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.