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.