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?!