August 23-29

It is Monday, September 8th. I am writing the next two weeks' posts "in the past". I know I am behind in keeping everyone updated but I just had to soak up these past two weeks and all the goodness that came with them. I apologize for any confusion of my tenses in the next two posts. Here goes...

I hate this pic of him. This is the look I referred to in past post. This is what he looked like that week +. But when I think about his skin and bones this is what comes to mind. He was so upset bc I made him walk to the hamper to put his clothes in. You can see the weight loss in his face.. The protruding cheek bones and skinny nose. Horrible. Can you see why we were so concerned about his weight now?! And to add that he was barely walking at this point made us nervous.

We asked the doctor about his weight on that Monday and he had actually gained half a pound ina week's time. They explained that what we were seeing was loss in fat tissue. Not muscle atrophy. NOW that made sense. That was exactly what was missing. I just felt so bad for him. It could not have been comfy to sit on anything other than a soft cushion bc his butt bones protruded so much. It looked so uncomfortable and achey. No wonder he didnt want to sit on the floor without a blanket. Not only is he constantly achey body all over but not he has not meat to cushion everyday movements. Ahhh.


That Monday treatment day we had some good news thrown our way. On Aug 16th there was a total of 10% of blasts (leukemic cells) found in his bone marrow (cant remember if I stated that in past post and remember we were at 85% near diagnosis time). As of Aug 23 he had 3% visible blasts in his bone marrow. Isnt that ridiculous how quickly these drugs do their thang!? In the meantime messing with other numbers. His numbers were "good" but we were still neutropenic (ANC neutrophils at 290 dropping from the previous week-they want over 1,000 to be in the safe zone). I asked if a place like Botanic Gardens would be good place for an outing (if he was up to it) and they said it would be perfect.

We also brought a visitor that day to clinic with us. Big bro Triston. He had been asking me over the weekend where I go and what we do when I take G to see Dr Kwon on Mondays. I knew this treatment day was only chemo drugs thru the IV/port so it was an easy one for T to observe. He was familiar w what was planned for that day bc we had been reading CHEMO TO THE RESCUE off and on. T loved this book and I told him he could see the pictures come to life at clinic. He seemed interested. He was excited that day to be going out w us n G. It had been weeks since the 4 of us had been in a car together. I was excited, too. I miss T n C so much on those treatment days. Too many hours away from them.

I told myself that whatever T got out of this experience was fine w me. Who knew if once there he would be ancey? Not want to look at the nurse access his port and such? So I stayed open to it all.

It went as I figured. I narrated as Nurse Jenny did her thing and used the same terms from the book. It wasnt hard bc Jenny uses them as well. T would peek here and there but was not super engaged. It reminded me that generally T does not like to look at G's port. He will glance at it once in awhile and make comments stating the facts of it usage as explained to him but to stare at it forget it. I heard him mention what next steps were while Jenny did things but that was about it. Then I remembered that the Child Life Specialist, Ahrem, had told me about a doll that she could show T when he visited that allows him to see and touch a port and access it like the nurses do. She went to get it for me (she is typically at all of our appointments during the first few minutes. She blows bubbles and puts on Thomas movies for G to welcome him and distract him from the poking. She is wonderful).

Ahrem walked T thru the stages of port access and why, like she was quizzing him. It was cute and he was so engaged. He kept telling me he was pretending to be a doctor. They poked the needle and the "tubey" thru the doll's port and then pushed water (pretend blood medicine) into the syringes and tubes. Our little scientist enjoyed all that stuff.



We ate some snacks together, watched Thomas and played some games. Before we knew it it was time to go home. As is our tradition-we picked up Mcds on the way home (G still wont chose a toy from the treasure chest after each visit so they continue to reward him w Mcds gift certificates and boy does it make him a happy camper).



That night I attended Parent Orientation at T's new school. By the time I got home at 8 I was exhausted!

Tuesday

This was our lazy day at home. I needed to catch up on laundry and school stuff for T. We had orientation together the next day and I still needed to get some things together for his class.


Boy did his appetite pick up that day and sailed thru the rest of the week. It was official! The unquenchable steroid appetite they warned us about had begun! For most of that week he actually sat at the dinner table w us. That was a lil sense of "normal" we cling to these days.

Wednesday





That morning Auntie Amy watched G n C while I headed to the hour long orientation w T (are you getting a feel for how limited I leave G w others? It s so difficult for me). It was nice to have all that time w T tho. He was ecstatic to be with me. I kept telling me how much he loved me on the way there. We went thru a mini version of a typical school day and met a couple of his friends. I was so happy to hear that a couple of boys from his Tball team were in his class. What a relief. And even better-his teacher classroom assistant is a friend of ours from the neighborhood and close friends. A guardian angel in disguise and such a sweet person. I as a mom was sooooo lucky! Place my HUGE sigh of relief right here******.


After orientation Amy and I made a day of it. It was technically T's last day of summer and we wanted to make it special. None of us had been out of the house in so long. She agreed to tackle the chore of an outing w me. We headed to Botanic Gardens. I figured it was a safe place to be- no big crowds, no gross toys or contraptions to touch and worry too much about germs. And I remembered there was a train exhibit the boys loved. I could not contain myself. It was both a mental and a physical feat. Getting all our stuff together, phone numbers in case something happened w G, the thermometer, meds, plenty of fluids all the while packing up for T and C as I usually did. Then remembering to check G's lips for paleness (indicative of a drop in numbers and need for transfusion), urine output, and his energy level. Not pushing him was the key. He already wasnt walking but I truly felt the outdoors would be some sort of motivation for him for a new found energy. Not to walk but just to keep it up and in good spirits.


I could tell G loved having a car full again. He listened as T n Ayden goofed off in the back. He also reminded me when "my baby crying" (how he tells me to attend to C!) and snacked away. Upon our arrival, we headed to the train exhibit first. (G's love of trains has increased dramatically since diagnosis. Movies and trains comfort him. And his favor over Thomas-well, I cannot deny it. We watched so many of those movies provided by Child Life in the hospital. So many that by now any room we are receiving treatment in-the staff knows him and had a tv set up w a Thomas movie in it already even tho we bring our own stash of movies back n forth! And as you all know I despise the Thomas cult but for my guy now/these days...anything. I swallow my Thomas annoyances and have given in to learning those stupid trains names. ALL 1, 286 of them!) I got a lil nervous when I was told I couldnt take the stroller in. G wasnt walking and was not very comfy being carried bc it hurt his butt bones. But we had no choice. I was able to get him to take a few steps but he was totally content in Auntie Mimi's arms (Amy). Needless to say the big boys had a blast running back and forth catching every train in sight. G had a blast watching them be their goofy selves!


I cant even tell you how wonderful it was to see the smiles on all of the boys' faces. It was "normal" feeling. The way G's face lit up when he saw those trains was priceless. So many times I stood back and watched them just be themselves and I had to fight back tears. The combination of all my fav boys giggling away and that sunshine enveloping me at every turn was all I needed. All we needed to re-energize. To keep up the fight. To be out in public. How wierd it was that as I teared up so often not one stranger beside me knew the depth of tears. The importance of this big day. It may have been an everyday type of outing to the person next to me (even to my Triston) but such a monumental day for us Cacals. I was also so grateful to be sharing it w my fav sister and my Ayden. The only person missing was daddy. I sent him pics and texts all day long. I hated knowing he was thinking of us constantly, worried sick the outing would go well, and of course missing us tremendously. That thought alone also made me tear up a few times.





After trains we headed to find a quiet spot for lunch. I could tell G was looking tired and needed something to perk him up. All this time he had been snacking off n on but we needed a meal. I had packed up some Lunchables for the kids. We found a quaint "end of the road" square-like haven inside the garden labyrinth. It was all for our taking and it remained all ours throughout our lunch.

This spot will continue to be my escape place each time I visit. It is forever etched in my mind. There was something about its being. The textures and layers told my story. Pointy, rough, dry leaves (MY PAIN, MY CHAOS, MY CONSTANT CONFUSION, SCRAMBLED MAMA BRAIN, MY INJURIES UNKOWN TO HEALING AT THIS POINT). A pillowy soft grass covering cradling the rough exterior of the agave plant (THE HUGS, CUDDLES, SMILES AND LAUGHTER I CHERISH IN MY BOYS THAT KEEPS ME GOING; MY TEAMMATE AND HUSBAND AND OUR QUIET GLANCES AND EMBRACES THAT SAY IT ALL-WE ARE GONNA MAKE IT THRU; THE SOFTNESS OF G'S BABY SKIN THAT I CARESS ANY CHANCE I GET; THE HUGS I WISH I COULD HAVE FROM MY PARENTS ON A DAILY BASIS)

The 3 boys dug into their meals and baby C got his bottle fixin'. One of my (and Amy's too) memorable moments of the day was when the big boys made silly faces w their lunchmeat.






And guess who copied them? Laughing all the while he created the best pirate pic ever. This pic is my inspiration forever, in memory of that wonderful day!

Isn't it fantabulous?!

Other great pics of the day....


Then I attempted a mama n boys pic...yeah, right! G was so done by that time (as you can tell!)

Hey, at least I tried!


His steroid appetite kicked in big time that week. He was eating something/anything in sight every 45 minutes! The steroids brought on these need for sodium. He was unstoppable. Hot dogs at 3 am, crackers and tortilla chips, cheese, fries and chicken nuggets. The only healthy thing I could get him to eat was green beans bc they were salty! And he drank milk like crazy! It was awesome!

The rest of the week was full of walks and outdoor yard time. T headed to school for half days on Thursday and Friday. There were tears. I fought mine back. He just kept saying "I just want to be with you, Mom. I dont want to be lonely". He was so emotional. I had not seen him like that in a long time. I just reassured him that I would be there to pick him up and it would all be ok. And each time I picked him up he told me he only "cried a little" and he would "be braver tomorrow". But he also told me how much fun he had and dictated each and every event of his day. I knew it was the initial separation that was hanging him up and I couldnt blame him. We have seen him regress emotionally since the diagnosis. Yet, it never crossed my mind he would be upset at arrival time those first few days. He was so confident at his last school. But, again I had to remind myself that mommy and daddy were not the only ones going thru something. It was going to hit him in phases, too. School and all the emotions and changes that come with it were the perfect breeding ground for his anxiety and insecurities. It broke my heart beyond words. If it wasnt for walking back home with Najette that day I would have balled my eyes out the whole walk home. She kept me occupied. I was so heart broken over T all morning that I had Najette watch the boys as they napped and I ran to Jewel and bought T tons of books n toys and a gigantic cookie pie w Sesame Street characters and a school bus on it. It said "School is Fun". The kid had my heart strings HARD and I wanted to make it all go away for him. I spoiled him like crazy. I couldnt help myself. The past month's of chaos and utter emotional mayhem in our home was poking at my lil guy on a day that was supposed to be exciting and that made me so mad. I hated cancer so much that day! Hated what it was doing to our T. Hate that that is how I will remember is first day of school!
By the following Monday there were no tears. I could see he wanted to cry but held it back nice and strong, even tho I told him it is okay to be upset. I told him I miss him everyday, too. I told him I get happy when I know I am going to see him at the end of the day. But he was brave just like he said he would be. I just had to watch that hesitant little body leave my hugs and walk toward his teacher. He found his own strength and that made me ever so proud of him! I even got several thumbs up my way (his lil way of saying-I got this Mom!).
Anyway...
G was soooooo talkative and silly that week. So many glimpses of his old self, reminding us that he was still in there. Continuing to wow and amaze us. That's my sushi!
It was such a good week and we were crossing our fingers for another one! But blood numbers always tell the story these days.

HATE

I know its a strong word and I usually dont use it (I dont even allow my kids or students to use it) but it is the only word that comes to mind to describe this anger and frustration I am feeling this evening. Havent felt it in awhile, since diagnosis nite and the following day. Hid it/stuffed it for a bit.

I hate...

• that we know the hospital like the back of our hands
• that the best nachos I have had in my life so far came from the hospital cafe nacho bar
• that we know so many familiar faces (and yet it's comforting at the same time)
• the words cancer and leukemia
• what this is doing to my family, my 4 boys and so many others
• that this situation has put people who could talk to us about anything in a position to not have any words to express to us-they are speechless and worried and do not know how to confront us and I dont blame them. I have been there in the past myself.
• that Grayson doesnt see Belmonte anymore
• towels on my couch, bed and cars bc I never know when G is gonna vomit
• watching G go from active w tired spurts to always tired w limited active spurts
• weeks ago watching him run around this house and now he cant even walk without support, we literally make him walk from here to there to ensure we are moving those muscles for him. He def does not want to. He is so achey and sore and weak all the time.
• hearing him whine when you make him sit anywhere else or do anything but lie or sit on the couch or bed. He is just so frail.
• that these medical terms have become part of our everyday vocabulary (even for Triston)
• that I have to wear chemical protective gloves ("the purple gloves") when I change MY OWN child's diaper. The chemo drugs are so potent it is for our safety. He even has a separate garbage can to toss them in. As soon as he sees us put them on he whines and screams the whole time we change him bc it reminds of the people in the hospital
• that I have 6 prescriptions in the cabinet with the words GRAYSON CACAL typed on the labels, he's not even two yrs old!
• watching the once abundant and exciting friendship between T n G take several steps backward in the past few weeks. Since G is not on the floor w him or in the play scene they dont bond like they used to. They are so separate from each other. It hurts to see this. They were so close. Now the limitations themselves limit their relationship. Believe me, it makes me grateful for the lil moments they still are able to continue. As if they figured out how to adapt-book reading, leapfrog n leap pad, movies, eating, and some of their silly jokes or lines are a constant. But oh how I miss them chasing each other around non-stop and zooming those trains all over my furniture. The things I used to yell at them about!
• that some of the new additions to T's home library include books about cancer and who is sick and so forth. He loves "Chemo to the Rescue" bc it is similar to a superhero background.
• that my parents are so far away. Sometimes I want to cuddle up with them and make it all go away, just as we do with our 3 boys on a nightly basis.
• that this is only the beginning of the fight. 29 days of treatment down....and who knows how many more to go

That is all I can think of for now...I know there will be more to come. Just needed to vent off my crabby mood.

Remainder of Week 3: Aug 17-21

Tuesday we began to see his appetite decrease as well as his activity level. He would have what I have been calling "spurts". 20 min of play=40 min nap=30 min of snacking=another catnap=more play=couple hour nap (usually 11 am -2 or 3 pm)=more snacking=more play and so on.



I was able to get him outside for some sunshine (and quench T's need for speed). They played well. But there is just no warning of when G is done. It is instant shut down. One minute he is laughing and hammering at his tool bench and the next he is asking me to hold him so he can fall asleep on my shoulder ( and he did while I watched T play in the backyard, G and I hung out under the gazebo while he slept). It was hard to see the beginning stages of this low key kid. He has always been so active and trying is BESTEST to keep up w T and did a pretty good job at it, too. I knew this was only a taste of what was to come.

As the week went on his appetite decreased even more. I was pushing fluids as best I could. All he wanted to do was watch movies n lie on the couch. Thursday and Friday were worrisome. I was starting to think he was dehydrated. I called Nurse Jenny to ask if the behaviors of Thursday n Friday were typical. Behaviors:

• 2-3 bites of hot dog or crackers or sausage or cheeseALL DAY!
• sips equaling a total of one glass of fluid ALL DAY!
• 2 wet diapers entire day
• some spit up when he burped
• avoided all milk and pediasure products
• Going from some form of activity to level to nearly none-he barely lifted his head off the pillow on the couch. He did NOT want to leave the couch. So quiet and drained. Total opposite of the spectrum in terms of motivation or activity. You could tell EVERYTHING ached. I mean, I know he is often achey since the hospital but he SCREAMED when touched. So crabby and impatient.

Jenny's verdict-all normal reactions. BUT we needed to push those fluids to avoid dehydration. She was not concerned about food at that point just fluids. We needed to focus on that priority. Seeing as it was Thursday when I spoke to her she told me if he did not have a urine diaper the next morning to bring him in for fluids. I was to call her either way. Well, that nite we were so nervous about not producing a urine diaper for the am that we used to a syringe to force half a cup of juice into him. Within five min he vomited. I called Jenny to report he did have a pee diaper when he woke but told her about the vomit. I guessed it was our doing. She agreed. That belly was not ready to hold it when so nauseous and we needed to accept that sips all day long were good enuf. Vomit only made us take steps backwards. She was so good with me on the phone. She understood my frustration but offered me solutions. She said to monitor him over the weekend and we would give him fluids no matter what on Monday. It def helped that as I was speaking to her G asked to sit at the table w T and eat yogurt just like big bro. He then drank on his own. She was pleased to her it.

I only wish the rest of the day went as well as that am. His appetite went back to one or two bites all day. But I was able to bribe him into sips. He could not have his pillow or blanket til he sipped. This was the only thing I could use as motivation. If all he wanted to do was lie on a pillow and some ratty afghan then so be it, but he WAS GOING to sip his way to comfort. It worked and he cooperated. THAT is how tired and drained he was.

It was also during these past 3 days or so we noticed him dwindle. All of a sudden he seemed to look like skin and bones. Those muscles n leg meat we bragged about back in June had disappeared. So fast. We were taken back. Especially when everyone warned us that the steroids he is on would cause a ravenous appetite and we would have to monitor his intake bc he would beef up so quickly before our eyes. That is what we were expecting. NOT the idea of being able to feel his butt bones and skinny arms forcing us to be cautious when we lifted him. He felt so frail. We had to drop from a size 4 to 3 in diapers (and to think we were so excited when he finally reached a 4 mos ago!). I could only find 3-5 pairs of shorts that didnt literally drop off his waist when dressing him. He was fitting into 9-12 mos t shirts and 12mos onesies to sleep in ( I kept putting him in onesies bc he would put his hands down his pants and we sure didnt want those germs getting to his mouth. It was bad enuf we were concerned about his thumb sucking and germs that I put a bandaid on his thumb to keep it out of his mouth. It worked. This habit became really bad when he was in the hospital seeing as it was the only thing that comforted him while being examined). I observed that the width of his bicep was the same as Caden's.

So once again I called Jenny. She told me that this is the exact reason why they weigh him every week. They have a percentage they go by to determine when he would need nutritional supplements (dietary changes or IV intervention). They were not concerned as of last Monday and would have told us then. We didnt notice this body frame on Monday. It was literally the past couple of days. She mentioned that dehydration and loss of appetite can have alot to do w it. And the fact that he is not active. Lying on the couch was not the best for this factor but you cant push someone who doesnt want to be pushed right now. We needed to respect the pain he was in and do what we could when he was able. It all made sense to me. I just told myself that any lil opportunity that presented itself for him to move or walk or anything I was gonna take advantage of it.

And I did...

• if he wanted a snack he had to walk to the kitchen to show me what he wanted.
• if he wanted milk he had to come pick the cup out
• after we changed his diaper in the am (so glad I didnt go hard core on potty training like I had intended to or I would be dealing w major regression when we get past all this) I had him put his clothes in the hamper and gather his day clothes from the night stand like he always had
• I still had him dress/undress himself as he did in the past (as best as he could w courtesy to his strength level on any given day)
• he still had to feed himself
• walk to any given item he was interested in

I just kept trying and of course on bad days I watched what he could or could not handle. But I wasnt going to give up. He needed to move that body and work those muscles even if it meant walking from point A to B only twice a day. At least he wasnt on the couch or bed w out any movement at all.

That Saturday was a lil better. His appetite was decent and his mood was perkier. Some smiles and laughs but still a lil off. But the important thing was he was urinating more often and I was not as concerned as I was Thursday n Friday. It was a tiny relief for us.

Sunday was GREAT! Now great is all relative these days but here is what he did. He woke in best mood. So many signs of the old G. The B.C. (before cancer) G. My lil sushi. His breakfast of choice was a corn dog (we were moving up in the world and past regular old hot dogs ). He ate most of it. Then he overheard (that boy has always had super human hearing skills) Charito and I discussing the list of errands he n T were to complete that day (another way we gave T his own special time w each of us were these lil outings-my boys have always been awesome shoppers). G immediately asked to go outside. I jumped at it. This from a boy who hadnt left the couch since Thursday. He asked for his clothes and shoes. I figured this spurt was not going to last long, maybe 15 min, so I took him out front for walk up and down the block. He began to whine. HA! Boy was I fooled. That lil rugrat figured out Charito and T were leaving the house and he wanted to go, too. Where could he go?! Where could I take him?! He was still neutropenic and it was the weekend. What place is NOT packed on the weekends. But he was persistent. He started crying, "Go car now. Please, mommy." It was breaking my heart.

It hit me! Mcds drive-thru. It was the best I could come up with. I mentioned it to him and he lit up like a Xmas tree! I poked my head in and told Charito to hold off for a bit while he and I ran over there. We entered the van. He was so excited. It was too funny and adorable at the same time. He kept repeating, "Mommy, Going to Donoowwwds!". Repeating it as if to confirm this wasnt a dream. He was actually out and about, right mommy? He told him he wanted chicken n fries. I bought him a shake, too. He even told me we needed to get something for daddy and Tis Tis (Triston). That is when I got teary-eyed. I was finally out again w my baby boy and he was his usual affectionate self -remembering others along the way. He told me "luv u" over and over and I gleamed. It was the BEST ride to Mcds I have EVER had in my life. I dont care if it was just the drive thru. It was 20 minutes I craved w my boy out in the world for over 3 weeks and I cherished every minute of it. Did I despise the fact that we couldnt head to some awesome park or museum, of course! But I have learned rather quickly that we have to accept the little moments as wondrous moments. They are all superb in their own right. I am truly grateful for them.

Monday, Aug 16

This was our second treatment at clinic. We were now regular Monday visitors til further notice. Neal and Amy stayed w T n C. Charito was in the habit of getting to work at 7 am or so, leaving to meet us at clinic and then going back to work. His boss has been so supportive of Charito's attempts "to make it work". I was proud of him for trying to save face at work and split himself into two on days like this. I KNOW it could not be easy to leave us at clinic and return to work when all he prob wanted to do is crawl next to his lil boy at home.

It was so wierd how people recognized us already. They were not kidding when they said you become like family and quick. We walked right in without a hitch. We jumped right into routine measures. I made sure to put his "magic cream"/EMLA on his port before I left and refrained from giving him his daily meds bc we were scheduled for bone marrow today. That means no eats or drinks since 4 am. I wanted to cry w G this am when he begged me for milk the whole ride there. He just didnt understand why not.

Numbers good again. WBC 4.47; hgb 10.0; platelets 71; ANC (neutrophils) 450. In comparison to last week his WBC got slammed again; hgb dropped tadbit but still above 8 so that was good; platelets went up and stayed above 20-good news; but we were still neutropenic (vulnerable to immunity). Guess I wasnt leaving the house again this week! They want that number above

1, 000. That seemed like such a feat when we just keep pumping him w poisonous liquids to kill those blasts.

BUT THE BEST NEWS OF THE DAY-----

Our original bone marrow the week of diagnosis determined that 85% of his bone marrow was occupied by blasts (leukemic cells). WE WERE NOW DOWN TO 10%!!!! See what a lil bit of poison can do for ya! My jaw literally dropped when I heard this news. So odd to get excited about such numbers. The thought that these hazardous chemicals entering your baby's body are doing the job they are supposed to do but continue to upset so many other aspects of his body. A Catch 22.

Because there was no need for transfusions they asked if we wanted to do the bone marrow in clinic. That would mean no trip to PICU, no heavy sedation and we could remain in the room. They would give him morphine, magic cream for his hip area, and a mild sedative and of course the drug that helps him "not remember"the whole procedure. We agreed. G did so well! Took to the sedative great, did not take that lil body much anyway. We had his eyes open every once in awhile like he was taking a catnap. They formed his body into that c-shape and began. Jenny held his body n head, I held his hands and Dr Kwon got to work.

I was so intrigued by the process. He took this long thick needle and poked it into his hip area. Each time he twisted it red fluid (bone marrow) filled into the tube attached at the top. He then placed drops onto slides to be examined. G whined when the initial poke occurred but nothing after that. Jenny kept repeating how amazingly well he was doing. Dr. Kwon turned to me and said, "You okay, mom?" I told him I was fine and was actually interested in it. I have always been into medical stuff. I joked that my husband may possibly be in the fetal position in the corner but who knew? Our backs were to him. I heard Charito chuckle. Most kids wake from the mild sedative crying and upset. G woke a bit then took a lil nap. While he napped they pumped him of chemo drugs. Once he was fully awake we headed home. The nurses overheard him ask for fries in the hallway on our way out. They laughed at how cute he was. They offered him a toy from the treasure chest (a HUGE chest full of $30+ items). He tossed threw it but told the lady "no thank you" and asked her to close it. They told him we has such a trooper that day he deserved something. They asked him where he goes for fries. He looked at them like they were nutso. I asked him "Where do we get fries....at ....?" He yelled, "DONOOOWDS! " Yup, McDonalds. They then handed him two envelopes full of Mcds gift certs. I showed them to him and he smiled up at me and happily said, "Let's go, mommy. Bye lady" and proceeded down the hallway. He was outta there!

Napping during my chemo.

We hit up Mcds and joined the rest of the clan at home. G ate a bit and played a bit. Then napped. They warned me he would prob throw up from the morphine even tho they gave him Zofran to curb the nausea. As the day went on I forgot this little tidbit and was disgustingly surprised when it happened. He was sitting in my lap and before I knew it we were both covered in it. That was followed by horrendous diarrhea. Charito and I were stuck. Technically he was not supposed to get a bath after a bone marrow but we noticed his hip bandage was covered in stool. We decided there was no way this could be a sponge bath. We tossed him in the tub and used a cup to wash him down, we figured if he didnt sit and soak in a tub of water we would be okay as long as we made it quick. It worked. It is just unfortunate that the drugs have made him so sensitive to touch that he absolutely hates baths now. It is quite the chore to get thru even the quickest wash down on a good day!

The rest of nite we were vomit and poop free. By then everyone was ready for a decent nite of sleep. The boys and I slept til 8:30 the next day. It was sooo nice! But watch out for his constant crab apple state in the mornings. It has not subsided!

Our first week of "outpatient treatments" and home

Sunday, Aug 8

The nite before I called my dad. I needed to hear his voice from less than 12 hours away. He was flying back to Arkansas today while my mom stayed behind. I am STILL a daddy's girl. He would return Thursday for the drive back w my mom.

We made today as normal as possible. We checked his temperature at least 3 times that day. We wanted to get in the habit of that. Anything at or above 100.4 called for an immediate visit to pump him w antibiotics regardless if he was showing signs of a cold or virus. Taking no chances.

Other rules and restrictions that were part of our life:

• if he looked sick at all call them (umm, he is sick-how will I know?) They told us to look for lethargy, pale lips (um, my kids are caramel colored-how will I know? His lips and gums would turn white)
• bleeding, new bruises, blood in stool or urine
• poor urine output
• mouth sores or thrush (very common)
• constant vomiting or diarrhea
• constipation
• let him be as active as he is tolerable to
• watch for redness or swelling or heat spots near his port
• bleeding gums or teething or tooth loss
• no baths 1-2 days after a bone marrow or spinal tap
• do not give him any medications without consulting w them first
• no home repair or wet basements. When we clean he is to not to return to the cleaned room for an hour or more
• when he is neutropenic (http://en.wikipedia.org/wiki/Neutropenia) -low immunity and very vulnerable to bacteria and viruses causing more hospitalization- he is to avoid crowds (malls, movie theaters, museums-all the fun kid stuff in my opinion)
• and of course WASH HANDS, HANDS, HANDS. To all people who enter our home or he is around.
• no raw meats, fish and wash and skin all fruits n veggies

This was all on top of not knowing when the "things cancer does to you" would start appearing. It had been a week w one chemo treatment and he had no signs of nausea, low activity, or significant drop in appetite. They were impressed. We just felt like we were waiting for the shoe to drop. When we left on Saturday his WBC was 3.9. Low compared to the average but still what they wanted to see (gosh, remember when that number was 350+?)

But overall we had a nice Sunday. But stayed low key bc we just felt on edge. We watched movies and snacked and of course-played trains!

Monday, Aug 9

Because we didnt know IF and WHEN G may lose his hair my WONDERFUL AUNT CANDY came to our home to give the boys the haircuts they were scheduled for the week prior. The boys call her AC. She is like another grandma to them. She has done my hair since I was a baby and now takes care of my fabulous boys (including daddy). She is amazing and her shop is out near Schaumburg if you want to go see her!

So she and my mom came to visit. Charito and I decided we would cut the boys really short like a buzzcut. This was more so for T. We didnt want him to possibly wake up one morning and find fuzzes of G hair on a pillow and be apprehensive about it. We thought traces of hair would be less shocking than chunks. Again, this was us guessing and assuming what it might be like if it fell out at all.

THEY LOOKED GREAT! I felt bad for G tho-he was obviously still a lil sore and was forever scarred when it came to be touched n poked and this was the first time he whined and cried EVER during a haircut (which he's been getting almost every 3-4 weeks since he was 10 mos old!). They ROCKED their new dos.

Tuesday, Aug 10

Our first outpatient treatment day. It was at 9:30 am. G was scheduled for another bone marrow and spinal tap to track the progress of chemo and determine if cells were multiplying. I was cool and collected that morning. I was in "war mode". Charito and I left T n C behind and headed off. G was in a good mood. We were told to go to PICU first. Once we arrived up there we saw Dr Kwon in the hall and he asked us what we were doing there. Apparently we were supposed to go to clinic first (this is his office of treatment in the PEDS department above my normal pediatric visits). There was already so much confusion seeing as we had 3 different people tell us where to start our day the Saturday before.

We headed down to his office. We entered that office and were told we needed a referral. What? No one mentioned that to me, seeing as Kwon was now our dr. I didnt get it. So, I had to go down to Belmonte's office and get a referral on the spot. They gave me some hassle about it. There was confusion and eye rolling and questions. I saw it was the first time I had to say it aloud "leukemia" to strangers. Belmonte was not in. I just started crying. I looked like a complete fool. It was so disorganized. A day that I thought I could control and manage as the first time a mom of a sick child and I was already failing. My tears must have freaked them out bc before I knew it they were bringing me water and telling me a nurse would take care of it immediately. They even called upstairs permitting them to start the process and they we email it to them within the next 10 min. I apologized for my crazy behavior and walked out feeling like such a idiotic child. I was depleted and G's stuff hadn't even begun.

I entered his treatment room (looked just like his usual ped exam room) still crying. Charito's eyes just melted for me. He knew how I was feeling and why.

Our nurse (we discovered is one of a constant 3 ) was Jenny. She was so patient w us and explained everything so clearly and what type of routine we would go thru every week. They accessed his port and drew blood. No one mentioned to me that I needed the prescription for EMLA ( a numbing cream/"magic cream") to be used that day. I was supposed to place this on his port with a bandaid (tegaderm-film) over it for at least an hour prior to our arrival. That way the prick into his port would be nothing to G. Yeah, failed that task, too. I was so frustrated w myself.

They pricked his port and drew blood. Within 20 min Jenny came back w the lab results. Hgb was 10.8 (good it was greater than 8), platelets 59 (greater than 20 was ok) but he was still neutropenic bc his ANC level (amount of neutrophils) was 360 and they want it above 1,000. The numbers did make it okay for us to head to PICU for the bone marrow n spinal tap (Lumbar Puncture - LP). We were familiar with this procedure. We saw familiar faces that recognized us and G. It was a surprisingly nice feeling.

They gave him his sedative and Charito and I headed down the hall for him to wake up. I still cant watch him "fall asleep". I walked out seconds before he closed his eyes. Less than 20 min later Dr Kwon greeted us again and told us he would have those numbers for us next Monday (oh yeah, we had the chance to move our treatment days to Mondays or Wednesdays instead of Tuesdays. We chose Mondays bc there are morning n afternoon hours that work better for us).

We watched G wake up and he was ready for more movie watching and lunch munching while his chemo drugs were pumped thru his IV. I cant recall but we may have received a transfusion that day also. We were home by 2 pm.

Wednesday, Aug 11

G was missing Gramma and Grandpa and Auntie Amy that day. He called them on the phone. It was too cute! It was the longest he had spoken to anyone on the phone before!

Thursday, Aug 12

Still going strong. His appetite was limited but he would eat one big meal each day that week. He napped longer but was playful and silly. His movie addiction continued (thanks to our hospital stay) so he expected every movie he requested to be played. It was like I was teaching sharing techniques all over again.

I missed my mom even tho she was 30 min away. I called her to vent how we had barely spent time together in 2 weeks. She felt the same. We had our talk and our tears. I put the boys down for naps (including myself ) and by the time I woke my mom called to say she was on her way. My mom is awesome!!

By this day you could tell some things made him tired more quickly. He would eat, then rest on the couch, then play for 40 min and take a catnap, then snack, then rest. He was low-key.

Friday, Aug 13

He pretty much continued the same pattern. We were beginning to notice he was not a happy morning person at all! It would take him at least an hour and a half to perk up and even agree to drink anything. His appetite was minimal but w the frequent consumption of pediasure there was no cause for concern. They explained to us that the medications he is on (a separate post I will create soon) will alter his taste buds and toleration of certain textures. Foods he used to like he may no longer and vice versa. All he wanted to eat so far was fries and hot dogs and anything salty.

My parents were leaving later that day. This was also the completion of Charito's first week back to work in 2 weeks (week 1 for Cadens birth and coming home, week 2 for this junk). I figured since G was in a decent mood once he shook his crabbies away it would be no biggie to head to Roselle for a couple hours and still be home by nap time at 1 pm ( a pattern I was beginning to see in him for his long 3-4 hour nap of the day). It was my first time loading up 3 kids to go anywhere. I felt out of practice being in and out of the hospital w no kids to tote around. It took me awhile but I got my act together. I brought Mcds for everyone and enjoyed my last day with my parents and brothers and Amy and Ayden til I dont know when.

Saturday and Sunday

We filled our days with outdoor play in the yard, car washing, and board games. G's energy level was starting to slow down but not to the extreme they had warned us about could happen. He was still his happy self. Appetite was inconsistent. This whole week I had kept a daily journal documenting what and when he ate/drank/pooped and peed. I wanted to track the down hill slide when it would hit.

It is ironic to me in retrospect that we stayed so "local" that week bc we were unsure of well, everything. We had some visitors but limited it each and everyday. I wish I had had some insight into the upcoming week's behaviors and changes bc that is the week I truly felt in "lockdown". I only called the dr office once that week (on Friday) to be sure the loss in appetite and slow of activity was normal. Jenny assured me all was "normal". Normal, for a child w cancer ,that is. Yup, this was our "new normal". Yippee! (INSERT SARCASM HERE!) She reminded me I was asking all the right questions and observing all the right things. She told me I was doing great. Doing what I should be doing. That felt good. We would see her on Monday when we started it all over again.

Saturday, Aug 7

Once again our gut was right. We woke to a hgb of 7.3. They did not feel comfy sending us home for several days with that number so he was scheduled for a red blood cell transfusion. Remember-these are the cells that carry oxygen. The cells that effect his energy level and body color and so much more. It was to be a 4 hour transfusion.

Luckily, again, bc of that port G doesnt know the difference. It all just gets sent into that IV w no awareness it is even happening. The nurses even had their own tricks up their sleeves on days he was crabby. Days he figured out that when someone walked in w something in their hands they would be near him, disturbing him oneway or another. So, they just moved his IV tubes ("tubies") over to the side of his hip and covered up their actions w a blanket. Out of sight out of mind.

We ordered up some breakfast and then some lunch and waited for our assignments and discharge papers. A neverending list of DO's and DONT's for our return home. We would be back on Tuesday for more treatment. But as we became used to this form of "treatment" what did outside treatment look like, feel like, mean for our schedule? Everyone around us made it sound so simple. You come into clinic, and depending on the plan of treatment for the day you are here a couple of hours or all day. But be prepared that if labs are not to our liking you may be here overnite. And def expect to be here overnite if he ever has a fever bc we dont take that lightly and he needs to get antibiotics and be monitored overnite. So many what ifs, more than what I was used to in life that's for sure.

Once the transfusion was over we were ready to walk out of there.

They removed the bandages off of his port. This removal took us a bit by surprise. Originally it was described to us that the access point (part that looks like a button) would be about the size of a quarter and about that thick under his skin. This one def protruded much further than the depth of a quarter. But we didnt take into consideration in our visualization how tiny G's chest is. Had it been the chest of preschooler or adult it would not stick out so. But overall it is better than some tube hanging outside of his skin/chest near his collarbone.

The snake like S you see above his nipples is bruising but the tube leading up to his jugular artery lies right there. The red dot you see on the button/circle part is where the needle gets inserted each time he needs fluids or meds. That disc/button is made of metal but the center where you see the red dot (a scab over his puncture hole) is a soft rubbery material with direct access to the tube behind it. It can be punctured for years to come before it wears down. The bluish-black linear mark below the button is the incision scar on his skin that they needed to make to slide the metal disk/button under his skin. The bruising has gone down by now but is taking awhile bc he is prone to bruising and clotting due to his platelet levels.

I sent daddy home bc I realized I had no outfit for him to go home in! Remember, I had to remove that "arrival" outfit from our bag bc I just couldnt look at it anymore?

Once we started packing up our room (which took so long after living there a week) I started feeling anxious again. It started in my stomach and crept to my throat and before I knew it I was crying. It was an overwhelming feeling. A flooding feeling. We were leaving the care of so many people to try and figure this out on our own for a couple of days. I was happy to leave, be home again, with all 5 of us, but at the same time terrified. What if we couldnt do this? What if we made him worst in a matter of days? The nurse walked in on me and calmed me down. She went over phone numbers again. She reminded me no question was stupid and to call with anything that was on our minds. They were used to it. Okay, so I was officially given permission to be that mom that called constantly and everyone would know by name, right? Okay, as long as she said so.

This whole week in the hospital G went from his usual self to days of quiet and small appetites and then goofy self again. He consistently sprinkled us with his humor and quirks. He ALWAYS used his manners, even at his lowest energy day or when being asked to take part in something he hated. Some stranger would come in to examine him, G would cry and then as they left he would mumble thru tears, "Bye OR see you later OR thank you". You see how he won them over?!

He never once mentioned home. I suppose as long as family faces were a constant what was there to worry about in that baby mind of his. Often he would page thru pics of us on daddy's Ipad. Somehow he navigated that thing better than I and found photo albums of all sorts. His fav pic was one of T blowing the camera a kiss. G would say, "Tis Tis (Triston) give kiss kiss" and laugh. It was adorable. Then we would lean over and kiss us.

So, when we pulled out his clothes and shoes we were taken back by the excitement his body immediately expressed. It was unbelievable. He knew something was up. It was like something clicked inside him. An I'm Outta Here attitude. I am done wearin' a green gown! We hadnt even mentioned home, yet. We just lied his clothes out on the couch. He asked to get out of bed and walked over to them. He started to put them on. No one could knock the enormous smile off my face at that moment. He told me "Mommy, I stuck"and needed "help". We asked if he wanted go home and see T and C. A ginormous smile came across those tiny lips and he said YES! Now I started to get teary-eyed. He really didnt see what this all meant to us. Or maybe he did. Once he was dressed there was no stopping him. He couldnt wait to get out into the halls. He noticed I didnt have my shoes on. He grabbed them, brought them to me and said, "Here, Mommy. Shoes on, please." He was actually rushing us to get out of there!

Then as Charito took a couple of trips down to the van G kept telling me "Come on, Mommy. Go outside now". I told him we were waiting for daddy to walk with us. When Charito returned we were ready. We stepped out into the hallway. Nurses began to wave and smile their bye byes to him. He just smiled back and said byes back. It was like he was some celebrity parading down the hall. So many faces we became accustomed to taking their time to say bye and " see you next week." It was unforgettable.

G was just glowing with attention. Part of me is convinced he was just so damn proud of us-mommy n daddy. All to himself. Headed to a place he wanted to be. I will never forget that image of us. He insisted on holding both our hands. There we were-Daddy on his left, me on his right and I was holding the hand of the huge Elmo balloon on my right. The four of us toting down the hall. I was crying softly to myself all the way down the hall. Happy tears. Proud mommy tears that we were WALKING out of here. Several days ago I didnt know how and when we would be leaving. I heard nurses whispering to each other-look at him walk right out of here. Did most kids get carried or wheel-chaired out of here due to lethargy? It made me feel grateful. Grateful for Grayson's spirit and smile and spunk. That day I believed (and continue to believe) it is those reasons will keep he and daddy and I in check. Always giving us that walk down the hall to HOME each and every time we visit that place again.

Didn't daddy pick the best going home shirt?!

I took that pic above as we waited for daddy to pull the van up. It was a little tricky figuring out his car seat buckles with his port occupying the space between his nipples where the clips are supposed to rest. I just placed them below his port and hoped for the best. I didnt want him to be uncomfy. I knew it was still sensitive.

That drive home was so surreal. Just over a week ago Charito and I were taking the same drive w one son in the car just like this gorgeous Saturday. The day we brought Caden home. Now we had one son w us again and it was our G-man. It is always wierd to me when I dont have all my kids in one place. I will NEVER get used to that.

We pulled up to the house around 7 pm (it took us such a long time to get home w traffic and stopping by the pharmacy to get all his meds) and G immediately noticed Bryley in the window. He shouted her name. He was in such a good mood. Like we hadnt been thru the rollercoaster at all. He gingerly walked up the stairs and into the house. He lit up when he saw Triston. They gravitated to the trains just as they always had. Gramma and Grandpa were there bc they had brought T n C back to the city. They stayed a bit but then gave us our space.

We ordered pizza and made it a family movie nite. Everyone ate well and we eventually headed off to bed by midnite after C's last feeding. Everyone slept in the "big bed" (our bed) that nite (and have most nites since...I dont feel comfy leaving G out of my sight just yet).

I quietly cried myself to sleep that nite. It was mixed emotions. Sheer exhaustion and god knows what else. I just knew I was home and had 2 days of us. Just us before we went back to that place. I dreaded the word Tuesday for the next 48 hours.

Friday, Aug 6

Today was another big day. G was to receive his PEG shot, another chemo drug. This would go right into his thigh muscles (both depending on his weight that day and dosage). I made sure to crawl my butt out of bed and get to the hospital by 8:00. The PEG could create pancreatitis, high blood sugar, and alterations of his clotting system (which he already had issues with). When entered his room Dr. Kwon walked in seconds behind me. He announced we could go home today. HUH? I froze and probably dropped my jaw. We still had not received his blood numbers for the day. The first thing out of my mouth was in regards to that. I said that I would feel more comfortable w that decision after we saw his blood counts. Then maybe hold on one more evening and leave early the next morning. I looked at Charito realizing I hadnt even consulted that decision before opening my big mouth. He gave me this nod (and this gleam in his eye like "good call, partner"). Kwon was okay with that and told us he would stop by later.

You are probably wondering why we didn't jump on the chance to get to escape when it was given...here is what went thru our minds:

• For a whole week now we received 1-2 reports a day with his numbers. Numbers that explained or would predict he would be weak or pale or whatever that day or the next. Warnings from plenty of people.


• His care was safely in the hands of professionals and a bit of ours. That was comforting. They were the ones who knew what to do.


• How would we know what to do? It was a very scary feeling as badly as I wanted to be home.


• We had arrangements for the evening for T n C and didnt want to interrupt that. T had already been missing us so much. A few meltdowns at gramma's. Tears to me on the phone that he missed me so much. Not easy for me to hear. I didnt want to just uproot him from what he had planned for the day, more disorganization and unexpected events were not what he needed.


• We knew his platelets were low on Thursday and wanted to be sure that would not be an issue over the weekend. We were not expected to return to the doctors til Tuesday. That seemed like such a long time to be without numbers and predictors. We have coined the term "living by the numbers", that is our way of life now. It predicts everything-how vulnerable he is to both the slightest and grandest of stimuli.
  

We called our families and told them the news but also made arrangements for T n C to meet us back at home early afternoon Saturday. I requested the nurses begin the discharge process so we were not waiting around for hours tomorrow for paperwork when we had been given the green light today. They agreed.

By lunch time we were handed his numbers for the day. Our gut was correct. His platelets dropped even more. At 15. Later that day he would receive a platelet transfusion. We would also keep an eye on his hemoglobin. It was 7.6 and we remembered them saying that 7 or below is when they do a hgb transfusion. (I should note that WBC cannot be transfused. It is the job of chemo to kill the leukemic cells/blasts which in turn attacks the WBC good or bad ones. G's WBC went haywire w the leukemia, did not know to stop multiplying both normal and abnormal / immature cells resulting in the ridiculously high amount we started the rollercoaster with). The transfusion occurred at 4 pm and at 7 pm the kidney specialist wrote us off. We were officially off his list. No more diruetic or meds to monitor uric acid levels in his urine. Kidneys were clean! Good news! Other good news-his WBC that day was 4.3! Boy did some WBC get fried or what? Mind you that is low in comparison for a normal count (5-19.5) but we were on the track on making sure leukemic cells were not taking over like they had when we were at 350+.

I went to bed still finding it hard to grasp we may be going home tomorrow. I couldnt get my hopes up. The numbers could change overnite...and they did.