A great Monday (finally!)

Monday, June 13th

Today marks 45 weeks into treatment.

I am super tired today so this post is gonna sound all discombobulated...

We were scheduled for spinal today so Grayson was cut off of all food n liquids late last night and all this morning. I pictured a horrendous morning seeing as it feels like mos ago we had to do this ritual. It was only the first week of April but still. I lost the hang of it all lately.

Grayson was great about it tho. Actually, he was so cool about it that he had me worried all morning. He was TOO chill but still his goofy self-all from the comfy spot of the couch. It was a little wierd. Not that I wanted a tantrum but I got no refusals and that is odd for a non-stop eating machine lately. Just got us wondering since he was chill and halted that enormous appetite of his after 2 pm yesterday. So the kid had nothing in his belly since 7 pm last night. Then before he went to bed he was given a full tab dose of Mercaptopurine. He slept well and was in a good mood this morning.

So, even though I was wondering if anything was brewing in him we took off to clinic in good spirits. I kept trying to steal kisses from Triston and Caden while Grayson was the one telling me to "let's go see dahcter Dell!".

When we arrived he actually wanted to be carried. Odd again. He usually is trotting along in full speed, happy to be out in the world even if it is LGH world. He is not a picky guy!

We walked into clinic to a few surprises! We had Dr. Goodell again! Princess Jennie is back! And Aerum was in! She didn't think she would be in clinic last we spoke but wallah, there she was peeking around the corner. And then Jennie ran to G for great big hugs! It was SO great to have her back. And the pics of her daughter are gorgeous! When G n I slipped away to go pee before "poke on the back" (spinal) began we returned to Areum knowing our boy! The portable tv was set up w Thomas ready to go. She is THAT good!

By the time G was accessed and draws were complete he fell asleep in my lap. He was out to the point we didnt use as much sedative as usual bc he was on his own auto-sedate mode. He was never aware of beginning or completion he was that tired. It was such a quickie spinal w/out our usual roles of reading books and telling jokes ( injection into the spinal fluid of Methotrexate and draw of spinal fluid). Goodell and I even snuck in a nice conversation together. I have really enjoyed the last few weeks with him. I love Kwon but again, they each are perfect in their own ways. And these past few weeks I have needed Goodell's humor, sarcasm and easy breezy explanations of things. It has helped make that tornado feeling a little less dizzying.

When it came to get him waking for final vitals and check for stability he was hard to wake. By then his counts came in and we had our mystery culprit-low glucose. Not dangerously low but enough to not be aroused easily. I couldnt even shake him awake w tickles. The plan was to try and get some juice into him but we were afraid he'd choke on it. So they hooked him up to some dextrose via port and within 15 minutes he was fluttering those eyelashes asking for food. His low blood sugar may have accounted for the crabbies and chill mood the second half of yesterday-who knows? Could have also been the week catching up to him? Who the hell knows anymore!

Regardless, he woke perky. He was goofy, thirsty and hungry. He asked for all of his gals while we got ready to head out. Areum helped him pick a toy from the treasure chest. He was feeling great! I was feeling great! It was so wonderful to have a back to normal clinic visit w out the latest fever, rash, pox and virus talk. It was to the schedule, just the way I like it.

Counts were great!

Hgb rose after leaving the hospital a 12 days ago at a 7.4 = today 9.4. All on its own w out a transfusion

WBC 3.95

Platelets 357

ANC 1, 960

And we are back to our normal everyday 100% medication schedule! I know it sounds silly to be excited over such a thing but it's anything to get us closer to the end.

Prednisone 2x day for the next 5 days

Mercaptopurine every night (1/2 tab M-R, 1 tab F, Sat, Sun)

Bactrim M and T

Methotrexate (oral) every Monday

Grayson weighed in at 22.5 pounds and 33 3/4 inches. He has grown half an inch since late 2010.

He was in such a good mood after downing a whole apple juice and some yogurt raisins that we decided to venture out after clinic. It was almost 1 pm and we dropped by Trader Joes. I asked him if he wanted to go shopping and he squeeled YES. We had fun. I was on a mission to find healthier items to boost this boy up. As long as he has been eating almost anything in front of him and steroids were back on the menu this week I had the green light. I had a great discussion w Barb the dietician about some options and Trader Joes was my inspiration. I found some awesome goodies! Including the Bob's Red Mill Whole Ground Flax Seed. I am about to get sneaky!

It was all fun and games until I smelled somthing. I noticed G leaning forward in the cart. "G are you going poop?" I asked. "No...I mean yes" he responded. WHAT?! Stupid me forgetting all about the dangers of post spinal diarrhea! I had vomit on the brain not diarrhea. We raced to the bathroom, cleaned him up and got home as soon possible. He has been going every 2 hours since but it is no longer a watery consistency. And now that I think about it, he had some loose stools yesterday, too.

He remains in a great mood even now (7:30 pm). We played in the yard before dinner. It was a nice end to a hectic day.

Triston was sent to bed early for bad decision-making (like locking me out of the house and thankfully letting me in as soon as I yelled at him to do so). Caden bumped his lip on the sidewalk trying to chase Triston. He also mastered entering and exiting the fort toy on two feet all by himself and absolutely loves the slide! G continued to give me some mini heart attacks while insisting on climbing the walls of the fort (and gracefully I might add). It brought back of memories of him first accomplishing that skill weeks before diagnosis.

It was a happy Monday. A happy Chemo Monday. How many people can say that?!