Remainder of Week 3: Aug 17-21

Tuesday we began to see his appetite decrease as well as his activity level. He would have what I have been calling "spurts". 20 min of play=40 min nap=30 min of snacking=another catnap=more play=couple hour nap (usually 11 am -2 or 3 pm)=more snacking=more play and so on.



I was able to get him outside for some sunshine (and quench T's need for speed). They played well. But there is just no warning of when G is done. It is instant shut down. One minute he is laughing and hammering at his tool bench and the next he is asking me to hold him so he can fall asleep on my shoulder ( and he did while I watched T play in the backyard, G and I hung out under the gazebo while he slept). It was hard to see the beginning stages of this low key kid. He has always been so active and trying is BESTEST to keep up w T and did a pretty good job at it, too. I knew this was only a taste of what was to come.

As the week went on his appetite decreased even more. I was pushing fluids as best I could. All he wanted to do was watch movies n lie on the couch. Thursday and Friday were worrisome. I was starting to think he was dehydrated. I called Nurse Jenny to ask if the behaviors of Thursday n Friday were typical. Behaviors:

• 2-3 bites of hot dog or crackers or sausage or cheeseALL DAY!
• sips equaling a total of one glass of fluid ALL DAY!
• 2 wet diapers entire day
• some spit up when he burped
• avoided all milk and pediasure products
• Going from some form of activity to level to nearly none-he barely lifted his head off the pillow on the couch. He did NOT want to leave the couch. So quiet and drained. Total opposite of the spectrum in terms of motivation or activity. You could tell EVERYTHING ached. I mean, I know he is often achey since the hospital but he SCREAMED when touched. So crabby and impatient.

Jenny's verdict-all normal reactions. BUT we needed to push those fluids to avoid dehydration. She was not concerned about food at that point just fluids. We needed to focus on that priority. Seeing as it was Thursday when I spoke to her she told me if he did not have a urine diaper the next morning to bring him in for fluids. I was to call her either way. Well, that nite we were so nervous about not producing a urine diaper for the am that we used to a syringe to force half a cup of juice into him. Within five min he vomited. I called Jenny to report he did have a pee diaper when he woke but told her about the vomit. I guessed it was our doing. She agreed. That belly was not ready to hold it when so nauseous and we needed to accept that sips all day long were good enuf. Vomit only made us take steps backwards. She was so good with me on the phone. She understood my frustration but offered me solutions. She said to monitor him over the weekend and we would give him fluids no matter what on Monday. It def helped that as I was speaking to her G asked to sit at the table w T and eat yogurt just like big bro. He then drank on his own. She was pleased to her it.

I only wish the rest of the day went as well as that am. His appetite went back to one or two bites all day. But I was able to bribe him into sips. He could not have his pillow or blanket til he sipped. This was the only thing I could use as motivation. If all he wanted to do was lie on a pillow and some ratty afghan then so be it, but he WAS GOING to sip his way to comfort. It worked and he cooperated. THAT is how tired and drained he was.

It was also during these past 3 days or so we noticed him dwindle. All of a sudden he seemed to look like skin and bones. Those muscles n leg meat we bragged about back in June had disappeared. So fast. We were taken back. Especially when everyone warned us that the steroids he is on would cause a ravenous appetite and we would have to monitor his intake bc he would beef up so quickly before our eyes. That is what we were expecting. NOT the idea of being able to feel his butt bones and skinny arms forcing us to be cautious when we lifted him. He felt so frail. We had to drop from a size 4 to 3 in diapers (and to think we were so excited when he finally reached a 4 mos ago!). I could only find 3-5 pairs of shorts that didnt literally drop off his waist when dressing him. He was fitting into 9-12 mos t shirts and 12mos onesies to sleep in ( I kept putting him in onesies bc he would put his hands down his pants and we sure didnt want those germs getting to his mouth. It was bad enuf we were concerned about his thumb sucking and germs that I put a bandaid on his thumb to keep it out of his mouth. It worked. This habit became really bad when he was in the hospital seeing as it was the only thing that comforted him while being examined). I observed that the width of his bicep was the same as Caden's.

So once again I called Jenny. She told me that this is the exact reason why they weigh him every week. They have a percentage they go by to determine when he would need nutritional supplements (dietary changes or IV intervention). They were not concerned as of last Monday and would have told us then. We didnt notice this body frame on Monday. It was literally the past couple of days. She mentioned that dehydration and loss of appetite can have alot to do w it. And the fact that he is not active. Lying on the couch was not the best for this factor but you cant push someone who doesnt want to be pushed right now. We needed to respect the pain he was in and do what we could when he was able. It all made sense to me. I just told myself that any lil opportunity that presented itself for him to move or walk or anything I was gonna take advantage of it.

And I did...

• if he wanted a snack he had to walk to the kitchen to show me what he wanted.
• if he wanted milk he had to come pick the cup out
• after we changed his diaper in the am (so glad I didnt go hard core on potty training like I had intended to or I would be dealing w major regression when we get past all this) I had him put his clothes in the hamper and gather his day clothes from the night stand like he always had
• I still had him dress/undress himself as he did in the past (as best as he could w courtesy to his strength level on any given day)
• he still had to feed himself
• walk to any given item he was interested in

I just kept trying and of course on bad days I watched what he could or could not handle. But I wasnt going to give up. He needed to move that body and work those muscles even if it meant walking from point A to B only twice a day. At least he wasnt on the couch or bed w out any movement at all.

That Saturday was a lil better. His appetite was decent and his mood was perkier. Some smiles and laughs but still a lil off. But the important thing was he was urinating more often and I was not as concerned as I was Thursday n Friday. It was a tiny relief for us.

Sunday was GREAT! Now great is all relative these days but here is what he did. He woke in best mood. So many signs of the old G. The B.C. (before cancer) G. My lil sushi. His breakfast of choice was a corn dog (we were moving up in the world and past regular old hot dogs ). He ate most of it. Then he overheard (that boy has always had super human hearing skills) Charito and I discussing the list of errands he n T were to complete that day (another way we gave T his own special time w each of us were these lil outings-my boys have always been awesome shoppers). G immediately asked to go outside. I jumped at it. This from a boy who hadnt left the couch since Thursday. He asked for his clothes and shoes. I figured this spurt was not going to last long, maybe 15 min, so I took him out front for walk up and down the block. He began to whine. HA! Boy was I fooled. That lil rugrat figured out Charito and T were leaving the house and he wanted to go, too. Where could he go?! Where could I take him?! He was still neutropenic and it was the weekend. What place is NOT packed on the weekends. But he was persistent. He started crying, "Go car now. Please, mommy." It was breaking my heart.

It hit me! Mcds drive-thru. It was the best I could come up with. I mentioned it to him and he lit up like a Xmas tree! I poked my head in and told Charito to hold off for a bit while he and I ran over there. We entered the van. He was so excited. It was too funny and adorable at the same time. He kept repeating, "Mommy, Going to Donoowwwds!". Repeating it as if to confirm this wasnt a dream. He was actually out and about, right mommy? He told him he wanted chicken n fries. I bought him a shake, too. He even told me we needed to get something for daddy and Tis Tis (Triston). That is when I got teary-eyed. I was finally out again w my baby boy and he was his usual affectionate self -remembering others along the way. He told me "luv u" over and over and I gleamed. It was the BEST ride to Mcds I have EVER had in my life. I dont care if it was just the drive thru. It was 20 minutes I craved w my boy out in the world for over 3 weeks and I cherished every minute of it. Did I despise the fact that we couldnt head to some awesome park or museum, of course! But I have learned rather quickly that we have to accept the little moments as wondrous moments. They are all superb in their own right. I am truly grateful for them.

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!