Week 25

Jan 24-Chemo Monday
I was prepped for a transfusion day, just in case. Relieved to know it was not needed. His counts are holding strong.

WBC-1.87 (went up a tad)
Hgb-9.1 (came down a bit, but tight number considering what his body went thru last week)
Platelets-433 (went up!)
ANC-690 (was 580 last week, so nice to see)
Weighs-20.7 pounds (Gained 5 oz in a week. Think it was the corn dogs?!) and 33 1/4 in length

All the descriptors of his past week that I gave to his drs today 'are to be expected'. Nothing out of the ordinary. They were pleased he was eating n drinking. Number of naps did not surprise them. It is what this phase is all about. Very similar to flu -like or arthritic aches n pains. Thank you, steroids. In fact, my rundown of Thursday thru Saturday was assumed to be what Charito and I were thinking as well-a dip in platelets. But they are looking good today (all relatively speaking of course).

The best news of the morning-we can take G to see Disney on Ice this Sunday. Even tho he is borderline neutropenic they all agreed he needed to get out. Why deprive him if he is not vomiting, bleeding or diarrhea. They probably also figured he will be in access mode all next week which really limits his physical activity, so why not?

But here is a lowdown on our morning-
Grayson and I were pretty restless last night. We were up just cuddling from 1-3 am. He has been starting out the bedtime in his own bed for weeks now but by 3 am or earlier he is usually in ours. This phase has led to a light sleeper. It was fine with me last night bc I was really concerned about his poops.
WARNING-I AM ABOUT TO TALK POOP-WHAT MOM DOESNT? IT IS GONNA GET GRAPHIC.
He ate so much cheese (did I write about this already?) Thursday and Friday that he was REALLY constipated Friday nite. It freaked us out. He was really straining and his Saturday poops had traces of blood on the outside and when I wiped. You can't help but wonder if there is a tear or just irritation from the firm poops. And if platelets are low whatever the source of blood, it will continue to bleed. Then the Miralax didnt seem to kick in until Saturday evening either. Needless to say, he was very uncomfortable. Small but + fist-sized firm poops= uncomfy boy. There was no missing the signs that he was ready to poop bc he would yell for us to make it an easier process. To ease his positioning we put him on the toilet to help him bear down and he pooped in the potty! A first! He seemed excited. But unfortunately bc he is not craving chocolate this week he could have cared less about his reward-M&Ms. Too bad. But since then he has been willing to sit and try w each new poop, even if he has already done most of it in the pull-up. Oh that's right-as soon as he pooped in the potty the first time I gave him a Cars pull-up and he was MORE excited about that than the chocolate. So, I am riding that wave for now. Whatever gets us closer to it. Like w T, I am taking his lead and running w it. Think I'll be picking up a potty chair for living room so he can make the moves on his own, and it will be easier on any babysitter rather than rushing him upstairs in time (we dont have a bathroom on main floor). We actually witnessed a huge tantrum bc he wanted pull-ups on all weekend. I'll take it!

We were up early dealing w poop (Miralax kicked in big time) and whiney SHRIEKS for corn dogs. He downed that thing like nothing. He should be the new contender for the amazing hot dog eating contest! He was more than upset when I told him he couldn't have cheese. That led to other whiney statements...really anything he could think of. A different hat, bringing random food items to Princess Jennie, wanting Aerum to read him a book, etc. Anything he could think of he whined and demanded occur immediately. Even 50 seconds in the microwave for the corn dog wasn't fast enuf! These are my mornings!

Triston really wanted me to take him to school today. So we rushed around (packing n such in case there was an all day transfusion), I dropped him off then headed to Dr Kwon's. The whole ride there G hunted down trains and looked for Mcds signs. He was in a good moood. I put a mask on him when we pulled into the parking lot and we took a delicious break at the Au Bon Pain bakery inside the hospital. He wanted to get Princess Jennie a cookie and I needed coffee! Harlem Ave was a mess and I was not going to try and truck my way to our local Mcds and try to explain to G that they weren't making chicken nuggets yet! He eyed a spinach filled croissant and pointed out the coffee section to me. The kid know the place by heart. I bought him his "sandwich" and we mosied on up to Kwon's. That is when the crabbies returned. He repeated he wanted to go home. I had to carry him in. He really has caught on and can reach into himself to determine where he would rather be when not feeling up to par. So sad. But once we got in and saw Jennie n Aerum he bucked up and did his job. He devoured that croissant filled sandwich. I even tried to get him another one after clinic and they were sold out. Then he curled up on a chair and rested while I vented to Aerum about some of what has been on my mind. It helped a bit.

Today was just a CBC, blood draw. I just needed to be prepared for a possible transfusion or a chest xray bc of how gunkie his cough got over the weekend. I swear, I feel like every 5-7 days his cough is gunkie again. Asthma + leukemia+winter=pneumomia fears. I had to increase his Pro-Air ( albuterol) to manage it. No wheezing detected this morning. Kwon says he sounds clear.
But we did have a new "thank you, steroids" moment. It took a while for a blood return (when they use the syringe to extract the blood to be examined for counts or to check the line for clarity). His line was flushing fine but it took several pumps to extract blood. And when it did come through it looked foggy to me. Jennie explained it was bubbly bc of all the pressure she had to apply to get it out. She immediately asked if he had finished up his steroids for the week prior. I replied yes and it was an aha moment. You see, the nurses have a theory. With the water retention and swelling that the steroids place on the body's joints n mucles they have noticed that the swelling effects the whole body as well. Thus internal swelling along the port line, arteries, you name it-effects extraction. It is just slow moving and she tells Grayson "we gotta wake up your port". It is not a stressed swelling that I would notice along his port site. Just more little things that can go on internally. No big deal. Just made me think of last night when he woke n told me his "port hurt". I checked it and it was red bc the metal button on his shirt was lying right under the port along the metal lining. We changed his shirt and he said it was all better. Jennie assured me there was no connection w the blood return. Just annoying that's all.
We took out his needle and attempted to leave the exam room. He insisted on being carried. I insisted on finishing my coffee before I carried him again. Doesn't he know by now that mommy always wins these battles. I understand you are achey and playing n running is not your thing this week but you WILL do some walking. He cried the whole way through the hall. Kwon just laughed. Once he made his trek I picked him up for the remainder of our trip to the car. That is all I was asking of him. Done!

Next Monday is quite the day. It is our halfway point in Delayed Intensification. That is pretty big. Even bigger-it will officially be our 6 mos Leukemia anniversary. All I can say to that is WOW. I won't even get into the sad and happy of that. Later.

He is scheduled for a LOOONG day (if counts hold strong we can proceed that day). He will get a IT MTX (spinal of methotrexate); push of Cytoxin and all day flush to check urine output (we will be there to at least 4:30 pm while he is pumped w fluids to flush out that cytoxin); a push of Cytarabine (AraC). That AraC means he will come home with his port in access mode (the needle still in and tubey hanging out). I will have to administer the push of AraC each night the rest of the week. We will also meet our new drug-TG (Thioguanine-an antimetabolite that resembles normal cell nutrients). The side effects are not fun to read about and let's hope he tolerates it. he is on it for two weeks straight. Anything new is always scarey. But no more steroids the rest of this phase, one more PEG injection, two more Vincristine pushes, an additional week of AraC and one more IT MTX. Seems so quick when I tally it down like that. Maintenance is right around the corner.

So, what do I hope for for next Monday? That his platelets are over 75 and ANC over 750 so we can proceed w the long day planned. No stalls now.
And my hopes for this week? His appetite continues. No more bits of blood in his stool. No constipation. The cheery mood he is in as I type this remains (for most of the time). I get (at least) my first set of report cards done without losing my insanity. And that he remains "well enuf" to see Disney on Ice. The last time we were out as a family was Christmas day and the time before that, maybe November? I would have to look it up. The time before that Sept 4. With so few and far between it is easy to remember the mixed emotions on those days. It'll be nice to spend it with family, too. Auntie Amy (baby belly Jack), Uncle Neal and Ayden are joining us. Keep your finger crossed for us, K?