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.

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?!