Our first week of "outpatient treatments" and home

Sunday, Aug 8

The nite before I called my dad. I needed to hear his voice from less than 12 hours away. He was flying back to Arkansas today while my mom stayed behind. I am STILL a daddy's girl. He would return Thursday for the drive back w my mom.

We made today as normal as possible. We checked his temperature at least 3 times that day. We wanted to get in the habit of that. Anything at or above 100.4 called for an immediate visit to pump him w antibiotics regardless if he was showing signs of a cold or virus. Taking no chances.

Other rules and restrictions that were part of our life:

• if he looked sick at all call them (umm, he is sick-how will I know?) They told us to look for lethargy, pale lips (um, my kids are caramel colored-how will I know? His lips and gums would turn white)
• bleeding, new bruises, blood in stool or urine
• poor urine output
• mouth sores or thrush (very common)
• constant vomiting or diarrhea
• constipation
• let him be as active as he is tolerable to
• watch for redness or swelling or heat spots near his port
• bleeding gums or teething or tooth loss
• no baths 1-2 days after a bone marrow or spinal tap
• do not give him any medications without consulting w them first
• no home repair or wet basements. When we clean he is to not to return to the cleaned room for an hour or more
• when he is neutropenic (http://en.wikipedia.org/wiki/Neutropenia) -low immunity and very vulnerable to bacteria and viruses causing more hospitalization- he is to avoid crowds (malls, movie theaters, museums-all the fun kid stuff in my opinion)
• and of course WASH HANDS, HANDS, HANDS. To all people who enter our home or he is around.
• no raw meats, fish and wash and skin all fruits n veggies

This was all on top of not knowing when the "things cancer does to you" would start appearing. It had been a week w one chemo treatment and he had no signs of nausea, low activity, or significant drop in appetite. They were impressed. We just felt like we were waiting for the shoe to drop. When we left on Saturday his WBC was 3.9. Low compared to the average but still what they wanted to see (gosh, remember when that number was 350+?)

But overall we had a nice Sunday. But stayed low key bc we just felt on edge. We watched movies and snacked and of course-played trains!

Monday, Aug 9

Because we didnt know IF and WHEN G may lose his hair my WONDERFUL AUNT CANDY came to our home to give the boys the haircuts they were scheduled for the week prior. The boys call her AC. She is like another grandma to them. She has done my hair since I was a baby and now takes care of my fabulous boys (including daddy). She is amazing and her shop is out near Schaumburg if you want to go see her!

So she and my mom came to visit. Charito and I decided we would cut the boys really short like a buzzcut. This was more so for T. We didnt want him to possibly wake up one morning and find fuzzes of G hair on a pillow and be apprehensive about it. We thought traces of hair would be less shocking than chunks. Again, this was us guessing and assuming what it might be like if it fell out at all.

THEY LOOKED GREAT! I felt bad for G tho-he was obviously still a lil sore and was forever scarred when it came to be touched n poked and this was the first time he whined and cried EVER during a haircut (which he's been getting almost every 3-4 weeks since he was 10 mos old!). They ROCKED their new dos.

Tuesday, Aug 10

Our first outpatient treatment day. It was at 9:30 am. G was scheduled for another bone marrow and spinal tap to track the progress of chemo and determine if cells were multiplying. I was cool and collected that morning. I was in "war mode". Charito and I left T n C behind and headed off. G was in a good mood. We were told to go to PICU first. Once we arrived up there we saw Dr Kwon in the hall and he asked us what we were doing there. Apparently we were supposed to go to clinic first (this is his office of treatment in the PEDS department above my normal pediatric visits). There was already so much confusion seeing as we had 3 different people tell us where to start our day the Saturday before.

We headed down to his office. We entered that office and were told we needed a referral. What? No one mentioned that to me, seeing as Kwon was now our dr. I didnt get it. So, I had to go down to Belmonte's office and get a referral on the spot. They gave me some hassle about it. There was confusion and eye rolling and questions. I saw it was the first time I had to say it aloud "leukemia" to strangers. Belmonte was not in. I just started crying. I looked like a complete fool. It was so disorganized. A day that I thought I could control and manage as the first time a mom of a sick child and I was already failing. My tears must have freaked them out bc before I knew it they were bringing me water and telling me a nurse would take care of it immediately. They even called upstairs permitting them to start the process and they we email it to them within the next 10 min. I apologized for my crazy behavior and walked out feeling like such a idiotic child. I was depleted and G's stuff hadn't even begun.

I entered his treatment room (looked just like his usual ped exam room) still crying. Charito's eyes just melted for me. He knew how I was feeling and why.

Our nurse (we discovered is one of a constant 3 ) was Jenny. She was so patient w us and explained everything so clearly and what type of routine we would go thru every week. They accessed his port and drew blood. No one mentioned to me that I needed the prescription for EMLA ( a numbing cream/"magic cream") to be used that day. I was supposed to place this on his port with a bandaid (tegaderm-film) over it for at least an hour prior to our arrival. That way the prick into his port would be nothing to G. Yeah, failed that task, too. I was so frustrated w myself.

They pricked his port and drew blood. Within 20 min Jenny came back w the lab results. Hgb was 10.8 (good it was greater than 8), platelets 59 (greater than 20 was ok) but he was still neutropenic bc his ANC level (amount of neutrophils) was 360 and they want it above 1,000. The numbers did make it okay for us to head to PICU for the bone marrow n spinal tap (Lumbar Puncture - LP). We were familiar with this procedure. We saw familiar faces that recognized us and G. It was a surprisingly nice feeling.

They gave him his sedative and Charito and I headed down the hall for him to wake up. I still cant watch him "fall asleep". I walked out seconds before he closed his eyes. Less than 20 min later Dr Kwon greeted us again and told us he would have those numbers for us next Monday (oh yeah, we had the chance to move our treatment days to Mondays or Wednesdays instead of Tuesdays. We chose Mondays bc there are morning n afternoon hours that work better for us).

We watched G wake up and he was ready for more movie watching and lunch munching while his chemo drugs were pumped thru his IV. I cant recall but we may have received a transfusion that day also. We were home by 2 pm.

Wednesday, Aug 11

G was missing Gramma and Grandpa and Auntie Amy that day. He called them on the phone. It was too cute! It was the longest he had spoken to anyone on the phone before!

Thursday, Aug 12

Still going strong. His appetite was limited but he would eat one big meal each day that week. He napped longer but was playful and silly. His movie addiction continued (thanks to our hospital stay) so he expected every movie he requested to be played. It was like I was teaching sharing techniques all over again.

I missed my mom even tho she was 30 min away. I called her to vent how we had barely spent time together in 2 weeks. She felt the same. We had our talk and our tears. I put the boys down for naps (including myself ) and by the time I woke my mom called to say she was on her way. My mom is awesome!!

By this day you could tell some things made him tired more quickly. He would eat, then rest on the couch, then play for 40 min and take a catnap, then snack, then rest. He was low-key.

Friday, Aug 13

He pretty much continued the same pattern. We were beginning to notice he was not a happy morning person at all! It would take him at least an hour and a half to perk up and even agree to drink anything. His appetite was minimal but w the frequent consumption of pediasure there was no cause for concern. They explained to us that the medications he is on (a separate post I will create soon) will alter his taste buds and toleration of certain textures. Foods he used to like he may no longer and vice versa. All he wanted to eat so far was fries and hot dogs and anything salty.

My parents were leaving later that day. This was also the completion of Charito's first week back to work in 2 weeks (week 1 for Cadens birth and coming home, week 2 for this junk). I figured since G was in a decent mood once he shook his crabbies away it would be no biggie to head to Roselle for a couple hours and still be home by nap time at 1 pm ( a pattern I was beginning to see in him for his long 3-4 hour nap of the day). It was my first time loading up 3 kids to go anywhere. I felt out of practice being in and out of the hospital w no kids to tote around. It took me awhile but I got my act together. I brought Mcds for everyone and enjoyed my last day with my parents and brothers and Amy and Ayden til I dont know when.

Saturday and Sunday

We filled our days with outdoor play in the yard, car washing, and board games. G's energy level was starting to slow down but not to the extreme they had warned us about could happen. He was still his happy self. Appetite was inconsistent. This whole week I had kept a daily journal documenting what and when he ate/drank/pooped and peed. I wanted to track the down hill slide when it would hit.

It is ironic to me in retrospect that we stayed so "local" that week bc we were unsure of well, everything. We had some visitors but limited it each and everyday. I wish I had had some insight into the upcoming week's behaviors and changes bc that is the week I truly felt in "lockdown". I only called the dr office once that week (on Friday) to be sure the loss in appetite and slow of activity was normal. Jenny assured me all was "normal". Normal, for a child w cancer ,that is. Yup, this was our "new normal". Yippee! (INSERT SARCASM HERE!) She reminded me I was asking all the right questions and observing all the right things. She told me I was doing great. Doing what I should be doing. That felt good. We would see her on Monday when we started it all over again.