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!