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.

Thursday, Aug 5

The only reason I have gotten this much blogging done in one day is bc G has done nothing but lie on the couch all day. SOOOO not feeling well.

I spent Wedesday nite in Roselle again. Charito and his mom were at the hospital overnite. I wish I could say I was getting back to Roselle in time for a fam dinner but no (like the good old times). Often reports were given to us round 7 pm -ish and I wanted to be there to hear them, especially the game plans for following days. I would typically arrive in Roselle about 9 ish. They would hold some dinner for me on the stove. But I really didnt care about eating. I wanted to see my boys. By this day I was so fearful Caden didnt know who I was. I had only had 5 days with him at home before all this came crashing down on us. I received great reports from my mom and Amy about how lucky we were-"we had another good baby!" That was a pleasure to hear. But I wished I was the one with that observation myself. I had to hear from others. Apparently he was a good eater and good sleeper. They were only waking once in the mid of nite to feed him and of course like my other boys-an early riser.

Today C had his 2nd newborn aptmt to track weight gain. My mom, T, C and I headed to the hospital in the am and I called Belmonte's office when I arrived to say Id be down in about an hour. I wrote out a bunch of notes re: his eating n sleeping habits, number of stool n urine diapers, my mother's observation of how he already leaning and hanging out on his side. I was prepared bc he mentioned our visit could be as easy as having the nurse weigh him and Belmonte would call me or come upstairs if he had concerns. After all, he knew our "new address" 2 floors up, as he joked earlier in the week.

I decided I wanted to walk down to C's aptmt for a change of pace. Even a different view of the hospital. Familiarity. An office I enjoyed going to, not one I was dumped and left to fend for myself in. One with such question marks all around it.

Gramma, C, T and I arrived with tons of yummies. Auntie Mimi (Amy) hooked G up w a genuine football dispenser of MnMs. He loved it. It became more of a game than actual consumption but hey!

Playing w the dolls that have ports like me!

While my mom and I headed to Caden's aptmt, T and G n daddy watched Thomas and ate MnMs. I was taken into a room for C right away. The nurse weighed him and I handed over my "report card". I was getting ready to pack up when there was a lil (very recognizable) knock on the door. In walked Belmonte. You can guess I grinned from ear to ear. He exclaimed, "Of course I was coming into see you. I was actually about to head upstairs and check on you but then my nurse let me know you were here." He gave C the look over and declared him a A-OK once again. He asked about G and mentioned his numbers for the day. I didnt even know them yet. He obviously had been checking up on him daily. He said his WBC at a 12. HUH? 12, 000!!! We went from 58 to 12 in one nite. This still baffles me how this works. Absolutely amazing. Of course w good news always comes the mix up of other blood numbers and side effects. We gave our thx and proceeded back upstairs. Belmonte told me once again if we needed anything to give him a call. He even extended my next visit for C. I knew it should have been at his 3 wk mark but he told me to see him again at 6 wks. He understood what my next few weeks would be like, a better picture than I of course.

When we arrived back at the room the bros were hanging out together. I suggested some daddy n T time. They went upstairs to the cafeteria for some grub. I started thinking how T should become familiar w the perks of the hospital just like us. Who knew how many visits and treatments he would partake in...it was best to start now. T returned with the "biggest piece of pizza in the whole wide universe" and chowed down. Then my mom and I had our turn. We returned w tons of sweets for T n G. I wanted it to feel like a special lunch no matter where we were. Memorable to me at least. And C, well he did what he does best-slept thru it all. There was something about that hospital air that knocked that kid out. He would take his 3-4 hr nap during those visits. So sweet.

A few hours later Charito walked T, C and Gramma down to the car to go back to Roselle. I told her I would catch up with them there later. T approached me before he left and asked if "I promised I was coming to Roselle." I told him "I promise, I will be there before you go to bed "(which wasnt hard bc he was partying it up til midnite almost every nite). Passed out my kisses and crawled into bed w G for a nap.

Pretty soon Dr. Goodell came in. This was Dr. Kwon's partner, the first time we had met him this week bc he had been on vacation. He was def the opposite end of the spectrum when it came to presentation and delivery. I asked the kind of questions that I wanted clarification on. What is this, why is that, what does it mean? He began by assuring me that there is nothing we could have done, avoided, prevented or not exposed him to in the past that caused this. He wishes he could say how and why it got Grayson but he couldnt. They just dont know the cause and they why behind it. But with it being 2010 they know the attack plan and very well. It was not genetic. We just needed to roll w the punches. He also explained that here we have "sick blood in a boy's body that is similar to a clogged kitchen sink. The chemo is like dumping a whole bunch of garbage/poison down those pipes to clear it up. It's gonna quirk the system and need it's own remedy to fix that. This is why we have so many different specialists on hand watching all of Grayson's functioning systems. And with good numbers comes bad numbers w remedies to fix those issues. A constant battle." He continued to explain that we will see him have good days like his old self and days he won't be able to get out of bed. Without a tough road ahead but with so many people behind him to get through it. I liked him alot. He helped make further sense of things as we continued our conversation for over an hour. Yes, Kwon was the science guy and Goodell was the one whom easily broke it down for you like you just ran into him at a bar over drinks. Cool and calm. At least now I could put a face to the name.

Later that evening Auntie Maria and Uncle Kevin visited us. They brought the gold...goldfish that is. G ate them up like crazy. First real meal of the day. We had some laughs and yummy Portillos. It was nice to have company again as long G was feeling ok. He still had not puked or anything else I was expecting. Again the docs told us how well he was doing before signing off for the nite. I guess it's all relative.

My further good news of the day-when I reached Roselle and had a late nite cup of tea with my mom she shared that she would be staying a whole additional week. I cannot express here what that did to me. I balled. It was the question creeping in my head all week-when were they going to go back to Arkansas? Do I dare ask them to stay awhile? I didnt know how. I felt like a lil girl again asking to go out on a school nite. I didnt want to impose them financial or any other way. I knew our few visits throughout the yr were tough to begin with. I ran to her and hugged her and made sure to hug my dad the next morning. I don't care that I am 31 years old-I still need my mommy and daddy.

Wednesday, Aug 4

G's day began with his usual 4 am blood draw. By 9 am those results later revealed his WBC was 58. Amazing! We went from 290 to 58 in one day. Those chemo drugs do their thing don't they?! Now just bc his WBC went down doesnt mean all was good. They explained to us when we see changes in one blood number the others teeter totter as well. His platelets and hgb(red blood cells/hemoglogin) were still low.

Here is more of that math junk describing what normal levels are:

WBC level is : 5.0-19.5

hgb level is: 10.5-13.5

platelets: 140 -450

On that dreadful Saturday his numbers were:

327

8.7

45

(respectively as written above)

And as the days went by his WBC dropped and hgb n platelets still remained on the low end. A wicked game in my opinion.

But that good news of WBC 58 meant we could leave PICU and return to the PED unit. I was excited to return to nurses I missed and will forever be in my heart those first 24 hours of this rollercoaster. It was great news to leave the "cautious watchful eyes" of PICU. We werent so fragile and could make the move.

It was another day of hallway walks, ordered meals, trying to get him to eat more than a fry or a handful of goldfish, meds, vital checks n constant in and out of people. G and I took a long nap. Charito headed home for the afternoon.

We did have a great visit from Auntie Najette. Although she was persistent I was not so much in the mood for visitors I knew that if I did not want to talk about the bad stuff she would not expect me to. She wanted to see G before her whole fam left for vacation. I agreed. I was sooooo glad I did. I didnt realize how much I needed the happy distraction. She entered the room w a bag of goodies and the biggest Elmo balloon ever. It was taller than G! He had playdoh and aquadoodles and the most fun biffing her in the face w the smiley balloon. It was the laughter we needed!

At some point in the day I remember a social worker stopping by as well as a dietician. She stated that she was pleased w the amount of food n drink he was intaking. I had to chuckle to myself bc it was funny to me they thought nibbles here and there were ok. I knew the fluids through his IV were sustainable but what about real food. She restated his weight was hanging in there considereing what he was going thru. But she was going to add pediasure to his computerized menu so it arrive automatically w each meal I ordered him from food services. If from this point on in treatment he had any issues w weight gain or nutritional needs they would address them as needed thru meds or IV. We would worry about that when the time came. Great! More to worry about down the road. I was seeing that my list was endless. I wished I knew for how long. How long would this be part of our lives. This big L word that had consumed us all.

Tuesday, Aug 3

After the drain of the day before this was the first time I imagined death. My lil boy just lying there in his hospital bed. My mind wouldnt go past that image (into darker scenes, I would not allow it). I just pictured us never leaving the hospital. Afterall, no one could tell us when we were leaving.

That morning it was decided it was easier for my mom to care for the boys from Roselle. Its not that I didnt want my in-laws to care for them. It was just that this week was supposed to be all about my family. My parents seeing their 4th grandson for the first time and spending as much time w him as possible. Spoiling T n G like crazy. T still deserved that. And we wanted that opportunity for my parents, too. Besides, T considers my parents home in Roselle THE party place with that huge yard, pool and cheetohs n ice cream galore. What a better place to be. I packed up what T n C would need for the remainder of the week with them. We were assuming we would be home from the hospital maybe next Monday or Wednesday the latest for maybe a day or two before more treatment. I packed up enuf stuff to last thru Saturday when my parents were leaving. If G was having low key nites then I would just go sleep in Roselle. We had great friends n neighbors caring for Bryley (our baby girl dog) at home. It was just unfortunate that they barely saw G and didnt get to spoil him they way they had been picturing for months. After I had all things arranged I made it to the hospital by noon.

G slept til 9 ish that day. Had a smile on his face when I arrived. He was happy to see me!

Before I had arrived Dr. Kwon stopped by n talked to Charito. He confirmed his suspicions that it was ALL and of the T cell type. This meant no change in the game plan he had discussed w us the day before. We would start chemo today. It would be administered thru his IV. He would receive 2 new drugs. Vincristine (which would could cause constipation, jaw or throat pain, tingling sensations, and low blood sodium levels) and Daunorubicin (causing red or orange urine or stools, low blood counts, nausea, vomiting, mouth sores, muscle aches). They would also continue to give him his usual doses of tylenol, benadryl and Zofran (anti-nausea med) to help balance these out a bit. His blood numbers were still high. A WBC of 290. Remember it was 350 on Sunday so the little bit of maintenance we were taking part in thru transfusions n other drugs were helping somewhat. I was interested to see what his WBC would be once chemo was introduced into his bloodstream.

The good news of the day! His spinal fluid was clear. No signs of leukemic blasts in his spine or central nervous system. We got to this early. He also explained that we would remain in the PICU until his WBC was below 100 (remember -the docs say 100 but they mean 100, 000. I will be referring to the shorter term throughout blog).

He began his first chemo drugs by 10 am. By 11 am he had another blood draw to check kidney functions. Later the hospital chaplin stopped by and left some handouts for us.

Really all we did was chill and wait the rest of the day. How soon we would see changes in him? The kind of changes you imagine w chemo. When would he throw up? They were already concerned he hadnt pooped since Sunday nite. People continued in and out w meds and blood checks n vitals. We watched movies and nibbled here and there. It was here in the hospital he became a movie addict! What else was there to do? Yeah we took a few trips to the rooftop garden and walked the halls to the playrooms but he was a tired lil boy w low energy. Only so much you could get him to do. But he sure didnt turn down candy n pop n cheetohs! His appetite wasnt great but it wasnt the highest of priorities. Fluids and alertness were. We continued to receive the random comment of how well he was doing so far. I thus continued to trust in that. He was able to eat and drink whatever he wanted. Really he could have asked for ANYTHING and I would have made it happen. You get that way fast when you live with something like this.

And by 9:30 pm he pooped. We were so excited over such a gross thing! I stayed overnite at the hospital. I guess I just thought I would see reactions from chemo overnite and wanted to be there for him. His evening was uneventful. He slept good. Other than the occasional nightmares/terrors that seemed to develop during our stay. He would wake several times and whine and cry for us and then fall asleep again in minutes. It was like sleepwalking or talking but in a hospital bed.

I really enjoyed this evening tho-as wierd as that sounds. It was the first evening Charito and I had the chance to talk with barely no interruptions. We talked til the wee hours. Catching each other up and coaching each other on the medical terms that were now a part of our everyday life-forever. It was like prepping for mid-terms or something. He had pieces of a doctor story I missed and vice versa. It was he and I working together as a team to piece it all together. We filled in the gaps of all info up to this point and made sure we were on the same page. I had this overwhelming feeling of peace. Peace in my hubby. My teammate in all of this. We were working together and I wanted it no other way. I felt like we were invincible in that evening silence. It was clear that in a matter of 2-3 days we went from emotional chaos to nitty gritty business. We were forced to push aside the sadness, utter fear and shock and face the reality. Sooner than anyone else in our lives had. We had no choice. This was our boy's life here. We got into business mode/war mode and fast and stayed there. It was now a life of living by the numbers. Grayson's blood numbers. Things out of our control. I looked over as our boy slept in this huge bed and just knew we would go home soon. I didnt care how long we could be home...just as long as we could be home as a fam of 5 again.

Monday, Aug 2

When I arrived to hospital I saw that his blood transfusion was under way. I saw the plasma hanging from his IV pole entering arm IV. Okay, now I knew what a transfusion LOOKED like. Just whatever bag of blood "characteristic" needed is hung from there and pumped into his IV. Plasma would take about 40 min. or more. We waited. Soon my fav guy walked in: Belmonte! He was checking in on his lil guy. He joked he felt out of the loop. When he went on his computer that am he had to SEARCH Grayson down bc he is no longer on his quick access accounts. He really wanted to see how he was doing. He even asked about T n C. C was due for another weight check in a few days. He told me he would do whatever he needed to make that visit easier for me. I explained that Tn C were w my parents n I would just bring C w me into the hospital on Thursday. He even offered to have one of his nurses weigh him in our room so I wouldnt have to take a trip downstairs to his department. Isnt he great?! We agreed I would call his nurse that morning and tell her what my plan of action was. God, I love that man! I was crying when he walked in (feeling so guilty that I was pretty sure I had to stop breastfeeding. It was too difficult. I just couldnt pump in private in the hospital w so many interruptions and I was in so much pain. My milk production was so poor. It didnt even look healthy. How could I feed that to my 7 day old?! The guilt subsided when I told Belmonte and he reminded me I needed to do what was necessary. At least Caden had received the colostrum and that was most important. I could not stress myself out more than what was already being forced upon me) and then I cried more when he left...happy tears that time bc we had Belmonte in our lives. A man that had to deliver such terrible news to us but still kept us in his thoughts and remained committed to my other 2 boys. How lucky we are.

But before I knew it the rush of the day began to take place. He needed a platelet transfusion by 9 am. They also shared that he was at risk for clotting issues (slow to clot so could continue to bleed or bruise easier-hence the needed platelets). At 11:30 he received ultrasounds of his heart, lungs, neck, nodes, and abdomen (he screamed the whole time). And his first dose of steroids (Prednisone). Vital check again at noon. The bone marrow was supposed to start at 10 am. Everything else held this up. It finally began at 1:30. Dr. Kwon let us hang out a bit before the procedure. We moved to PICU and got underway. They explained they would provide him meds to sedate him. They explained that they would maneuver his body into a C-shape to access his spine and hip bone to obtain bone marrow. He was to have spinal fluid n bone marrow removed to see several things:

• leukemic cells live in bone marrow. we needed that to determine the type of leukemia. That would also tell them how many blasts (leukemic cells are occupying that system).




• spinal tap would determine if leukemic cells have entered his spine thus traveling to his brain and the rest of his central nervous system. Obviously not good.




• and while they were doing the spinal tap they were to administer his first chemo type drug into his spine. Methotrexate.

I knew this was all necessary but to see my baby boy in that quiet state was scary. They let us stay til "he fell asleep". I walked out then, I really wanted to see the whole procedure. I wanted to know how it worked beyond verbal descriptions. But as soon as they shooed us away (mostly Dr. Kwon-again he is a serious, meticulous man w no interruptions. I understood that) and we walked that hall to wait at some couches I cried again. I hated leaving him. A procedure a baby should not go thru. That "sleep" made me think he may not wake. That shuttered inside me.

Less than 20 min later Dr Kwon said he did fine. We could see him. It would take him a while to wake. Beware of emotional state, crabbies and tears. They did give him a drug to make him "not remember" he had even been thru it. They werent kidding. He woke up crying and wanted us to lie near him. He took awhile to calm down. Once he did Charito headed home for nap n shower. He never slept well in hospitals. At least in new tower we had a couch. To think w T n G's births he slept on chairs. He said he'd be back soon.

G just slept til the next interruption. At 3 pm they came in to administer the next dose of sedatives and administer a ECO. I was lying in bed w him when I was then met by the anesthesiologist that would be preparing his port procedure. Oh yeah it was time for that. I should mention that earlier that day the pediatric surgery team introduced themselves to us and explained protocol. Then they stepped out to the hallway to tell Dr. Kwon they didnt think the port could take place that day. Maybe not til Wednesday. I overheard all this bc they left the door open. Then I heard this quiet, serious, doctor raise his voice (which was not all that loud to any of us but considering his demeanor this had to be his LOUD) and tell them-"No, today. It is today. Get someone in to do it if you have to. That boy is high risk and for clotting. I am not waiting". As odd as it was to overhear, I was glad I did. I needed to feel that feeling. The feeling that we were not the only ones fighting.

It was almost 4 pm. I was still in bed w G when the whole ped surgery team (expcept the surgeon performing the duty) arrived. They told me I could come with. I could stay in the bed as they rolled us down. Okay, sure. So, we lied there as we were courted down to the OR ( believe me at the time I could not grasp the urgency or significance of this whole ride to OR. I realize now I didnt fully understand the implantation of the port. I thought it was as simple as the recent bone marrow n tap). We were on some lower level. They asked me to put scrubs on so I can be there til he "fell asleep". The ped surgeon (a tiny older lady) approached me to sign consent. She explained to me that even tho a port was being requested if she could not access that major artery due to his small size she would have to install a main line (that would mean an IV tube hanging outside his collar bone at all times). I nodded. What was I to say. It was Dr. Kwon who gave the directions and here she was telling me that may not happen. How was I gonna be cautious enuf to care for his dangers when he had this thing hanging out of his body. He plays ruff all the time, how was I gonna do this?

Then she continued with the warnings. During this surgery (there was that word-I didnt realize it was an actual surgery. Did I not accept that word when it was said to us earlier? This was his FIRST surgery! What! How come no one told me! My mind started jumbling w how much had been thrown at me in the past 48 hrs. I was missing a piece. Clearly my fault. My fog) there is always risk of heart failure, siezures and collapsed lungs. What?!! On the table? I couldnt swallow. I looked at the anesthesiolgist (she had been so kind when we first met and in our short ride down to the PED OR we realized all of our kids were days apart in bdays. She was my newest "few-minutes friend". She could tell I was scared. She nodded n winked at me. I took a breath. I mean, its not like I wasnt gonna sign the consent knowing that info but it still took me off guard. Of course, I was gonna sign it. It was this contraption that was gonna save my guys life, right? They told me I could stay til he "fell asleep" and then had to wait in the surgery waiting room on the main level of hospital. As I signed I remember thinking-Bring my baby back to me, please.

We walked into what was a mini operating room. So tiny. Really meant for tinies like my guy. I saw the tools layed out. The told me to hold his hand. He just looked so tired from the bit of sedative they gave upstairs. He had no idea where he was or what was about to be done to him. I realize now neither did I. I did not fully understand the step by step procedures. I wish I had looked at the link above to help me see it all. It was not until I mentioned to Ahram (the Child-life specialist ) days later that I felt I didnt get the whole pic of the port that she brought one to me and showed me what it looks like under his skin. Then I got it. Then they injected more sedative into his IV. He closed his eyes. I kissed his forehead and was escorted out.

We scrambled thru hallways which led me to the waiting room I would told to remain in. It would take an hour or so. I sat down and noticed I didnt have my phone. I whole 2 hours had gone by and what if Charito was trying to call me upstairs. He had no clue the port was being worked on right now. I got nervous. A lady pointed me to the house phone and I called him to inform him. I woke him from his nap. He said he'd be there in a bit. I hung up the phone and just prayed G was alright. It truly was the longest hour + in my life. The ped surgeon walked in and sat down next to me. She told me he did great and he was headed up to PICU. I could go back up n see him. Another sigh of relief.

When I got back to our room he was just lying there. Our nurse stayed nearby. I crawled into bed with him. She warned me again of how upset he may be when he wakes. He didnt come out of it til 6:30pm. He was a mess. Asking for me but not realizing I was right near him. Constantly changing his mind about a drink, movie, or other request. He was so confused and tired. He would whine then scream then fall asleep. A repetitive pattern for about an hour.

The kidney specialist stopped by again. He stated he had no concerns yet. They were pumping his IV w a diuretic and fluids to cut the uric acid build up in his kidneys to make sure they would not be compromised. No joke. We were changing his diaper every 40 minutes, the kind that is seconds from exploding that yucky diaper film everywhere. But it needed to happen.

By now it was dinner time and time for me to head home. We decided that evenings when nothing was going to go on Charito and his mom (Charito did not feel comfy staying there alone. He hates hospitals) would take nite duty and I would be w C n T and some sort of time w my fam before they headed home that weekend. I still wanted to try my best to be w them seeing as the last time I saw them was January. I kissed my baby boy good nite, my hubby and drove out. It was a draining day. But I could not wait to see my other 2 boys. I needed them as much as they needed me.

His port after surgery. See the tube that is hanging below the bandaids...that is an extending tube nurses apply for access to his fluids. It rested below his belly button so now anytime anything was getting pumped into him it was next to his body instead of someone digging at some IV in his arm. Now all fluids, future chemo and whatever else is pumped directly to main artery near his heart and spreads quicker into his bloodstream via "main highways" of circulatory system.

Sunday, Aug 1

G is still sleeping on the couch so I have some time to write.

I forgot to mention that by later that Saturday evening G began to develop petechiae all over his body. Petechiae result from tiny areas of superficial bleeding into the skin. They appear as round, pinpoint-sized dots that are not raised. The color varies from red to blue or purple as they age and gradually disappear. I realize now that had we not received blood test results to go on from that Saturday WITHOUT a doubt I would have had him in that Monday morning w what I would assume was only a rash. But again, the littlest things I dont let slide. I think its the spec ed tchr/psych/OT in me. And that I am an anxious person to begin with.

But look at this perspective-waiting til Monday would have been an even greater risk bc by Sunday (the very next day!) his wbc jumped to 157, 000 OVERNITE!. This prompted doctors to not waste anytime and we were scheduled for a whole bunch of activity on Monday.

I woke Sunday morning to smiley nurses willing to do or get me anything. So sweet. G was his usual self. I didnt know how to react anymore to the numerous comments of those in and out saying, "This is Grayson. He doesnt even look sick! So what brought you here?" It was becoming evident that this was very much the early stage of all of this when G was his total self-clown, silly, winning everyone over (except during exams). He ate well again that day. And had many visitors. By now all our immediate fam knew and made arrangements to visit. Before I knew everyone arrived at same time. Annoying in such small room. On top of the constant med staff in and out, too.

G continued to act his usual self all day. Plenty of people warned us of how difficult Monday would be on him, so we agreed to have Triston n Ayden visit later that evening. A chance for both to see the "old G" before things changed him. What things I wasnt sure. I was still picturing movies n books n schoolbooks I had been exposed to over the yrs. I pictured the worst. Needed to prepare myself.

Good news that day was that the old PED unit was not full of patients so we were being transferred to the new tower. The GRAND tower. We loved being in it during Caden's birth recovery and I was looking forward to bigger room n brighter views.

His blood numbers ( this will be my generic term that refers to his wbc (white blood cells-fight infections), platelets (stop/prevent bruising n bleeding) n hemoglobin (red blood cells-carry oxygen) continued to climb but you would never know it by looking at him. Our g became the cutest pro at walking around with the IV pole or flipping that iv tube around his body to get where he needed to go. It was amazing how acclimated he became. By continue to climb I mean do what they are not supposed to do. WBC are not supposed to be high. Hemoglobin n platelets should not be low. All of these were in the wrong.

We met Dr Kwon that day. I tall, older Asian gentlemen. Nurses and fellow staff (even Belmonte gave me the heads up) of his demeanor. He is serious and to the point. While Dr Goodell is the exact opposite. Seemed like the perfect ying-yang to me. We realized by end of week one it was so true. Kwon shared w us that after further review he was pretty positive we were dealing w/ ALL. Okay-first sigh of relief. Odd that we were praying for that the evening before. His bone marrow on Monday would confirm but all signs pointed in that direction. Primarily the acute aspect of it all and his overall appearance to date. Then we needed to determine if it was ALL w T or B cell intrusion. http://wiki.answers.com/Q/Difference_between_B_cells_and_T_cells_which_are_both_lymphocytes

This would determine treatment path. He also noticed that he seemed to be anemic (another symptom taking place in past week according to numbers). But that was nothing to worry about in the larger picture. We spent most of that afternoon getting explanations and signing consent forms like mad. That was scary. But at least we knew we were doing a better part of good by agreeing to be involved in the research studies. If we can help the future thru G's info great, but the other plus was it meant another "set of eyes" on his labs n slides to approach treatment with. We were all in for a doozy of a day that Monday. He was scheduled for the bone marrow, spinal tap and placement of his port-a-cath "port" (http://www.sir.net.au/portacath_pi.html) .

Other people that entered our lives that day-Child Life Specialists (like social workers for parents, patient n siblings) Kevynne (female) and Arham (female). These ladies have been so helpful even tho first meeting them was overwhelming to me. I just kept thinking-I am not gonna need you, I will be fine. But before I knew it I needed them. To help me with T. Kevynne helped me figure out how to approach all this w T. I mean I had a good week before he needed a big talk bc afterall it was vaca w Gramma n Grampa. He was soooo occupied it was comforting. But did I miss him. At least Caden was w me thru Sunday. I explained the intellect level of my brainy T. She didnt hesitate to say we needed to use the real terms with him. Leukemia, chemo, port, sick blood, blood medicine, etc. I was calm until a question hit me that had not crossed my mind yet-"What do I say if T asks me if G is gonna die?" I lost it. Right there in front of a perfect stranger. T hasnt had much experience with death. His fish died a yr or so ago (okay, okay I intentionally killed it by not feeding it overtime but I was sick of that tank! and oh did karma bite me in the ass when we went to flush him and T burst into tears. Oh the pain I felt for him and the pissed off feeling on my own part. what mom does that?! I seriously didnt think he would care. I was the one caring for that damn fish for weeks on end anyway. Yup, karma got me.) He saw Grampa Murphy's casket n understood he went to heaven. Would he even ask? I needed to be prepared. She said, " You just tell him that everyone is working hard to fix him". That helped. She gave me tons of books n pictures to use to explain to T. I told her he was my science guy (the kid who loves non-fiction/informational textbooks and studied n memorized the fallopian tubes n uterus diagram every time we went for baby belly aptmts the past 9 mos. yup, my 4 yr old is THAT kid. hilarious. As my girlfriend said recently-maybe this road of ours will turn T into a dr himself). So I had the tools to talk to T. Whenever he had a question or we needed to sit down after all his funtimes that week n talk.

We also met the Kidney specialist that day. All that G was going to encounter that week would begin to compromise his urine output so that needed to be monitored closely to ensure his kidneys would not shut down. A chipper man, easy to talk to.

I must say that the other thing that made this all so complex and hard to grasp was again how people constantly commented how well he was doing so far. They continued to say that our whole week in the hospital. We didnt know how to take it. What did we have to compare it to? What is "well"? It was the nurses who put that into perspective for us. They said we are not lying when we tell you he is doing well. Very well. For them they have hundreds of kids to compare this to. The kid down the hall. The fact he was eating, giggling, fighting off those who want to poke him n prod him was feistiness in their eyes. Not lethargy. Most kids who come in w ALL are already looking very ill, he was not. I continue to tell myself that spunk in my guy is what will get us thru this. A fighter from the beginning (the one that beat me up the most in womb).

That evening I got to see my big guy, T. I was so looking forward to the inital reaction G n T would have w each other. It had only been a day since they saw each other but for months now T has been someone G looked up to. He adores him! Thinks he is the best around. Their friendship has been amazing to watch unfold. Unfortunately, I was occupied w a dr when they met in the hall (G went a-walking the halls w his iv pole looking for action). My mom and Amy said it was priceless. Full on grins and ran to each other. Ayden (my nephew) was just as excited. Our boys are like his bros. My whole fam was there and we sat on the floor played trains, ate Mcds and just laughed. For a moment it was easy to forget where we were and why. The boys laughs just made it that easy.

After a while the older boys got ancy and headed back to our place w my mom n Amy n Neal. I stayed a bit longer to assure nothing more was to go on overnite til the am. I intended to go home that evening and spend time w T and C (and figure out this breastfeeding biz). I talked tothe nurses and was told all would begin at 10 am Monday. The only thing that would continue overnite was the regular 6 pm bloood check n 6 am blood check. Caden n I headed home. I had my tears in the car in front of the house. How is it I was home without all my boys? It hurt.

But T's hug made it better as soon as I walked in. He missed me so. It was obvious and he def got to sleep w me that nite. I took a shower. And crawled into bed w my big guy.

I woke the next morning forgetting it all for a second. Hoping it was all a dream. Not so much. My first text from Charito explained that by 8 am they would be doing a blood transfusion. His hemoglobin was low. I freaked out. I pictured what I thought was a transfusion. I wanted to be there. I needed to see it. I rushed to get ready n out the door. Left C n T behind for my long day (our D-day). Right before I walked into G's room I realized I was shaking. I didnt know or truly understand what today would bring. Explanations and descriptions from the pros did not matter. It was the emotional toll the day would have...little did I know.

Saturday, July 31st 2010

Warning-this first post is a long one...

I never thought I'd be dedicating a blog to one child under these circumstances but here goes...

needless to say - I will never forget this date. Just like us parents remember our childrens' bdays, first smile, word, roll, steps and so forth. And so we remember this...

We woke to beautiful weather. Our first outing as a family of 5 was today. Caden had his first newborn checkup. We were gonna catch some lunch and then chill rest of the day (as you know a few days after the delivery of a child us moms are still uncomfy down there so i had no plans for a big day!). We headed out round 10 ish and went to Dr. Belmonte's office at Lutheran General. He declared Caden good and healthy and grinned when we said he was already consuming 2 oz. He asked if we wanted to take care of Grayson's CBC (complete blood count) that day as well. I said sure seeing it was a Saturday and I knew the blood lab would not be busy. Besides I had Charito w me to hold the fort w the other two considering a month ago at his lead test G was a mess. This is not a fun blood test and I still remember T's when he asked me to "help it stop, mommy!". So I knew my sensitive soul Grayson would not do well w any blood drawn after that lead test. We headed upstairs and were in and out of the lab. And yes G screamed his head off. Poor guy.

We assured him fries were waiting for him. We made plans to go across the street to Portillos. Fries and hot dogs were waiting for all of us. And I could finally enjoy a chopped salad w blue cheese since I couldn't consume blue cheese during prego. It felt so nice to be out and about. I had all my boys w me doing what we love to do-Saturday adventures w even the most mundane errands.

After lunch we headed home. We took Northwest Highway thru downtown Edison Park. Halfway thru EP my phone rang w an unfamiliar Park Ridge phone number. I dismissed the call and let it go to voicemail. It was a nurse from Dr. Belmonte's office. She asked us to call back. As I attempted to call back the phone rang again and it was Dr Belmonte himself.

He said (from what I can mostly recall from all the blur of this) :

"I am calling because I received some of Grayson's blood labs back already. I was convinced there was a mistake so I made them run the labs again and then a third time. I dont like what I see. I need you to get back here as soon as you can, we need to admit him and figure this all out. I didnt say anything but uh huhs and okays. I trusted him and listened to his advice and wasted no time. I turned to Charito who was driving and told him to turn around bc Belmonte needs to see us right away. Something is not right w the bloodwork. Just when I was gonna ask what are you thinking he said it for me. His white blood cells are extremely high and are usually indicative of a chronic cancer. A cancer of the blood. You know I would never tell anyone that over the phone but we know each other well enough and have been honest w each other from the beginning. I remember saying- no I completely understand, I appreciate it. I told him we would be there in 15 minutes. He told me he would wait if I needed to make arrangements for Tristion n Caden but I sensed the urgency in his voice and wanted to get to him. To the Dr who has always made sense of things for me, and I needed to see him, too. I needed to know my baby would be ok. He said he would meet us downstairs." That made me feel good right away.

That pic above of G was taken 20 minutes before that phone call as he waited for his fries w daddy at Portillos. I will never forget what he was wearing that day. I had to put it away in a drawer. I can't look at it.

When I hung up w Belmonte Charito asked what was going on. I told him Belmonte ran the labs more than once bc he couldnt believe what was coming up. The results just didnt match up w a healthy kid. I repeated what he said about high white blood cell counts but did I know what that even meant? Hell no. I dont recall mentioning cancer to him tho. I think I purposefully left it out since he was the one driving and overall I am usually the calmer of us two. I didnt want to scare him. I didnt know what we were walking into just yet. T right away asked why were turning around. I just told him Belmonte forgot to weigh G after Caden's turn and we wanted us back there.

Belmonte wasnt kidding. There he was at the door of admissions waiting for us. As the lady across the desk worked on computer stuff to get us admitted he sat by me while Charito walked the halls w T n G looking for balloons. He put his hand on my knee and asked me what I gathered from his conversation over the phone. I told him I heard his words but wasnt letting myself go there yet. He again apologized for the phone call and I reminded him I was glad he was so on top of things and got us here. It was obviously that important. Once the computer lady finished her job he led us all upstairs. During that walk I was just in follow mode. Nothing was sinking in. Til we walked into that pediatrics room, a room in the PEDS unit. I saw that crib like hospital bed w a gown waiting atop it. That is when I knew something serious was about to be said to us and we were not going anywhere that evening.

We got the boys settled w our phones n their techie games and we sat across from him. He asked that G sit in my lap so he could examine him (seeing as our earlier apmt was for Caden not G). He looked over his bruises again, spine and penis. I say bruises again bc while I was busy pushing out another Asian baby and remained in hospital Sunday nite thru Wednesday nite G had accumulated several bruises thanks to the ruff n tuff play w T n cuz Ayden. Belmonte looked them over that am and said they were def bruises and just happened to be lying right on the shin bones and a soft spot of the forehead ( yup the forehead bruise evident in the pic above was thx to T biffing G w the Candyland board game). We talked about how he has been actively keeping up w T's tumbling lifestyle of beds n couches n such and agreed they were typical going on 2 yr old behavior wounds. Then he continued on.

He began to explain that G's white blood cells were dangerously high. These fight infection. Grayson's numbers were indicative of a form of a blood cancer. Leukemia. I felt my body go quiet. I couldnt take my eyes off of Belmonte. Because of our relationship over the years (an honest one in which this once a stranger understood how my mind worked. How I process info and how I care/do for my kids. The methods to my madness. He got me and I have held this man on a pedestal ever since). I sensed it wasn't easy for him to tell me this even tho he does this type of thing daily. Hell, I do it often enuf myself to my student's parents. Delivering news no one wants to hear. I glanced over at Charito. His eyes watered up. Mine didnt. But my heart sank for my big baby, my hubby. My partner in life. Truly my first thought was "I have a 5 day old and you are telling me this. What?!" But I was still in info mode. He then explained the surprise factor of all of this. Repeated that he had those original blood labs ran 3 times. They just seemed so off compared to his lead test n other lab done in June. Which means all of this occurred in past 4 weeks and fast. Hence the increase in dark bruising that week (4 days ago while I was in the hospital). A symptom of Leukemia.

He then began to explain the shock factor of the numbers. He stated that of course his labs indicated NOTHING out of ordinary, not even the slightest red flag in June. I believe him. He and I dont mess around w the slightest of clues when it comes to my kids. I trust his gut and he mine for over 4 yrs now. Once the labs were ran 3 times he contacted his fellow coworker and had him look at the slides as well. That man confirmed the Leukemia. That man is now the man who holds the Leukemia decisions in his hands and guides us thru this, Dr Kwon (and Goodell). A team of oncologists (cancer docs) n hemotologists (blood specialists). Belmonte told me he would trust the lives of his own 2 daughters w these two men. I believe him. And to think Belmonte had all that done in a matter of couple of hours since we left his office.

Thru all these explanations we just nodded and absorbed. My first question out of my mouth was, as I pointed to him, "Is Caden ok?" I think my mind just remained in the recent. He was the most recent thing in our lives and was he affected? He assured us that it was not genetic and there was nothing we did or could have done to prevent this. "It just chose Grayson. I'm sorry", he said.

Then he went onto the math of it all. Here is where the medical crap comes in people. I will simplify. The shock factor came with the numbers. Belmonte explained that a healthy child's white blood cell count (wbc) is 5, 000-19,500. Docs say them wout the thousands. So he repeated it as 5-19.5. Grayson's that morning were 327. That's 327, 000! Get the wow factor now?! Because of these numbers he was considered high risk right off the bat.

Next we had more to worry about. The Leukemias we were focusing on for G were ALL (acute lymphoblastic leukemia) and AML (acute myeloid leukemia). A bone marrow (Bone marrow is the flexible tissue found in the hollow interior of bones) biopsy and/or aspiration would determine which G has ( click here for description of these procedures)http://www.webmd.com/a-to-z-guides/bone-marrow-aspiration-and-biopsy . He told us as much as we dont want any of this at all we want it to be ALL. The treatable/curable rate for ALL as 80%. I thought-ok , not bad, what else? AML had a rate of 40%. That sentence was my first set of tears. I didnt explode them, I just let them out slow. And not for long bc the boys were still there. I would NOT let them see me upset. Okay, I told myself back to info mode. What is the next step? is what I said. Belmonte said it is a matter of when the bone marrow is scheduled. But preliminary they were pretty sure it was ALL considering this was so rapid and in such a short amount of time (that is what acute means). And unfortunately this is when "I step out and Drs. Goodell and Kwon take over. They become your doctors now. But if you need anything, I mean anything, you call me! I am so sorry" and then he hugged me and passed on an apologetic look to Charito. He told us the crew behind him needed to get started on vitals n prep n fluids. I confirmed we were here to stay and my mind went off to what needed to happen the rest of the evening.

My mind shifted to the fact we were gonna be here overnite. But how long? When will we go home? No one had those answers. This day happened to be the same day my parents were coming into town from Arkansas. They were meeting up at a family party in Algonquin that us Carpers were not attending due to recovery time from Caden n our first weekend home as fam of 5. I knew my bros n sis in law were attending it. I had to get Triston outta here. He was ancey at this point n really not aware of what was going on. We told him G had to stay in the hospital a bit bc he was sick and Belmonte wanted to watch him. I called up my bro Neal and just told him something came up and they want to run more tests on G. I just couldnt say it to anyone at that point. And I had no intention of ruining someone else's party w the news. And my parents were headed from the road to that party so news like this is not what I wanted them to arrive to. He agreed to come get T at our house. Charito would meet him there. Shortly after Charito left w T. I stayed behind w G n Caden (C).

It was about 3/4 pm by now. Now I was just going thru the motions. Residents n nurses coming in to ask questions about last few weeks of his health. It got to the point I wanted to record my responses to same questions over n over so I didnt have to repeat myself. No! The only reason we are here is bc of blood test results! A phone call from Belmonte brought us here! That list of 20 or more symptoms you just rattled off did not apply to us! It still didnt seem real to me. I think that day I was just hoping we were still ruling things out w tests but knew if it wasnt this it was def something. We got g into his gown and hooked up his IV on his arm. The first of many procedures.

Charito came back a few hrs later. He told me when Amy (sis in law) arrived to pick T up (who was told he was going to a party w cuz Ayden) she approached him immediately and asked if it was cancer. The only thing I can say that made her think that was the passing of her own mother to the big C. We hadnt said a word to anyone yet. He told her they think its Leukemia. She said she would keep quiet. As they headed off to a fam party, Charito headed back to be w me.

The nurses were great. Realizing I was still walking funky, tending to a newborn, lactating like crazy as evident on my shirt they were so helpful. They let me be present for the IV access. Of course, they had to tho-who else would hold him down. It took all 3 of us. Again, my sensitive soul who never liked being poked about. They brought me breast pads, formula, diapers and anything else I needed. C was so good. He just slept thru it all in his carrier. They gave me permission for him to stay the nite. They understood this was way too difficult for me to ditch my newborn while dealing w tragic news n trying to breastfeed at same time. They were wonderful. One nurse in particular was my angel. She gets her own post coming up soon. It was her that gave me the quiet time I needed while Charito was gone to let this all soak in. Then she was there for my questions. Vague ones at first and the kind that I asked to clarify what I heard in past few hours. I wanted to make sure I heard it all and was processing it all correctly. Even tho we only knew it was Leukemia and nothing more to go on.

When Charito returned I could tell he had been crying. I, too, had my moment while he was gone. But G, well he was fine. He had an ordered pizza n fries n Thomas movies and books all around him. He thought we were just somewhere else to hang out for dinner, I guess.

The rest of the nite was just full of nurses in n out checking vitals and taking more blood. Nothing more was to go on that evening. I had asked Amy to let me know when the whole fam arrived home and I would call them then. I was not going to tell my parents while they were at the party. A party for her to enjoy her sisters, nieces, nephews n friends. People they hadnt seen since January when their father passed away. Amy did a great job of sending me pics of T having a ball. Besides, this whole week was supposed to be a spoiled vacation for him anyway. Regardless of shitty news. He wasnt even told he would see Gramma n Grampa til he walked into the yard party. What a surprise for him! I was comforted in knowing he would spend the nite w them.

Around 10 pm Charito left the hospital to tell his own fam who didnt even know we had been in the hospital all day. We had our tears and whys and luv u's and parted to tell our fams words we never thought we would. Amy texted me they were all home and that she would keep the boys downstairs while I talked to my fam. I asked them to go upstairs and put the phone on speaker. I blurted it all out. What I knew. It wasnt much but enuf for a blow. I became loud w tears and such when I explained that no one, NO ONE, will tell us if he is gonna die on us. They all just spit back the statistics n the one liner that every child is different and responds differently. I know that is all they can go on for now , too but the fear was beginning to creep up in me. My parents played the Harper card...exactly what I needed at the time. You will get thru this, G will get thru this. Why do you think hes such a persistent, stubborn character to begin w? He has never given up and will not now. Take it one day at a time, Wow (my nickname). I just cried. But then snapped out of it when Caden needed to eat. Boob time and boy was I happy to feed him. Ahhh, relief of pain. I lied next to my G and fell asleep next to his little body ( the nurse insisted on getting rid of that hospital crib n got us a bed so I could lie w him. So even tho we had it, G wanted to sleep on the couch so he could see the tv. I liked it better bc we were lower to the ground and I could see/get to C better). The only thoughts thru my mind as I dozed off...he's not even 2 yet. Caden is only 5 days old. What is going on?!