had a bit of cradle cap and without a bath Caden's was gross. Not the worst case out there but for a clean freak it was enough. That baby boy sat under that running faucet in our bathroom sink while I combed like crazy. I couldn't believe how long he tolerated it. I got him all fixed up. T needed nails trimmed. G needed nails trimmed. My mother-in-law got alot of laundry done. I still had tidbits to do. It was as if as soon I walked in the doors I had to put that Mommy Hat back on and get to it. I felt so disorganized.

But at least I got some work done during the downtime of Grayson's naps during the hospital stay. I was able to return to the interrupted business of planning a site for Triston and Grayson's combo bday party in December. I found a place newly remodeled. And even better-the supervisor granted us the space to ourselves at a cheaper rate. I had mentioned I was in the hospital with my 2 yr old and that led to G's story and then before I knew it she was more than accomodating. It was such a blessed act of kindness from a total stranger. I cried over the phone with her. I couldn't believe it. She insisted that G's five yr old brother should have the bday experience he deserves and the safer accomodations for his 2 yr old brother to be able to attend. It was amazing! It was a feel good kinda moment to make for a full day of feel good kinda vibes. On Thursday when I had to run to the site and pay the deposit I brought that supervisor flowers. It was the least I can do! She just called me to thank me for them. I explained to her that if she was one person I could show gratitude toward I wanted to. Even if I hadn't met her yet. Maybe one day I will. But up until this point our friends and family will not take anything from us return and if I could give back to one person I was going to. It meant so much to us. Then following that phone call via hospital room I was able to confirm Caden's baptism details and approve a spectacular design for his invitations thanks to Uncle Joel. It was an accomplishing day for Mommy/secretary.

I don't remember what else I wanted to include in this post.

Well, regardless of what my house looked like, fridge, dirty kids under the microscopic eye of a mommy and they feeling that I lost control of the house (what little I have of it these days) all were well fed, loved, held and cared for thanks to many people. It was the best thing I could ask for under these circumstances. Now to make sure Charito and I stay healthy and wish for happy holidays...the older boys are in Santa mode already!!

The big reveal....

Caden Jay Cacal---------July 26, 2010------------7 # 8 oz------------Hairy and White!

It is about time!!

Isn't that onesie adorable! An awesome present from the Becky and her crew!

Normal delivery. Healthy and Happy. I think about 19 hours total labor. He was slow going. Then you would think the third would be easiest delivery-ha! Lots of pushes, I asked for epidural to be turned off bc I could not feel contractions and it made things so much more difficult. Great doctor once again as in the past. Caden made me work for him and that was fine in my book! YET, no one warned me of post-partum contractions. Apparently they appear with additional pregnancies down the line. Did not have them w T n G. They were horrible!! Worst than delivery and I am not exaggerating. Vomiting, tremors, contractions. I was superwoman during delivery and a sissy during this stage. I was so embarrassed to be in tears at that point but it was horrendous. After 3 hours of that it finally subsided and I was able to hold enjoy the baby ooohhhs and aaahhs.

This was the outfit Caden was SUPPOSED to come home in...we were in such a hurry to get home to the boys (we both missed them so much and were tired of the hospital-we were there late Sunday nite to Wednesday afternoon). I threw bags at Charito to take to car and didn't even realize til too late (and far away parking) that in one of them was this outfit! So C came home in the yucky green hospital onesie pieces. Talk about bad parenting already! We met everyone in the yard at home-Amy watched the boys at our place. It was a wonderful homecoming. Rushed and blurry but memorable. Grayson was so mesmerized by the baby! He kept touching my belly and looking confused. He still calls it my baby belly and lies on it (thanks to my battle field and scars). He is the only person in the world that I dont feel offended by with that comment! So, the next day Caden wore his "already home" outfit. We picked this outfit bc it was so fitting-it was so hard for us to picture G as a big bro! He's still a baby in our eyes at times.

I took this pic on Aug 3. I headed to Roselle that night to see T n C after 3 long days at the hospital w G. I remember wondering if Caden would even know who I was after missing my presence for several days. The way he nuzzled toward me once I picked him up left no doubt in my mind-I had another mama's boy! And damn proud of it!

Any pics of his first 5 days before the day of diagnosis are on Charito's camera. I have one of the 3 of them the night before diagnosis I will upload when I get home.

His second bath-Mom gave him his first while I was w G.

I tried to slick that crazy hair down-it needed some taming! He looks totally different!
His toy from Uncle Joel!

Look how much he was changing so quickly! Still looking like me tho! Finally got one to resemble me. Funny how each boy came out with more and more hair and paler skin down the line!

August:

Triston is so proud to this day to help out. He was the same way with Grayson. I tell him almost everyday his is an outstanding big bro.

September:

And the smiles begin.

I know there alot of pics of here of him smiling but seriously that is all this kid does. And anytime you try to get a serious pic you often can't. As soon as he sees anyone's face he just smiles. There is no stopping him. And lately everything is funny. I will have to post that video of him laughing weeks ago. Too funny. I have told Belmonte he truly is so happy. Upset when he needs to be and that's that. It's as if each one of my kids came out happier and happier along the way. We are blessed.

At two months old and already in the 4 month old prone position. Belmonte declares him an early crawler soon. He really is a nosey rosey! He just can't help himself! It's his nature. I see the wheels spinning already. I will place him at the changing table and I watch his eyes track the order in which I grab materials from their locations even before I have finished the current step. He has it figured out, memorized and keeps his tabs on me. Another dictator in our midst?! He is now 14 weeks old and earlier than his 2 mos aptmt he was able to escape any swaddle. And yet way back then we found we still have to swaddle bc I was finding him on his stomach. Yup, he was rolling over and freaking me out!

Amy and I joke all the time that it's like he is one age living in another's body. It is so wierd to hold him and feel all the physical activity is trying to accomplish and yet the rest of him isnt ready for it. You seriously want to just plop him down on the floor to sit and grab the phone bc he sits in your lap w barely any support. Time to get out that Bumbo.

October:
He woke at 4 am one morning screaming. I went in there to witness all these bloody scratches on his nose. I determined he was fighting off the cancer ghosts in his sleep and left the battle with a few scars. Well done lil bro!

Loves this dolphin toy-that's my boy!
So thrilled he reached the rings all on his own!

Daddy sent this to me when I was out getting my hair done last weekend. The boys were so good for him and I was so happy that one of the few times daddy was alone w all 3 it went well. As Ive mentioned before-Charito will admit that his patience is all over the charts when it comes to the infant stage (and unfortunately during the infant stage all my boys really prefer mommy over anyone else. I dont mind at all!), Grayson's mood swings which are like watching a horror flick, and T -he just runs along his self-sufficient ways and acts up when he PMS's like mommy n daddy. Yay for daddy! I was so relieved he had a good day with them-the last few the kids were not so cooperative.

I am truly convinced that I was sent an angel when Caden was born. His personality and aura is more than we could have asked for in our situation. Whenever I am upset or ready to yell at some typical mommy thing I walk over to him and breathe. In August he was sleeping 10 pm-3 am. By September he was sleeping 7/8 pm -4 am. Each week leading up to the end of Sept. he stretched that to 5 am. And the grand ta da happened during October with the perfected timing of our pneumonia outbreak in which he slept til 6/7 am. Another great sleeper like G! I cant tell you what a difference it made to at least know I was going to rest up during the night even if I didn't get a nap while recovering.

It is my blog and my place to brag-Caden you are perfect! All my boys are - in their special and unique ways. I can tell you are going to be compassionate, smart, goofy and down to earth. You are a loud mouth we need to be and that is a good thing. A little guy like you needs to be heard in that chaos we call home. You do your thing and we will follow right along with you bc that is your personality-go with the flow and tackle the punches as they come. You may not remember any of this rollercoaster but we will make sure you know how much you were loved even when we felt buried deep in it all. You are a true wonder! A lucky star! And the best thing that could have entered our lives at any time bc you are that amazing! You just keep on taking in all that surrounds and putting it to use. Keep listening and babbling and watching. Keep looking at T n G with such admiration bc they really are good to you. I look forward to all you have waiting for you in the years to come. Our promise to you-we will make as wonderful as we possibly can bc that is what you deserve! I love you my little grain of rice-oodles and a google!

Just wanna squeeze...

Shot this in the middle of the night last evening...a good night's rest w no interruptions. Don't you just want to cuddle up with him?! I sure did...all night.

Finally. Sleeping since 11 pm. He would not SHUT UP! I was both irritated and entertained at the same time. Back to his chatty self. He was wired and I was tired. Not best combo for feeling all shut in during isolation. He barely stirred. It was like a sleepy night at home. He is acting like himself and still fever free. Numbers are abit up from yesterday (finally received yesterday's labs late last night!!) but not good enough, still low. And while his hemoglobin was nice and steady through Sunday and Monday while fighting the height of this it went down yesterday below 8. It was a 7.5 as of mid-day Tuesday. They drew for a CBC at 6 am this morning and I would not be surprised if it dropped below 7. And even if it didn't I know Goodell will not be content sending us home without a transfusion. I'd rather it be that way anyway, in fact I would insist before I was discharged. We have several days before returning on Monday for numbers to plummet while G gets the rest of this infection out of his system. And yes, I was FINALLY told that the first blood culture was negative (no bacteria growing in his blood/bone marrow) and that the second is most likely negative as well. This is looking like a viral infection. Still to determine what type and mode of antibiotics we will leave here with and for long they will be taken. Til then...

Grateful

Please understand that I am grateful for so many moments even though I just vented in a negative manner. Although this hospital stay is inconvenient I know it is the only way to make him better. I have accepted that I cannot make Grayson better at home. We dont have "the tools". His tools are special now. One of a kind, like him. Tools in the hands of others. I get that now. And I am grateful this is our first hospital stay. I know now that the first few months of chemo could have been worst. We were lucky. He was lucky. And I truly believe that our mostly bump free first 3 mos mean something. That it is going to be ok. He is going to ok. He is telling us so much. I know there are families struggling with so many more bumps in their cancer road. Drastic and serious bumps.I am so thankful. I am realistic to think that things could get brutal for us, believe me. I am just allowing myself a bit of ying and yang now and then. It is only fair to myself, G and my family. It's how I get by. I think it aids G in the fight as well.

You should see how weekly clinic is no longer a frustrating place for G. It is routine now. He tells them what to do! He is thrilled to hear he is going to see Jenny. The only mornings he is upset is when he cant eat but once he picks out what he is going to dive into when given the ok he holds onto that item and walks into clinic with it. His transitional object and reward at the end of a "long day".

I have admitted to Jenny that clinic is actually a happy place for me, too. It is quiet time for me and the place that my lil boy is getting fixed. It is a positive place for me to reflect. I dont dread Mondays anymore.

It is too bad that this hospital stay has delayed our track. We were due to start Interim Maintenance yesterday and that isnt even going to happen if his numbers arent in tune next Monday. It would be quite the surprise if so-they would have to dramatically jump skyscrapers in order to do so! Not gonna happen with this infection brewing to its near end.

But I just had to get on one last time tonite to let you all know that I know its going to get ugly and this stay could have been for something ugly and serious and it isnt. Its just scary at any point these days. The unexpected haunts us. I have no control over much of G's rollercoaster and I struggle with that everyday. I have accepted that I am not the one that can make it all go away, only the one who can make it better along the way. Its my mommy duty and Ill take that duty anytime, anyday, forever and ever.

A Downslide...

of emotions, energy and good times. Our first (always unexpected and never planned) hospitalization since diagnosis is now in effect. Just when Charito and I were finally feeling better. Just when I had my energy back. Just when I was rid of my pneumonia induced blahs. Just when the depressive state October grasped around me was starting to disappear. Just when I had a couple of great times to brag about that made me feel awake again. Like these:

Over a week ago-Triston's first classmate bday party-Halloween theme. He was sooooo excited!It was my first time out in weeks other than Target or Jewel. The whole time T kept telling me "Thanks for skating with me, Mom. This is fantastic!" He knew this was something we always wanted to do and each winter we remembered to I was prego. It was soooo much fun. It was hard on my breathing and I used my inhaler often but so worth it! And I might add-T is a really good skater, the grammar school and high school figure skater mama in me was so proud! Dare I consider hockey for him?!

10/29-Triston's Halloween parade and party at school. Grayson was invited and he was feeling great and numbers were awesome that week so I took him along. G was so excited and T thrilled to have us there. He just shined when he saw us. My two lil pirates!

10/30-I finally got out for some mommy time. I have not had my haircut or colored since before diagnosis (end of June!). My bday present from my parents was a do and pedicure but all I had time for was a do. I told my Aunt (AC) to chop it. I do this all the time. I grow it out to below my ears saying Im going long and then I go drastic and frustrated and chop it all over again. This time we went a bit shorter. I needed it. I told her I was feeling so heavy (I know that had more to do with my stress and emotions and such but anything to make me feel lighter after such a "heavy" month of October I was all for it!). So wallah. This pic was taken by myself in the hospital. I have not washed my hair or done it 3 days and had no sleep the night before so bear with me.

Unfortunately that new "high" did not last. The morning I had my hair done(Saturday) and breathed some fresh air we also went shopping w Mamac for some new season clothes for T and then since the kids held out we went to dinner, just us 5. It was so nice. G fell asleep for most of dinner and I figured it was bc he did not nap. As soon as we got home he slept some more. All kiddos down by 7 pm. By 10:30 g woke asking to cuddle and as soon as I grabbed him to nuzzle he was warm. I took his temp and it was 102 (dangerously high for G). I called the drs and Goodell said to give him Tylenol but if it didnt go down or return we needed to head to the ER. We gave him the dose at 11pm, at 5 am (Sunday morning) he was clear and by 9 am it was back. 102. By 1pm we were at the ER.

I cannot begin to express or describe the look on Triston's face when I told we had to take G to the hospital (we are clear about using the terms hospital and doctor. We had to establish the difference to him early on. To ease all of this). He truly fought back the tears. My heart sank. Even tho he is so independent and mature, those specks of him I assured him that he would still have his day as planned. Uncle Neal, Auntie Amy, Ayden and Uncle Mike were coming over for pizza and treating. That helped but I knew what he ws thinking. He was fearful I would be gone a long time like last time. That has without a doubt left a scar on him.

Mamac sat with the kids until the Harper clan arrived around 1. When I told T they were bringing a pumpkin to carve he said, "I think it should have a sad face for Grayson". I told him it was very sweet of him to remember his brother and that he is an amazing big brother, the best in the whole world.

It was hard for me know I was going to miss Caden's first Halloween. Hard to know that I wouldnt see Triston's face light up with each trot up a stranger's front steps. But I knew he would have a blast either way and his cousin Ayden is such a great distraction. And as a friend reminded me 'He was with people who love him' (thx Becky!). I called him later that night and he said he had so much fun. I was so glad.

Later in the evening around 10 pm I called to talk to my sweetie. He left the hospital round 8pm. Mamac was staying the night and both boys were in bed. But as we were talking T was waking from a dream and Charito went to check on him. I could hear him wake and crying for me. It was so hard to hear. I wanted to hang up to no longer hear it but wanted to know he was ok. He climbed into bed with daddy and fell asleep again. You can imagine what kind of tears I had as I put myself to bed that night.

Before we rushed out of the house Sunday I had everything ready for T for school the next morning. Charito had to go to work and luckily so far each nite Mamac and Titamel are staying overnite to help out. G ran a fever of 102 all of Sunday. In fact the Tylenol wouldnt bring it down and they had to give him Motrin which they dont like to do w children receiving chemo bc it brings down their platelets. The fever remained until Monday afternoon (so far). The chest xray was clear. No pneumonia, no fluids in lungs, no inflammation (good news-meaning the respiratory infection we dealt w weeks ago was all cleared up thanks to a few days of steroids n his asthma meds). Goodell visited us Sunday nite and said we were looking at a possibility of a few things. A viral infection. A bacteria in his blood. A bacteria in his bone marrow. Or a false alarm fever caused by the chemo. He noted he was not surprised we were here and surprised we werent here earlier during our stages of chemo. We were due for one of these at some point. So we just had to tame the fever, run blood labs (CBCs), blood cultures and monitor anything and everything else.

The easy way to explain to everyone out there is that even if this is a simple virus in which any of us would give our kids Tylenol or Motrin at home and push the fluids and wait out, we cant with G. Things could go wrong very quickly for him. Remember -his blood and immunity fighting characteristics of his blood dont do their job when need be. For example, the reason we were out and about Friday and Saturday previous to this hospital stay was bc his numbers were great. Neutrophils and White blood cells in 2 thousands. He was not AS vulnerable as usual to airborne and surface germs of this and that. He was not neutropenic. Well as of Sunday with our first CBC during ER time his white blood cells dropped to 1,200 and his neutrophils to 100! That means that only 100 of the 1,200 cells were actually trying to fight this what we were so far calling an infection. Crazy! Neutrophils of that nature are automatic hospitalization. A fever is, too.

On Monday his numbers didnt change much at all. Not good. Fever til 1:30pm. But later Monday he was eating and drinking more and so playful. By night time he was his silly self and wanted to play on the floor. He was ol chatty Grayson. Goodell was pleased to hang out with him and see all that happy stuff. Happy to watch Lady and the Tramp with him. Happy to give me some perspective and hope-he jumped online and showed me a wedding pic of a handsome man and beautiful bride. As they were heading down the aisle there was Goodell giving the groom a hi-five. I said aww and he filled that aww with the news that he treated that handsome groom for ALL at the age of 3. He then showed me a pic of himself in the middle of the crowded pews with his back turned to the photographer. He admitted he was crying and blowing his nose at that moment. It got me. It was what I needed. Not that I was beside myself w this hospital stay we are going thru right now (I have accepted that it is a bump in the road and EXTREMELY grateful this is our first stay since diagnosis week that first week in Aug. In the big pic the past few months have been smooth. On edge but ended up smooth considering we dont know what to expect each and every mornind we wake), but it is a wonderful and personal thing for him to share w me. I mentioned how ironic it was we were glancing wedding pics and imagining stories bec I had jsut recently posted a blog about G finding the one true love who will accept him for who he is, ALL and all. He then told me, and I'll never forget it-"You will get there. You will have this day" , as he pointed to the computer screen. I thanked him for the chin up conversation and off he went.

He remains fever free up until now 1:45pm on Tuesday. We slept horribly last nite. Frustrating seeing as it was the perfect nite for him to rest up and kick this thing. We are still awaiting test results which is why we are still here. Still waiting for the blood culture that was taken at 2 pm yesterday. The first one from Sunday was negative but when his fever returned yesterday they had to take another one along w blood draw for liver function. Still waiting for the CBC results which were taken at 5 am this morning. We were interrupted at 12 am for a breathing treatment. 1 am for vitals. 4 am for vitals. 5 am for CBC . 7 am from a resident dr who cared less I was sleeping and then woke G to listen to his chest. G finally fell asleep for a nap at 1 pm. He would not give in. Too happy to play and eat his ketchup dipped anything, mayo slathered sandwich and read his books that were generously given to him by a Reading Nook fund.

So I sit here and blog and vent. My guess is even tho I just requested a check on lab results minutes ago they will say we are here til tomorrow. I cant imagine his neutrophils going up that much. This is all taking into account that we had no chemo yesterday to help balance the "weak parts" of his blood. He has just been pumped with antibiotics since we arrived and keeping up with his usual oral meds and asthma meds.

I cannot tell you often Charito and I have discussed how different this would all be if we did not have the people we do around us (and also wishing my parents were here to ease it all on my emotional end). How different it would be if Amy never entered our lives and Ayden didn't surprise us all w his arrival. He is the best play buddy and distraction for T during good and bad times. They are like brothers. Having Amy around who even w her own pregnancy and family to care for understands me. Knows how insanely organized I am and happily set up Triston's uniforms, school snacks and school lunches and labeled breakfasts for me through the week just in case. Mamac and her retired teacher lifestyle allowing us to call on her whenever. TitaMel who is always happy to help no matter what. Papac driving here and there or bringing Mcds at a moments notice. My brothers. Neal juggling a new job and family and still coming over to our house to make it a fun Halloween for T and dress up C. Mike for being the silly uncle and visiting when he can. Our friends who have organized Care Calendars for meals. Najette offering to take T to school this week. T's classroom assistant and our friend Ms A offering her assistance for anything. Our fun times during T-ball that led to several of those kids being in Ts current class and allowing for parent relationships for me-one dad even driving T home from school this week and any other time I am stuck at a chemo session. I just text him and he's there. Alysa offering to take pics of my boys bc I struggle to keep up (poor Caden!) My school staff that writes us beautiful messages via snail mail or FB or drop off a meal. Charito's boss being so understanding and allowing C to adjust his schedule. The meaningful phone calls and texts from friends willing to help at anytime-shop for this, pick up and drive Charito here or there, fix this at the house,etc. The clinic and hospital staff-we have not met one person (from dr to housekeeping) that has not been so kind and helpful. The numerous free meal cards for upstairs dining, free parking passes, books and toys and stickers and treats for G. The endless amount of family support the hospital provides. I never doubt that this is the place we should be. Anytime I see our oncologists I am relieved. They are so good to us. And you have heard me mention Jenny-G's number one gal! It is overwhelming and wondrous all at the same time. Thank you everyone. You all make this easier to handle. I truly mean that. I swear when this is all over we are having the biggest blowout party ever! No one will accept any gifts or money or other ways to thank you right now so the least we can do is party it up all together, every person that helped us get thru it!

So enjoy the pics below bc when we was feeling up to par since yesterday he was my funny playful two yr old. We are getting some quality time together. Gotta luv him!

Nebuelizer treatment with a dinosaur mask (how amazing tech gets these days when it comes to pediatrics!). He hates it. We dont administer his albuterol (asthma med) this way at home. He uses an inhaler w a spacer to puff in and out.

Mayonnaise sandwich. This is the only thing he ate all day Monday. Tuesday he moved onto Ketchup w everything. Whatever!

Monday nite dinner. He was finally breaking fever so I didnt care how he was playing with is food. He's two afterall. He did declare his "mess" and offered to "pean up" (clean up) all on his own.

This is the Distraction Center. Since we are in isolation (anyone who enters must don a mask and gown) they wheeled this baby in for us. How cool!

Playing farm

Tuesday morning breakfast. Pancakes, fruit loops and Saltines dipped in ketchup. The dietician stopped by and was fine w what he is consuming so I am not worried. It's a matter of getting anything in him when he's not well and everything in him when he is.

okay update...4 pm

(this is how long its taken me to write this ONE post-all day)

He is still fever free-yay!

Still on antibiotics.

No blood culture results yet or viral indicator confirmation yet. So still dont know what exactly is the prob.

CBC showed low blood numbers (did not change much again, meaning he is still trying to fight something and we dont have chemo to help out this week. We do not deliver chemo when his numbers at are certain levels due to further damage and complications). So other than antibiotics and the hopes that his blood works itself out we wait. No matter when we leave we will go in next Monday to do blood check.

He is truly acting like he is all better. If we were at home without cancer it would have been a virus that was all cleared up and we would be going about our "old" usual. Instead we have a little guy whose blood is all out of whack and needs to remain here to make sure it rides its course the healthy for cancer way.

Nurse Jenny stopped by to see G. So sweet! We chatted for an hour and I felt great afterward. G slept thru it all, unfortunately.

G just had a nice delivery of books, stickers, a cute blanket and handmade pillow cases to take home.

He still wants mayo sandwiches for meals! Drinking plenty of milk. Took a good nap.

We were told by Kwon a bit ago that if no fever there is a good chance we go home tomorrow with antibiotics to be delivered thru his IV port.

And now E from Child Life is here to play w him for a bit. They are playing farm. She is another familiar face from chemo Mondays. He likes her and her hubby happens to be Filipino so we have something in common!

It's been an overall good day. Now to check in on T n C at home. Keep you all posted with any news later. Ill catch up on October at some point and provide you w a glorious gallery of pics of my little grain of rice, Caden, soon!

Port

Cute little story...

Since September (when Grayson's port healed well enuf to the point he was able to have it touched without pain) he has named it. It started out one night in Sept. when he was lying in our bed playing with his shirt. His hands were rubbing his belly and chest and all of a sudden he stopped at his port and froze. He looked at me and asked, "Mommy, this?" I said, "It's your port". "Port?" he wondered. I told him "It's to fix your blood. Make it all better". His hands kept wandering around his chest and he found the top of his catheter near his collar bone. As soon as I saw him stop there and rub it I began to struggle with what to call that. He can feel a bump there. I settled on "your dot".

So, weeks following whenever he is just chilling he will randomly pat his port and tell me with pride "Mommy, my port/my dot". He really sees it as a part of him. Another body part. Kinda like he knows its a good thing for it to be there. It is so cute to hear him say 'port'. That's how I have always seen it. The tool that is saving him. I admire it and him. It truly is an amazing medical tool for such a grand job to be accomplished.

Well, two weeks ago we were lying in bed together getting ready for a nap. G was talking on his toy cell phone while lying down and it slid off his ear. It landed on his chest onto his port. I hear him say the following:

"Uh oh! Sorry, Port. You otay (okay)? Otay Port. You Otay! Mommy, Port otay!" as he patted it like he was comforting it.

I told nurse Jenny the story at our next treatment and she laughed. It is too adorable and grown up of him how he has taken ownership of his port. They arent kidding when they say how resilient kids are!

Then this past Monday I was prepping G before taking T to school. Before every chemo treatment I have to place magic cream (numbing cream) on his port and then (if necessary)additionally (depending on the procedures of the day) on his leg/thigh for a PEG shot or on his spine for a spinal administration of chemo drugs or tap of spinal fluid. And because bruises and scars or scabs take so long to heal bc he is slow to clot I can always find the right lumbar area on his spine to apply the magic cream. It needs to be on him for at least 30 min, the longer the better tho. I rub the cream on the area and then apply a square piece of Glad Press n Seal over the spot. That is great stuff and doesnt hurt to remove. Well, that Monday Grayson only needed it on his port. I finished that up and put his shirt back on. He doesnt cry over this kind of stuff anymore. He actually wants to help. As I was about to put away the Press and Seal he started screaming and crying. I asked what was wrong and he told me "leg, leg!" He insisted he needed magic cream and "paper" on his leg. I tried to tell him he didnt need it today but he would not calm down. He changed his story to his back. He lied on his stomach and screamed for me to take his pants off in order to put cream on his back. I tried to tell him that wasnt happening that day either. No use! He would not calm down. Finally I gave him a piece of Press and Seal and let him figure it out. I hid the magic cream and he had no idea it was an element missing since he had the "paper"to distract him. Wanna know what he did w that "paper"? He placed it on his leg with such precision. When he was done and patted it down, looked at me and said, "There. Better. Jenny better". He remembered it is Nurse Jenny that takes it off and preps all areas. He really does adore her!

Here is my guy taking ownership once again. Its' this fine line between being proud of him for recognizing what needs to be done for him, recognizing routine and being sad for him for doing things/knowing things that no 2 yr old should have to. And I'll have you know that he couldn't wait to show Jenny his leg once we got to clinic. She smiled so proudly. I knew in that smile she understood my struggle of recognition in his little chore he took on that morning. And something tells me there will be more of his take charge attitude to come! Just like when we are admitted into the hospital for transfusions or see Belmonte or when Jenny accesses his port each week-he tells them what order to do things in. He tells them- "Check ears (take temp)...time squeezes leg now (blood pressure cuff)...Buzz light (heart monitor on his toe that lights up red)...time for numbers (check his weight)...I drink it (take his oral meds)...I push (push the non-toxic syringes for blood work or flushing of port)...I hold red, purple (he knows what order to insert the tubes to collect the blood from his port and Jenny actually lets him bc he counts and waits long enuf for them to fill)...and so much more. He is a mini doctor. He loves to help and wants to be in control when possible. I dont blame him. It gives him comfort and I applaude him for that. I'll say it again-------he is truly amazing!